NxStage Training starts... (now with pictures)

[Meinuk]

Friday, November 2 - Day Nine

I brought cheesecake for the staff today... They earned it.

I also walked in armed with the suggestions that you all had for me RE: Take Off -   (THANKS!)

Umm..  Normal set up  - all by myself.  Arterial Cannulation - still need sharps!!  Venous - Perfect with blunt.  I remembered to tape, and I did not fumble with the lines.  BUT...

When it came time for me to put my venous on, the connection broke as I tried to take it off the saline spike.  Cheap friggin plastic!  And you know - when one connection goes - you have to waste the whole cartridge and start all over again.  And, my arterial is extremely positional so I ended up not getting on the machine until 11:17 and when I did, I had to adjust and readjust my arterial.

Again - so glad that it happened in the clinical environment.  (sigh - that is my new mantra...)

Pull needle 1/2 way, sureseal then pull & wad with 4x4 worked for me - well - almost.  I need to learn patience.  I peeked too soon at my venous and saw a bubble of blood amassing under the sureseal, and then pressed down really hard - which - if you are a student of physics - caused said bubble to squirt me right in the face.  A. (the trainee nurse) & I were laughing so hard  - I started to cry.  Really  - why does my NxStage training always seem to be like an Itchy & Scratchy Cartoon?  All I did was peek!

So folks - that is it.  the end of my second week of training  - I'll be home soon!!!

Monday - another day with Bags & heater - and I'll be flying solo - alone in the room - I'll call H. if I get in over my head!!!

More lessons learned.  Connections are fragile and don't peek - give clotting a chance.

[KR Cincy]

>>singing<< all we are saaaaying is give clots a chance

enjoy the weekend...you've earned it

[Zach]

 

[Bill Peckham]

You know - rubber gloves suck!  I had a hard time loosening the cap on my venous line (to bring the blood to the end of the line)  I fumbled with the cap and whoosh -dropped the cap and blood started gushing out.  (at least my needle placement was good!)

Wearing gloves is standard operating procedure but does it make sense? At least in the case of self-canulators my opinion is that gloves are worse than bare skin. What purpose do gloves serve? Gloves make incidental contact with open blood lines harder to notice and they complicate making connections, diminishing dexterity. I clean my hand carefully, gloves are not sterile. I think gloves are meant to protect the wearer, no need to protect myself from myself.

[Meinuk]

Ha ha ha ha .... I almost snorted coffee all over my keyboard this morning!

KC - you got it  - I was thinking of "Giive Peace a Chance" when I wrote it.  You know what they say about great minds.... 

Zach - That sign cracked me up.  You know I was always the child who unwrapped her x-mas presents - played with them and then wrapped them back up - then feigned surprise (badly) on X-mas morning!

And BP - I am fully intending to d/c the gloves after my first home session with the trainer.  I announced in the beginning "I'll wear gloves to observe universal precautions during training - but not at home."  Of course in my mind I finished that statement with Bill Peckham doesn't wear gloves -  But if I actually spoke all of the times I've thought "Bill Peckham does this or Bill Peckham does that ..." Well...  you know I'd sound a bit strange.  And I really am trying to be the best trainee possible -  compliant and non combative. - (it took a lot of signatures for me to be able to dialyze solo - and the machine isn't home yet)  I'm saving my debating skills for the kitchen table at home.


Well, the builders are here tearing down my kitchen ceiling and then hopefully putting up a new one - so, I'll be sweeping mopping & dusting all weekend...  How exciting!!!  (Insert sarcastic grin here!)

[Black]

You know - rubber gloves suck!  I had a hard time loosening the cap on my venous line (to bring the blood to the end of the line)  I fumbled with the cap and whoosh -dropped the cap and blood started gushing out.  (at least my needle placement was good!)

