NxStage Training starts... (now with pictures)

[KR Cincy]

So you've now learned the one dark secret of home hemo...it is right in your face all the time. My unit is even in our downstairs family room, but it's still there all the time. You have to develop a different relationship with dialysis...I tend to think of it more as a household chore...just something that needs done everyday (with one cheating day off!) It's not a place you go anymore...it's just a thing you do. OH and as I think you've mentioned, it's also chock full of paperwork requirements, supply management, time management...it is a part time job, but despite all that, it is still MORE than worth it and I know you'll be happier and healthier and I'm so honored to have been around here to follow your journey!

[MyssAnne]

Meinuk, I have enjoyed reading your account of nxstage training! I'm  PD'r, but I can relate with your shock at the AMOUNT of STUFF needed!! My gosh!! But as you say, the freedom so outweighs the cons of home dialysis.  I wish more people could read your account. You are such a wonderful witer, I felt as if I was there at times, with you!!!

[Meinuk]

Well, I'm glad that you feel as though you are right there with me, because you are. (literally, my phone has internet!)

For the past few weeks while I'm at training - IHD and it's members are right there with me.  I've learned so much in the past 11 months - from  reading the boards to meeting people who have made my dialysis journey so much easier.  All of this prepared me for training and has softened the blows of dialysis. 

I'm almost settled in at home (just waiting on my actual NxStage and fluid supplies) - I'm now calling home "Anna's little Crack House and Box Emporium"

It had been good for me to blog about my training.  Something to focus on and try to be disciplined with - and hopefully it will help demystify the process for newbies. (after all I only just lost my newbie status on IHD in September!)  Also, there has been a fringe benefit - I haven't really talked about my dialysis situation with some people - either I didn't want to worry them or I just wasn't ready to admit that I am on dialysis - I've been sharing my recaps with some of them and it has helped me bring dialysis out of the shadows of my life.  Which is a good thing since my new dialysis machine is going to feature prominently in my living room!

I'm already starting to panic about "what next?" - I think that in December I'll take a step back and re-evaluate.  Maintain myself on NxStage and start thinking about the future...

Thanks for all of your support - and KR - the honor is mine!

[goofynina]

MeinUK, Have i told you lately that YOU ROCK?? lol,  well, ya do    and i love ya 

[Meinuk]

MeinUK, Have i told you lately that YOU ROCK?? lol,  well, ya do    and i love ya 

Right back at ya chica!   

[paris]

Meinuk, I hope you can feel how much we all love you. You write just the same way as you talk in person-very easy to follow and understand everything you are explaining.  Hoping this week goes extremely well and you are flying solo in a few days.  Just remember, we are here cheering you on.    Waiting patiently for the next chapter to be posted!

[silverhead]

Pod Line attachment: I have learned that waiting until after priming the machine and you have hit "stop" and enter the correct numbers to make the Pod line connection, very rarely have to reset the Pod since doing it this way, If I carefully follow the manual (and the recently revised) procedure that  I still had to do several "resets" during the run.........
Tom

[Meinuk]

Monday, November 12th - Day 15

I 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 room

I 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 Unit

On 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...

[Meinuk]

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.

[angela515]

 

[MyssAnne]

ooooo. I am so glad you were home in time to catch teh delivery guy. Some favor. He'll know better next time!!! 

[jbeany]

Ah, delivery schedules.  My NxStage supplies, after the first equipment delivery, all come UPS.  They rarely come on the day they are supposed to be here.  If the schedule says the 16th, it might be the 15th, 16th, or 17th.  I don't wait for them - they just pile everything on the porch and leave it, rain or shine.  My other medical supplies come thru Fresenius.  They always show up on the day they say they are coming - just never at the time they say they will be here.  They are either early or late, but rarely in the two hour block they give as a delivery window when they call to remind me.

And then there was the courier who brought my new NxStage when they had to replace it - who simply stood on the porch looking confused while we attempted to switch the machines around quickly so the batch in the pureflow wouldn't be without power for long.

[goofynina]

Girl, i am sorry but i had to laugh, i can just see that poor delivery driver hussling his ass to get the hell out of dodge, lol,  he probably feared for his life, that is CLASSIC.    I am glad that he did move those boxes for you though, that is the last thing you need to carry them boxes, ugh,  Hope your having a better evening my friend and damn, i wish we lived closer, we could hibernate together and catch up on some movies 

[Bill Peckham]

How many boxes did you receive?

