NxStage Training starts... (now with pictures)

[Meinuk]

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

oK,ok,ok...  yes, the "Peckham Guide" is right - a properly timed sandwich can make everything better.

[cev]

to all of you that self cannulate and all of you that are doing NxStage home dialysis alone.  YOU ARE AWESOME!!!!!!

[okarol]

  Meinuk!

[silverhead]

Sounds like you are handling things just fine, funny how we all have to learn our own little "tricks" to making everything flow smoothly, not just the hints we all learn here, Sharon and I have a routine we try our best to stick to, but every once in a while (me usually) forget something and then the fun begins, but we have learned to just laugh it off and proceed with the session. It's great we have the NxStage and can just flat say the H--- with it and start over tomorrow if it gets that bad, unlike the clinic setting........

[kidney4traci]

Meinuk your posts are great, averyone who has trained and at home now can agree to having gone through alot of the same you have - but you say it so well!  Cheers to another sole Nxstager!

[Sluff]

    Meinuk and her Freedom machine  Great job.

[MEG]

LOL, ROF.... Thanks so much for all of your posts.  You really need to write a book!!  Your 'training journal' brought back so many memories for me.  I am my hubby's caregiver, don't think I could have done it alone!!    You have done a great job!   Congratulations.  Are you thinking of doing nocturnal in the future?  We hear that it is great!  One of the guys at our center does solo nocturnal...

[Meinuk]

Are you thinking of doing nocturnal in the future?  We hear that it is great!  One of the guys at our center does solo nocturnal...

I've thought about nocturnal - especially when I started dialysis.  I have a hard enough time having Nxstage in the living room.  In the bedroom - well, no.  Not for me.   I'd like to have as "normal" a life as possible. ummm maybe I'll stop there.

I do agree with others   - nocturnal  is much more like native kidney function.  And I'm all for it in theory. 

[Meinuk]

Just checking in...

I had my first out patient clinic visit today!  It is official, I'm going on a 5x schedule - but with a twist.  I'll be doing 30L on Sat & Sun and 20L on Tues, Wed, & Thurs (so, I have Monday & Friday off!  whoo hoo)

My KT/V was 2.25 (and my nephrologist agrees that the measurement of KT/V it is less than perfect - and he reiterated "as long as I am feeling good" - gee do you think he reads the boards?)

My blood work was good  - not a dramatic improvement like when I first started training - but hey, I'll take anything I can get.

To recap my first month -

There have been some "Oh Boy" moments - I've lost two full cartridges of blood - one at the beginning of the run (arterial clot) and one at the end of the run venous clot)

I've had some pretty dramatic blood spillage - The night my venous clotted as I sat there thinking "gee I wonder what an alarm 32 is..."  quickly the needle flew out and paint gunned  - me, my floor, my tv, it's pedestal and everything in between with blood..  That was a fun night - didn't I swear that I'd tape better???  ooops  I learned that bleach is a good thing to have at hand.

Umm - supply horror stories continue - but everyone has been nice (even when being inefficient) - I haven't been yelling and eventually - we'll figure out a system. (of course then I'll move)

Word got out at the unit about IHD and everyone has been reading my training posts.  I am alternately embarrassed and kinda proud.  When I asked my nephrologist if I am missing anything he said "Keep writing your blog" - made me feel all warm & fuzzy.  I think that we have some new lurkers. 

A woman at work came up to me yesterday and asked me what my secret was.  (I guess that I am not only feeling better, I am looking better) I laughed and told her "Daily Dialysis" - she was shocked - because she didn't know that I was even on dialysis.  I am much more comfortable talking about it now that I have so much control - oh let's face it  - I'm usually never uncomfortable talking period!  But this has been a pretty major step.

I'm starting to re-plan the infamous road trip that was supposed to happen last January, and I've taken December as a time to re-evaluate my future - figuring out what I want out of life - what to do when I leave my current job (ETA 3 more years) what my options will be if I don't get a transplant (listed 3 years - fingers crossed) versus if I stay on NxStage - all options that I either didn't have the energy or was too depressed to think about for the past 18 months.  Really, I had just been surviving - and now I feel as though I am actually living again.  It is a big difference.

I do think that we should have a thread NxStage Tips & Tricks - I have a few ideas and of course there are the ones that everyone had earlier in this thread - it would just be a nice thing to have them all in one thread. 

