I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: Meinuk on October 02, 2007, 02:20:12 PM
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So, in the spirit of EPOMAN, I've decided to try and write about my Nxstage training. It has been a long time coming, and I have yet to actually sit in the little training room at my unit and start, but here is what has happened so far. (I am posting day-by day posts but am also cutting & pasting them into this post so that they stick together) Mods I hope that is OK - PM me if not.
January 2007 - I started dialysis with an 18 month old fistula. It is deep and twisted. (insert ironic grin here) I have many infiltrations, pressure issues etc. It is a crappy spring. Because I live alone, I was told that I can't use NxStage. A few months later, I meet with my Nephrologist, and he gives me the green light for home hemo on NxStage. Whoo hoo. But, because theirs in the only center in NYC that is offering NxStage at this time, he tells me that he does not want me to be the first person trained. He said Fall. I said OK.
May 2007 - the only tech who can stick me went on a 10 week vacation. Many infiltrations, clotting and general yeechiness. I have a perm cath placed.
Late July 2007 - Ariel is back from his vacation, and we are using my fistula again. Perm Cath removed, and we start to talk about button holes.
Late September 2007 - we start my button holes. What a difference - very little pain, and we are still using sharps. I meet with the NxStage training nurse. She is concerned. She voiced her apprehension via a phone call, and I agree to meet with her. I meet with her face to face. She starts with her speech about how a nephrologist has a different view of home hemo, and she is concerned about the practicality of me being alone. I quickly allay her fears, and also comment that I don't plan on spending the rest of my life alone >:D After a short conversation, she was satisfied that I am competent, and realistic. And, thanks to this IHD, pretty well versed on the ins and outs of Nxstage use. As a matter of fact, I clued the nurse manager in on a few things. (Thanks EPOMAN! We miss you every day)
This all brings us up to tomorrow - I am going to try and stick myself. I can't wait. I went to sleep last night thinking about tape, and prep, going through the put on stage of dialysis. (Thank you to Bill P for putting the video on the web!)
And in the next couple of weeks, I'll be starting my official training. I'll update this thread as things happen.
So, hopefully - soon, this whole dialysis thing will just be a few hours of inconvenience each day - dealt with in the comfort of my own home, in my own chair watching my own TV or surfing on my own computer.... (do you sense a theme here? I see it as a chance to get part of my life back!)
Well, that is my excitement for the day!
October 3rd - My First Self-Cannulation
So, tonight, I stuck myself! I had quite an audience. Some techs had to turn away. (Mary-Ann!) And my primary nurse got all squeemish when I scraped off the scabs. They all thought that I was calm cool & collected, but my BP told the truth. 174/85 My normal predialysis BP is 135/74.
I used sharps, and there was no pain. We had to adjust my arterial, but that was normal for me. What a relief! From now on, I'll stick myself, and on Friday, I'll try take off for the first time. Next week, I'll use blunts.
So, with all this practice, I should be almost a veteran when I start my NxStage training after Vegas.
Monday 10/15 5pm - after no sleep in 24 hours. (Left Vegas, got to JFK, went to work, went to dialysis)
My last week at the unit. My nurse shunned me. I got my needle kit, washed my arm, grabbed a glove, sat down, prepped my tape, opened my bandaids, wiped betadine, then swabbed, opened my needles, took a deep breath and stuck my arterial - Bandaid and tape, checked flow - then stuck my venous - repeat same. The tech put my lines on the machine. PERFECT! My nurse walked in looked surprised, and then declared that I was ready for home hemo! All the while, my BP 123/80 Bye bye anxiety!
My first needle sticks unsupervised. I could never have done it so easily without everyone on these boards. Thank you for the knowledge, and the encouragement.
Tuesday October 23, 2007
Goofynina's 30/10 Birthday and my first NxStage Training session… A good day for all!
Let me start by saying that I never would have thought that a day of Dialysis could make me happy, but today, I was happier than I have been in a long time - (well since Vegas!)
I do have a few disclaimers though - which need to be said. My Training Nurse & I were quick to realize that this was not going to be a "from scratch" training session. I started my buttonholes in the unit and had already been self cannulating for a month. Thanks to EPOMAN, Black, Adam W & the people on these boards, I was very familiar with the concept and application of NxStage Therapy. (I oohed & ahhed when I recognized the chicken foot and the peanut!) And thanks to my college stint working at a dialysis unit - well, I was well ahead of the curve.
I am typing this later Tuesday afternoon, and there was so much to take on board this first day that I need to say that it is incomplete and there may be important steps missing - but I just wanted to write about it while it is fresh in my mind.
I really do think that home hemo is the future of dialysis - and really, if I can do this - then I hope that you can read about it, become familiar with NxStage and it won't be so intimidating. Overcoming one's fear is often the hardest hurdle - Gaining knowledge is doable - being in fear can be crippling.
So, at 9am my day started at the "at home" section of my dialysis unit. Before I left home, I made sure to eat a real breakfast and I drank enough coffee to get me through the ensuing hours.
H. My training nurse had the pureflow set up and my machine was sitting there waiting for me. She pointed out the basics, opening the machine - turning it on etc and then she showed me the tubing kit & artificial kidney. I was surprised to see that it was mounted on a plastic cartridge. (I was expecting to have to thread lines…) nope, NxStage made it pretty simple. The whole idea was to get me on the machine. H. showed me the pureflow and we checked for chloramines (sp) - if you are a Star Wars Fan - all I could think of was mitoclorians - Does the pureflow have Jedi Powers??? Maybe not! We passed the chloramines test and that was that.
I learned first hand about spiking the bag and the "snap & tap" - getting air out of lines. H. discussed the display, and toggling between displays - we primed the machine 18 minutes - during those 18 minutes, we had a visit form a referring nephrologist - he wanted to check out the machine and he had a few questions. I had all I could do to keep from telling him to just log on to IHD. He had some of the same questions that I had. How to dispose of medical waste - and what was the artificial kidney made of…
I then zoned out for a few minutes and checked my e-mail on my treo. (really I was concerned with work! I wasn't PMing Susie a happy birthday message…) The visiting Neph left and it was back to me. H & I discussed setting up the run - Dialysate Pump Speed , ultrafiltration etc. Color Coded tubing etc.
Today, I really was just the observer (there is a lot to learn) Then we were ready to put me on the machine. I washed my hands, got my stuff together (blankie, water et al) and set up my cannulation. H. watched me and helped me tape - my arterial is bizarre and we have to "pillow" the needle. I am used to it now, but I think that it seemed strange to H. My arterial flow was good, and then I hit the venous. No problem. H. Put me on the machine and soon, I was dialyzing away….
During the run, we signed paperwork (really, the training nurse has to agree to a code of conduct as well), I was given my plumbing kit for my pureflow, we talked about my dialysis journey to today and H. gave me a rundown of supplies that I would be given. That was where I strayed off course… H. told me that I would be given a centrifuge to spin my blood for blood work.
My heart melted, because I remember reading about EPOMAN wanting to avoid needlesticks and even offering to buy his own centrifuge, and he never got one. That set me off and I started to talk about IHD and the people who have influenced me. I told her about EPOMAN, and I talked about Bill Peckham & his boat trip with NxStage - She had heard of IHD but didn't know that EPOMAN had passed away. Pretty soon, we had a "2" notice and it was time to check my BP. (Vitals check every 1/2 hour)
There was a lot of paperwork to sign - and since I love dissecting contracts - I found a couple of loopholes that I am going to try & exploit. (now to just get a copy of the contract) What shocked me is that I am expected to get renter's insurance to cover the equipment. Damn, one more expense. Oh well, it is worth it.
One other observation that I had today is… that on home hemo, I actually feel like a partner in my medical care. The Neph & H & I discussed my run, my blood work my meds and options for the future. For the first time in 10 months, I feel like I am control of my health. I'm not just walking into a unit and sitting in a chair.
The run was almost uneventful - I had an arterial air alarm, and learned how to aspirate the artificial kidney. All in all I processed 77 litres of blood and took off .6 L of fluid. I was overjoyed to watch an Infection Control Video (insert sarcasm here) and I can unequivocally say that I really like my training nurse. She is professional and smart. It's gonna be an interesting few weeks! Oh yeah, and the training manuals are as big as biology texts.... Will I never get away from notebooks???
The adventure continues on Wednesday.....
Wednesday, October 24th Day Two
Well, if today's training session could have a theme - it would be all about relationships. I was running late - my favourite bodega was closed, and I had to search out coffee. I found it and was 15 mins late. When I walked into the room, there was a present waiting for me in my chair, a clinic bag filled with branded goodies. Ahh marketing - anyway, I always like getting prezzies, so I was happy (and I had coffee).
I said thank you and we quickly got down to business - set up and put on. A refresher on what goes where - I stuck myself with no problem (on Monday, I switch to blunts & I'll use bags - not the pureflow) H. had a training sheet that she used as a guide, and she checked off thing as we covered them. The joy of all of this is that I am (admittedly) a workaholic. Once we had covered a section on the list, I would check my work e-mail and send what I needed to send. H. gave me plenty of "rests" to switch my focus, and then she brought me back to alarm and "what if's". I think that today we really found a cadence that will help my training be smooth and effective. I can train and I know that I won't be worrying about work because we have the rests built in.
And the best thing is that the training seems to be tailored to my aptitude. I really appreciate that.
No, why relationships as a theme? Because at one point during the run, H. Sat down and talked reality. Her role as a training nurse, the support system, calling NxStage vs calling the unit and the importance of not losing blood if you need to trouble shoot. (If you can't get through to NxStage or it is going to take too long - do a manual return) It was after that conversation that I started to really talk to her about my plans for the future. Going home to London, finally getting to take the aborted vacation that I had planned in January (driving from PA to Seattle via the northern route -dialysis ruined that one!) She was encouraging. She even talked about "If I need to take a break from the responsibilities of home hemo" Talk about saying what I wanted to hear!! Today I was officially drinking the koolaid. I could have easily been a sales rep for Nxstage and my unit. Dialysis is quickly becoming just a therapy and it is not going to rule my life or dominate my conversations (well... maybe on IHD it will...)
So, during my run, we chatted, I read two chapters of the training manual - I was visited by some of the techs from the in-centre side and... aside form being starving by 2pm (did I mention the importance of eating a good breakfast?) All went well.
We even wasted the balance of a pureflow sac and H. made a new batch to show me the process. As she opened the container that holds the sac, I remembered people posting about flooding and the sensor on the bottom of the container. - Really if I were in school, I think that the crib notes posted here on IHD really do give me an unfair advantage.. But you don't get graded when using NxStage - the ultimate grade is your health and freedom and on those counts, I am anticipating an A+.
Ok, I am signing off now, because my lunch was just delivered (green chicken curry - I'm sweating as I type!)
Thursday will be a new adventure!
Thursday, October 25th - Day Three
Well, you know that I was really high on how well Wednesday went.... Don't you know that will just reach around and bite you in the ass. Technically, it slammed me in the arm... For more detail - right in the arterial access.
Got in, I guided H. through the set up process, (using a cheat sheet) checked chloramines in the new pureflow batch, pressed go and started to cannulate myself. My arterial stick went in well, had a good flash, I taped it and moved on to my venous. Venous no problem. Then I checked my arterial. Nothing. Zilch. Nada. A big fat goose egg as far as blood flow. We spun and adjusted the needle a bit better. We taped it. Back to square one. I said time for a new needle. H. asked if she could try. New spot - not the button hole....
On that, I am leaving you in suspense - my ride just got here. I'll finish this up at home over a glass of wine. (I take no responsibility for my typos..)
Ok, I am at home now.... Bet you didn't know two hours have elapsed!
So, my arm is infiltrated. Hurt like hell, but I was able to cannulate on the third try via the buttonhole. To make matters worse, the first stick was probably ok, I clotted. If I had actually pushed my heparin bolus when I stuck the arterial - none of this would have happened. Live & learn.
The run was uneventful. We watched a video on cannulation and access care. I drank tea, we fiddled with the new electronic BP cuff that seemed to think that I was having a stroke... (my real blood pressure was 137/80 not 189/109 like the machine was trying to say...)
I met with the Neph and discussed vitamin D therapy and he wrote me a script for oral zemplar - we made plans to draw bloods tomorrow - aside from my arm aching it was a good day.
After my run, I went back to the unit to visit some techs and was introduced to a transient Dialyzor from Glasgow - my old nurse was really excited - she stuck herself using buttonholes. My nurse of course is now the expert on buttonholes in the unit - since I was the first. It was really nice to see progress - slowly, units can adapt.
Last night I re-read EPOMAN's training blog - how things change... I have high hopes for the future of dialysis - still even with my new bruise. And I still really am impressed with H. my training nurse. Sure, the extra needlestick hurt - but it just reinforced the knowledge that I have a normal appearing fistula, but beneath the skin it is a freakshow.... Hmmm paging Dr. Freud...
That's all folks - I am off to my wineglass and to see what TIVO has for me tonight.
What will Friday bring?
Friday, October 26 Day Four
So, now I have empirical evidence that I am feeling better. At 6:30am I heard water/rain, it was really loud. In two seconds, I knew that disaster was afoot. I got out of bed and went to my kitchen to see gallons of water raining down. I thought quick, gathered all of the tall kitchen garbage pails (3 - one trash, one bottle recycling and one paper recycling) and I put all three under the deluge - they quickly filled up - this was my 6:30 am start to 45 minutes of bailing and mopping - now, I grew up with wooden boats, and I am used to bailing water. But this was warm water - then I realized that it was shower water from the tenant upstairs - YEEEEECCCCHHHH.
All of this happened and I was not tired - my energy level rose to the occasion. Of course with all my yelling - the person upstairs didn't hear me. Finally, they turned off the water. Then I just started mopping. When I finally got the water mopped up and the last of the trash cans emptied for the umpteenth time - I jumped in the shower, left a note for the tenant upstairs, called my landlord and then hit McDonald's for breakfast (comfort food - coffee, bacon,egg and cheese biscuit & reangel) then go to training at 9am. I felt like a normal - not CKD compromised human being dealing with life's ups and downs. No depression (ok, some anger), plenty of energy and a healthy outlook. Win/win in my book.
At the unit, I told H. about the flood and then we got down to business. I showed her the rather impressive infiltration from Thursday - purple bruise top& bottom of arterial access. H. declared it TGIF (low stress day - no pressure) and I guided her through the set up - along with a newly hired nurse A. (the unit is growing the home hemo program) My needlesticks were smooth no problem. Friday was blood work day, we talked about what panels we were drawing for and we were excited to hear what my KT/V is and H. reminded me that KT/V is not an exact measurement - but we are hopeful - because if it is good and the results of my 24 hour urine (to be completed on Sunday-Monday) I may be able to be a 5x week Dialyzor (fingers crossed - I still have some residual kidney function).
After all that, I was on the machine using Pureflow. I am getting really comfortable with the set up process. Of course on Monday, we'll hang bags and use the heater, so it will be new. I had a visit form my old nurse Ariel. I really, really like him. Throughout this whole process, he has maintained a professional distance, I know very little about him - no real small talk - But, he showed his colours when he walked in to the home training room during his break, asked about my arm, and then straightened out my lines and taped them to my shirt. It was such a sweet caring thing for him to do - he didn't need to - I was no longer a dialyzor on his service - he did it out of habit & compassion. Next week, I'm bringing in cupcakes. (and I am so NOT the usual "bring food for the workers person")
Ok, so this love fest is so not like me - here comes the bitch.... During my run, the social worker came in to do my home dialysis "intake interview". Yes - that social worker. He sat down with a clipboard loaded with a few questions. Now note that this is my home unit for the past 10 months. Even though I am on a different service and in a separate room (located in a corner of the 30 chair unit) all of my records are on-site and the SW covers both in center and home hemo dialyzors.
He verified one emergency number. (which was strange, as I have 4 on file in order of priority/availability) I told him to look though my chart to find the list.
He asked my religious preference. I said none. He asked for my hobbies - I said endless. (no Susie - was not going to say "sex clubs" just for the shock value - I finally got this guy out of my face - I did not want to titillate him (shudder))
He then asked me if I have ever considered a transplant. That is when I just had to contain myself. "Yes, I considered a transplant when I was worked up at St. Luke's and put on the UNOS list in 2005. Those red top tubes that the unit is sending monthly to Rogosian are indeed for transplant tissue matching." He said "oh."
Of course he then asked if I have ever considered hurting myself or others. It took my all to not blurt out "I want to hurt you right now". I just smiled and said no.
And then the corker - "How do you think you are coping with being on dialysis?" - My answer "As well as anyone could." This was a 5 minute interview - frustrating but painless. And I understand that he was just doing his job and that my answers needed to be timely for the transition to Home Hemo - as I promised H. I was going to play nice with the SW as long as all interaction stays professional and in the unit.
He came in 10mins later - made some bizarre sycophantic statement about me seeming to be "smart and resourceful" then proceeded to parrot something that was totally wrong. He said "I understand that you've contacted ADT and they have a special dialysis "Life Call" service" The truth was: I had been discussing "Life Call' systems with someone, and reported to H. that I have only contacted one provider (in whom I was not impressed) - but plan on contacting another - ADT. (I need to have a life call button as I live alone) H. must have discussed this with the SW and he got it all wrong. When I asked H. about this, she just rolled her eyes.
I had a nice visit with the new nurse A. She was a in center hemo nurse in Puerto Rico. The stories she told me make me happy I live on the mainland. Artificial kidneys exploding during dialysis... Using old fashioned thermometers (we have the plastic disposable ones)...
Fluid Info:
Because I have a slight reaction to the dialysate - initially, we do a 1.5 litre prime, and because I am a clotter, we are going to integrate flushes into my run. (trying not to overdo it on the heparin - I was on 3000 units heparin and still the head wasn't clear after rinseback) Friday, I removed 1K which was my normal removal when I was in-centerer. I didn't feel dry though and it prepared me for a night out!. For 4 sessions, I dialyzed 77;78;77;79 litres of blood - so I am well ahead of my average of 96 litres x3 each week. No wonder I feel better. I know that this is setting the bar rather low - but I am ok with that. CKD is an uphill battle - I'll take anything I can get.
I took home my very heavy training manuals - so at some point today or Sunday I'll review chapters 3 & 4 and read chapter 5. (did I tell you I found a typo in the training manual - NxSatge - not perfect... I didn't get any bonus points though....)
In summary: One week finished. I feel familiar with the process & machine. I am comfortable self-cannualting (I still haven't successfully used blunts yet) Hopefully my labs will allow me to be a 5X dialyzor. Next week, after we do a manual (bags) treatment on Monday. Tuesday, H & I switch places and I'll do the Nxstage set up - she'll guide me. My first "hands on".
That's all from my chair on a rainy Saturday afternoon....
See you in cyberspace on Monday!
Monday, October 29th Day Five
I've named this Kinky Monday...
Aldente - this one is for you!
Monday morning - Coffee in hand I strolled into the unit. H. had the bags all set up for a non-pureflow run. A. the new nurse was in to train as well. We set up and I read from the cheat sheet - (well at this point, I was only using it for hints) I understood the heater and the multi-line adapter, we had an uneventful prime, we did a 1.5 liter prime to flush the system (I slightly react to the dialysate). I had an uneventful stick - using sharps with my buttonholes. all was well. H. put me on the machine and well... all hell broke loose.
