NxStage Training starts... (now with pictures)

[MyssAnne]

Meinuk, I am so happy it's working out so well for you!!! This is the beginning of freedom for you!! YAY!!!

[goofynina]

Awesome, simply awesome    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, 

[Meinuk]

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?

[goofynina]

  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    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 

[Aldente]

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.

[MyssAnne]

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...

[kidney4traci]

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...

[Meinuk]

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!!!

[okarol]

Have a great evening Meinuk! 

[jbeany]

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!

[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.