NxStage Training starts... (now with pictures)

[paris]

Nooooo--we love Alvin!!  He was so much fun and put him with Jim-oh my goodness!!

Me, hope the training continues to go well and I know you are looking forward to being at home with the  Nxstage.  More posting time, right?   Keep us updated about the creep.  We may need to send Kitkatz with her big stick!

[Black]

It appears you have handled the creep very well so far.  Trust your instincts.  I repeat, TRUST YOUR INSTINCTS.  Keep him away from you and do not hestitate to report any attempt by him to initiate conversation with you to the nurse who visited your home.

[goofynina]

Hey Anna  *ahem* Meinuk   Sorry they had to do that to you but hopefully you can get situated and do what'cha got to do so you can get the hell out of that clinic already  and as Black says,  go with your instinct, dont trust this guy with anything, and if he does or says anything you call me and Sam and we'll come up to New York and rough him up a little     We'll tie him to a chair and let Sam sing to him Elvis songs allnight, lol,  nah, i just hope for the best for you my friend, and i have no doubt that you will get it, you are a strong and very level headed woman that knows how to get what she wants, thats for darn sure (ya'll need to come and read some of her stories on Renal Romance)     quite interesting indeed 

[BobT1939]

Nice job of handling the SW. A lesson for all of us to stand up and let people know what we think./bobt

[Meinuk]

I have a few days of perspective now, and the whole situation has been a revelation - I'm glad that I went public with Wednesday night's incident.  Black & Susie are right, although I did fell rather silly getting so flustered, I'm glad that I had a chance to speak frankly with the nurse.  And she wasn't surprised - So, I'll leave it at that. I guess that I learn something new about myself every day.

And Susie - as far as the plug for Renal Romance - I really have to add the disclaimer that YOU ENCOURAGED ME!!  Yes, I did have those "Adventures" but I normally would only talk about them with friends while sitting around the table - not necessarily on the www.  Makes me wonder why I had such a tame weekend in Vegas...  I must be getting old... 

I just hope that none of my students or alumni stumble across them...  It is rather difficult to be stern with them and try to force them to develop professionally when my some of my stories are out there....

[goofynina]

They are great, i am looking forward to reading some more (hint hint)     And as for a tamed weekend in Vegas, i had the shot glass ready girlfriend, 

[Meinuk]

Tuesday October 23, 2007

Goofynina's 30/10 Birthday and my first NxStage Training session…  A good day for all!

Let me start by saying that I never would have thought that a day of Dialysis could make me happy, but today, I was happier than I have been in a long time - (well since Vegas!)

I do have a few disclaimers though - which need to be said.  My Training Nurse & I were quick to realize that this was not going to be a "from scratch" training session.  I started my buttonholes in the unit and had already been self cannulating for a month.  Thanks to EPOMAN, Black, Adam W & the people on these boards, I was very familiar with the concept and application of NxStage Therapy.  (I oohed & ahhed when I recognized the chicken foot and the peanut!) And thanks to my college stint working at a dialysis unit - well, I was well ahead of the curve.

I am typing this later Tuesday afternoon, and there was so much to take on board this first day that I need to say that it is incomplete and there may be important steps missing - but I just wanted to write about it while it is fresh in my mind.

I really do think that home hemo is the future of dialysis - and really, if I can do this - then I hope that you can read about it, become familiar with NxStage and it won't be so intimidating. Overcoming one's fear is often the hardest hurdle - Gaining knowledge is doable - being in fear can be crippling.

So, at 9am my day started at the "at home" section of my dialysis unit.  Before I left home, I made sure to eat a real breakfast and I drank enough coffee to get me through the ensuing hours.