1. There was a kink in the arterial line which made my arterial pressure go sky high. H. tried to fix it - but it was a loss.
2. We had to do a manual return of my blood.
3. We had to find a cartridge that was not damaged in shipping and re-prime 1.5 litres.
4. We had to re-bolus another 25 of Heparin (we lost the majority of the original bolus in the first dialyzer set)
5. In all of the taking on & off, my arterial line worked its way out of my fistula. (we did not notice this)
6. Then we had a clot in my arterial line. we used heparinized saline to flush it out.
7. I spun & repositioned my arterial line - but it was touchy - we started the run with low pump speed & crappy pressure.
8. somehow air got into the system (I think it was either the 2nd heparin bolus or the arterial line coming out)
9. We had to re inflate the arterial pressure pad
10. we had to aspirate the artificial kidney
Finally 1.5 hours into the run - we could up the pump speed to 400 and my arterial pressure was beautiful.
Ummm... I now feel really familiar with alarms... And repositioning my needles by myself... and wasting a cartridge, re-setting up the machine, and re-priming. It all makes for a really long day though.
But - the day wasn't over...
After my run, we went to make a batch of dialysate with the pureflow and the water wouldn't flow. Nope even on the second sac. I actually left for work at 3:30, so I don't know if I'll be dialyzing with bags or pureflow tomorrow. I think that H was going to start ripping her hair out.
So, aside from all that some cool stuff happened too. The Medical Director asked me if I would speak to a Hassidic Jewish man about NxStage as they are considering it for his father. I was pleased to give my spiel (some of my best friends are Orthodox and Yori says that I am "one ritual bath away from conversion" since I am as WASP white bread as you can get - I love it! (makes me feel cultured)) When I told the Medical Director and the man what Yori said, they both burst out laughing.
I also learned that I am fairly calm and methodical under pressure - even when it is my own blood. I hope that this feeling stays with me when I go home.
So IHDer's (and others Wink) it is 8:20 and I am still at work. Today is going to be short.
See you Tuesday!
Tuesday, October 30th - Day Six
I did it all by myself! (Do I sound like a two year old who has just been potty trained?)
Today was a good day. I did it all - from set up (pureflow) to pulling my needles - (in honor of Halloween - I bled all over the chair!!) Crikey, pulling your own needles is HARD - if you are a bleeder that is. Honestly it was the one thing that I was nervous about - and for good reason. We try blunts again on Thursday and fingers crossed - I won't bleed so much. Today, I also had my mid-training evaluation and I passed.
I was introduced to my centrifuge today - coolest toy ever! I'll think of EPOMAN every time I spin my blood. Tonight, I am exhausted - after I leave training, then I go to work. A sensible person would have taken the time off - but oh no not this workaholic.
We discussed my prescription - -will I be doing 3 hours/ 5x --will I be 3 on 1 off?? It all depends on how my numbers come back later this week. As of yesterday, my KT/V was calculated at 2.50 - No wonder I have so much energy in the am. I haven't been over a 1.68 since I started Dialysis. Lookout world - I'm starting to make plans for the future. (I still can't decide if I'll do Christmas in the crackhouse or if I'll (oops - I can't say the other thought because they're reading the boards now (a reason the boards should be dialyzors only! J/K caregivers & family members!!) either way - it is an amazing thing to actually be making plans!)
I've done some thinking about my attitude over the past few days. I think that I've developed a pretty strong coping system over the years - I treat everything as an adventure - which to an onlooker it may appear to be naivety or escapism - especially with the health issues that we are all dealing with - but it gets me through the day.
Again - a lame recap - But I am exhausted - it is a good, accomplished feeling kind of exhausted though!
See you Wednesday!
Wednesday, October 31- Day Seven
Happy Halloween!!
It was a bright and sunny morning in NYC...I walked into a closed dark room.. (No, this isn't a horror story...)
It was a closed dark room though. My nurse didn't seem to be in yet. So, I flipped on the light switch, took off my jacket settled my stuff in, and had a thought... "Why Don't I set up the room?" - So, I did.
I gathered supplies, Chux, Heparin, saline, cartridge, sponges, needles, betadine, ETOH swabs, tape, Bandaid, glove etc. Setup my "cannulation station", then moved on to the cycler. I hung saline, pulled out a cartridge, weighed myself - then sat down and took my vitals. That is when H. walked in and said "You did this?" I smiled yes. (more liked beamed) She laughed at me and then called the trainee Nurse A. in to watch me do a full set up. I did - no problem. (I almost contaminated the saline line by dropping it after it was uncapped- but now - I'll remember.)
Cannulation was uneventful and soon enough I was pumping away at 400 taking off 1K with a slightly high venous pressure and a near perfect Arterial pressure. This was good for my training nurse - as she had a lot of paperwork to catch up on, so she went to her office and I settled in for the next 3 hours.
I took my vitals every 1/2 hour and recorded numbers (volume, flow and speed) every hour I flushed 100cc (trying to keep my heparin dose low) I had visitors from the unit - checking on my progress and showing off their Halloween Costumes. (A hooker,the African Queen, an albino Gorilla, a cowboy and a 50's sock Hop Girl)
The dietitian came to speak with me - we went over my diet and what to expect our interaction to be. (even though this is my home unit, I was on the night shift under a different Dietitian - so this was the first time I met the Daytime Dietitian) She was lovely and she promised to fax me real labs - not the normal dialysis sticker sheet that is handed out. I like her.
Today was the day that I found myself curling up in my chair wrapped in a blanket and daydreaming.... I don't remember the last time I daydreamed - just letting my thought wander - it felt great - and my BP went down. Who ever would have thought that I'd be able to relax in a dialysis unit. That goes to show my state of mind. (which is a totally different state - dare I say country - than where I was even two months ago!)
At the end of my run, H. and I planned to run a temporary disconnect, reconnect and flushback of the recirculated blood. When I had 30 mins left - we did it. She talked me through the steps and I did it. Soon I was free from the machine with flushed access and taped syringes to my shoulder. We went for a short walk around the unit and then I put myself back on and returned my recirculated blood then programmed the ultrafitration to remove the excess saline from the recirculation in the last 30 mins of my run. All went perfectly... but then I had a hiccup. My venous pressure was well over 300 (not advisable) we tried a flush - and still the number was >300. Then I looked at my access. I hadn't taped very well when I first cannulated myself, and all of the movement had worked the needle loose. Moral of the story - Tape yourself well the first time... You never know what is going to happen.
Thursday, November 1 - Day Eight!
Well, today I reenacted the prom scene from the movie Carrie!
I set up, cannualted myself (Sharp Arterial/Blunt Venous) and was just about to put myself on all by myself when...
You know - rubber gloves suck! I had a hard time loosening the cap on my venous line (to bring the blood to the end of the line) I fumbled with the cap and whoosh -dropped the cap and blood started gushing out. (at least my needle placement was good!)
But then... I forgot to tape the venous line - so the blunt came out and my arm erupted like Vesuvius on that fateful day in 79AD. Which warranted my first swear word of the day. (begins with s)
I won't forget to tape my lines again....
After H&A cleaned me up - H. Drew blood and put on my lines. I had an uneventful run. I am testing my dry weight - so we pulled off 1K the first hour- no problem.
I ran for 3:03 at a FF of 32 with 22L. No flushes (we upped my Heparin to 3000)
When it came time to come off - because we went nuts with the tape - (overcompensating for forgetting to tape the venous line) Taking off was a bit rough it was the first time I took off both - but I survived with only a little blood loss!!
tomorrow am I am really going to ergonomically look at how I have the machine set up and try to simulate home - that way I'll find the best positioning for when I am dialyzing solo.
All in all - it was a good day - I learned an important lesson and I learned it in a clinic environment. That will really help me when I am at home. And - we used my centrifuge today (man - that thing is loud!)
Friday, November 2 - Day Nine
I brought cheesecake for the staff today... They earned it.
I also walked in armed with the suggestions that you all had for me RE: Take Off - (THANKS!)
Umm.. Normal set up - all by myself. Arterial Cannulation - still need sharps!! Venous - Perfect with blunt. I remembered to tape, and I did not fumble with the lines. BUT...
When it came time for me to put my venous on, the connection broke as I tried to take it off the saline spike. Cheap friggin plastic! And you know - when one connection goes - you have to waste the whole cartridge and start all over again. And, my arterial is extremely positional so I ended up not getting on the machine until 11:17 and when I did, I had to adjust and readjust my arterial.
Again - so glad that it happened in the clinical environment. (sigh - that is my new mantra...)
Pull needle 1/2 way, sureseal then pull & wad with 4x4 worked for me - well - almost. I need to learn patience. I peeked too soon at my venous and saw a bubble of blood amassing under the sureseal, and then pressed down really hard - which - if you are a student of physics - caused said bubble to squirt me right in the face. A. (the trainee nurse) & I were laughing so hard - I started to cry. Really - why does my NxStage training always seem to be like an Itchy & Scratchy Cartoon? All I did was peek!
So folks - that is it. the end of my second week of training - I'll be home soon!!!
Monday - another day with Bags & heater - and I'll be flying solo - alone in the room - I'll call H. if I get in over my head!!!
More lessons learned. Connections are fragile and don't peek - give clotting a chance.
Monday, November 5 - Day Ten!
Reality....
How do you set up the machine for solo access? That is what we are doing this week. For those of you with helpers... Well, let them know that you appreciate them because - although the whole process is "doable" solo - you need to adapt. Trainee Nurse A. is learning along with me - so there were a couple moments of "who is the student?" - I just decided that I'm gonna up my coffee Rx for Tuesday - that'll make me a more patient person!
Here's my report card so far:
Setting up the machine Pureflow or bags; A+
Cannualtion of my unruly access; A+
Putting myself on the machine; B - with the machine on the left (same side as my fistula), if I reach over my access and move too much, I mess up my arterial. We realized today that my arterial probably won't be buttonholed for at least another month - So, I'll go home on sharps arterial and blunts venous. At least I now know that eventually my arterial should settle down and play nice with the needles! And then there is the actual putting on the lines one handed while maintaining sterile technique. Again, it can be done - I just need to build my dexterity. I know that all of this will happen with time.
Mondays are just so - well - they sneak up on you. My amazing healing powers closed both of my buttonholes. (No scabs to pick off and it was almost like re-piercing flesh. How's that for a visual???) I still managed to use a blunt with my venous but it took a while and the needle just didn't want to slide in.
Once I was on the machine - my run was perfect.
Take off was a little bloody - I had to draw my bloods for tissue typing and I put the vaccuatiner adapter on too tight and when I pulled it off my line, I also pulled my venous - oops. But - My "Crap I'm bleeding!" reflexes are now so well honed that I had a 4X4 on it before my training nurse even noticed it. And I didn't peek - so 3 mis of 4X4 and my venous was good to go.
My one handed needle pull with my arterial - well today it did it upside down because of the positioning (sureseal on top) and a small stream of blood - all under control and soon I was off to weigh myself and pack up my things and head home. (I skipped work today!!)
Over all I give my takeoff a B.
I also brought my centrifuge home. I'm looking at it right now as as I type - wondering if I'll get into trouble if I spin something in it... But what??? Hmmm maybe I'll just respect the Centrifuge - after all not having one caused EPOMAN such grief....
That's my Monday - see you tomorrow - same place....
Let me start with some helpful hints from one who knows:
centrifuge: it runs quieter with a test tube opposite the one with the blood sample (if it is the type with a four tube capacity). I keep a tube with saline as a counterweight.
the whole one hand thing: I have thought about doing wet sticks - sticks with the needles already attached to the lines. However, the buttonhole needle with 16" lines allow me to use my right hand (I canulate my right arm) so I never did try wet sticking. Would longer needle lines help? Do you have access to buttonhole needles with the longer lines?
Tuesday, November 6th - Day Eleven
What a difference a day makes....
I did everything today from set up (pureflow) to take off (the IHD way) - very little bloodshed. I'd even say that the MPAA would give it a G rating. (compared to the "Carrie Day" which was definitely NC-17 (warning language and blood!))
H. my training Nurse stayed in her office and did paperwork and A. the trainee sat silently while I talked her through the process. It was a quiet, peaceful day...
We did go over my supplies and the delivery schedule. (my Pureflow & control panel are being delivered tomorrow)
A lesson learned on Monday.... Don't moisturize your hands before a run. Yes, we all hate dry skin, but being able to grasp is a very important thing in Dialysis!
So, that is what a quiet dialysis session is like. Refreshing. Also, I got some very good news. I only have to run 5X per week. (I have my residual kidney function to thank for that)
We also had a clinic visits today - I love it. It is like you are really being seen by a Dr. - A laundry list of what meds you are on and what your treatments are like - follow up on any medical issues and lab work ending with a "How can we make this better for you?" I felt like an adult human being, not a number in a chair.
And finally, BP: I have no words. (relish that - it doesn't come often!) We ordered my 16 inch blunts today.
Wednesday, November 7 Day Twelve
Fun & Games at Home Hemo Training....
This week is solo - but I brought a visitor this morning. My friend Nancy. She & her husband are #2 on my emergency contact list - and she had never been to the dialysis unit - so - since I won't be there much longer today was the day.
I quickly realized that I had maybe prepared her too well... because no matter what I did - she compared it to the videos on the web that I had shown her.... "But he really has to pick his scabs off - you're not..." My response -"my scabs are small... I am a girl... my fistula is up arm and I mouisturize!!!" - Where would we be without the internet??
We actually had a lot of fun this morning. Maybe too much fun...I narrated through the whole process of set up and put on (for both Nancy and trainee Nurse A.). But I learned something - my nephrologist stopped by mid-cannulation (arterial of course) and I mullti-tasked. He wanted to talk about a dinner that he went to the night before RE: NXStage, Home Hemo & Nocturnal - and he thought that I should have been there - so he recapped the whole event for me - while I was cannulating - and I just kept going and having a conversation at the same time - well, I ended up doing a crappy job on my arterial - but my venous was perfect.
So, after my Dr. left - and I was starting my run - I realized that I'd have to re-do my arterial - so I got to do a disconnect and a second stick - bevel pointed towards the anastamosis. (my initial placement had the needle placed in the wrong direction (and I thought I was so clever!)
Lesson Learned: Focus - don't multi-task.
The rest of the run was perfect. Nancy left before I took my first set of vitals - so I did some work (e-mail & phone) and chatted with Trainee Nurse A. and soon enough my run was over and I rushed home to meet Fed-ex.
Because of the disconnect I had to take off an additional .7 - along with the 1K that I was going to pull. So I ended up taking off 1.7 which made me woozy.... A bit too much. The train ride home was long...
I am home now, still waiting for Fed-Ex to deliver my pureflow. As long as it gets here (fingers crossed), tomorrow after my run my trainer & the trainee nurse will come home with me after work and we'll set up the pak and a sac. Then take a sample for testing and we are green light for at home next week!
Of course after my first run at home - I'll be back at work full time and dialyzing at night...at home...in my own chair...watching my own TV... surrounded by boxes and boxes of medical supplies!!! It is already an interesting November and we're only a week in!!!
That's Wednesday...
Thursday, November 8 - Day 13
Fed-Ex never showed up last night... No call - no show. (oh they got yelled at!) Where is my Pureflow??? (they swear it will be delivered today...)
So, today is about deliveries...
scheduling Fresinius for my medical supplies (Friday after 4)
scheduling NxStage for my machine supplies (Tuesday after 4)
re-scheduling fed-ex.... (fingers crossed)
You know even though the clinic does the initial ordering of supplies for you... You really do have a lot of administrative work to do. Between filling & e-mailing out your flow sheet - sending off your labs and managing your supplies - I think that the whole experience is resume building! It is a part time job!!! (I want a raise!) Ok, I'll settle for a great KT/V...
But let's move back to training.....
Perfect set-up & put on (almost) I forgot to push the pureflow GO button a final time and I wasn't getting proper dialysate. My Training Nurse was happy that I still needed her.
Speaking of pushing buttons... I know that Black & others have commented on how hard those suckers are - and let me concur - they are hard to push! I understand the reasoning - to make sure that there are no accidents - but geesh - I thought that I had upped my dialysate to the max and still I only had a FF of 28 - so I called to training nurse to ask why - and she said (for the umpteenth time) - "push it like you mean it!" Soon enough my dialysate was up and I was running at a FF of 32/pump speed 400 & taking off .7.
During my 3 hours, I was on the phone yelling at fed-ex, I helped the trainee Nurse A. study for her upcoming exam and I answered some work e-mail. Pretty boring - can't wait to get home and watch some bad TV while dialyzing. (I'll admit it - I TIVO Judge Alex!!)
At the end of my run - the last seven minutes take FOREVER - I carefully hand pulled my venous! No blood! Whoo hoo! When it came time to pull my arterial, I looked down to see that I had already pulled the needle out. (My lines had been taped together and when I put the venous in my lap - it pulled the arterial. Good news though - it had already clotted - NO BLOOD!) So, we ended the day laughing.
I took my vitals - weighed in, grabbed my stuff and headed home.
And on an "I'm feeling better" note: On my way to the subway - I stopped at the Lincoln Center Farmer's Market and did some shopping. I picked up some late season Basil, some Apples, a few zucchini and an Acorn Squash. So, tonight I'm going to make Pesto. And in the next couple of days I'll decide what I am going do do with the other veg I bought... I can't remember the last time I felt so good just shopping at a Farmer's Market.
So, that was my day #13... We're finishing up this epic - just a few more entries to go!!
Friday, November 9 - Day 14
I am writing this on Saturday... I needed some distance... a lot has been running through my head and I needed to process it. Making the transition to NxStage is the best possible thing that I could have done for my health. My bloodwork is amazing. Aside from a high Creat and BUN - it is the best that my labs have been in 5 years.
But I am going to share with you my realization - Theory vs Reality... When Fed Ex delivered the pureflow boxes, the driver put the pureflow box and the control unit box in the middle of my living room floor, I was stunned by the size of the boxes. (now, note that I live in NYC and I have a small apartment - and my living room (all 11x14 of it ) is now my TV room, my living room, my dining room and my dialysis room.) I'm not house proud - all my life anywhere I've lived has just basically been a launching pad for what ever my next adventure may be - and I've lived in some interesting places. But this is a first.
I brought dialysis home with me. I now have a daily reminder that my life is different. In a lot of ways - I was hiding in the unit when I was dialyzing in-center. I'd leave work at 4:30 and for a few hours I was in a different world - then I'd go home and return to my usual routine. (exhausted and crawling into bed and then tossing & turning all night with ESRD insomnia)
On Friday - when the bulk of my supplies were delivered, I was overwhelmed. My first thought was "what have I done?" I turned my living room into a clinic.
So, over the next few weeks - I expect that there will be changes on my outlook - I'll get outside more - go to movies - see friends - and reclaim those hours that I spent hiding in the dialysis unit. I own my schedule now - I didn't expect the reality of home dialysis to have such an impact. I think that it really is a chance for me learn more about myself and how I define myself.
Ok, enough about that - now on to training.
Friday morning went well. I am comfortable with the whole process and I'm ready to go home. I did start the prime before I attached the access Pad, but that was easily recovered. Other than that it was a perfect run.