The next few weeks are going to be hectic for me - 'tis the party season - So I will mostly be a lurker here on IHD - I just want to say a big thank you to everyone here who made my 2007 survivable. I've never looked forward more to a new year as I do now - because anything is possible in 2008 - and 2007 will finally be in the past - relegated to memory.  I'm not usually a clean slate kind of person - but I think that is changing...

 

Anna

[goofynina]

There she is    Thank you for checking in girlfriend, it has been awhile since we have heard from you.  It sounds like you have gotten things down pretty good (except for the supplies)   believe me, i know all about that     Just wanted to tell you how great it is to hear from you again and to keep up the great work    Hope to hear more from you again soon, love ya toots  

[Sluff]

As requested. http://ihatedialysis.com/forum/index.php?topic=6212.msg91566#msg91566

Glad you have that first month out of the way. I'm also glad you are feeling much better. 

[okarol]

  You sound great Meinuk - have fun partying - I am happy you are seeing the future with possibilities!

[jbeany]

Meinuk, hydrogen peroxide gets out blood stains on colored cloth better than bleach!

[Meinuk]

January 17, 2008

So, Happy New Year!  I am going into my third month at home, and I thought I'd update.

1/12/08 was my one year hemoversary.  I celebrated with takeout Chinese and a bottle of wine.  Then I dialized with 30L...

I had my second monthly clinic visit.  Pre BUN 49; post BUN 29; creatinine 5.8; albumin 4.2; phos. 4.7; co2 27   and wait... get this KT/V 1.68  (WTF - this proves that the KT/V needs to be re worked for people doing daily dialysis.  Because I feel like it is 2.68.  I'm going to re draw labs on Sunday night.  And my Neph is going to re-evaluate the formula. - I pointed him to a blog that has posts about Kt/V and all sorts of Dialysis industry information  - He already reads IHD)

I have no dialysis complaints (well, NxStage can't get my deliveries right!  I now have 5 PurePaks in a tiny one bedroom NYC apt!!!)  -Other than minor annoyances,  I am so happy and I feel great.  Which is why I've been a bit absent lately - I took December off to re-evaluate and try to figure out what I'm going to do in the future. (I'm leaving my job in just under three years)  Hopefully I'll get a transplant in those three years - but then I want to move to a college town and go back to school.  Dialysis or not, there is a PhD in my future.  Of course, if I get my transplant, then I'd like to hop on a plane and study for a year in England.  If not, then I'll stay in the states.  It is pretty exciting to actually be planning for the future.

My energy level is amazing, I am back to working full time +, and I am really enjoying things.  In December I decided that I am going to make an effort to goto one play a month, one museum a month and as many movies and concerts as possible.  (I have Mondays and Fridays off from dialysis)  The flexibility that I now have is the biggest change for me.  There have been a few nights when I've filled out my flow sheet and I've still been dialyzing at 1:30am - but I try to be home by 7 to get on the machine by 8pm.  Sometimes it works, sometimes it doesn't.

I even caught myself trying to play dialysis hooky the other night.  It was late and I was tired and I just couldn't bring myself to put myself on the machine.  But I realized that I'd feel so much better in the morning if I just sucked it up and hooked myself up - so I did - (hence filling out a flow sheet at 1:30am)

Today at the unit, there were hugs and kisses and "You look amazing"  I stopped, looked at the room full of chairs and machines and really thought about all that we've gone through (all of us in the CKD family), some just starting, some at this for years - every day is a victory   - some days it feels like a battle, some days it is a bloodless coup.   For me, today is one of the good days.

And Paris - we still have Dollywood!

Oh, and Susie - Bob sends his love!!!

That's it, my three month update.

Anna

[KR Cincy]

I love hearing about your progress! You're doing so amazingly well!
I'll post tomorrow about my clinic visit today and the shot at stardom my center gave me!
(but for now, this typing one handed while on the machine has grown old...night!)

[paris]

Meinuk, you sound wonderful! I love reading your posts. You make everything so visual. I can see your apartment (and all the supplies!), we walk the streets of NYC with you and share your joys.  I hope you get to do a year in England. I am sure you would love to be close to family again.  So, you have nxstage mastered, let's get that transplant!  I have great hopes for my friends here, and my hope is a kidney for Anna.    Keep writing; someday you must write a book "A walk with Anna, one step at a time"   We get strength through your posts.  Thank you for sharing all your experiences.    Love you!!