H. My training nurse had the pureflow set up and my machine was sitting there waiting for me.  She pointed out the basics, opening the machine - turning it on etc and then she showed me the tubing kit & artificial kidney.  I was surprised to see that it was mounted on a plastic cartridge.  (I was expecting to have to thread lines…) nope, NxStage made it pretty simple.  The whole idea was to get me on the machine.  H. showed me the pureflow and we checked for chloramines (sp) - if you are a Star Wars Fan - all I could think of was mitoclorians - Does the pureflow have Jedi Powers???  Maybe not!  We passed the chloramines test and that was that.

I learned first hand about spiking the bag and the "snap & tap" - getting air out of lines.  H. discussed the display, and toggling between displays - we primed the machine 18 minutes  - during those 18 minutes, we had a visit form a referring nephrologist - he wanted to check out the machine and he had a few questions.  I had all I could do to keep from telling him to just log on to IHD.  He had some of the same questions that I had.  How to dispose of medical waste - and what was the artificial kidney made of…

I then zoned out for a few minutes and checked my e-mail on my treo.  (really I was concerned with work! I wasn't PMing Susie a happy birthday message…)  The visiting Neph left and it was back to me. H & I discussed setting up the run - Dialysate Pump Speed , ultrafiltration etc.  Color Coded tubing etc.

Today, I really was just the observer (there is a lot to learn) Then we were ready to put me on the machine. I washed my hands, got my stuff together (blankie, water et al) and set up my cannulation.  H. watched me and helped me tape - my arterial is bizarre and we have to "pillow" the needle.  I am used to it now, but I think that it seemed strange to H.  My arterial flow was good, and then I hit the venous.  No problem.  H. Put me on the machine and soon, I was dialyzing away….

During the run, we signed paperwork (really, the training nurse has to agree to a code of conduct as well), I was given my plumbing kit for my pureflow, we talked about my dialysis journey to today and H. gave me a rundown of supplies that I would be given.  That was where I strayed off course…  H. told me that I would be given a centrifuge to spin my blood for blood work.

My heart melted, because I remember reading about EPOMAN wanting to avoid needlesticks and even offering to buy his own centrifuge, and he never got one.  That set me off and I started to talk about IHD and the people who have influenced me.  I told her about EPOMAN, and I talked about Bill Peckham & his boat trip with NxStage - She had heard of IHD but didn't know that EPOMAN had passed away.  Pretty soon, we had a "2" notice and it was time to check my BP.  (Vitals check every 1/2 hour)

There was a lot of paperwork to sign - and since I love dissecting contracts - I found a couple of loopholes that I am going to try & exploit.  (now to just get a copy of the contract)  What shocked me is that I am expected to get renter's insurance to cover the equipment.  Damn, one more expense.  Oh well, it is worth it.

One other observation that I had today is… that on home hemo, I actually feel like a partner in my medical care.  The Neph & H & I discussed my run, my blood work my meds and options for the future.  For the first time in 10 months, I feel like I am control of my health.  I'm not just walking into a unit and sitting in a chair.

The run was almost uneventful - I had an arterial air alarm, and learned how to aspirate the artificial kidney.  All in all I processed 77 litres of blood and took off .6 L of fluid.  I was overjoyed to watch an Infection Control Video (insert sarcasm here) and I can unequivocally say that I really like my training nurse.  She is professional and smart.  It's gonna be an interesting few weeks!  Oh yeah, and the training manuals are as big as biology texts.... Will I never get away from notebooks???

The adventure continues on Wednesday.....

[Sluff]

That is a very nice account of your Nxstage training and I appreciate you sharing that with us.

[MyssAnne]

That was good, Meinuk! I really enjoyed your account of your first day in training!

[paris]

Hi Me!  Your journal is great and very informative.  Wonderful job of writing it all out.  Everyone doing dialysis at home gets my admiration and you will help others make the decision to take control of something in their lives.   Keep writing. I can tell you are sooooo use to the classroom setting!

[Rerun]

Thanks Meinuk for the description.  You are doing fantastic!!