My at home prescription for the first month will be: 20L 6x (for the first month to establish best at home baselines) pump speed 400 FF 32 with 4000 Heparin with 2 100cc flushes in the run. As long as we chart excellent numbers in my first month - then I'll switch to 5x.
My training nurse drove us to my apartment after my run - she had to be the person to set up my pureflow and prime the pak. While sitting in traffic, we discussed KT/V and deciding the whole prescription. I mentioned the different prescriptions that others were running here on IHD and she & I discussed her NxStage Training and the future of the center's program.
These are exciting days for dialyzors - we have more and more options on the horizon - we really are breaking the "in-center" model- more of us are living healthier and making dialysis just a therapy - I have high hopes for at home hemo industry. (I also note that even though we have 1400+ members here on IHD less than 150 are active on a daily basis - and there are thousands of us out there in the world, so I've started telling everyone I encounter at the unit to check out IHD and even my urinator friends - when they encounter people with CKD they have started mentioning IHD) Knowledge is power.
Now, I am going to sign off and convert my little coat closet into a medical supply closet - slowly - I'm gonna make it work!
Monday will be my next to last day at the unit..... WOW time flies!
Monday, November 12th - Day 15
I am really not a Monday morning person....
To top it off I seem to have done something to my left thigh muscle - fingers crossed that it is just muscle strain - but I woke up in pain on Sunday am and crap it hurts. Noting like having a sports injury when you spend 4 hours in a chair every day.... That's just mean as far as I am concerned.
Let me start with Sunday Night in my living room
I stayed up until 1:00am making my first pureflow batch. ( I needed to have a fresh batch to draw water samples for state testing from both the Pure Pak and the Sac.)
Of course, because I am gun shy when it comes to running water... (gee I wonder why) I pretty much stayed up all night listening to the pureflow unit do it's thing - expecting the floodwaters to break. They didn't - and when I looked in the chamber at 7:30 am - I had 60 Liters of dialysate. I performed a chloramine test and then performed a sterile collection from both the Pak and the chickenfoot. (All before I had any coffee!)
I packed up my stuff, headed out the door and hit the Bodega for coffee and a breakfast sandwich. Soon enough I was on the train en route to my next to last training day!
At the Unit
On Monday we use bags. My prescription is 20L. Today I did the set up with out my cheat sheet. (I accidentally left it at home) umm mistakes... yes... I forgot to prime all of the dialysate lines (I was only using four) and I taped the drain line to be a fountain rather than a drain (It was spurting straight up - but still flowing down the drain) so we had a lovely little tinkling sound when I started my run. H. had a great time trying to source the sound!! And for some strange reason... I forgot to turn on the heater.... (even after having heard a cautionary tale - maybe I was just being sympathetic - nah - I just hadn' had enough coffee ;) H. caught that rather quickly and I suffered no ill effects.
After that, the run completely uneventful. I only took off .4 because on Friday - we had taken off way too much. By Friday night - my blood pressure tanked and I was exhausted (and surrounded by boxes..)
Take off I was alone in the training room and perfect. (still using the IHD way)
I was a bit lazy today though. I hadn't prepped for my take off so, 30mins before the end of my run I asked H. to gather my supplies for me. She did - and she understood that I was just taking advantage for the moment. (sometimes it is nice to be pampered!)
We also calendered my dialysis schedule through December scheduled my first clinic visit and organized when I'll be doing my blood draws.
We're tying up loose ends!!
So, my next to last day ended early, and I dashed to work - ordered some Vietnamese for Lunch - Pho - and here I am typing away...
Tomorrow my last day at the unit and my first NxStage fluid delivery...
Tuesday, November 13th... Day 16 - My Last Day at the Unit!!!
Oh my IHD friends where do I start??? On my commute home from the unit I started composing this post in my head (I do that a lot) And everything was all sunshine and nice... It went like this...
You know, as I walked through Lincoln Center - on a beautiful day in NYC surrounded by iconic architecture, the fountain, blue sky, posters of upcoming events and one massive naked x-mas tree (yes a bit early..) I had my Mary Tyler Moore Moment - I wanted to spin around and throw my sharps container in the air to celebrate. (for those of you born after the 70's - trust me it was a happy moment)
Well, I hopped on the train home, and soon enough and while lost in thought thinking about December, I strolled up the hill to my apartment (over 90 mins early to meet my NxStage delivery) and what do I see but an empty van parked in my driveway. Huh? As I walked up the stairs I saw the driver saying thank you to my neighbors. Huh? And then they said "there she is" - Then my blood boiled. The driver was just leaving after delivering all of my supplies to my neighbor. Oh boy - was he about to have a bad day. What lit my fuse was when he told me that "I was just doing you a favor".
Guys & Girls. Let me admit this. I don't yell, I don't bluster. I eviscerate. I am scary angry. I don't get that way very often. Maybe twice in the past four or five years. I come from a family of scary angry people. So, I've learned to always assess the situation - if it won't matter in five years - let it blow over. If it will matter, then go for it.
My logic was that this driver needed to learn his job and realize that he was doing no one a favor but himself. And after I finished with him, while he was moving the boxes to my apartment - I called Nxstage. After I finished with NxStage, I called my Nurse. Then I sat down and had lunch. (the driver fled)
So, I guess that's blown the Mary Tyler Moore fantasy moment....
Now on to my last day of training.
I was lazy. My set up was adequate - we used bags. I forgot to unclamp the drain so my flush was weird. (glad that I noticed that it was weird and found the clamp) and then I forgot to unclamp one of my arterial clamps. So, I started with alarms. All easily recovered.
Perfect run with 2 100cc flushes. (I still clot) until the last :27 I got a new alarm - and air in my dialysate line. Hmmm that was a new one for me. But not for my nurse. Apparently sometimes the frangibles in the dialysate bags clog the port and I had one almost full bag of dialysate, and the pressure was sucking air out of the three empty bags. Easily recoverable if you know what to look for. I'm glad that it happened at training. (yes, I still have my mantra)
I have a lot of thoughts about my whole in-center experience, but now, in perspective it was only 11 months out of my life. And that is baby steps compared to many of you. So, tomorrow will be my last training post. I have to say that I am now reflective and totally spent - both emotionally and physically. I'm going to take the month of December and hibernate - then start 2008 with a clean slate - or at least that's the plan - and you know me, I always have to have a plan.
Wednesday, November 14th - Home Sweet Home
All I can saw is whew. I'm typing this on Thursday because after my run ended, I sat in my chair, sent an e-mail, then started making some phone calls, cooked dinner (a modified version of Coq au Vin) - then sat down to post - I was amazingly sentimental last night - mid post, my laptop died. Hmm did technology fail me? or was it fate saying that you are being really sappy so sleep on it. Well, I has no other recourse but to sleep on it - so I did.
Today, I am back in the real world. I woke up fell back into my workday routine, suited up and headed to the office. But the world looked different. I left the disease at home today. (if only NxStage could learn to wash windows...)
So, let me recap my first day at home and put this saga to bed...
I woke up earlier than usual - puttered, organized and then got the idea to bake devil's food muffins. (I wanted the house to smell like coffee and chocolate - not dialysate and plastic)
There was a lot of waiting around - (the Nurses were late)
When they arrived at 11, the wheeled in Edward - yes- I named my machine Edward (don't ask why - I don't know - the name just popped into my head as I was typing an e-mail one day...)
We quickly set up and I got down to business. I'm still using bags - my pureflow sample hasn't been approved yet. Man those bags are really developing my upper body strength.
My Lay-z-Boy (ugly yet comfortable chair (craigslist $100.00 delivered) is the perfect size for my put on. And I have an architects stand on wheels to hold a weeks worth of disposable medical supplies (it acts as sort of an art/mayo stand).
Everything was perfect - well except my lines got a little tangled and when I went to detach and untangle the dialysate line, I forgot to clamp it - so I laughed and called it a "Super Prime".
The Nurses made themselves at home and we settled in for a 2 hour gab fest. They drank tea and ate muffins and I showed them mementos of my life. We had a nice afternoon.
My run was perfect. 20L; 32 FF; 1K UF; 2x 100cc flush; 4K Heparin - all in 2:47.
And I do have to say that last night was the FIRST time that I've had to clean up the machine and dispose of the spent materials. I was so spoiled at the unit!! After the nurses left, I had some time to just reflect and let this all sink in. Let's just sum it up by saying that 2007 has been a very interesting year. One adventure that I'd rather not repeat - but I've met some amazing people along the way!
That's it. The story of yet another NxStage Home Dialyzor.
The Final Chapter
I've decided to write the final chapter of my NxStage journey. I was at home, alone, dialyzing for 1 year. The dialysis was great, it kept me in the best possible health. From 10/07 until 8/08 I had a smooth run with my training unit, a great relationship with my training nurse, and aside from a few delivery issues, all was well.
On August 15, 2008, my unit was closed by the NY State Department of Health for infection control violations in their in-center facility. I was transferred to a unit that would not support me doing solo dialysis. Many, many people got involved, and within two weeks, I had four units offering their services. NxStage were supportive and sympathetic, The State of NY contacted me to make sure that I was well supplied and that things were ok, and thanks to the WWW my situation was internationally known.
I never missed a day of home dialysis, and aside from some depression over the situation, within a month, I was settled in at a new unit. It was demanded that I have a full work up, and there were a lot of hoops to jump through, many Dr.'s appointments, an incenter demonstration of my technique, my transfer was more like a house closing, with all of the forms to sign, and 8 or 9 people in a conference room, but my new unit was just covering all of their bases, I don't blame them at all, as a matter of fact, all of the testing in September and October gave me a great baseline of my over all health, which was great. NxStage was working, and I was in peak condition.
Which brings me to this final post, I received a deceased donor transplant on November 2, 2008. Story here:
http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg18749
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Good Luck Meinuk, you can do it my friend :2thumbsup; Hope it all goes well with your 1st stick tomorrow and every day after :clap;
Then, just think of all the time you get to spend with us once your able to stay at home to dialyze :yahoo; :yahoo;
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Sounds good Meinuk, Nxstage has meant freedom to many. :2thumbsup;
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:2thumbsup; :clap; Congrats on being brave enough to do your own needles, and take responsibility for your own health with the NxStage. Hope it goes well and you're home soon.
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Good luck! Lets hope it all works out and you are out of the unit and at home with your Nxstage!
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Susie, Sluff, Black & Livecam - Thanks for the encouragement. (and in a little over a week S&S, I'll be able to say thanks in person!!)
So, tonight, I stuck myself! I had quite an audience. Some techs had to turn away. (Mary-Ann!) And my primary nurse got all squeemish when I scraped off the scabs. They all thought that I was calm cool & collected, but my BP told the truth. 174/85 My normal predialysis BP is 135/74.
I used sharps, and there was no pain. We had to adjust my arterial, but that was normal for me. What a relief! From now on, I'll stick myself, and on Friday, I'll try take off for the first time. Next week, I'll use blunts.
So, with all this practice, I should be almost a veteran when I start my NxStage training after Vegas.
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Great job :2thumbsup;, I'm still having trouble, but hubby gets mine everytime luckily ;D
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Outstanding!
:beer1;
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Great and good luck!
I can't wait until I start my home training (again). My fistula is 3 years old before I first tried to use it and the first time, infiltration. So, here goes permacath and in-center hemo.
Was using the Fistula (after 3 weeks) and had three successful sticks for the lower (arterial) and two for the upper, then bang .. the nurse messed up and infiltration again. So, now I'm once again on a 1-2 week "resting" period and using the perm-cath. Hopefully soon I'll be back to using the fistula.
Keep us posted of your success! :)
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Yeah!!!! This is great news!! I hope you enjoy NxStage as much as my husband does. It's so much nice to do it in the comfort of your own home than at the center.
Great job on sticking yourself, you are very brave in my opinion!!!!! :clap;
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Meinuk--you have such a wonderful attitude and spirit. It was such a pleasure meeting you and the excitement you have for starting Nxstage is contagious! I know you will do great---and now you will become someone's "rock star"!! Looking forward to reading all your entries while you start this adventure.
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Monday 10/15 5pm - after no sleep in 24 hours. (Left Vegas, got to JFK went to work, went to dialysis)
My last week at the unit. My nurse shunned me. I got my needle kit, washed my arm, grabbed a glove, sat down, prepped my tape, opened my bandaids, wiped betadine, then swabbed, opened my needles, took a deep breath and stuck my arterial - Bandaid and tape, checked flow - then stuck my venous - repeat same. The tech put my lines on the machine. PERFECT! My nurse walked in looked surprised, and then declared that I was ready for home hemo! All the while, my BP 123/80 Bye bye anxiety!
My first needle sticks unsupervised. I could never have done it so easily without everyone on these boards. Thank you for the knowledge, and the encouragement.
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YOU GO GIRL :yahoo; It is such a trip, when i read your posts, i picture your face as if you were talking to me (i am doing that with all the members i met this weekend) It was so awesome and i tell ya, Sam is determined to get me on a plane to New York, lol, ohhhh great, i am sure New York would love an Elvis impersonator huh? lol, Keep up the great work and keep us posted as to how it is going for you... Hope to hear from you again soon :cuddle;
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I would love to show you my NYC! And I promise, I'll finally do that tequila shot!!! Mi Casa su casa amiga! And Sam can sing!!!
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Hi Me!
Wow that's wonderful! After meeting you I have no doubt that you can tackle anything you want!
Good luck and congrats!
:2thumbsup;
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Me In UK but really NY...... Sounds like you are doing great. No doubt that you will be home in no time. Keep us posted. I'm hearing your voice when I read your posts. Like Goofynina said, It is so neat to put faces and voices to names on the site.
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Meinuk, Aloha Beth and I had such a great time hanging out with you. You are so positive in your attitude, we know you can do anything. Like Goofynina, now when I read your posts, I picture us in your room, sitting on the beds, talking face to face. We are so excited you are doing NxStage at home. Keep posting so we can learn from you!
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Huge Congrats on your successful sticks!!
You will truly appreciate what home hemo does for your quality of life.
Be prepared for the few times when thngs don't go quite right...they will happen, but you can handle it.
Way to go!
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Way to go! Nice to have a role model to follow as NxStage looms on my horizon./bobt
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Well IHDer's - this may be an update, may be a rant... It all depends on how my emotions play out as I type this....
I had my home visit on Thursday am. The training nurse & I scheduled this visit weeks ago, and really, as I am pretty well read on the ins and out of Nxstage, I considered it a formality. (I also know that there are issues with my little "crack house" - but I am fully prepared to address them. (plumbing & wiring & life call))
Now let me tell you about my Wednesday night, and give you a little back story.... I had an uneventful run on Wednesday. I slept a little, joked around with the techs and finished around 9:30. As it is my habit to weigh myself right after the run and then go to the bathroom and weigh myself again (yes, I am also still a urinator) I stopped on my way to the bathroom to look wistfully at the pallet of new supplies outside the home training rooms. I was lost in my own thoughts. When lumbering toward me comes one of the unit social workers.
Now comes the back story - I am actually careful with what I write publicly about the unit I dialyze at - I try not to be too critical - as this is just one person's opinion. But today I make an exception. This social worker creeps me out. (unbalanced, freakish creepy - if you must know)
Really - I have a visceral reaction to him. Because of that - I have had very little interaction with him. He has no sense of personal boundaries and has a tendency to be in your face with his "Gratuitous Hello" (his quote, not mine) I treat him like I'd treat any creep in a bar and give a perfunctory "fine thank you". When he saunters up and asks "Hello Anna, how are you?" I don't give him an inch, and for the most part, he steers clear.
We did have one interaction, when I was a few months into the planning stages of me doing home hemo - alone. He came to my chair and asked me who I live with, and if I a interested in doing home hemo. I told him that I was indeed on the list to start training for NxStage, and that I live alone, and that if he had any questions RE: my situation, he should really read my chart or better yet, speak to the medical team, who are all well aware of my situation. He simply muttered something and backed off. That was my last interaction with him, and that was in August.
Ok, so now we are back to Wednesday night - I was post 4 hour run, standing near the pallet of my materials. R the creepy social worker lumbers towards me and chirps - "Hey Anna, I'm coming over tomorrow." - my reaction "WTF" - I actually said, "Excuse me?" he then replied, yeah, "I'm coming to your house with H. (the nurse)" - My internal response - over my dead body. My public response, "excuse me." And I walked back to my chair. Freaked out. I mean more freaked out than I have been in a very long time.
As I left the unit, my head was spinning. (this is not a normal reaction for me, and as anyone who has met me can attest, I am facile in social situations - which is what makes this so unsettling) I called one of my friends - and she talked me down. I then weighed the pros & cons of having my ex come over for the home visit (that would have opened a whole new can of worms). Eventually, I came to the conclusion that I've been in more threatening situations that this - I'll survive. Somehow, I'd be able to channel my inner bitch - I just had to get over being bind sided by a creep.
The next morning, the nurse called me to say that she was running late, and I (now, composed) let her know that I didn't appreciate being blindsided, and I didn't appreciate the unprofessional manner in which R announced "Hey Anna, I'm coming over." I simply said that he creeps me out, and I would have appreciated advance knowledge that he was a part of the home visit and that she had ample opportunity to tell me. She said that she understood my concern, and that she would come alone, and that she appreciated me "laying my cards on the table".
Of course, a few minutes later he called me and told me that he'd be taking the train to my house. I said no, and that the nurse would speak to him after she had made the home visit.
The nurse and I spoke frankly about my reaction to the social worker. And I assured her that I have no problems dealing with him on a professional level - in the unit.
So, that is where we left it. I had my home visit, on the physical side, there are some repairs that need to be made. On the emotional side, I am fully intending a showdown today during my run. But now, I've had the luxury of time, and I now can articulate what issues I have with him. And now I have a plan B.
So that's that, my update and my rant.
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Well it doesn't sound like our own Alvin does it? Take a deep breath meinuk and soak it all in and take your time , ask questions. I think you are headed in the right direction. Love ya girl thanks for being our Taxi cab last weekend.
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Good for you! I am glad you spoke up about that goofball coming to your home. :thumbup;
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Welcome back Sluff!!! I'll be your Taxi any time. It was great to see you & Christy!
Alvin I could handle, really - comeon' I see guys like Alvin on a daily basis (I've even dated a few....). (you have to love being single in NYC) This SW brings creepy to a whole new level. But like I said, now, I am fully prepared. I just wasn't on Wednesday night.
It was amazing for all of us to be in Vegas together, and I have some really happy memories.
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He must be a total creep if you can't tolerate him. You get along with everyone! Too bad it wasn't Alvin!! You are such a strong woman and I am glad you spoke your mind. Hope all goes well back at the center. Let us know how it goes.
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Thanks Paris!
Now I feel like poor Alvin has a bad rap. Really, he is just a "guy's guy" - The waitress certainly liked him ;)
It was so sweet of him to come in honor of Epoman. And I have to admit it was hysterical to watch him during the wedding. When he laughed and slapped the side of the pew, I thought my sides would split. And he really was sweet with Nick - you could tell that he takes fatherhood seriously.
And I'm leaving my comments at that!
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Nooooo--we love Alvin!! He was so much fun and put him with Jim-oh my goodness!!
Me, hope the training continues to go well and I know you are looking forward to being at home with the Nxstage. More posting time, right? Keep us updated about the creep. We may need to send Kitkatz with her big stick!