[Meinuk]

Angela - thanks for the hug..  I have to admit I needed it.

MyssAnne - The joke is - I was so early that I was going to stop and do some shopping - but oh no,  ws going to get home and arrange the room for the delivery.  Goes to show - the best laid plans....

Jbeany - Here, my provider pays a lot of money to a NJ delivery company - I was told this was to ensure that medical delivery are timely & accurate.  Hah.  I guess that I had certain expectations.

Susie - I think that anyone who witnessed the event would have laughed.  Out of relief that they were not the person on the receiving end.  And you'd be amazed how many "apology" phone calls I've gotten this afternoon.

& BP - NxStage  10 dialysate (2 broken) and 15 others.  (purepak, sacs, cartridges & drains etc.) - which brings me up to a grand total of 52 boxes delivered in total. 

[Sluff]

Anna you are so articulate and your explanations are clearly colorful. I love reading your posts. You really should consider writing a novel or something. I'm glad you took care of the delivery driver. HA! glad it wasn't me.

I'm glad you are finally free to dialyze at home.

I am so glad we met. You are so special.

[Meinuk]

Ohh Sluff...  worse than me being angry is my crying!!!  THANK YOU!  And meeting you & Christy and being at your wedding - well that was one of the highlights of my 2007.  (A year that needed as many highlights as possible!)

This brings us to tonight at 8PM...  I've been dealing with boxes and cleaning and broken dialysate bags and everything.  I finally got everything garbage bagged up and I opened my door to bring it all outside and there were two more boxes that the delivery guy had left next door.  (I should be laughing by now, right???)

So BP the new total is:  54

[paris]

We all enjoy your stories so much.  You make us laugh, cry, hurt and every other emotion.  Just last night, I was saying to Beth that it is strange how much we all bonded in Vegas. I appreciated this" second home" before Vegas, but it means even more now.    I was laughing so hard visualizing you and the delivery guy.  He probably kept wishing he had left 10 minutes before you got there!   Beth is so excited about seeing New York at Christmas.  Save a moment of your hybernating time for a lunch date with her!  She is a planner too and I think her plan now is to visit IHD members all over the world.  Not a bad plan!     Love you and will be looking for the next segment of the story

[KR Cincy]

The adventure continues...the main thing, and you seem to get this, is to keep some sense of humor about all this. There are so many cooks involved in this recipe: nephs, training nurses, customer service at NxStage and Baxter or wherever, delivery guys, tech support, on and on. While there can be comfort in numbers, it also means there are multiple opportunities for miscommunication, human error, or just plain insanity. Keep your wits about you...do what you have to to stay healthy, and <snap snap> lay down the law girl!!   

Hope today has been a great day!!!

[Meinuk]

Wednesday, November 14th - Home Sweet Home

All 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.

[KR Cincy]

That's awesome! But don't kid yourself...your story is just beginning...now you move in to the follow-up chapters:
- the daily routine
- what the hell is that alarm?
- you're chainging ANOTHER procedure?
- what do you mean you sent a defective box of cartridges?
- dialysate spewing on my clothes and LaZBoy
- learning the options: 1K vs 2k bath...40 lactate or 45 lactate...HUH?
- and the chapter I hope you never get to: dialyzing in the middle of the night to clean your system of some drug that's got you hallucinating

Seriously, what you are doing is inspiring, and I hope others considering home hemo will see the benefits of it from what you've written. More importantly, I hope you, like me, feel like you have some semblance of a normal life again...enjoy the fruits of your hard work!!!

[Aldente]

Congratulations on completing your training.  One thing I learned while on PD was not to get complacent.  I carried this attitude over to NxStage.  My runs are generally uneventful so we do a drill every now and then for things like giving a saline bolus.  I know all of the steps for setup and takedown but again, every now and I take out the setup checklist and follow it just to make sure I'm not forgetting something or doing something out of sequence..

You may also discover some shortcuts that can reduce your setup time.  I was taught to open all of the fluid bags, inspect them and then hang them.  Now I install the cartridge, spike the saline bag and start the priming operation.  Then I hang the other bags and prime the MLA.  This saves me between ten and fifteen minutes.  Pureflow users obviously don't have this concern.