Wearing gloves is standard operating procedure but does it make sense? At least in the case of self-canulators my opinion is that gloves are worse than bare skin. What purpose do gloves serve? Gloves make incidental contact with open blood lines harder to notice and they complicate making connections, diminishing dexterity. I clean my hand carefully, gloves are not sterile. I think gloves are meant to protect the wearer, no need to protect myself from myself.

ITA, Bill.  We haven't used gloves since right after we came home from training.

[jbeany]

I use one glove for holding my sites after - only because I hate getting blood on my fingers if it squishes out from the pad I'm holding.  The rest of the time - set up, snapping and tapping, cannulating - they just get in the way.

[Meinuk]

Monday, November 5 - Day Ten!

Reality....

How do you set up the machine for solo access?  That is what we are doing this week.  For those of you with helpers...  Well, let them know that you appreciate them because  - although the whole process is "doable" solo - you need to adapt.  Trainee Nurse A. is learning along with me - so there were a couple moments of "who is the student?" - I  just decided that I'm gonna up my coffee Rx for Tuesday - that'll make me a more patient person!

Here's my report card so far:

Setting up the machine Pureflow or bags; A+

Cannualtion of my unruly access; A+

Putting myself on the machine;  B -   with the machine on the left (same side as my fistula), if I reach over my access and move too much, I mess up my arterial.  We realized today that my arterial probably won't be buttonholed for at least another month - So, I'll go home on sharps arterial and blunts Vvenous.  At least I now know that eventually my arterial should settle down and play nice with the needles!  And then there is the actual putting on the lines one handed while maintaining sterile technique.  Again, it can be done - I just need to build my dexterity.  I know that all of this will happen with time.

Mondays are just so  - well - they sneak up on you.  My amazing healing powers closed both of my buttonholes.  (No scabs to pick off and it was almost like re-piercing flesh.  How's that for a visual???)  I still managed to use a blunt with my venous but it took a while and the needle just didn't want to slide in.

Once I was on the machine - my run was perfect.

Take off was a little bloody - I had to draw my bloods for tissue typing and I put the vaccuatiner adapter on too tight and when I pulled it off my line, I also pulled my venous - oops.  But - My "Crap I'm bleeding!" reflexes are now so well honed that I had a 4X4 on it before my training nurse even noticed it.  And I didn't peek -  so 3 mis of 4X4 and my venous was good to go.

My one handed needle pull with my arterial - well today it did it upside down because of the positioning (sureseal on top) and a small stream of blood - all under control and soon I was off to weigh myself and pack up my things and head home.  (I skipped work today!!)

Over all I give my takeoff a B.

I also brought my centrifuge home.  I'm looking at it right now as as I type - wondering if I'll get into trouble if I spin something in it...  But what???  Hmmm maybe I'll just respect the Centrifuge - after all not having one caused EPOMAN such grief....

That's my Monday - see you tomorrow - same place....

[KR Cincy]

Honestly, I'm having enough trouble typing this one-handed...I don't think I'd have the dexterity to do this alone so you're progress is even more impressive to me! Keep it up!!

[Bill Peckham]

centrifuge: it runs quieter with a test tube opposite the one with the blood sample (if it is the type with a four tube capacity). I keep a tube with saline as a counterweight.

the whole one hand thing: I have thought about doing wet sticks - sticks with the needles already attached to the lines. However, the buttonhole needle with 16" lines allow me to use my right hand (I canulate my right arm) so I never did try wet sticking. Would longer needle lines help? Do you have access to buttonhole needles with the longer lines? Would that help?

buttonholes: wish I knew a trick I knock wood every time mine work. Are you using one set? and they still closed - is your fistula shallow?

I say: time for the trainers to step aside. 

[Meinuk]

Tuesday, November 6th - Day Eleven

What a difference a day makes....

I did everything today from set up (pureflow) to take off (the IHD way) - very little bloodshed. I'd even say that the MPAA would give it a G rating.  (compared to the "Carrie Day" which was definitely NC-17 (warning language and blood!))

H. my training Nurse stayed in her office and did paperwork and A. the trainee sat silently while I talked her through the process.  It was a quiet, peaceful day...