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It appears you have handled the creep very well so far. Trust your instincts. I repeat, TRUST YOUR INSTINCTS. Keep him away from you and do not hestitate to report any attempt by him to initiate conversation with you to the nurse who visited your home. :twocents;
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Hey Anna :oops; *ahem* Meinuk ;) Sorry they had to do that to you but hopefully you can get situated and do what'cha got to do so you can get the hell out of that clinic already :thumbdown; and as Black says, go with your instinct, dont trust this guy with anything, and if he does or says anything you call me and Sam and we'll come up to New York and rough him up a little :boxing; We'll tie him to a chair and let Sam sing to him Elvis songs allnight, lol, nah, i just hope for the best for you my friend, and i have no doubt that you will get it, you are a strong and very level headed woman that knows how to get what she wants, thats for darn sure (ya'll need to come and read some of her stories on Renal Romance) ;) ::) quite interesting indeed :clap;
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Nice job of handling the SW. A lesson for all of us to stand up and let people know what we think./bobt :clap;
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I have a few days of perspective now, and the whole situation has been a revelation - I'm glad that I went public with Wednesday night's incident. Black & Susie are right, although I did fell rather silly getting so flustered, I'm glad that I had a chance to speak frankly with the nurse. And she wasn't surprised - So, I'll leave it at that. I guess that I learn something new about myself every day.
And Susie - as far as the plug for Renal Romance - I really have to add the disclaimer that YOU ENCOURAGED ME!! Yes, I did have those "Adventures" but I normally would only talk about them with friends while sitting around the table - not necessarily on the www. Makes me wonder why I had such a tame weekend in Vegas... I must be getting old...
I just hope that none of my students or alumni stumble across them... It is rather difficult to be stern with them and try to force them to develop professionally when my some of my stories are out there....
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They are great, i am looking forward to reading some more (hint hint) ;) :2thumbsup; And as for a tamed weekend in Vegas, i had the shot glass ready girlfriend, ::)
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Tuesday October 23, 2007
Goofynina's 30/10 Birthday and my first NxStage Training session… A good day for all!
Let me start by saying that I never would have thought that a day of Dialysis could make me happy, but today, I was happier than I have been in a long time - (well since Vegas!)
I do have a few disclaimers though - which need to be said. My Training Nurse & I were quick to realize that this was not going to be a "from scratch" training session. I started my buttonholes in the unit and had already been self cannulating for a month. Thanks to EPOMAN, Black, Adam W & the people on these boards, I was very familiar with the concept and application of NxStage Therapy. (I oohed & ahhed when I recognized the chicken foot and the peanut!) And thanks to my college stint working at a dialysis unit - well, I was well ahead of the curve.
I am typing this later Tuesday afternoon, and there was so much to take on board this first day that I need to say that it is incomplete and there may be important steps missing - but I just wanted to write about it while it is fresh in my mind.
I really do think that home hemo is the future of dialysis - and really, if I can do this - then I hope that you can read about it, become familiar with NxStage and it won't be so intimidating. Overcoming one's fear is often the hardest hurdle - Gaining knowledge is doable - being in fear can be crippling.
So, at 9am my day started at the "at home" section of my dialysis unit. Before I left home, I made sure to eat a real breakfast and I drank enough coffee to get me through the ensuing hours.
H. My training nurse had the pureflow set up and my machine was sitting there waiting for me. She pointed out the basics, opening the machine - turning it on etc and then she showed me the tubing kit & artificial kidney. I was surprised to see that it was mounted on a plastic cartridge. (I was expecting to have to thread lines…) nope, NxStage made it pretty simple. The whole idea was to get me on the machine. H. showed me the pureflow and we checked for chloramines (sp) - if you are a Star Wars Fan - all I could think of was mitoclorians - Does the pureflow have Jedi Powers??? Maybe not! We passed the chloramines test and that was that.
I learned first hand about spiking the bag and the "snap & tap" - getting air out of lines. H. discussed the display, and toggling between displays - we primed the machine 18 minutes - during those 18 minutes, we had a visit form a referring nephrologist - he wanted to check out the machine and he had a few questions. I had all I could do to keep from telling him to just log on to IHD. He had some of the same questions that I had. How to dispose of medical waste - and what was the artificial kidney made of…
I then zoned out for a few minutes and checked my e-mail on my treo. (really I was concerned with work! I wasn't PMing Susie a happy birthday message…) The visiting Neph left and it was back to me. H & I discussed setting up the run - Dialysate Pump Speed , ultrafiltration etc. Color Coded tubing etc.
Today, I really was just the observer (there is a lot to learn) Then we were ready to put me on the machine. I washed my hands, got my stuff together (blankie, water et al) and set up my cannulation. H. watched me and helped me tape - my arterial is bizarre and we have to "pillow" the needle. I am used to it now, but I think that it seemed strange to H. My arterial flow was good, and then I hit the venous. No problem. H. Put me on the machine and soon, I was dialyzing away….
During the run, we signed paperwork (really, the training nurse has to agree to a code of conduct as well), I was given my plumbing kit for my pureflow, we talked about my dialysis journey to today and H. gave me a rundown of supplies that I would be given. That was where I strayed off course… H. told me that I would be given a centrifuge to spin my blood for blood work.
My heart melted, because I remember reading about EPOMAN wanting to avoid needlesticks and even offering to buy his own centrifuge, and he never got one. That set me off and I started to talk about IHD and the people who have influenced me. I told her about EPOMAN, and I talked about Bill Peckham & his boat trip with NxStage - She had heard of IHD but didn't know that EPOMAN had passed away. Pretty soon, we had a "2" notice and it was time to check my BP. (Vitals check every 1/2 hour)
There was a lot of paperwork to sign - and since I love dissecting contracts - I found a couple of loopholes that I am going to try & exploit. (now to just get a copy of the contract) What shocked me is that I am expected to get renter's insurance to cover the equipment. Damn, one more expense. Oh well, it is worth it.
One other observation that I had today is… that on home hemo, I actually feel like a partner in my medical care. The Neph & H & I discussed my run, my blood work my meds and options for the future. For the first time in 10 months, I feel like I am control of my health. I'm not just walking into a unit and sitting in a chair.
The run was almost uneventful - I had an arterial air alarm, and learned how to aspirate the artificial kidney. All in all I processed 77 litres of blood and took off .6 L of fluid. I was overjoyed to watch an Infection Control Video (insert sarcasm here) and I can unequivocally say that I really like my training nurse. She is professional and smart. It's gonna be an interesting few weeks! Oh yeah, and the training manuals are as big as biology texts.... Will I never get away from notebooks???
The adventure continues on Wednesday.....
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That is a very nice account of your Nxstage training and I appreciate you sharing that with us.
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That was good, Meinuk! I really enjoyed your account of your first day in training! :2thumbsup;
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Hi Me! Your journal is great and very informative. Wonderful job of writing it all out. Everyone doing dialysis at home gets my admiration and you will help others make the decision to take control of something in their lives. Keep writing. I can tell you are sooooo use to the classroom setting! :thumbup;
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Thanks Meinuk for the description. You are doing fantastic!!
:beer1;
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Thanks for the great description of your experience. I finished my NxStage training several weeks ago and your diary brings back good memories. I certainly agree with you when you say this is the first time you had the feeling that you were a partner in the treatment process rather than a number who sits in a chair. That feeling is even better when you get home on your own.
Our unit has discontinued the use of the pureflow unit. They claim that the water testing requirements in North Carolina are too stringent and time consuming. I read that as too expensive for them to be reimbursed (call me a cynic). I have seen the pureflow but my experience is only with hanging bags. Since I don't know any better, it's not a problem for me.
Keep up the good work and enjoy your newfound freedom.
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NxStage rocks! Our training nurses were, and are, amazing...they've become sort of an extended family. My wife, with NO prior medical or dialysis experience learned it all in 12 sessions, so you should be home in no time!!!! Congratulations!!!
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... Our unit has discontinued the use of the pureflow unit. They claim that the water testing requirements in North Carolina are too stringent and time consuming. ...
Are they trying to say there is not ONE home dialysis patient in NC? If they can test other machines they can test NxStage. Maybe they or you need to check out other centers in NC and find out how they are testing NxStage. Or better yet, contact NxStage to ask them if they can intervene in some way. Bags are way more expensive to ship and it would be much cheaper to use the PureFlow.
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Wednesday, October 24th Day TWO
Well, if today's training session could have a theme - it would be all about relationships. I was running late - my favourite bodega was closed, and I had to search out coffee. I found it and was 15 mins late. When I walked into the room, there was a present waiting for me in my chair, a clinic bag filled with branded goodies. Ahh marketing - anyway, I always like getting prezzies, so I was happy (and I had coffee).
I said thank you and we quickly got down to business - set up and put on. A refresher on what goes where - I stuck myself with no problem (on Monday, I switch to blunts & I'll use bags - not the pureflow) H. had a training sheet that she used as a guide, and she checked off thing as we covered them. The joy of all of this is that I am (admittedly) a workaholic. Once we had covered a section on the list, I would check my work e-mail and send what I needed to send. H. gave me plenty of "rests" to switch my focus, and then she brought me back to alarm and "what if's". I think that today we really found a cadence that will help my training be smooth and effective. I can train and I know that I won't be worrying about work because we have the rests built in.
And the best thing is that the training seems to be tailored to my aptitude. I really appreciate that.
No, why relationships as a theme? Because at one point during the run, H. Sat down and talked reality. Her role as a training nurse, the support system, calling NxStage vs calling the unit and the importance of not losing blood if you need to trouble shoot. (If you can't get through to NxStage or it is going to take too long - do a manual return) It was after that conversation that I started to really talk to her about my plans for the future. Going home to London, finally getting to take the aborted vacation that I had planned in January (driving from PA to Seattle via the northern route -dialysis ruined that one!) She was encouraging. She even talked about "If I need to take a break from the responsibilities of home hemo" Talk about saying what I wanted to hear!! Today I was officially drinking the koolaid. I could have easily been a sales rep for Nxstage and my unit. Dialysis is quickly becoming just a therapy and it is not going to rule my life or dominate my conversations (well... maybe on IHD it will...)
So, during my run, we chatted, I read two chapters of the training manual - I was visited by some of the techs from the in-centre side and... aside form being starving by 2pm (did I mention the importance of eating a good breakfast?) All went well.
We even wasted the balance of a pureflow sac and H. made a new batch to show me the process. As she opened the container that holds the sac, I remembered people posting about flooding and the sensor on the bottom of the container. - Really if I were in school, I think that the crib notes posted here on IHD really do give me an unfair advantage.. But you don't get graded when using NxStage - the ultimate grade is your health and freedom and on those counts, I am anticipating an A+.
Ok, I am signing off now, because my lunch was just delivered (green chicken curry - I'm sweating as I type!)
Thursday will be a new adventure!
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Meinuk, I am so happy it's working out so well for you!!! This is the beginning of freedom for you!! YAY!!! :yahoo;
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Awesome, simply awesome :clap; Your posts are comforting me to the point that i am not (that) scared to go back to hemo, i think i can do this NxStage, please keep on posting how your training is going, it is very inspirational to those who look for which method of dialysis they are going to take. You go girl, :2thumbsup;
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Thursday, October 25th - Day Three
Well, you know that I was really high on how well Wednesday went.... Don't you know that will just reach around and bite you in the ass. Technically, it slammed me in the arm... For more detail - right in the arterial access.
Got in, I guided H. through the set up process, (using a cheat sheet) checked chloramines in the new pureflow batch, pressed go and started to cannulate myself. My arterial stick went in well, had a good flash, I taped it and moved on to my venous. Venous no problem. Then I checked my arterial. Nothing. Zilch. Nada. A big fat goose egg as far as blood flow. We spun and adjusted the needle a bit better. We taped it. Back to square one. I said time for a new needle. H. asked if she could try. New spot - not the button hole....
On that, I am leaving you in suspense - my ride just got here. I'll finish this up at home over a glass of wine. (I take no responsibility for my typos..)
Ok, I am at home now.... Bet you didn't know two hours have elapsed!
So, my arm is infiltrated. Hurt like hell, but I was able to cannulate on the third try via the buttonhole. To make matters worse, the first stick was probably ok, I clotted. If I had actually pushed my heparin bolus when I stuck the arterial - none of this would have happened. Live & learn.
The run was uneventful. We watched a video on cannulation and access care. I drank tea, we fiddled with the new electronic BP cuff that seemed to think that I was having a stroke... (my real blood pressure was 137/80 not 189/109 like the machine was trying to say...)
I met with the Neph and discussed vitamin D therapy and he wrote me a script for oral zemplar - we made plans to draw bloods tomorrow - aside from my arm aching it was a good day.
After my run, I went back to the unit to visit some techs and was introduced to a transient Dialyzor from Glasgow - my old nurse was really excited - she stuck herself using buttonholes. My nurse of course is now the expert on buttonholes in the unit - since I was the first. It was really nice to see progress - slowly, units can adapt.
Last night I re-read EPOMAN's training blog - how things change... I have high hopes for the future of dialysis - still even with my new bruise. And I still really am impressed with H. my training nurse. Sure, the extra needlestick hurt - but it just reinforced the knowledge that I have a normal appearing fistula, but beneath the skin it is a freakshow.... Hmmm paging Dr. Freud...
That's all folks - I am off to my wineglass and to see what TIVO has for me tonight.
What will Friday bring?
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>:( That really chaps my hyde (that i cant go and share a glass of wine with you that is) ;) but of course you know i would prefer something much stronger :P ;) Maybe it was a good thing that happend since you are still in training, that way you would know what to do once you are on your own. I sure hope everything went ok after she stuck you, i'll be waiting to hear that rest of the story :popcorn;
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It's not that I wish you any bad luck but the more problems you have during training the better you will be prepared when you go home. It's a lot easier solving problems with the trained staff present than it is when you are alone.
Yesterday it seemed as if everything fell apart. First it was fluid alarms. There was a kink on one of the lines but that didn't fix it. Then I noticed that something was on top of the drain line. That cleared the problem. Then I started getting high pressure alarms. Nothing else was kinked and the problem was not obvious. While all of this was going on I kept my eye on the clock and decided that blood was out of my body too long and a flushback was not an option. I scraped the system and started over again. After priming and removing air from the lines I reconnected. High pressure alarms again... I didn't like the way one of the lines connected to my access so I removed a TEGO cap and everything went back to normal.
To say the least I was ticked off that I had so many problems, but because I had similar problems during training I was prepared.
Hang in there it gets better.
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Are you home yet? I can't wait to hear the rest of the story! Aldente has a point though, it IS much better to have problems, while trianing, so that you know what to look for and correct when it happens at home. But still....
By the way, that glass of wine sounds awfully good right about now... :wine;
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Wow, this has been a great thread. I have been off the computer for a few weeks and missed this. Congrats on your accomplishments and I am sure your words are helping alot of others out there. That's the great thing about this site. We are about the same age and seem to have started this journey about the same time. I too do my dialysis alone, however I do have a family here for back up. Pray you continue to find strength from doing this yourself, it is very liberating! Take care...
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I am not copping out - I just have to write about today's session on Saturday - BECAUSE for the first time in almost a year - I am going out on a friday night. Dinner & a Movie!!! I even get a chance to go home, shower and girl it up for this event - you would think that it was my first date!
And - we are going to see Lars & the Real Doll because on Wednesday night while walking down 14th street to go to Duane Reade to buy Tylenol, I bumped into Ryan Gosling. No Susie - I didn't grab him and declare my undying love... But I did nod hello and make note of how tall and handsome that Canadian is. Yikes - even scruffy he is amazing.
Oh well, I am off to finish up work then home to shower and then on to my Friday night out!!!
PS - I know that the novelty of daily hemo will wear off, but for right now -I'm surfin' that wave!!!
PPS - HIAE - since I now know that friends from the real world are surfing out IHD to see what is going on in my life - let me say a surprise "Happy Birthday" To my bestest childhood friend. (she married the first boy I ever kissed!!!) LL!!!
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Have a great evening Meinuk! :cuddle;
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Isn't it amazing how much better you feel right away? The novelty does wear off a bit, but you don't lose the increased energy! Have a great date!
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Ok, two separate posts... Friday night - AWESOME. Nice dinner at Don Giovanni salad, pasta and wine! Sweet movie at AMC 25 Lars & the Real Girl. Then home to bed where I curled up with Anthony Bourdain (in book form) - So, I declared Saturday "PJ's All Day" and I am puttering around my little crack house, re-arranging the living room to ready for NxStage and clean up the disaster that was my kitchen on Friday Morning. (details in the training post). Today is a dark rainy day here in NYC - a perfect day to make chicken stock - if only I had gone shopping yesterday. Oh well... There will be other chicken stock days this winter...
Now on to writing about Friday's training...
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Friday, October 26 Day 4
So, now I have empirical evidence that I am feeling better. At 6:30am I heard water/rain, it was really loud. In two seconds, I knew that disaster was afoot. I got out of bed and went to my kitchen to see gallons of water raining down. I thought quick, gathered all of the tall kitchen garbage pails (3 - one trash, one bottle recycling and one paper recycling) and I put all three under the deluge - they quickly filled up - this was my 6:30 am start to 45 minutes of bailing and mopping - now, I grew up with wooden boats, and I am used to bailing water. But this was warm water - then I realized that it was shower water from the tenant upstairs - YEEEEECCCCHHHH.
All of this happened and I was not tired - my energy level rose to the occasion. Of course with all my yelling - the person upstairs didn't hear me. Finally, they turned off the water. Then I just started mopping. When I finally got the water mopped up and the last of the trash cans emptied for the umpteenth time - I jumped in the shower, left a note for the tenant upstairs, called my landlord and then hit McDonald's for breakfast (comfort food - coffee, bacon,egg and cheese biscuit & reangel) then go to training at 9am. I felt like a normal - not CKD compromised human being dealing with life's ups and downs. No depression (ok, some anger), plenty of energy and a healthy outlook. Win/win in my book.
At the unit, I told H. about the flood and then we got down to business. I showed her the rather impressive infiltration from Thursday - purple bruise top& bottom of arterial access. H. declared it TGIF (low stress day - no pressure) and I guided her through the set up - along with a newly hired nurse A. (the unit is growing the home hemo program) My needlesticks were smooth no problem. Friday was blood work day, we talked about what panels we were drawing for and we were excited to hear what my KT/V is and H. reminded me that KT/V is not an exact measurement - but we are hopeful - because if it is good and the results of my 24 hour urine (to be completed on Sunday-Monday) I may be able to be a 5x week Dialyzor (fingers crossed - I still have some residual kidney function).
After all that, I was on the machine using Pureflow. I am getting really comfortable with the set up process. Of course on Monday, we'll hang bags and use the heater, so it will be new. I had a visit form my old nurse Ariel. I really, really like him. Throughout this whole process, he has maintained a professional distance, I know very little about him - no real small talk - But, he showed his colours when he walked in to the home training room during his break, asked about my arm, and then straightened out my lines and taped them to my shirt. It was such a sweet caring thing for him to do - he didn't need to - I was no longer a dialyzor on his service - he did it out of habit & compassion. Next week, I'm bringing in cupcakes. (and I am so NOT the usual "bring food for the workers person")
Ok, so this love fest is so not like me - here comes the bitch.... During my run, the social worker came in to do my home dialysis "intake interview". Yes - that social worker. He sat down with a clipboard loaded with a few questions. Now note that this is my home unit for the past 10 months. Even though I am on a different service and in a separate room (located in a corner of the 30 chair unit) all of my records are on-site and the SW covers both in center and home hemo dialyzors.