The feelings of independence and freedom are absolutely wonderful!

[jbeany]

That's what we need - a shortcuts and hints they don't tell you in training post!  I learned from one of Black's posts to leave the machine running in the 23 recirc for as long as possible - it makes snapping and tapping a breeze.
Things I've learned the hard way - the filter port cap comes loose in shipping - check it every time.  The connection between the two blue clamps on the pureflow bags does the same.  Always loosen and retighten it before starting a batch.
Things I do that they don't teach in training - once it's in 23 recirc, shake all the air out of the saline T first thing - this also helps hurry up the snapping and tapping, as it keeps air from bubbling back up from the T every time you move the line during snapping and tapping.  The fastest way to clear the air out of the access pod is to turn it upside down and tap if firmly against the door handle on the NxStage.  When you connect the saline line to the saline T - unclamp the white clamp, snap the air that got into the connection up the line to the saline bag, and reclamp.  You don't get so many alarms when you have to do a bolus if that little bit of air is gone.
If you have a leak of clear fluid, the smell can help you determine what's leaking - Saline is salty and smells it, but clean dialysate is sticky sweet.  Used dialysate reeks horribly.  Knowing the difference can help you determine where your leak is coming from.

Anyone else got any tips for Meinuk?

[Meinuk]

Wow time flies!

I thought that I'd check in with an update - since I've been at home for 10 days now...

First of all thanks for the tips - it really helps to go back and read them. I think that I'll incorporate them into the long post that starts this thread.

Well, I have to say that last night I put ALL of my training into practice and I learned my limits...

It started like any other day, as it was the day after thanksgiving, I had lots of leftovers and I decided to make stock (an all afternoon process) which is pretty typical for me.  What is not typical is that I am immobile in my apartment for a couple of hours.   I didn't think about it and I started my run.  A few minutes into it, I had high arterial pressure (220's) well, I thought I could adjust the needle.  It got worse. I just decided to rinseback and try all over again.


So, there, my first aborted session.  I can check that off the list.

An hour later...

Well, I puttered around, made a sandwich - testing a theory - do sandwiches really make Dialysis better? then did another set up (using pureflow - finally)  Started another flowsheet, then sat down, accessed myself and started my second session of the night...

There was an air bubble in my venous line, and I had a moment of air embolism "what if" panic - but I remembered one of Black's posts about air bubbles the size of M&M's and other people having issues with air in the venous line - I vowed to be more careful and I settled in watching Masterpiece Theatre - Had a visit from the little girl from upstairs (she is 4 and likes to wander...) and all was normal. 

Then I smelled the stock -crap - I forgot to turn off the flame.  I was quickly trying to calculate how much fluid was in the pan and I realized that I needed to do a temporary disconnect.  Crap Crap...  I grabbed my manual, did a quick read and then disconnected.

I then dashed into the kitchen and saved the stock - well, it is now a bit toasty flavored.  But it wasn't totally spoiled.

Then I went back to the machine - grabbed another saline bag and put myself back on.  You know when I read this is doesn't seem like such a hassle....  Let me assure you, it was a PIA.  a MAJOR PIA...

So, now I can check temporary disconnect off my list...  done that at home.

My run finally ended, and being impatient, I went to the kitchen, leaving a trail of blood.  (thank goodness I have hardwood floors)  - it looked like a wounded animal's blood trail.  Which led to me laughing -  if only my Thanksgiving guests could see this room now.  HAH would they have eaten -  I wonder???  Last night just reinforced the fact that I really have to move.  Sigh...

One thing that I realized too late after aborting my first run was that I should have tried to save the chickenfoot by screwing a 10ml syringe on it.  I wasted a chicken foot which means that I wasted 20L of perfectly useful Dialysate.  I'll hopefully remember that for next time - and I'm sure that there will be a next time...

So, in my 10 days of dialyizing at home, that was my most complicated night.  (mostly due to my own poor planning)

I've quickly burned though my supplies and have reconciled myself to the boxes.  I'm not wearing gloves and loving it!  Thanks to TIVO I am watching some really diverse TV and I actually have been reading more.  So, my brain is getting a workout!

Anna at home -  day 10!

[Bill Peckham]

Yes, yes that's all well and good but the sandwich did make it better right?