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
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-CannulationSo, 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, 2007Goofynina'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 TwoWell, 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 ThreeWell, 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 FourSo, 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 FiveI'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 SixI 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 SevenHappy 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 NineI 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 ElevenWhat 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 TwelveFun & 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 13Fed-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 14I 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 15I 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 roomI 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 UnitOn 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 HomeAll 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 ChapterI'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
I Hate Dialysis Message Board
Author