He verified one emergency number. (which was strange, as I have 4 on file in order of priority/availability) I told him to look though my chart to find the list.
He asked my religious preference. I said none. He asked for my hobbies - I said endless. (no Susie - was not going to say "sex clubs" just for the shock value - I finally got this guy out of my face - I did not want to titillate him (shudder))
He then asked me if I have ever considered a transplant. That is when I just had to contain myself. "Yes, I considered a transplant when I was worked up at St. Luke's and put on the UNOS list in 2005. Those red top tubes that the unit is sending monthly to Rogosian are indeed for transplant tissue matching." He said "oh."
Of course he then asked if I have ever considered hurting myself or others. It took my all to not blurt out "I want to hurt you right now". I just smiled and said no.
And then the corker - "How do you think you are coping with being on dialysis?" - My answer "As well as anyone could." This was a 5 minute interview - frustrating but painless. And I understand that he was just doing his job and that my answers needed to be timely for the transition to Home Hemo - as I promised H. I was going to play nice with the SW as long as all interaction stays professional and in the unit.
He came in 10mins later - made some bizarre sycophantic statement about me seeming to be "smart and resourceful" then proceeded to parrot something that was totally wrong. He said "I understand that you've contacted ADT and they have a special dialysis "Life Call" service" The truth was: I had been discussing "Life Call' systems with someone, and reported to H. that I have only contacted one provider (in whom I was not impressed) - but plan on contacting another - ADT. (I need to have a life call button as I live alone) H. must have discussed this with the SW and he got it all wrong. When I asked H. about this, she just rolled her eyes.
I had a nice visit with the new nurse A. She was a in center hemo nurse in Puerto Rico. The stories she told me make me happy I live on the mainland. Artificial kidneys exploding during dialysis... Using old fashioned thermometers (we have the plastic disposable ones)...
Fluid Info:
Because I have a slight reaction to the dialysate - initially, we do a 1.5 litre prime, and because I am a clotter, we are going to integrate flushes into my run. (trying not to overdo it on the heparin - I was on 3000 units heparin and still the head wasn't clear after rinseback) Friday, I removed 1K which was my normal removal when I was in-centerer. I didn't feel dry though and it prepared me for a night out!. For 4 sessions, I dialyzed 77;78;77;79 litres of blood - so I am well ahead of my average of 96 litres x3 each week. No wonder I feel better. I know that this is setting the bar rather low - but I am ok with that. CKD is an uphill battle - I'll take anything I can get.
I took home my very heavy training manuals - so at some point today or Sunday I'll review chapters 3 & 4 and read chapter 5. (did I tell you I found a typo in the training manual - NxSatge - not perfect... I didn't get any bonus points though....)
In summary: One week finished. I feel familiar with the process & machine. I am comfortable self-cannualting (I still haven't successfully used blunts yet) Hopefully my labs will allow me to be a 5X dialyzor. Next week, after we do a manual (bags) treatment on Monday. Tuesday, H & I switch places and I'll do the Nxstage set up - she'll guide me. My first "hands on".
That's all from my chair on a rainy Saturday afternoon....
See you in cyberspace on Monday!
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:clap; Bravo my friend, sounds like you are handling everything just awesomely :2thumbsup; I love your attitude, i sure hope when the time comes i can be as positive and upbeat as you are, hell, i wish i was like that NOW, ;) You keep up the great work and i am sure everything is going to work out just fine for you. Looking forward to reading how things go on Monday, hope your enjoying your pajama day (i know i am) ;) Love ya :cuddle;
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I'm so happy training is going so well!
Enjoy your jammie day...we should schedule a jammie chat room get-together!!
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How fun, a jammie chat room day, for me, that would be almost everyday, i am always in my jammies ;) :bandance;
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I hope you had fun on your night out and on your pajama day today. Seems like training is going well also, good for you. :thumbup;
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I cannot say enough good about your "journal" - upbeat, thorough, detailed, and inspirational. :clap; :clap; :clap;
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Monday, October 29th Day Five
I've named this Kinky Monday...
Aldente - this one is for you!
Monday morning - Coffee in hand I strolled into the unit. H. had the bags all set up for a non-pureflow run. A. the new nurse was in to train as well. We set up and I read from the cheat sheet - (well at this point, I was only using it for hints) I understood the heater and the multi-line adapter, we had an uneventful prime, we did a 1.5 liter prime to flush the system (I slightly react to the dialysate). I had an uneventful stick - using sharps with my buttonholes. all was well. H. put me on the machine and well... all hell broke loose.
1. There was a kink in the arterial line which made my arterial pressure go sky high. H. tried to fix it - but it was a loss.
2. We had to do a manual return of my blood.
3. We had to find a cartridge that was not damaged in shipping and re-prime 1.5 litres.
4. We had to re-bolus another 25 of Heparin (we lost the majority of the original bolus in the first dialyzer set)
5. In all of the taking on & off, my arterial line worked its way out of my fistula. (we did not notice this)
6. Then we had a clot in my arterial line. we used heparinized saline to flush it out.
7. I spun & repositioned my arterial line - but it was touchy - we started the run with low pump speed & crappy pressure.
8. somehow air got into the system (I think it was either the 2nd heparin bolus or the arterial line coming out)
9. We had to re inflate the arterial pressure pad
10. we had to aspirate the artificial kidney
Finally 1.5 hours into the run - we could up the pump speed to 400 and my arterial pressure was beautiful.
Ummm... I now feel really familiar with alarms... And repositioning my needles by myself... and wasting a cartridge, re-setting up the machine, and re-priming. It all makes for a really long day though.
But - the day wasn't over...
After my run, we went to make a batch of dialysate with the pureflow and the water wouldn't flow. Nope even on the second sac. I actually left for work at 3:30, so I don't know if I'll be dialyzing with bags or pureflow tomorrow. I think that H was going to start ripping her hair out.
So, aside from all that some cool stuff happened too. The Medical Director asked me if I would speak to a Hassidic Jewish man about NxStage as they are considering it for his father. I was pleased to give my spiel (some of my best friends are Orthodox and Yori says that I am "one ritual bath away from conversion" since I am as WASP white bread as you can get - I love it! (makes me feel cultured)) When I told the Medical Director and the man what Yori said, they both burst out laughing.
I also learned that I am fairly calm and methodical under pressure - even when it is my own blood. I hope that this feeling stays with me when I go home.
So IHDer's (and others ;)) it is 8:20 and I am still at work. Today is going to be short.
See you Tuesday!
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Thanks for the update, sounds like the training is well prepared but I know if I ever need to do it I'll need a book called Nxstage for dummies... :lol;
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About the 5 days - have you considered 3 on, 1 off? It gives you a 5 day week most of the time, and keeps you from wasting 20 L of fluid every week. (A good idea if you have to pay for water at your apartment!) I've been doing that since I started, and it works out really well.
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Tuesday, October 30th - Day Six
I did it all by myself! (Do I sound like a two year old who has just been potty trained?)
Today was a good day. I did it all - from set up (pureflow) to pulling my needles - (in honor of Halloween - I bled all over the chair!!) Crikey, pulling your own needles is HARD - if you are a bleeder that is. Honestly it was the one thing that I was nervous about - and for good reason. We try blunts again on Thursday and fingers crossed - I won't bleed so much. Today, I also had my mid-training evaluation and I passed.
I was introduced to my centrifuge today - coolest toy ever! I'll think of EPOMAN every time I spin my blood. Tonight, I am exhausted - after I leave training, then I go to work. A sensible person would have taken the time off - but oh no not this workaholic.
We discussed my prescription - -will I be doing 3 hours/ 5x --will I be 3 on 1 off?? It all depends on how my numbers come back later this week. As of yesterday, my KT/V was calculated at 2.50 - No wonder I have so much energy in the am. I haven't been over a 1.68 since I started Dialysis. Lookout world - I'm starting to make plans for the future. (I still can't decide if I'll do Christmas in the crackhouse or if I'll (oops - I can't say the other thought because they're reading the boards now (a reason the boards should be dialyzors only! J/K caregivers & family members!!) either way - it is an amazing thing to actually be making plans!)
I've done some thinking about my attitude over the past few days. I think that I've developed a pretty strong coping system over the years - I treat everything as an adventure - which to an onlooker it may appear to be naivety or escapism - especially with the health issues that we are all dealing with - but it gets me through the day.
Again - a lame recap - But I am exhausted - it is a good, accomplished feeling kind of exhausted though!
See you Wednesday!
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YOU ROCK!!!!!!
:clap;
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Girlfriend, YOU DO ROCK!!! I dig your attitude towards everything, you are a true go getter, Epoman would be loving you big time :2thumbsup; You keep doing what you do girlfriend, cuz you do it so well. :bow; Love ya... :cuddle;
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You are an incredible person Meinuk. :grouphug;
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Aww gee you guys are so good for my already overinflated ego.... I'm never gonna stop training!!!
Really, I can't stress enough how helpful this site and the people on it have been in getting me to where I am today... (what - am I recycling an old Oscar Speech???)
A year ago right now, my health was rapidly declining... CO2 14; BUN 76; Creatinine 5.1 - I was trying to work, travel and have an active life and it was killing me. (even though I knew it was coming - I still feel as if I was not emotionally ready)
In January, I started dialysis and one day while obsessively googling dialysis I stumbled across EPOMAN's T-shirts - which lead me to the forums. I read and read and read obsessively going from one link to another reading people's stories - trying to compare them to my own and trying to figure out how the hell I was going to survive this - emotionally. My friends & family didn't want to hear 24/7 dialysis.
It took me a while to find my voice in this forum. I went back to read my old posts and I realised that I was sticking my toe in and treating the forum like a therapists couch - "How" seemed to be the biggest questions that I had. How do I get through every day? How do I fit being dependent on a machine into my life? How do I have a life when so much time & energy is taken up by medical issues... Over the past few months - I have found out how. By listening to all of you. IHD is truly a support group. Posting about my training is my way of hopefully giving back, because I have received so much.
And, I got to go to a wedding officiated by ELVIS!
:grouphug;
Now, on to Wednesday
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Wednesday, October 31- Day Seven
Happy Halloween!!
It was a bright and sunny morning in NYC...I walked into a closed dark room.. (No, this isn't a horror story...)
It was a closed dark room though. My nurse didn't seem to be in yet. So, I flipped on the light switch, took off my jacket settled my stuff in, and had a thought... "Why Don't I set up the room?" - So, I did.
I gathered supplies, Chux, Heparin, saline, cartridge, sponges, needles, betadine, ETOH swabs, tape, Bandaid, glove etc. Setup my "cannulation station", then moved on to the cycler. I hung saline, pulled out a cartridge, weighed myself - then sat down and took my vitals. That is when H. walked in and said "You did this?" I smiled yes. (more liked beamed) She laughed at me and then called the trainee Nurse A. in to watch me do a full set up. I did - no problem. (I almost contaminated the saline line by dropping it after it was uncapped- but now - I'll remember.)
Cannulation was uneventful and soon enough I was pumping away at 400 taking off 1K with a slightly high venous pressure and a near perfect Arterial pressure. This was good for my training nurse - as she had a lot of paperwork to catch up on, so she went to her office and I settled in for the next 3 hours.
I took my vitals every 1/2 hour and recorded numbers (volume, flow and speed) every hour I flushed 100cc (trying to keep my heparin dose low) I had visitors from the unit - checking on my progress and showing off their Halloween Costumes. (A hooker,the African Queen, an albino Gorilla, a cowboy and a 50's sock Hop Girl)
The dietitian came to speak with me - we went over my diet and what to expect our interaction to be. (even though this is my home unit, I was on the night shift under a different Dietitian - so this was the first time I met the Daytime Dietitian) She was lovely and she promised to fax me real labs - not the normal dialysis sticker sheet that is handed out. I like her.
Today was the day that I found myself curling up in my chair wrapped in a blanket and daydreaming.... I don't remember the last time I daydreamed - just letting my thought wander - it felt great - and my BP went down. Who ever would have thought that I'd be able to relax in a dialysis unit. That goes to show my state of mind. (which is a totally different state - dare I say country - than where I was even two months ago!)
At the end of my run, H. and I planned to run a temporary disconnect, reconnect and flushback of the recirculated blood. When I had 30 mins left - we did it. She talked me through the steps and I did it. Soon I was free from the machine with flushed access and taped syringes to my shoulder. We went for a short walk around the unit and then I put myself back on and returned my recirculated blood then programmed the ultrafitration to remove the excess saline from the recirculation in the last 30 mins of my run. All went perfectly... but then I had a hiccup. My venous pressure was well over 300 (not advisable) we tried a flush - and still the number was >300. Then I looked at my access. I hadn't taped very well when I first cannulated myself, and all of the movement had worked the needle loose. Moral of the story - Tape yourself well the first time... You never know what is going to happen.
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Thursday, November 1 - Day Eight!
Well, today I reenacted the prom scene from the movie Carrie!
I set up, cannualted myself (Sharp Arterial/Blunt Venous) and was just about to put myself on all by myself when...
You know - rubber gloves suck! I had a hard time loosening the cap on my venous line (to bring the blood to the end of the line) I fumbled with the cap and whoosh -dropped the cap and blood started gushing out. (at least my needle placement was good!)
But then... I forgot to tape the venous line - so the blunt came out and my arm erupted like Vesuvius on that fateful day in 79AD. Which warranted my first swear word of the day. (begins with s)
I won't forget to tape my lines again....
After H&A cleaned me up - H. Drew blood and put on my lines. I had an uneventful run. I am testing my dry weight - so we pulled off 1K the first hour- no problem.
I ran for 3:03 at a FF of 32 with 22L. No flushes (we upped my Heparin to 3000)
When it came time to come off - because we went nuts with the tape - (overcompensating for forgetting to tape the venous line) Taking off was a bit rough it was the first time I took off both - but I survived with only a little blood loss!!
tomorrow am I am really going to ergonomically look at how I have the machine set up and try to simulate home - that way I'll find the best positioning for when I am dialyzing solo.
All in all - it was a good day - I learned an important lesson and I learned it in a clinic environment. That will really help me when I am at home. And - we used my centrifuge today (man - that thing is loud!)
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Hi Meinuk--
It's great to read your posts. The last 2 give me a real sense of how having some control over your treatment and gaining confidence with the process is really great for your sense of well being! Even with the Carrie bloodbath, you were in an environment where it was safe to fail and bounce back. The best lessons are probably learned when there's a hiccup where you can actually get on the job training! This journal will be a great example for others who will train later.
:2thumbsup;
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Glad you are okay. Like you said you can learn from it and play it over and over and over in your mind and it won't happen again.
Good luck tomorrow. :beer1;
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RE: pulling your needles
There isn't much information out there about taking the needles out (some good information about putting them in). A few months ago I found a simple step to decrease the bleeding. I pull the needle out a quarter to half the way and then proceed with one handed needle removal. I found that starting the needle out makes it easier to get the gauze right on target.
I like to compare dialyzing to driving a car and unintentional blood spills to spin outs. I say I have had a few spin outs but the airbags have never deployed. Amazing what a mess blood makes.
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Sharon has real good luck by pulling the needles out half way, placing a sure-seal band-aid over the needle entry sight, then she pulls the needle, presses on the sight, then places a gauze pad and a clamp on it for 10 minutes, then an x of paper tape for a while just to be sure......
Tom
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I love the Vesuvius reference...I used that with my 8 year old when I had a gusher and she looked at me as if I had 3 heads!!
Screwing up is just part of life...and being able to screw this up a little and still live gives great confidence, doesn't it?
There are so many steps that it's easy to forget something along the way, but curse a little and move on...you're doing incredibly well and I'm very very happy for you!!
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Sharon has real good luck by pulling the needles out half way, placing a sure-seal band-aid over the needle entry sight, then she pulls the needle, presses on the sight, then places a gauze pad and a clamp on it for 10 minutes, then an x of paper tape for a while just to be sure......
Tom
We use the SureSeals also and we LOVE them, but in the reverse order. We use the gauze pads for 5 to 7 minutes. (Since Mike is no longer anemic he clots very quickly even though he uses 6,000 units of Heparin.) Then we use the SureSeals. We started using them after he used his fistula arm to exert pressure as he got out of the chair and blood spewed out from under the regular band-aid. The only thing we found that cleans up blood easily is peroxide. I never knew before that it was so sticky!
You probably already know this but the use of clamps is risky. You may want to do some on-line research and reevaluate whether you want to continue using them.
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I never knew before that it was so sticky!
Wet blood on everything makes it difficult to clamp the lines because it's so slippery.
About 10 years ago, the late Peter Lundin ( http://www.aakp.org/aakp-library/celebration-of-life/index.cfm and http://www.aakp.org/aakp-library/Peter-Lundin/index.cfm ) and I talked about his home hemo training in 1966, and I recall him saying that part of the training included the doctor cutting a line so the patient could learn how to deal with an emergency at home --with lots of blood spurting around.
8)
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I never knew before that it was so sticky!
Wet blood on everything makes it difficult to clamp the lines because it's so slippery.
About 10 years ago, the late Peter Lundin ( http://www.aakp.org/aakp-library/celebration-of-life/index.cfm and http://www.aakp.org/aakp-library/Peter-Lundin/index.cfm ) and I talked about his home hemo training in 1966, and I recall him saying that part of the training included the doctor cutting a line so the patient could learn how to deal with an emergency at home --with lots of blood spurting around.
Yeesh - that seems a bit too extreme.
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Friday, November 2 - Day Nine
I brought cheesecake for the staff today... They earned it.
I also walked in armed with the suggestions that you all had for me RE: Take Off - (THANKS!)
Umm.. Normal set up - all by myself. Arterial Cannulation - still need sharps!! Venous - Perfect with blunt. I remembered to tape, and I did not fumble with the lines. BUT...
When it came time for me to put my venous on, the connection broke as I tried to take it off the saline spike. Cheap friggin plastic! And you know - when one connection goes - you have to waste the whole cartridge and start all over again. And, my arterial is extremely positional so I ended up not getting on the machine until 11:17 and when I did, I had to adjust and readjust my arterial.
Again - so glad that it happened in the clinical environment. (sigh - that is my new mantra...)
Pull needle 1/2 way, sureseal then pull & wad with 4x4 worked for me - well - almost. I need to learn patience. I peeked too soon at my venous and saw a bubble of blood amassing under the sureseal, and then pressed down really hard - which - if you are a student of physics - caused said bubble to squirt me right in the face. A. (the trainee nurse) & I were laughing so hard - I started to cry. Really - why does my NxStage training always seem to be like an Itchy & Scratchy Cartoon? All I did was peek!
So folks - that is it. the end of my second week of training - I'll be home soon!!!
Monday - another day with Bags & heater - and I'll be flying solo - alone in the room - I'll call H. if I get in over my head!!!
More lessons learned. Connections are fragile and don't peek - give clotting a chance.
