NxStage Training starts... (now with pictures)

[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.

[Wallyz]

Congratulations, Meinuk.  Thank you for sharing.

[G-Ma]

Thank you for your timeline.
Ann

[Meinuk]

Now that my original dialysis clinic has been closed for a couple of years, I have decided to add some pictures to the first post.  It is sad that the at home center went down with the Davita Shipwreck that was DaVita Life Care Dialysis, NYC.