                                                                                       

[Aldente]

Thanks for the great description of your experience.  I finished my NxStage training several weeks ago and your diary brings back good memories.  I certainly agree with you when you say this is the first time you had the feeling that you were a partner in the treatment process rather than a number who sits in a chair.  That feeling is even better when you get home on your own. 

Our unit has discontinued the use of the pureflow unit.  They claim that the water testing requirements in North Carolina are too stringent and time consuming.  I read that as too expensive for them to be reimbursed (call me a cynic). I have seen the pureflow but my experience is only with hanging bags.  Since I don't know any better, it's not a problem for me.

Keep up the good work and enjoy your newfound freedom.

[KR Cincy]

NxStage rocks! Our training nurses were, and are, amazing...they've become sort of an extended family. My wife, with NO prior medical or dialysis experience learned it all in 12 sessions, so you should be home in no time!!!! Congratulations!!!

[Black]

... Our unit has discontinued the use of the pureflow unit.  They claim that the water testing requirements in North Carolina are too stringent and time consuming. ...

Are they trying to say there is not ONE home dialysis patient in NC?  If they can test other machines they can test NxStage.  Maybe they or you need to check out other centers in NC and find out how they are testing NxStage.  Or better yet, contact NxStage to ask them if they can intervene in some way.  Bags are way more expensive to ship and it would be much cheaper to use the PureFlow.

[Meinuk]

Wednesday, October 24th   Day TWO

Well, if today's training session could have a theme - it would be all about relationships.  I was running late - my favourite bodega was closed, and I had to search out coffee.  I found it and was 15 mins late.  When I walked into the room, there was a present waiting for me in my chair, a clinic bag filled with branded goodies.  Ahh marketing - anyway, I always like getting prezzies, so I was happy (and I had coffee).

I said thank you and we quickly got down to business - set up and put on. A refresher on what goes where - I stuck myself with no problem (on Monday, I switch to blunts & I'll use bags - not the pureflow) H. had a training sheet that she used as a guide, and she checked off thing as we covered them.  The joy of all of this is that I am (admittedly) a workaholic.  Once we had covered a section on the list, I would check my work e-mail and send what I needed to send.  H. gave me plenty of "rests" to  switch my focus, and then she brought me back to alarm and "what if's".  I think that today we really found a cadence that will help my training be smooth and effective.  I can train and I know that I won't be worrying about work because we have the rests built in.

And the best thing is that the training seems to be tailored to my aptitude.  I really appreciate that.

No, why relationships as a theme?  Because at one point during the run, H. Sat down and talked reality.  Her role as a training nurse, the support system, calling NxStage vs calling the unit and the importance of not losing blood if you need to trouble shoot.  (If you can't get through to NxStage or it is going to take too long - do a manual return)  It was after that conversation that I started to really talk to her about my plans for the future.  Going home to London, finally getting to take the aborted vacation that I had planned in January (driving from PA to Seattle via the northern route -dialysis ruined that one!)  She was encouraging.  She even talked about "If I need to take a break from the responsibilities of home hemo"  Talk about saying what I wanted to hear!!  Today I was officially drinking the koolaid.  I could have easily been a sales rep for Nxstage and my unit.  Dialysis is quickly becoming just a therapy and it is not going to rule my life or dominate my conversations (well...  maybe on IHD it will...)

So, during my run, we chatted, I read two chapters of the training manual - I was visited by some of the techs from the in-centre side and... aside form being starving by 2pm (did I mention the importance of eating a good breakfast?) All went well. 

We even wasted the balance of a pureflow sac and H. made a new batch to show me the process.  As she opened the container that holds the sac, I remembered people posting about flooding and the sensor on the bottom of the container. - Really if I were in school, I think that the crib notes posted here on IHD really do give me an unfair advantage..  But you don't get graded when using NxStage - the ultimate grade is your health and freedom and on those counts, I am anticipating an A+.

Ok, I am signing off now, because my lunch was just delivered (green chicken curry - I'm sweating as I type!)

Thursday will be a new adventure!

[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!