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>>singing<< all we are saaaaying is give clots a chance
enjoy the weekend...you've earned it
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:o
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You know - rubber gloves suck! I had a hard time loosening the cap on my venous line (to bring the blood to the end of the line) I fumbled with the cap and whoosh -dropped the cap and blood started gushing out. (at least my needle placement was good!)
Wearing gloves is standard operating procedure but does it make sense? At least in the case of self-canulators my opinion is that gloves are worse than bare skin. What purpose do gloves serve? Gloves make incidental contact with open blood lines harder to notice and they complicate making connections, diminishing dexterity. I clean my hand carefully, gloves are not sterile. I think gloves are meant to protect the wearer, no need to protect myself from myself.
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Ha ha ha ha .... I almost snorted coffee all over my keyboard this morning!
KC - you got it - I was thinking of "Giive Peace a Chance" when I wrote it. You know what they say about great minds.... :)
Zach - That sign cracked me up. You know I was always the child who unwrapped her x-mas presents - played with them and then wrapped them back up - then feigned surprise (badly) on X-mas morning!
And BP - I am fully intending to d/c the gloves after my first home session with the trainer. I announced in the beginning "I'll wear gloves to observe universal precautions during training - but not at home." Of course in my mind I finished that statement with Bill Peckham doesn't wear gloves - But if I actually spoke all of the times I've thought "Bill Peckham does this or Bill Peckham does that ..." Well... you know I'd sound a bit strange. And I really am trying to be the best trainee possible - compliant and non combative. - (it took a lot of signatures for me to be able to dialyze solo - and the machine isn't home yet) I'm saving my debating skills for the kitchen table at home.
Well, the builders are here tearing down my kitchen ceiling and then hopefully putting up a new one - so, I'll be sweeping mopping & dusting all weekend... How exciting!!! (Insert sarcastic grin here!)
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You know - rubber gloves suck! I had a hard time loosening the cap on my venous line (to bring the blood to the end of the line) I fumbled with the cap and whoosh -dropped the cap and blood started gushing out. (at least my needle placement was good!)
Wearing gloves is standard operating procedure but does it make sense? At least in the case of self-canulators my opinion is that gloves are worse than bare skin. What purpose do gloves serve? Gloves make incidental contact with open blood lines harder to notice and they complicate making connections, diminishing dexterity. I clean my hand carefully, gloves are not sterile. I think gloves are meant to protect the wearer, no need to protect myself from myself.
ITA, Bill. We haven't used gloves since right after we came home from training.
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I use one glove for holding my sites after - only because I hate getting blood on my fingers if it squishes out from the pad I'm holding. The rest of the time - set up, snapping and tapping, cannulating - they just get in the way.
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Monday, November 5 - Day Ten!
Reality....
How do you set up the machine for solo access? That is what we are doing this week. For those of you with helpers... Well, let them know that you appreciate them because - although the whole process is "doable" solo - you need to adapt. Trainee Nurse A. is learning along with me - so there were a couple moments of "who is the student?" - I just decided that I'm gonna up my coffee Rx for Tuesday - that'll make me a more patient person!
Here's my report card so far:
Setting up the machine Pureflow or bags; A+
Cannualtion of my unruly access; A+
Putting myself on the machine; B - with the machine on the left (same side as my fistula), if I reach over my access and move too much, I mess up my arterial. We realized today that my arterial probably won't be buttonholed for at least another month - So, I'll go home on sharps arterial and blunts Vvenous. At least I now know that eventually my arterial should settle down and play nice with the needles! And then there is the actual putting on the lines one handed while maintaining sterile technique. Again, it can be done - I just need to build my dexterity. I know that all of this will happen with time.
Mondays are just so - well - they sneak up on you. My amazing healing powers closed both of my buttonholes. (No scabs to pick off and it was almost like re-piercing flesh. How's that for a visual???) I still managed to use a blunt with my venous but it took a while and the needle just didn't want to slide in.
Once I was on the machine - my run was perfect.
Take off was a little bloody - I had to draw my bloods for tissue typing and I put the vaccuatiner adapter on too tight and when I pulled it off my line, I also pulled my venous - oops. But - My "Crap I'm bleeding!" reflexes are now so well honed that I had a 4X4 on it before my training nurse even noticed it. And I didn't peek - so 3 mis of 4X4 and my venous was good to go.
My one handed needle pull with my arterial - well today it did it upside down because of the positioning (sureseal on top) and a small stream of blood - all under control and soon I was off to weigh myself and pack up my things and head home. (I skipped work today!!)
Over all I give my takeoff a B.
I also brought my centrifuge home. I'm looking at it right now as as I type - wondering if I'll get into trouble if I spin something in it... But what??? Hmmm maybe I'll just respect the Centrifuge - after all not having one caused EPOMAN such grief....
That's my Monday - see you tomorrow - same place....
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Honestly, I'm having enough trouble typing this one-handed...I don't think I'd have the dexterity to do this alone so you're progress is even more impressive to me! Keep it up!!
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centrifuge: it runs quieter with a test tube opposite the one with the blood sample (if it is the type with a four tube capacity). I keep a tube with saline as a counterweight.
the whole one hand thing: I have thought about doing wet sticks - sticks with the needles already attached to the lines. However, the buttonhole needle with 16" lines allow me to use my right hand (I canulate my right arm) so I never did try wet sticking. Would longer needle lines help? Do you have access to buttonhole needles with the longer lines? Would that help?
buttonholes: wish I knew a trick I knock wood every time mine work. Are you using one set? and they still closed - is your fistula shallow?
I say: time for the trainers to step aside. ;)
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Tuesday, November 6th - Day Eleven
What a difference a day makes....
I did everything today from set up (pureflow) to take off (the IHD way) - very little bloodshed. I'd even say that the MPAA would give it a G rating. (compared to the "Carrie Day" which was definitely NC-17 (warning language and blood!))
H. my training Nurse stayed in her office and did paperwork and A. the trainee sat silently while I talked her through the process. It was a quiet, peaceful day...
We did go over my supplies and the delivery schedule. (my Pureflow & control panel are being delivered tomorrow)
A lesson learned on Monday.... Don't moisturize your hands before a run. Yes, we all hate dry skin, but being able to grasp is a very important thing in Dialysis!
So, that is what a quiet dialysis session is like. Refreshing. Also, I got some very good news. I only have to run 5X per week. (I have my residual kidney function to thank for that)
We also had a clinic visits today - I love it. It is like you are really being seen by a Dr. - A laundry list of what meds you are on and what your treatments are like - follow up on any medical issues and lab work ending with a "How can we make this better for you?" I felt like an adult human being, not a number in a chair.
And finally, BP: I have no words. (relish that - it doesn't come often!) We ordered my 16 inch blunts today.
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Girlfriend, i am soooo happy that things are going so well for you, i am excited for you to start this thing at home and you can really get on with your life, hopefully we'll be able to chat a little more too, i miss ya (it was nice talking to you this morning, thanks for thinking of me) ;) I hope to hear from you again soon. :2thumbsup;
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Hey Meinuk,
As a former trainer of NxStage, please just humor your nurses, it will make your life and theirs a lot easier. All of us nurses know that you are going to do what you want when you get home alone. Just humor us so we can officially do our paper work. I actually was telling one of my patients that one day and a PD nurse over heard me and started chastising me over it. I had to bring her back to reality. As long as we teach you the proper way and have it documented... We are not there to watch every move you make and we are all human and want to do things our way. Hey another song.
Now we have "Give clots a chance" and "I'' do it my way"
kruep
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You are doing so GREAT! You'll be home soon, all hooked up, and full realizing the wasteland that is daytime TV! :)
Feel free to come on here, go to the chat room where one-handed typing IS allowed! Join NetFlix...go to the library...just don't let your fully functioning brain get depleted by the numbing assaults of Judge Judy, Maury Povich, or which tramp is having which cad's baby on some soap!!!!
Seriously...you're doing great...you'll be home in no time!!
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Wednesday, November 7 Day Twelve
Fun & Games at Home Hemo Training....
This week is solo - but I brought a visitor this morning. My friend Nancy. She & her husband are #2 on my emergency contact list - and she had never been to the dialysis unit - so - since I won't be there much longer today was the day.
I quickly realized that I had maybe prepared her too well... because no matter what I did - she compared it to the videos on the web that I had shown her.... "But he really has to pick his scabs off - you're not..." My response -"my scabs are small... I am a girl... my fistula is up arm and I mouisturize!!!" - Where would we be without the internet??
We actually had a lot of fun this morning. Maybe too much fun...I narrated through the whole process of set up and put on (for both Nancy and trainee Nurse A.). But I learned something - my nephrologist stopped by mid-cannulation (arterial of course) and I mullti-tasked. He wanted to talk about a dinner that he went to the night before RE: NXStage, Home Hemo & Nocturnal - and he thought that I should have been there - so he recapped the whole event for me - while I was cannulating - and I just kept going and having a conversation at the same time - well, I ended up doing a crappy job on my arterial - but my venous was perfect.
So, after my Dr. left - and I was starting my run - I realized that I'd have to re-do my arterial - so I got to do a disconnect and a second stick - bevel pointed towards the anastamosis. (my initial placement had the needle placed in the wrong direction (and I thought I was so clever!)
Lesson Learned: Focus - don't multi-task.
The rest of the run was perfect. Nancy left before I took my first set of vitals - so I did some work (e-mail & phone) and chatted with Trainee Nurse A. and soon enough my run was over and I rushed home to meet Fed-ex.
Because of the disconnect I had to take off an additional .7 - along with the 1K that I was going to pull. So I ended up taking off 1.7 which made me woozy.... A bit too much. The train ride home was long...
I am home now, still waiting for Fed-Ex to deliver my pureflow. As long as it gets here (fingers crossed), tomorrow after my run my trainer & the trainee nurse will come home with me after work and we'll set up the pak and a sac. Then take a sample for testing and we are green light for at home next week!
Of course after my first run at home - I'll be back at work full time and dialyzing at night...at home...in my own chair...watching my own TV... surrounded by boxes and boxes of medical supplies!!! It is already an interesting November and we're only a week in!!!
That's Wednesday...
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The freedom of being home is going to be worth the training schedule. Good Luck and Congratulations. :grouphug;
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You have a way of journaling that makes us be there with you. Thanks for your training log. It makes me less scared to ask to do home hemo next week with the doctor.
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Thanks Kit -
It goes both ways you know. I can write about my experience training, and all you share so much - that we are not alone.
I walk into training almost every morning and my training nurse asks - "what now?" because I usually have an "I told you so" grin on my face and I'll tell her about sureseals for take off - or 16" blunts or any of the other things people have shared.
All off this made my training so much easier and makes my dialysis manageable. And my training nurse learned something too!
I hope that everything goes well for you next week!
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Thursday, November 8 - Day 13
Fed-Ex never showed up last night... No call - no show. (oh they got yelled at!) Where is my Pureflow??? (they swear it will be delivered today...)
So, today is about deliveries...
scheduling Fresinius for my medical supplies (Friday after 4)
scheduling NxStage for my machine supplies (Tuesday after 4)
re-scheduling fed-ex.... (fingers crossed)
You know even though the clinic does the initial ordering of supplies for you... You really do have a lot of administrative work to do. Between filling & e-mailing out your flow sheet - sending off your labs and managing your supplies - I think that the whole experience is resume building! It is a part time job!!! (I want a raise!) Ok, I'll settle for a great KT/V...
But let's move back to training.....
Perfect set-up & put on (almost) I forgot to push the pureflow GO button a final time and I wasn't getting proper dialysate. My Training Nurse was happy that I still needed her.
Speaking of pushing buttons... I know that Black & others have commented on how hard those suckers are - and let me concur - they are hard to push! I understand the reasoning - to make sure that there are no accidents - but geesh - I thought that I had upped my dialysate to the max and still I only had a FF of 28 - so I called to training nurse to ask why - and she said (for the umpteenth time) - "push it like you mean it!" Soon enough my dialysate was up and I was running at a FF of 32/pump speed 400 & taking off .7.
During my 3 hours, I was on the phone yelling at fed-ex, I helped the trainee Nurse A. study for her upcoming exam and I answered some work e-mail. Pretty boring - can't wait to get home and watch some bad TV while dialyzing. (I'll admit it - I TIVO Judge Alex!!)
At the end of my run - the last seven minutes take FOREVER - I carefully hand pulled my venous! No blood! Whoo hoo! When it came time to pull my arterial, I looked down to see that I had already pulled the needle out. (My lines had been taped together and when I put the venous in my lap - it pulled the arterial. Good news though - it had already clotted - NO BLOOD!) So, we ended the day laughing.
I took my vitals - weighed in, grabbed my stuff and headed home.
And on an "I'm feeling better" note: On my way to the subway - I stopped at the Lincoln Center Farmer's Market and did some shopping. I picked up some late season Basil, some Apples, a few zucchini and an Acorn Squash. So, tonight I'm going to make Pesto. And in the next couple of days I'll decide what I am going do do with the other veg I bought... I can't remember the last time I felt so good just shopping at a Farmer's Market.
So, that was my day #13... We're finishing up this epic - just a few more entries to go!!
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This is off topic a bit but let me say that the idea that the buttons being hard to push is a safety feature just makes no sense to me. The Aksys PHD had a touch screen - I could push its buttons with my back scratcher, which was great but I don't think it ever occurred to anyone that we were at risk of someone leaning against the screen and cranking the blood flow up to 1,000 or something. Or children running around, playing with the machine. Has anyone ever had someone just randomly poke their machine? Seriously - there is no safety issue. It has to be financial. Maybe they got a deal on vintage LED interfaces.
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Friday, November 9 - Day 14
I am writing this on Saturday... I needed some distance... a lot has been running through my head and I needed to process it. Making the transition to NxStage is the best possible thing that I could have done for my health. My bloodwork is amazing. Aside from a high Creat and BUN - it is the best that my labs have been in 5 years.
But I am going to share with you my realization - Theory vs Reality... When Fed Ex delivered the pureflow boxes, the driver put the pureflow box and the control unit box in the middle of my living room floor, I was stunned by the size of the boxes. (now, note that I live in NYC and I have a small apartment - and my living room (all 11x14 of it ) is now my TV room, my living room, my dining room and my dialysis room.) I'm not house proud - all my life anywhere I've lived has just basically been a launching pad for what ever my next adventure may be - and I've lived in some interesting places. But this is a first.
I brought dialysis home with me. I now have a daily reminder that my life is different. In a lot of ways - I was hiding in the unit when I was dialyzing in-center. I'd leave work at 4:30 and for a few hours I was in a different world - then I'd go home and return to my usual routine. (exhausted and crawling into bed and then tossing & turning all night with ESRD insomnia)
On Friday - when the bulk of my supplies were delivered, I was overwhelmed. My first thought was "what have I done?" I turned my living room into a clinic.
So, over the next few weeks - I expect that there will be changes on my outlook - I'll get outside more - go to movies - see friends - and reclaim those hours that I spent hiding in the dialysis unit. I own my schedule now - I didn't expect the reality of home dialysis to have such an impact. I think that it really is a chance for me learn more about myself and how I define myself.
Ok, enough about that - now on to training.
Friday morning went well. I am comfortable with the whole process and I'm ready to go home. I did start the prime before I attached the access Pad, but that was easily recovered. Other than that it was a perfect run.
My at home prescription for the first month will be: 20L 6x (for the first month to establish best at home baselines) pump speed 400 FF 32 with 4000 Heparin with 2 100cc flushes in the run. As long as we chart excellent numbers in my first month - then I'll switch to 5x.
My training nurse drove us to my apartment after my run - she had to be the person to set up my pureflow and prime the pak. While sitting in traffic, we discussed KT/V and deciding the whole prescription. I mentioned the different prescriptions that others were running here on IHD and she & I discussed her NxStage Training and the future of the center's program.
These are exciting days for dialyzors - we have more and more options on the horizon - we really are breaking the "in-center" model- more of us are living healthier and making dialysis just a therapy - I have high hopes for at home hemo industry. (I also note that even though we have 1400+ members here on IHD less than 150 are active on a daily basis - and there are thousands of us out there in the world, so I've started telling everyone I encounter at the unit to check out IHD and even my urinator friends - when they encounter people with CKD they have started mentioning IHD) Knowledge is power.
Now, I am going to sign off and convert my little coat closet into a medical supply closet - slowly - I'm gonna make it work!
Monday will be my next to last day at the unit..... WOW time flies!
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Thanks for telling how it is Meinuk! It's very interesting and thought provoking to hear about this "adventure" you're having!
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Meinuk-you are amazing. You said you could do this alone and you are! As for all the supplies--throw a pretty piece of fabric over it and be done! Next week will be a great week for you :clap;
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out of the over 1400 people on IHD there has got to be more than 150 people active on a daily basis. at least i would think so. :twocents;
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Hey Meinuk, I have been doing home hemo for 7 months , and i love reading your training journal you have a way with words thanks for sharing and good luck when you get home :2thumbsup;
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So you've now learned the one dark secret of home hemo...it is right in your face all the time. My unit is even in our downstairs family room, but it's still there all the time. You have to develop a different relationship with dialysis...I tend to think of it more as a household chore...just something that needs done everyday (with one cheating day off!) It's not a place you go anymore...it's just a thing you do. OH and as I think you've mentioned, it's also chock full of paperwork requirements, supply management, time management...it is a part time job, but despite all that, it is still MORE than worth it and I know you'll be happier and healthier and I'm so honored to have been around here to follow your journey!
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Meinuk, I have enjoyed reading your account of nxstage training! I'm PD'r, but I can relate with your shock at the AMOUNT of STUFF needed!! My gosh!! But as you say, the freedom so outweighs the cons of home dialysis. I wish more people could read your account. You are such a wonderful witer, I felt as if I was there at times, with you!!!
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Well, I'm glad that you feel as though you are right there with me, because you are. (literally, my phone has internet!)
For the past few weeks while I'm at training - IHD and it's members are right there with me. I've learned so much in the past 11 months - from reading the boards to meeting people who have made my dialysis journey so much easier. All of this prepared me for training and has softened the blows of dialysis.
I'm almost settled in at home (just waiting on my actual NxStage and fluid supplies) - I'm now calling home "Anna's little Crack House and Box Emporium"
It had been good for me to blog about my training. Something to focus on and try to be disciplined with - and hopefully it will help demystify the process for newbies. (after all I only just lost my newbie status on IHD in September!) Also, there has been a fringe benefit - I haven't really talked about my dialysis situation with some people - either I didn't want to worry them or I just wasn't ready to admit that I am on dialysis - I've been sharing my recaps with some of them and it has helped me bring dialysis out of the shadows of my life. Which is a good thing since my new dialysis machine is going to feature prominently in my living room!
I'm already starting to panic about "what next?" - I think that in December I'll take a step back and re-evaluate. Maintain myself on NxStage and start thinking about the future...
Thanks for all of your support - and KR - the honor is mine!
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MeinUK, Have i told you lately that YOU ROCK?? lol, well, ya do :2thumbsup; and i love ya :cuddle;
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MeinUK, Have i told you lately that YOU ROCK?? lol, well, ya do :2thumbsup; and i love ya :cuddle;
Right back at ya chica! :grouphug;
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Meinuk, I hope you can feel how much we all love you. You write just the same way as you talk in person-very easy to follow and understand everything you are explaining. Hoping this week goes extremely well and you are flying solo in a few days. Just remember, we are here cheering you on. :clap; Waiting patiently for the next chapter to be posted!