We did go over my supplies and the delivery schedule.  (my Pureflow & control panel are being delivered tomorrow)

A lesson learned on Monday....  Don't moisturize your hands before a run.  Yes, we all hate dry skin, but being able to grasp is a very important thing in Dialysis!

So, that is what a quiet dialysis session is like.  Refreshing.  Also, I got some very good news.  I only have to run 5X per week.  (I have my residual kidney function to thank for that)

We also had a clinic visits today - I love it.  It is like you are really being seen by a Dr.  - A  laundry list of what meds you are on and what your treatments are like - follow up on any medical issues and lab work ending with a "How can we make this better for you?"  I felt like an adult human being, not a number in a chair.

And finally, BP:  I have no words. (relish that - it doesn't come often!)  We ordered my 16 inch blunts today.

[goofynina]

Girlfriend, i am soooo happy that things are going so well for you, i am excited for you to start this thing at home and you can really get on with your life, hopefully we'll be able to chat a little more too, i miss ya (it was nice talking to you this morning, thanks for thinking of me)    I hope to hear from you again soon. 

[kruep]

Hey Meinuk,
As a former trainer of NxStage, please just humor your nurses, it will make your life and theirs a lot easier.  All of us nurses know that you are going to do what you want when you get home alone.  Just humor us so we can officially do our paper work.  I actually was telling one of my patients that one day and a PD nurse over heard me and started chastising me over it.  I had to bring her back to reality.  As long as we teach you the proper way and have it documented... We are not there to watch every move you make and we are all human and want to do things our way.  Hey another song.
Now we have "Give clots a chance" and "I'' do it my way"
kruep

[KR Cincy]

You are doing so GREAT! You'll be home soon, all hooked up, and full realizing the wasteland that is daytime TV!

Feel free to come on here, go to the chat room where one-handed typing IS allowed! Join NetFlix...go to the library...just don't let your fully functioning brain get depleted by the numbing assaults of Judge Judy, Maury Povich, or which tramp is having which cad's baby on some soap!!!!

Seriously...you're doing great...you'll be home in no time!!

[Meinuk]

Wednesday, November 7 Day Twelve

Fun & Games at Home Hemo Training....

This week is solo - but I brought a visitor this morning.  My friend Nancy.  She & her husband are #2 on my emergency contact list  - and she had never been to the dialysis unit  - so - since I won't be there much longer today was the day. 

I quickly realized that I had maybe prepared her too well... because no matter what I did - she compared it to the videos on the web that I had shown her....   "But he really has to pick his scabs off - you're not..."   My response -"my scabs are small... I am a girl... my fistula is up arm and I mouisturize!!!"  - Where would we be without the internet??

We actually had a lot of fun this morning.  Maybe too much fun...I narrated through the whole process of set up and put on (for both Nancy and trainee Nurse A.).  But I learned something - my nephrologist stopped by mid-cannulation (arterial of course) and I mullti-tasked.  He wanted to talk about a dinner that he went to the night before RE: NXStage, Home Hemo & Nocturnal -  and he thought that I should have been there - so he recapped the whole event for me -  while I was cannulating -  and I just kept going and having a conversation at the same time - well, I ended up doing a crappy job on my arterial - but my venous was perfect.

So, after my Dr. left - and I was starting my run - I realized that I'd have to re-do my arterial - so I got to do a disconnect and a second stick - bevel pointed towards the anastamosis.  (my initial placement had the needle placed in the wrong direction (and I thought I was so clever!) 

Lesson Learned:  Focus - don't multi-task.

The rest of the run was perfect.  Nancy left before I took my first set of vitals  - so I did some work (e-mail & phone) and chatted with Trainee Nurse A. and soon enough my run was over and I rushed home to meet Fed-ex.

Because of the disconnect I had to take off an additional .7  - along with the 1K that I was going to pull.  So I ended up taking off 1.7 which made me woozy....  A bit too much.  The train ride home was long... 