[goofynina]

LOL, Girl, you are one amazing woman!  I love your outlook on life and the way you portray it (it gives us such a visual, well, it does for me)   You just keep doing what your doing and keep living life to its fullest my friend, You are an inspiration to us all 

   Hope you have a fun time with Bob, Looking forward to meeting him    lol, love ya girlfriend     ;

[Bill Peckham]

I'm not exactly sure of my hemoversary date. September 22? Great update.

Hope it's London after a great match.

[okarol]

Thought I'd post the link to the news article about you here http://ihatedialysis.com/forum/index.php?topic=7332.0 - great description!

[Sluff]

Thought I'd post the link to the news article about you here http://ihatedialysis.com/forum/index.php?topic=7332.0 - great description!

I was just reading that.

[Meinuk]

June 5, 2008 (seven months since my initial post)

Wow, so much has happened since I started this thread.  You know, my nurse prints out a copy of the main post and hands it to all of her new trainees.  I was trainee number 5 in the unit, now she has a waiting list and she has a current patient census in the double digits.

Things I've learned...

Home Hemo is the best ever situation for me.  I feel great, and have adjusted quite well to my 5x schedule.

Calling out NxStage on IHD makes them ignore you and get tough on your unit.  (which is why I've been ranting less - I actually respect my nurse and don't want her life made any more difficult.)

I am traveling again, and I love it.  It makes me so much happier.

I re-read the posts on this thread and I miss Susie.  What I admired so much about her was her unconditional ability to cheer people on - no matter what their differences. 

I guess that I just wanted to take a moment today and take stock. 

Since my last update, I've had a couple of serious equipment failures (all resolved - no missed dialysis).

Let's just say that out of seven home deliveries, I've had two good ones.  (gotta try to remain positive!)

My buttonholes are great.  (I just had an ultrasound to check them out) my fistula not so great, but at least it is working.

I thought that I knew a lot about CKD and Dialysis, but on a daily basis, I am learning so much, and I have met some amazing people along the way.  It has made the whole CKD experience so much more bearable.

Who knows what the next seven months will bring.... 

[okarol]

You've come a long way! Your training log here is a valuable record that will help many people who want to try the home hemo. Thanks for sharing it with us!

I am so happy you're feeling good! Would love to hear more about your travels too!
 

[monrein]

Thanks for all the details of how you manage.  So glad things are going well and home hemo is good for you.

[KR Cincy]

WOOOOOHOOOOO Anna...you are da' bomb! Congrats on making it this far and for feeling so good!

And I agree with Karol, tell us more of your travels in case you are heading our way!!

Your journey and spirit are indeed inspirations!!

[Meinuk]

I've decided to write the final chapter of my NxStage journey.

I was at home, alone, dialyzing for 1 year.  The dialysis was great, it kept me in the best possible health.  From 10/07 until 8/08 I had a smooth run with my training unit, a great relationship with my training nurse, and aside from a few delivery issues, all was well.

On August 15, 2008, my unit was closed by the NY State Department of Health for infection control violations in their in-center facility.  I was transferred to a unit that would not support me doing solo dialysis.  Many, many people got involved, and within two weeks, I had four units offering their services.  NxStage were supportive and sympathetic, The State of NY contacted me to make sure that I was well supplied and that things were ok, and thanks to the WWW my situation was internationally known.

I never missed a day of home dialysis, and aside from some depression over the situation, within a month, I was settled in at a new unit.  It was demanded that I have a full work up, and there were a lot of hoops to jump through, many Dr.'s appointments, an incenter demonstration of my technique, my transfer was more like a house closing, with all of the forms to sign, and 8 or 9 people in a conference room, but my new unit was just covering all of their bases, I don't blame them at all, as a matter of fact, all of the testing in September and October gave me a great baseline of my over all health, which was great.  NxStage was working, and I was in peak condition.

Which brings me to this final NxStage Training post, I received a deceased donor transplant on November 2, 2008.  From my initial intake into the hospital, each person I encountered said that I didn't look like a dialysis patient, and then I schooled them on home hemo.  I was shocked that not everyone knew that this therapy existed.  As far as I am concerned, Home Hemo saved my life.