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Pod Line attachment: I have learned that waiting until after priming the machine and you have hit "stop" and enter the correct numbers to make the Pod line connection, very rarely have to reset the Pod since doing it this way, If I carefully follow the manual (and the recently revised) procedure that I still had to do several "resets" during the run.........
Tom
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Monday, November 12th - Day 15
I am really not a Monday morning person....
To top it off I seem to have done something to my left thigh muscle - fingers crossed that it is just muscle strain - but I woke up in pain on Sunday am and crap it hurts. Noting like having a sports injury when you spend 4 hours in a chair every day.... That's just mean as far as I am concerned.
Let me start with Sunday Night in my living room
I stayed up until 1:00am making my first pureflow batch. ( I needed to have a fresh batch to draw water samples for state testing from both the Pure Pak and the Sac.)
Of course, because I am gun shy when it comes to running water... (gee I wonder why) I pretty much stayed up all night listening to the pureflow unit do it's thing - expecting the floodwaters to break. They didn't - and when I looked in the chamber at 7:30 am - I had 60 Liters of dialysate. I performed a chloramine test and then performed a sterile collection from both the Pak and the chickenfoot. (All before I had any coffee!)
I packed up my stuff, headed out the door and hit the Bodega for coffee and a breakfast sandwich. Soon enough I was on the train en route to my next to last training day!
At the Unit
On Monday we use bags. My prescription is 20L. Today I did the set up with out my cheat sheet. (I accidentally left it at home) umm mistakes... yes... I forgot to prime all of the dialysate lines (I was only using four) and I taped the drain line to be a fountain rather than a drain (It was spurting straight up - but still flowing down the drain) so we had a lovely little tinkling sound when I started my run. H. had a great time trying to source the sound!! And for some strange reason... I forgot to turn on the heater.... (even after having heard a cautionary tale - maybe I was just being sympathetic - nah - I just hadn' had enough coffee ;) H. caught that rather quickly and I suffered no ill effects.
After that, the run completely uneventful. I only took off .4 because on Friday - we had taken off way too much. By Friday night - my blood pressure tanked and I was exhausted (and surrounded by boxes..)
Take off I was alone in the training room and perfect. (still using the IHD way)
I was a bit lazy today though. I hadn't prepped for my take off so, 30mins before the end of my run I asked H. to gather my supplies for me. She did - and she understood that I was just taking advantage for the moment. (sometimes it is nice to be pampered!)
We also calendered my dialysis schedule through December scheduled my first clinic visit and organized when I'll be doing my blood draws.
We're tying up loose ends!!
So, my next to last day ended early, and I dashed to work - ordered some Vietnamese for Lunch - Pho - and here I am typing away...
Tomorrow my last day at the unit and my first NxStage fluid delivery...
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Tuesday, November 13th... Day 16 - My Last Day at the Unit!!!
Oh my IHD friends where do I start??? On my commute home from the unit I started composing this post in my head (I do that a lot) And everything was all sunshine and nice... It went like this...
You know, as I walked through Lincoln Center - on a beautiful day in NYC surrounded by iconic architecture, the fountain, blue sky, posters of upcoming events and one massive naked x-mas tree (yes a bit early..) I had my Mary Tyler Moore Moment - I wanted to spin around and throw my sharps container in the air to celebrate. (for those of you born after the 70's - trust me it was a happy moment)
Well, I hopped on the train home, and soon enough and while lost in thought thinking about December, I strolled up the hill to my apartment (over 90 mins early to meet my NxStage delivery) and what do I see but an empty van parked in my driveway. Huh? As I walked up the stairs I saw the driver saying thank you to my neighbors. Huh? And then they said "there she is" - Then my blood boiled. The driver was just leaving after delivering all of my supplies to my neighbor. Oh boy - was he about to have a bad day. What lit my fuse was when he told me that "I was just doing you a favor".
Guys & Girls. Let me admit this. I don't yell, I don't bluster. I eviscerate. I am scary angry. I don't get that way very often. Maybe twice in the past four or five years. I come from a family of scary angry people. So, I've learned to always assess the situation - if it won't matter in five years - let it blow over. If it will matter, then go for it.
My logic was that this driver needed to learn his job and realize that he was doing no one a favor but himself. And after I finished with him, while he was moving the boxes to my apartment - I called Nxstage. After I finished with NxStage, I called my Nurse. Then I sat down and had lunch. (the driver fled)
So, I guess that's blown the Mary Tyler Moore fantasy moment....
Now on to my last day of training.
I was lazy. My set up was adequate - we used bags. I forgot to unclamp the drain so my flush was weird. (glad that I noticed that it was weird and found the clamp) and then I forgot to unclamp one of my arterial clamps. So, I started with alarms. All easily recovered.
Perfect run with 2 100cc flushes. (I still clot) until the last :27 I got a new alarm - and air in my dialysate line. Hmmm that was a new one for me. But not for my nurse. Apparently sometimes the frangibles in the dialysate bags clog the port and I had one almost full bag of dialysate, and the pressure was sucking air out of the three empty bags. Easily recoverable if you know what to look for. I'm glad that it happened at training. (yes, I still have my mantra)
I have a lot of thoughts about my whole in-center experience, but now, in perspective it was only 11 months out of my life. And that is baby steps compared to many of you. So, tomorrow will be my last training post. I have to say that I am now reflective and totally spent - both emotionally and physically. I'm going to take the month of December and hibernate - then start 2008 with a clean slate - or at least that's the plan - and you know me, I always have to have a plan.
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:grouphug;
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ooooo. I am so glad you were home in time to catch teh delivery guy. Some favor. He'll know better next time!!!
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Ah, delivery schedules. My NxStage supplies, after the first equipment delivery, all come UPS. They rarely come on the day they are supposed to be here. If the schedule says the 16th, it might be the 15th, 16th, or 17th. I don't wait for them - they just pile everything on the porch and leave it, rain or shine. My other medical supplies come thru Fresenius. They always show up on the day they say they are coming - just never at the time they say they will be here. They are either early or late, but rarely in the two hour block they give as a delivery window when they call to remind me.
And then there was the courier who brought my new NxStage when they had to replace it - who simply stood on the porch looking confused while we attempted to switch the machines around quickly so the batch in the pureflow wouldn't be without power for long.
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Girl, i am sorry but i had to laugh, i can just see that poor delivery driver hussling his ass to get the hell out of dodge, lol, he probably feared for his life, that is CLASSIC. :2thumbsup; I am glad that he did move those boxes for you though, that is the last thing you need to carry them boxes, ugh, Hope your having a better evening my friend and damn, i wish we lived closer, we could hibernate together and catch up on some movies :cuddle;
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How many boxes did you receive?
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Angela - thanks for the hug.. I have to admit I needed it.
MyssAnne - The joke is - I was so early that I was going to stop and do some shopping - but oh no, ws going to get home and arrange the room for the delivery. Goes to show - the best laid plans....
Jbeany - Here, my provider pays a lot of money to a NJ delivery company - I was told this was to ensure that medical delivery are timely & accurate. Hah. I guess that I had certain expectations.
Susie - I think that anyone who witnessed the event would have laughed. Out of relief that they were not the person on the receiving end. And you'd be amazed how many "apology" phone calls I've gotten this afternoon.
& BP - NxStage 10 dialysate (2 broken) and 15 others. (purepak, sacs, cartridges & drains etc.) - which brings me up to a grand total of 52 boxes delivered in total.
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Anna you are so articulate and your explanations are clearly colorful. I love reading your posts. You really should consider writing a novel or something. I'm glad you took care of the delivery driver. HA! glad it wasn't me.
I'm glad you are finally free to dialyze at home.
I am so glad we met. You are so special.
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Ohh Sluff... worse than me being angry is my crying!!! THANK YOU! And meeting you & Christy and being at your wedding - well that was one of the highlights of my 2007. (A year that needed as many highlights as possible!)
This brings us to tonight at 8PM... I've been dealing with boxes and cleaning and broken dialysate bags and everything. I finally got everything garbage bagged up and I opened my door to bring it all outside and there were two more boxes that the delivery guy had left next door. (I should be laughing by now, right???)
So BP the new total is: 54
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We all enjoy your stories so much. You make us laugh, cry, hurt and every other emotion. Just last night, I was saying to Beth that it is strange how much we all bonded in Vegas. I appreciated this" second home" before Vegas, but it means even more now. I was laughing so hard visualizing you and the delivery guy. He probably kept wishing he had left 10 minutes before you got there! Beth is so excited about seeing New York at Christmas. Save a moment of your hybernating time for a lunch date with her! She is a planner too and I think her plan now is to visit IHD members all over the world. Not a bad plan! Love you and will be looking for the next segment of the story :cuddle;
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The adventure continues...the main thing, and you seem to get this, is to keep some sense of humor about all this. There are so many cooks involved in this recipe: nephs, training nurses, customer service at NxStage and Baxter or wherever, delivery guys, tech support, on and on. While there can be comfort in numbers, it also means there are multiple opportunities for miscommunication, human error, or just plain insanity. Keep your wits about you...do what you have to to stay healthy, and <snap snap> lay down the law girl!! ;D
Hope today has been a great day!!!
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Wednesday, November 14th - Home Sweet Home
All I can saw is whew. I'm typing this on Thursday because after my run ended, I sat in my chair, sent an e-mail, then started making some phone calls, cooked dinner (a modified version of Coq au Vin) - then sat down to post - I was amazingly sentimental last night - mid post, my laptop died. Hmm did technology fail me? or was it fate saying that you are being really sappy so sleep on it. Well, I has no other recourse but to sleep on it - so I did.
Today, I am back in the real world. I woke up fell back into my workday routine, suited up and headed to the office. But the world looked different. I left the disease at home today. (if only NxStage could learn to wash windows...)
So, let me recap my first day at home and put this saga to bed...
I woke up earlier than usual - puttered, organized and then got the idea to bake devil's food muffins. (I wanted the house to smell like coffee and chocolate - not dialysate and plastic)
There was a lot of waiting around - (the Nurses were late)
When they arrived at 11, the wheeled in Edward - yes- I named my machine Edward (don't ask why - I don't know - the name just popped into my head as I was typing an e-mail one day...)
We quickly set up and I got down to business. I'm still using bags - my pureflow sample hasn't been approved yet. Man those bags are really developing my upper body strength.
My Lay-z-Boy (ugly yet comfortable chair (craigslist $100.00 delivered) is the perfect size for my put on. And I have an architects stand on wheels to hold a weeks worth of disposable medical supplies (it acts as sort of an art/mayo stand).
Everything was perfect - well except my lines got a little tangled and when I went to detach and untangle the dialysate line, I forgot to clamp it - so I laughed and called it a "Super Prime".
The Nurses made themselves at home and we settled in for a 2 hour gab fest. They drank tea and ate muffins and I showed them mementos of my life. We had a nice afternoon.
My run was perfect. 20L; 32 FF; 1K UF; 2x 100cc flush; 4K Heparin - all in 2:47.
And I do have to say that last night was the FIRST time that I've had to clean up the machine and dispose of the spent materials. I was so spoiled at the unit!!
After the nurses left, I had some time to just reflect and let this all sink in. Let's just sum it up by saying that 2007 has been a very interesting year. One adventure that I'd rather not repeat - but I've met some amazing people along the way!
That's it. The story of yet another NxStage Home Dialyzor.
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That's awesome! But don't kid yourself...your story is just beginning...now you move in to the follow-up chapters:
- the daily routine
- what the hell is that alarm?
- you're chainging ANOTHER procedure?
- what do you mean you sent a defective box of cartridges?
- dialysate spewing on my clothes and LaZBoy
- learning the options: 1K vs 2k bath...40 lactate or 45 lactate...HUH?
- and the chapter I hope you never get to: dialyzing in the middle of the night to clean your system of some drug that's got you hallucinating
Seriously, what you are doing is inspiring, and I hope others considering home hemo will see the benefits of it from what you've written. More importantly, I hope you, like me, feel like you have some semblance of a normal life again...enjoy the fruits of your hard work!!!
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Congratulations on completing your training. One thing I learned while on PD was not to get complacent. I carried this attitude over to NxStage. My runs are generally uneventful so we do a drill every now and then for things like giving a saline bolus. I know all of the steps for setup and takedown but again, every now and I take out the setup checklist and follow it just to make sure I'm not forgetting something or doing something out of sequence..
You may also discover some shortcuts that can reduce your setup time. I was taught to open all of the fluid bags, inspect them and then hang them. Now I install the cartridge, spike the saline bag and start the priming operation. Then I hang the other bags and prime the MLA. This saves me between ten and fifteen minutes. Pureflow users obviously don't have this concern.
The feelings of independence and freedom are absolutely wonderful!
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That's what we need - a shortcuts and hints they don't tell you in training post! I learned from one of Black's posts to leave the machine running in the 23 recirc for as long as possible - it makes snapping and tapping a breeze.
Things I've learned the hard way - the filter port cap comes loose in shipping - check it every time. The connection between the two blue clamps on the pureflow bags does the same. Always loosen and retighten it before starting a batch.
Things I do that they don't teach in training - once it's in 23 recirc, shake all the air out of the saline T first thing - this also helps hurry up the snapping and tapping, as it keeps air from bubbling back up from the T every time you move the line during snapping and tapping. The fastest way to clear the air out of the access pod is to turn it upside down and tap if firmly against the door handle on the NxStage. When you connect the saline line to the saline T - unclamp the white clamp, snap the air that got into the connection up the line to the saline bag, and reclamp. You don't get so many alarms when you have to do a bolus if that little bit of air is gone.
If you have a leak of clear fluid, the smell can help you determine what's leaking - Saline is salty and smells it, but clean dialysate is sticky sweet. Used dialysate reeks horribly. Knowing the difference can help you determine where your leak is coming from.
Anyone else got any tips for Meinuk?
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Wow time flies!
I thought that I'd check in with an update - since I've been at home for 10 days now...
First of all thanks for the tips - it really helps to go back and read them. I think that I'll incorporate them into the long post that starts this thread.
Well, I have to say that last night I put ALL of my training into practice and I learned my limits...
It started like any other day, as it was the day after thanksgiving, I had lots of leftovers and I decided to make stock (an all afternoon process) which is pretty typical for me. What is not typical is that I am immobile in my apartment for a couple of hours. I didn't think about it and I started my run. A few minutes into it, I had high arterial pressure (220's) well, I thought I could adjust the needle. It got worse. I just decided to rinseback and try all over again.
So, there, my first aborted session. I can check that off the list.
An hour later...
Well, I puttered around, made a sandwich - testing a theory - do sandwiches really make Dialysis better? :) then did another set up (using pureflow - finally) Started another flowsheet, then sat down, accessed myself and started my second session of the night...
There was an air bubble in my venous line, and I had a moment of air embolism "what if" panic - but I remembered one of Black's posts about air bubbles the size of M&M's and other people having issues with air in the venous line - I vowed to be more careful and I settled in watching Masterpiece Theatre - Had a visit from the little girl from upstairs (she is 4 and likes to wander...) and all was normal.
Then I smelled the stock -crap - I forgot to turn off the flame. I was quickly trying to calculate how much fluid was in the pan and I realized that I needed to do a temporary disconnect. Crap Crap... I grabbed my manual, did a quick read and then disconnected.
I then dashed into the kitchen and saved the stock - well, it is now a bit toasty flavored. But it wasn't totally spoiled.
Then I went back to the machine - grabbed another saline bag and put myself back on. You know when I read this is doesn't seem like such a hassle.... Let me assure you, it was a PIA. a MAJOR PIA...
So, now I can check temporary disconnect off my list... done that at home.
My run finally ended, and being impatient, I went to the kitchen, leaving a trail of blood. (thank goodness I have hardwood floors) - it looked like a wounded animal's blood trail. Which led to me laughing - if only my Thanksgiving guests could see this room now. HAH would they have eaten - I wonder??? Last night just reinforced the fact that I really have to move. Sigh...
One thing that I realized too late after aborting my first run was that I should have tried to save the chickenfoot by screwing a 10ml syringe on it. I wasted a chicken foot which means that I wasted 20L of perfectly useful Dialysate. I'll hopefully remember that for next time - and I'm sure that there will be a next time...
So, in my 10 days of dialyizing at home, that was my most complicated night. (mostly due to my own poor planning)
I've quickly burned though my supplies and have reconciled myself to the boxes. I'm not wearing gloves and loving it! Thanks to TIVO I am watching some really diverse TV and I actually have been reading more. So, my brain is getting a workout!
Anna at home - day 10!
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Yes, yes that's all well and good but the sandwich did make it better right?
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Yes, yes that's all well and good but the sandwich did make it better right?
oK,ok,ok... yes, the "Peckham Guide" is right - a properly timed sandwich can make everything better.
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to all of you that self cannulate and all of you that are doing NxStage home dialysis alone. YOU ARE AWESOME!!!!!!
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:2thumbsup; Meinuk!
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Sounds like you are handling things just fine, funny how we all have to learn our own little "tricks" to making everything flow smoothly, not just the hints we all learn here, Sharon and I have a routine we try our best to stick to, but every once in a while (me usually) forget something and then the fun begins, but we have learned to just laugh it off and proceed with the session. It's great we have the NxStage and can just flat say the H--- with it and start over tomorrow if it gets that bad, unlike the clinic setting........
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Meinuk your posts are great, averyone who has trained and at home now can agree to having gone through alot of the same you have - but you say it so well! Cheers to another sole Nxstager! :wine;
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:bandance; :bandance; Meinuk and her Freedom machine :bandance; :bandance; Great job.
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LOL, ROF.... Thanks so much for all of your posts. You really need to write a book!! Your 'training journal' brought back so many memories for me. I am my hubby's caregiver, don't think I could have done it alone!! You have done a great job! Congratulations. Are you thinking of doing nocturnal in the future? We hear that it is great! One of the guys at our center does solo nocturnal...
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Are you thinking of doing nocturnal in the future? We hear that it is great! One of the guys at our center does solo nocturnal...
I've thought about nocturnal - especially when I started dialysis. I have a hard enough time having Nxstage in the living room. In the bedroom - well, no. Not for me. I'd like to have as "normal" a life as possible. ummm maybe I'll stop there.
I do agree with others - nocturnal is much more like native kidney function. And I'm all for it in theory.
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Just checking in...
I had my first out patient clinic visit today! It is official, I'm going on a 5x schedule - but with a twist. I'll be doing 30L on Sat & Sun and 20L on Tues, Wed, & Thurs (so, I have Monday & Friday off! whoo hoo)
My KT/V was 2.25 (and my nephrologist agrees that the measurement of KT/V it is less than perfect - and he reiterated "as long as I am feeling good" - gee do you think he reads the boards?)
My blood work was good - not a dramatic improvement like when I first started training - but hey, I'll take anything I can get.
To recap my first month -
There have been some "Oh Boy" moments - I've lost two full cartridges of blood - one at the beginning of the run (arterial clot) and one at the end of the run venous clot)
I've had some pretty dramatic blood spillage - The night my venous clotted as I sat there thinking "gee I wonder what an alarm 32 is..." quickly the needle flew out and paint gunned - me, my floor, my tv, it's pedestal and everything in between with blood.. That was a fun night - didn't I swear that I'd tape better??? ooops I learned that bleach is a good thing to have at hand.