I am home now, still waiting for Fed-Ex to deliver my pureflow.  As long as it gets here (fingers crossed), tomorrow after my run my trainer & the trainee nurse will come home with me after work and we'll set up the pak and a sac.  Then take a sample for testing and we are green light for at home next week!

Of course after my first run at home - I'll be back at work full time and dialyzing at night...at home...in my own chair...watching my own TV... surrounded by boxes and boxes of medical supplies!!!  It is already an interesting November and we're only a week in!!!

That's Wednesday...

[Sluff]

The freedom of being home is going to be worth the training schedule. Good Luck and Congratulations. 

[kitkatz]

You have a way of journaling that makes us be there with you. Thanks for your training log. It makes me less scared to ask to do home hemo next week with the doctor.

[Meinuk]

Thanks Kit -

It goes both ways you know.  I can write about my experience training, and all you share so much - that we are not alone. 

I walk into training almost every morning and my training nurse asks - "what now?"  because I usually have an "I told you so" grin on my face and I'll tell her about sureseals for take off - or 16" blunts or any of the other things people have shared. 

All off this made my training so much easier and makes my dialysis manageable.  And my training nurse learned something too! 

I hope that everything goes well for you next week!

[Meinuk]

Thursday, November 8 - Day 13

Fed-Ex never showed up last night...  No call - no show.  (oh they got yelled at!)  Where is my Pureflow???  (they swear it will be delivered today...) 

So, today is about deliveries...

scheduling Fresinius for my medical supplies  (Friday after 4)

scheduling NxStage for my machine supplies  (Tuesday after 4)

re-scheduling fed-ex....  (fingers crossed)

You know even though the clinic does the initial ordering of supplies for you...  You really do have a lot of administrative work to do.  Between filling & e-mailing out your flow sheet - sending off your labs and managing your supplies - I think that the whole experience is resume building!  It is a part time job!!!  (I want a raise!)  Ok, I'll settle for a great KT/V...

But let's move back to training.....

Perfect set-up & put on (almost)  I forgot to push the pureflow GO button a final time and I wasn't getting proper dialysate.  My Training Nurse was happy that I still needed her.

Speaking of pushing buttons...  I know that Black & others have commented on how hard those suckers are - and let me concur - they are hard to push!  I understand the reasoning - to make sure that there are no accidents - but geesh - I thought that I had upped my dialysate to the max and still I only had a FF of 28 - so I called to training nurse to ask why - and she said (for the umpteenth time) - "push it like you mean it!"  Soon enough my dialysate was up and I was running at a FF of 32/pump speed 400 & taking off .7.

During my 3 hours,  I was on the phone yelling at fed-ex, I helped the trainee Nurse A. study for her upcoming exam and I answered some work e-mail.  Pretty boring - can't wait to get home and watch some bad TV while dialyzing.  (I'll admit it - I TIVO Judge Alex!!)

At the end of my run - the last seven minutes take FOREVER - I carefully  hand pulled my venous! No blood! Whoo hoo!  When it came time to pull my arterial, I looked down to see that I had already pulled the needle out.  (My lines had been taped together and when I put the venous in my lap - it pulled the arterial.  Good news though - it had already clotted - NO BLOOD!)  So, we ended the day laughing.

I took my vitals - weighed in, grabbed my stuff and headed home.

And on an "I'm feeling better" note:  On my way to the subway - I stopped at the Lincoln Center Farmer's Market and did some shopping.  I picked up some late season Basil, some Apples, a few zucchini and an Acorn Squash.  So, tonight I'm going to make Pesto.  And in the next couple of days I'll decide what I am going do do with the other veg I bought...  I can't remember the last time I felt so good just shopping at a Farmer's Market.

So, that was my day #13...  We're finishing up this epic - just a few more entries to go!! 

