Greetings from the Big Apple

[SugarBear]

Greetings to all, I am from New York City, born and raised and found this site when I did a Google search for NxStage users in the NYC area.

I was originally diagnose in 1999 with kidney failure due to Focal Segmental Glomerulosclerosis, also know as FSGS for short.  At the time I was 27 years old and attending college in Springfield, Missouri.

I returned home with the expectation of dying as I had no insurance nor money to my name.  After a couple of months, I saw that I wasn't going anywhere fast and start looking around for treatment.  Found a clinic that help me get insurance and started seeing a specialist who was able to get me from Stage 4 to Stage 3 kidney failure.  After seven years, I found myself in dire need of dialysis.  In September 13, 2006 I start hemo dialysis in the hospital and after four months I was moved to a center.

My first attempt at home hemo was in 2009.  At first it was going fine, but my numbers were not to my doctor's expectations.  So my doctor keep increasing my Dialysate amount, which meant longer treatment times.  I went from fifteen hours a week to thirty-six hours of treatment a week.     

This did not work well with my care partner, my sister, who was trying to juggle a full time job, doing her masters, and my needs as a patient.  So I ended up back in center till May 2011 when my social worker told me of another center that did not require a partner.  The rest is history as I've been doing nocturnal home hemo dialysis alone since then. 

Thanks for allowing me to join.

[MooseMom]

Oh oh oh oh oh oh...I am SO glad you posted.  I don't know if you've seen it, but on the NxStage section of this forum, there is a bit of a debate about whether or not clinics will allow someone to dialyze at home alone.  So, you are proof positive that it IS allowed, depending upon the clinic.

I have fsgs, too, but have not yet started dialysis, but when I do, I want to eventually work up to nocturnal on NxStage, so I am particularly interested in your story.  Thanks so much for joining and for posting about your experiences.  Please post a lot!

[willowtreewren]

 

(again).

Yes, indeed, I was thrilled to read that you were doing NxStage without a partner. 

I hope that more clinics start supporting this option as many folks are perfectly capable of going it alone.

Lots of info here. 

Aleta

[Lillupie]

Welcome here,
 That is really cool you are able to do NxStage without a partner!

So, let me get this straight. You do nocturnal home hemo, without a partner? Wow how cool is that! How is the diet restrictions with that?

To me that would be the best dialysis is nocturnal home hemo.Free days and the most dialysis.
 Are you on the transpant list in NY? I heard its a 10 year wait.

Lisa

[Poppylicious]

 

[Chris]

Helloi have no movie or song quotes and nothing smart   to say. Basically I am a person of so few words. (Well so far)

[SugarBear]

Thank you all for the warm welcome.

Welcome here,
 That is really cool you are able to do NxStage without a partner!

So, let me get this straight. You do nocturnal home hemo, without a partner? Wow how cool is that! How is the diet restrictions with that?

To me that would be the best dialysis is nocturnal home hemo.Free days and the most dialysis.
 Are you on the transpant list in NY? I heard its a 10 year wait.

Lisa

The diet opposite the renal diet for me, my potassium has been on the low side so they have me eating everything that I was not allowed to eat before. 

If you want a perfect match, then it can be from 7 to 10 years.  I've been on the list for almost five years and am now getting offers for imperfect or high risk matches.

Oh oh oh oh oh oh...I am SO glad you posted.  I don't know if you've seen it, but on the NxStage section of this forum, there is a bit of a debate about whether or not clinics will allow someone to dialyze at home alone.  So, you are proof positive that it IS allowed, depending upon the clinic.

I have fsgs, too, but have not yet started dialysis, but when I do, I want to eventually work up to nocturnal on NxStage, so I am particularly interested in your story.  Thanks so much for joining and for posting about your experiences.  Please post a lot!

I did post on that thread about the "virtual partner".  I feel very lucky as I have been in two different dialysis centers and both have been very good for the most part.  Both my doctors are great, I still pass by to see my first doctor, and i feel like they do fight for me.  I am one of a few who does nocturnal on the NxStage, most do it in the early evening.  There are several who do nocturnal, but with the Fresenius machine.

[looneytunes]

Hi SugarBear!  Glad to have you here but sorry you have a reason to be.  I have lived around the Springfield, MO area for most of my adult life (and I hate to admit how many years that has been...    )

NxStage is a great thing and I'm glad you found a clinic willing to let you do it without a partner.  My hubby and I did NxStage for almost 2 years, now he is doing nocturnal in-center. 

[Rerun]

Sugarbear, Welcome to IHD.  I'm so glad you found us.  Doing homehemo alone?  You go!  That is awesome.  Even if someone could put you on and come back 8 hours later and take you off this plan would be better than your sister putting in 36 hours a week.

I do incenter Nocturnal.  I only live a mile from the center so this works for me.

Rerun, Moderator   

[lmunchkin]

Welcome Sugarbear!  Youve been dealing with this kidney stuff quite sometime I see.  Your experiences could probably help others here.  Thanks for posting!

Again Welcome & God Bless,
lmunchkin
 

[kellyt]

    Welcome!  I also didn't have insurance when i was first diagnosed in 94, but thankfully I was able to get insurance through work and I've paid out the nose for it ever since.  But I am thankful for insurance, for sure.     I look forward to hearing more about you.

[SugarBear]

Update:  Hello all, I have not been around because I got the call from UNOS for a cadaver donor.  I received the transplant on March 1, 2012.  After a little more than five years on the list, I can't believe they finally call me!   


 

[conchman]

Welcome SugarBear.  Keep coming Back....



 

[Traveller1947]

Congratulations, Sugar Bear!  All the best to you!

[Grumpy-1]

Congrates on getting a transplant.  Please keep us updated on your progress.  Grumpy