Umm - supply horror stories continue - but everyone has been nice (even when being inefficient) - I haven't been yelling and eventually - we'll figure out a system. (of course then I'll move)
Word got out at the unit about IHD and everyone has been reading my training posts. I am alternately embarrassed and kinda proud. When I asked my nephrologist if I am missing anything he said "Keep writing your blog" - made me feel all warm & fuzzy. I think that we have some new lurkers.
A woman at work came up to me yesterday and asked me what my secret was. (I guess that I am not only feeling better, I am looking better) I laughed and told her "Daily Dialysis" - she was shocked - because she didn't know that I was even on dialysis. I am much more comfortable talking about it now that I have so much control - oh let's face it - I'm usually never uncomfortable talking period! But this has been a pretty major step.
I'm starting to re-plan the infamous road trip that was supposed to happen last January, and I've taken December as a time to re-evaluate my future - figuring out what I want out of life - what to do when I leave my current job (ETA 3 more years) what my options will be if I don't get a transplant (listed 3 years - fingers crossed) versus if I stay on NxStage - all options that I either didn't have the energy or was too depressed to think about for the past 18 months. Really, I had just been surviving - and now I feel as though I am actually living again. It is a big difference.
I do think that we should have a thread NxStage Tips & Tricks - I have a few ideas and of course there are the ones that everyone had earlier in this thread - it would just be a nice thing to have them all in one thread.
The next few weeks are going to be hectic for me - 'tis the party season - So I will mostly be a lurker here on IHD - I just want to say a big thank you to everyone here who made my 2007 survivable. I've never looked forward more to a new year as I do now - because anything is possible in 2008 - and 2007 will finally be in the past - relegated to memory. I'm not usually a clean slate kind of person - but I think that is changing...
:grouphug;
Anna
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There she is :waving; Thank you for checking in girlfriend, it has been awhile since we have heard from you. It sounds like you have gotten things down pretty good (except for the supplies) :P believe me, i know all about that :-\ Just wanted to tell you how great it is to hear from you again and to keep up the great work :2thumbsup; Hope to hear more from you again soon, love ya toots ;) :cuddle;
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As requested. http://ihatedialysis.com/forum/index.php?topic=6212.msg91566#msg91566
Glad you have that first month out of the way. I'm also glad you are feeling much better. :santahat;
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:clap; You sound great Meinuk - have fun partying - I am happy you are seeing the future with possibilities! :rudolph;
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Meinuk, hydrogen peroxide gets out blood stains on colored cloth better than bleach!
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January 17, 2008
So, Happy New Year! I am going into my third month at home, and I thought I'd update.
1/12/08 was my one year hemoversary. I celebrated with takeout Chinese and a bottle of wine. Then I dialized with 30L...
I had my second monthly clinic visit. Pre BUN 49; post BUN 29; creatinine 5.8; albumin 4.2; phos. 4.7; co2 27 and wait... get this KT/V 1.68 (WTF - this proves that the KT/V needs to be re worked for people doing daily dialysis. Because I feel like it is 2.68. I'm going to re draw labs on Sunday night. And my Neph is going to re-evaluate the formula. - I pointed him to a blog that has posts about Kt/V and all sorts of Dialysis industry information :) - He already reads IHD)
I have no dialysis complaints (well, NxStage can't get my deliveries right! I now have 5 PurePaks in a tiny one bedroom NYC apt!!!) -Other than minor annoyances, I am so happy and I feel great. Which is why I've been a bit absent lately - I took December off to re-evaluate and try to figure out what I'm going to do in the future. (I'm leaving my job in just under three years) Hopefully I'll get a transplant in those three years - but then I want to move to a college town and go back to school. Dialysis or not, there is a PhD in my future. Of course, if I get my transplant, then I'd like to hop on a plane and study for a year in England. If not, then I'll stay in the states. It is pretty exciting to actually be planning for the future.
My energy level is amazing, I am back to working full time +, and I am really enjoying things. In December I decided that I am going to make an effort to goto one play a month, one museum a month and as many movies and concerts as possible. (I have Mondays and Fridays off from dialysis) The flexibility that I now have is the biggest change for me. There have been a few nights when I've filled out my flow sheet and I've still been dialyzing at 1:30am - but I try to be home by 7 to get on the machine by 8pm. Sometimes it works, sometimes it doesn't.
I even caught myself trying to play dialysis hooky the other night. It was late and I was tired and I just couldn't bring myself to put myself on the machine. But I realized that I'd feel so much better in the morning if I just sucked it up and hooked myself up - so I did - (hence filling out a flow sheet at 1:30am)
Today at the unit, there were hugs and kisses and "You look amazing" I stopped, looked at the room full of chairs and machines and really thought about all that we've gone through (all of us in the CKD family), some just starting, some at this for years - every day is a victory - some days it feels like a battle, some days it is a bloodless coup. For me, today is one of the good days.
And Paris - we still have Dollywood!
Oh, and Susie - Bob sends his love!!!
That's it, my three month update.
Anna
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I love hearing about your progress! You're doing so amazingly well!
I'll post tomorrow about my clinic visit today and the shot at stardom my center gave me!
(but for now, this typing one handed while on the machine has grown old...night!)
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Meinuk, you sound wonderful! I love reading your posts. You make everything so visual. I can see your apartment (and all the supplies!), we walk the streets of NYC with you and share your joys. I hope you get to do a year in England. I am sure you would love to be close to family again. So, you have nxstage mastered, let's get that transplant! I have great hopes for my friends here, and my hope is a kidney for Anna. Keep writing; someday you must write a book "A walk with Anna, one step at a time" We get strength through your posts. Thank you for sharing all your experiences. Love you!!
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LOL, Girl, you are one amazing woman! I love your outlook on life and the way you portray it (it gives us such a visual, well, it does for me) :) You just keep doing what your doing and keep living life to its fullest my friend, You are an inspiration to us all :grouphug;
:secret; Hope you have a fun time with Bob, Looking forward to meeting him :o lol, love ya girlfriend :cuddle; ;
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I'm not exactly sure of my hemoversary date. September 22? Great update.
Hope it's London after a great match.
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Thought I'd post the link to the news article about you here http://ihatedialysis.com/forum/index.php?topic=7332.0 - great description!
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Thought I'd post the link to the news article about you here http://ihatedialysis.com/forum/index.php?topic=7332.0 - great description!
I was just reading that.
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June 5, 2008 (seven months since my initial post)
Wow, so much has happened since I started this thread. You know, my nurse prints out a copy of the main post and hands it to all of her new trainees. I was trainee number 5 in the unit, now she has a waiting list and she has a current patient census in the double digits.
Things I've learned...
Home Hemo is the best ever situation for me. I feel great, and have adjusted quite well to my 5x schedule.
Calling out NxStage on IHD makes them ignore you and get tough on your unit. (which is why I've been ranting less - I actually respect my nurse and don't want her life made any more difficult.)
I am traveling again, and I love it. It makes me so much happier.
I re-read the posts on this thread and I miss Susie. What I admired so much about her was her unconditional ability to cheer people on - no matter what their differences.
I guess that I just wanted to take a moment today and take stock.
Since my last update, I've had a couple of serious equipment failures (all resolved - no missed dialysis).
Let's just say that out of seven home deliveries, I've had two good ones. (gotta try to remain positive!)
My buttonholes are great. (I just had an ultrasound to check them out) my fistula not so great, but at least it is working.
I thought that I knew a lot about CKD and Dialysis, but on a daily basis, I am learning so much, and I have met some amazing people along the way. It has made the whole CKD experience so much more bearable.
Who knows what the next seven months will bring....
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You've come a long way! Your training log here is a valuable record that will help many people who want to try the home hemo. Thanks for sharing it with us!
I am so happy you're feeling good! Would love to hear more about your travels too!
:waving;
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Thanks for all the details of how you manage. So glad things are going well and home hemo is good for you.
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WOOOOOHOOOOO Anna...you are da' bomb! Congrats on making it this far and for feeling so good!
And I agree with Karol, tell us more of your travels in case you are heading our way!!
Your journey and spirit are indeed inspirations!!
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I've decided to write the final chapter of my NxStage journey.
I was at home, alone, dialyzing for 1 year. The dialysis was great, it kept me in the best possible health. From 10/07 until 8/08 I had a smooth run with my training unit, a great relationship with my training nurse, and aside from a few delivery issues, all was well.
On August 15, 2008, my unit was closed by the NY State Department of Health for infection control violations in their in-center facility. I was transferred to a unit that would not support me doing solo dialysis. Many, many people got involved, and within two weeks, I had four units offering their services. NxStage were supportive and sympathetic, The State of NY contacted me to make sure that I was well supplied and that things were ok, and thanks to the WWW my situation was internationally known.
I never missed a day of home dialysis, and aside from some depression over the situation, within a month, I was settled in at a new unit. It was demanded that I have a full work up, and there were a lot of hoops to jump through, many Dr.'s appointments, an incenter demonstration of my technique, my transfer was more like a house closing, with all of the forms to sign, and 8 or 9 people in a conference room, but my new unit was just covering all of their bases, I don't blame them at all, as a matter of fact, all of the testing in September and October gave me a great baseline of my over all health, which was great. NxStage was working, and I was in peak condition.
Which brings me to this final NxStage Training post, I received a deceased donor transplant on November 2, 2008. From my initial intake into the hospital, each person I encountered said that I didn't look like a dialysis patient, and then I schooled them on home hemo. I was shocked that not everyone knew that this therapy existed. As far as I am concerned, Home Hemo saved my life.
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Congratulations, Meinuk. Thank you for sharing.
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Thank you for your timeline.
Ann
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Now that my original dialysis clinic has been closed for a couple of years, I have decided to add some pictures to the first post. It is sad that the at home center went down with the Davita Shipwreck that was DaVita Life Care Dialysis, NYC.
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Oh my Goodness, Meinuk, I just read this whole thread! Ive read Epoman's and it was great, but I echo every experience & thought process you had when you learned. Wow!
Your daily experience reminded me of things that hubby went through when I was training as his partner. Its like a carbon copy of what you did!
This was a great read and a time of laughter for me, cause I remember those situations not too long ago!
THANK YOU MEINUK and all the others who helped me to reaffirm our decision to do this NxStage at home! Unlike you, we started training for NxStage and when I felt like I couldn't do it, my training nurse "G" turned me on to this site. He told me to read some of the comments on here before giving up. I did, and went into clinic next day and thanked him for this site. I read of some just struggling with it but hanging in there till the end! Thank God the nurse did that, cause here we are 1yr 5mths in and reaping the benefits.
Im sure you have read some of my posts, and you know I Too Love this machine. It has revived my husbands spirits and we are just so thrilled!
Again thanks Meinuk for a very "GOOD" read!!!!! :bandance; :bandance; :yahoo; :yahoo; :2thumbsup; :2thumbsup; :cheer: :cheer: :cheer:
lmunchkin
:kickstart;
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:thx;
Yikes, I am impressed that got through it all!
When I realized that I would be starting dialysis, I would sit in my office and google. One day I found the NxStage Corporate site, and I tried to buy one. They said no. Then one day, I found the t-shirts for sale here at IHD, and they were twisted enough for me to love them - and I got curious.
Then I read Epoman's diary and I was inspired. Getting to know him (via reading) and Susie "GoofyNina" changed my life. After he died, I was terrified that his legacy would disappear, so I started taking part more and more.
I fought to be able to do NxStage alone, and I won. It was a slam of the door everywhere I turned. (even the NxStage Users group wouldn't let me join) If it weren't for IHD I would never have been able to train. I was given so much support and information that I felt like I had to go public and post my day by day training. I owe so much to IHD.
Lmunchkin, I follow along on almost every post. I read your story and I am proud that you both are doing so well.
Being a part of this group of people is one of my life's highlights even if I don't post much anymore. Honestly, I don't need to post that much, we have a devoted, caring, smart, and informed new generation here on the site, and I am proud of them too. And as for the mods and the people who have been here thorough the years, some I have met, some I have only read but I cherish every story I read. (and I worry non stop about Needle Phobic!)
Writing my training diary was and still is a pleasure.
:grouphug;
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Meinuk --- You really are an inspiration. Where is NxStage with regards to allowing more individuals to do it alone ? I am still pre-D and plan to start in center (simply for the support as I learn to deal with the newness of it all). I hope to transfer to some type of home dialysis, but I live alone and fear I'm not ever going to be supported in that objective. Thanks for any information.
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:thx;
Yikes, I am impressed that got through it all!
When I realized that I would be starting dialysis, I would sit in my office and google. One day I found the NxStage Corporate site, and I tried to buy one. They said no. Then one day, I found the t-shirts for sale here at IHD, and they were twisted enough for me to love them - and I got curious.
Then I read Epoman's diary and I was inspired. Getting to know him (via reading) and Susie "GoofyNina" changed my life. After he died, I was terrified that his legacy would disappear, so I started taking part more and more.
I fought to be able to do NxStage alone, and I won. It was a slam of the door everywhere I turned. (even the NxStage Users group wouldn't let me join) If it weren't for IHD I would never have been able to train. I was given so much support and information that I felt like I had to go public and post my day by day training. I owe so much to IHD.
Lmunchkin, I follow along on almost every post. I read your story and I am proud that you both are doing so well.
Being a part of this group of people is one of my life's highlights even if I don't post much anymore. Honestly, I don't need to post that much, we have a devoted, caring, smart, and informed new generation here on the site, and I am proud of them too. And as for the mods and the people who have been here thorough the years, some I have met, some I have only read but I cherish every story I read. (and I worry non stop about Needle Phobic!)
Writing my training diary was and still is a pleasure.
And you should be, it is so helpful to those wanting to try this NxStage. Im so proud to be a member of IHD. It has helped me tremendously, more than probably they will ever realize.
I too am very concerned where Needlephobic is concerned! It has to be Hellish for him, but you know, I also think he will do it. It just puts him in a very frightening situation, and we all are thinking about his plite!
Todd, I do believe alot of people doing D. can do NxStage alone, but in most cases, there should be someone present in case of an emergency. In J's case, he needs me there to do it all. Others know of his amputations and sight problems, but even if he could do it alone, I think people should have someone there for backup.
I admire Meinuk's guts to do this on her own, and others on this site that are alone and doing very well with it. But I continuously worry for the fact that they ARE alone. I worry for lots of people, but admire them none the less.
She could probably tell you how to go about gettiing it done alone. You are still young and that could play in your favor, maybe!
But I can't blame anyone for wanting NxStage! It is the best thing going, IMHO! Just doing D at home is in itself WONDERFUL!
lmunchkin
:kickstart;
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I put Jeff on his dialysis machine five days a week. He has a perm cath and I hate it. NxStage training took 5 1/2 weeks and was HARD and so exhausting!
I hate SNAP AND TAP. I have more problems with that than anything else!
It seems to take hours and there is always this air. I am so AIR consumed.
Any one have ANY suggestions on how the sam heck to make that easier?????
HAPPY and HEALTHY NEW YEAR!
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I've been doing NxStage for over a year now....here are a couple of suggestions that I have regarding the snap and tap:
1. Before putting the cartridge in the machine, tighten all caps on the cartridge lines, including the cap on the dialyzer pigtail.
2. Make sure to insert the priming spike into the saline bag all the way. My nurse laughs at me, but I don't have problems!
3. If you can, prime the machine and then let it sit for a few minutes at the "23" stage before snapping and tapping. This way, some of the final air just gets to chug its way out.
Finally, are you getting a lot of air alarms or just seeing a lot of microbubbles? The microbubbles will always be there.
I put Jeff on his dialysis machine five days a week. He has a perm cath and I hate it. NxStage training took 5 1/2 weeks and was HARD and so exhausting!
I hate SNAP AND TAP. I have more problems with that than anything else!
It seems to take hours and there is always this air. I am so AIR consumed.
Any one have ANY suggestions on how the sam heck to make that easier?????
HAPPY and HEALTHY NEW YEAR!
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Like cattlekid I let it cook in '23' and after I am in '23' for about 30 minutes I clamp the red clamp for two or three seconds. This creates negative pressure in the lines - you'll see what looks like bubbles forming but these are voids rather than air - when you open the red clamp the voids and any bubbles in the line will whoosh through to the cartridge. Then when you bang around the cartridge that air will whoosh into the saline bag taking a lot of the bubbles with it on the blue side. It doesn't eliminate all the bubbles but it does make snap and tap go a lot quicker. Note I do use a 171 cartridge so it doesn't have a arterial pressure monitor, if you leave the red clamp closed for too long you'll get an alarm but even then it will recover in about 5 minutes.
I put Jeff on his dialysis machine five days a week. He has a perm cath and I hate it. NxStage training took 5 1/2 weeks and was HARD and so exhausting!
I hate SNAP AND TAP. I have more problems with that than anything else!
It seems to take hours and there is always this air. I am so AIR consumed.
Any one have ANY suggestions on how the sam heck to make that easier? ??? ?
HAPPY and HEALTHY NEW YEAR!
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I accomplish the same thing by pinching the arterial line on the side of the pressure pod farthest from the machine. Let the pod go flat, then let it fill up again. I like doing that better than banging the pod on the side of the machine, which is what I used to do, but never seemed to get all the bubbles/voids out.
Like cattlekid I let it cook in '23' and after I am in '23' for about 30 minutes I clamp the red clamp for two or three seconds. This creates negative pressure in the lines - you'll see what looks like bubbles forming but these are voids rather than air - when you open the red clamp the voids and any bubbles in the line will whoosh through to the cartridge. Then when you bang around the cartridge that air will whoosh into the saline bag taking a lot of the bubbles with it on the blue side. It doesn't eliminate all the bubbles but it does make snap and tap go a lot quicker. Note I do use a 171 cartridge so it doesn't have a arterial pressure monitor, if you leave the red clamp closed for too long you'll get an alarm but even then it will recover in about 5 minutes.
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seems that the two biggest things for us has been ......... let it sit at the 23 for however long (i set it up and leave for about 1/2 hour at least while setting up other stuff or having breakfast or?) and then do the red clamp thing like Bill.When doing the actual snap and tap, i flip the 'pod' over and flick it till i see no more little bubbles. and finish the first 'snap/tap'. Leave it alone for awhile and come back and do another time. I used to snap and tap continuously for 1/2 hour to 45 min :o until reading of Bills methods. Soooooooooooooo much more efficient and easier on those 'flick' fingers. ;)
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Snap and Tap has been the biggest problem for us. I, too, am very concerned with any air bubbles! I will have to try some of these tricks because it usually takes me 45 minutes or more to finally be happy with what I see in the lines. I use a wooden spoon to do the tapping. It was suggested by my training center. Be careful though, if you miss, your thumb can be quite painful! :rofl;
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SNAP and TAP ... Grrrr!!!
We have found that using a large highlighter to tap the pressure pod works great. We can clear everything in a short time. And I am obnoxious about getting them all out!!!
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SNAP and TAP ... Grrrr!!!
We have found that using a large highlighter to tap the pressure pod works great. We can clear everything in a short time. And I am obnoxious about getting them all out!!!
I have to admit, sometimes I have to catch myself because it is soooo easy to take out my frustration during snap-n-tap. I need to go buy or make myself a "dammit doll" and give it a good whack.