[Bill Peckham]

This is off topic a bit but let me say that the idea that the buttons being hard to push is a safety feature just makes no sense to me. The Aksys PHD had a touch screen - I could push its buttons with my back scratcher, which was great but I don't think it ever occurred to anyone that we were at risk of someone leaning against the screen and cranking the blood flow up to 1,000 or something. Or children running around, playing with the machine. Has anyone ever had someone just randomly poke their machine? Seriously - there is no safety issue. It has to be financial. Maybe they got a deal on vintage LED interfaces.

[Meinuk]

Friday, November 9  -  Day 14

I am writing this on Saturday...  I needed some distance...  a lot has been running through my head and I needed to process it.  Making the transition to NxStage is the best possible thing that I could have done for my health.  My bloodwork is amazing.  Aside from a high Creat and BUN - it is the best that my labs have been in 5 years.

But I am going to share with you my realization - Theory vs Reality...  When Fed Ex delivered the pureflow boxes, the driver put the pureflow box and the control unit box in the middle of my living room floor, I was stunned by the size of the boxes.  (now, note that I live in NYC and I have a small apartment - and my living room (all 11x14 of it ) is now my TV room, my living room, my dining room and my dialysis room.)  I'm not house proud - all my life anywhere I've lived has just basically been a launching pad for what ever my next adventure may be - and I've lived in some interesting places.  But this is a first.

I brought dialysis home with me.  I now have a daily reminder that my life is different.  In a lot of ways - I was hiding in the unit when I was dialyzing in-center.  I'd leave work at 4:30 and for a few hours I was in a different world - then I'd go home and return to my usual routine.  (exhausted and crawling into bed and then tossing & turning all night with ESRD insomnia)

On Friday - when the bulk of my supplies were delivered, I was overwhelmed.  My first thought was "what have I done?"  I turned my living room into a clinic.

So, over the next few weeks - I expect that there will be changes on my outlook - I'll get outside more - go to movies - see friends - and reclaim those hours that I spent hiding in the dialysis unit.  I own my schedule now - I didn't expect the reality of home dialysis to have such an impact.  I think that it really is a chance for me learn more about myself and how I define myself.

Ok, enough about that - now on to training.

Friday morning went well.  I am comfortable with the whole process and I'm ready to go home.  I did start the prime before I attached the access Pad, but that was easily recovered.  Other than that it was a perfect run. 

My at home prescription for the first month will be:  20L 6x (for the first month to establish best at home baselines) pump speed 400 FF 32 with 4000 Heparin with 2 100cc flushes in the run.  As long as we chart excellent numbers in my first month - then I'll switch to 5x.

My training nurse drove us to my apartment after my run - she had to be the person to set up my pureflow and prime the pak.   While sitting in traffic, we discussed KT/V and deciding the whole prescription.  I mentioned the different prescriptions that others were running here on IHD and she & I discussed her NxStage Training and the future of the center's program.   

These are exciting days for dialyzors - we have more and more options on the horizon - we really are breaking the "in-center" model- more of us are living healthier and making dialysis just a therapy - I have high hopes for at home hemo industry.  (I also note that even though we have 1400+ members here on IHD less than 150 are active on a daily basis - and there are thousands of us out there in the world, so I've started telling everyone I encounter at the unit to check out IHD and even my urinator friends -  when they encounter people with CKD they have started mentioning IHD) Knowledge is power.

Now, I am going to sign off and convert my little coat closet into a medical supply closet - slowly - I'm gonna make it work!

Monday will be my next to last day at the unit.....  WOW time flies!

[okarol]

Thanks for telling how it is Meinuk! It's very interesting and thought provoking to hear about this "adventure" you're having!

[paris]

Meinuk-you are amazing.  You said you could do this alone and you are!  As for all the supplies--throw a pretty piece of fabric over it and be done!  Next week will be a great week for you

[oswald]

out of the over 1400 people on IHD there has got to be more than 150 people active on a daily basis.  at least i would think so.   

[charee]

Hey Meinuk, I have been doing home hemo for 7 months , and i love reading your training journal  you have a way with words thanks for sharing and good luck when you get home