NxStage Training starts... (now with pictures)

[Meinuk]

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...

[Meinuk]

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!

[goofynina]

  Bravo my friend, sounds like you are handling everything just awesomely    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 

[KR Cincy]

I'm so happy training is going so well!
Enjoy your jammie day...we should schedule a jammie chat room get-together!!

[goofynina]

How fun, a jammie chat room day, for me, that would be almost everyday, i am always in my jammies  

[Sluff]

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.

[Black]

I cannot say enough good about your "journal" - upbeat, thorough, detailed, and inspirational.     

[Meinuk]

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!

[Sluff]

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...

[jbeany]

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.

[Meinuk]

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!

[KR Cincy]

YOU ROCK!!!!!!
 

[goofynina]

Girlfriend, YOU DO ROCK!!!  I dig your attitude towards everything, you are a true go getter, Epoman would be loving you big time    You keep  doing what you do girlfriend, cuz you do it so well.     Love ya... 

[Sluff]

You are an incredible person Meinuk. 

[Meinuk]

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!

 

Now, on to Wednesday

[Meinuk]

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.

[Meinuk]

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!)

[okarol]

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.
 

[Rerun]

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.       

[Bill Peckham]

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.

[silverhead]

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

[KR Cincy]

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!!

[Black]

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.

[Zach]

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.

 

[Bill Peckham]

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.