M3Riddler - Introduction

[M3Riddler]

My name is Brian.  I have been on dialysis for almost 20 years along with 3 transplants in between the ages of 11 and 18. Two were living related from both parents. It was known from birth that my kidneys would fail so it was not as big as a suprise as many others. I have a genetic condition call cystinosis and was diagnosed at 22months old. Less than 2000 world wide have this genetic condition.

I have been on CCPD, CAPD for 13 years, In-center Hemo and now Home Hemo with NxStage. When I was on PD ( CAPD) After 13 years I had a bout of peritonitis which developed in EPS - Encapsulating Sclerosis Peritonitis. This is a condition where the peritoneal cavity becomes encased in fibrous tissue making PD impossible. It has a high mortality since it is not widely known and many do not know the symptoms. I was lucky enough to have a nephrologist who had seen the condition before and started treatment immediately. Otherwise I would not be here today.  I was very ill for several months. I went down to 86 lbs.

Since PD was no longer an issue, my nephrologist recommended NxStage back in 2005. NxStage has done wonders for me.  I was able to gain my weight back due to doing treatments 6 days per week.

I am Creator of the Facebook Group Dialysis Discussion Uncensored. We are a support and advocacy group for anyone from from Pre Dialysis, Dialysis, In-Center, Transplantation, Caregivers/partners and Medical Professionals. You can find the Group by searching or using the link:
Dialysis Discussion Uncensored

I have pretty much lived a life of dialysis, so to me, dialysis is just a part of life. Besides what are the alternatives? You just have to make the best out of a bad situation. I was given this illness for a reason. I may not know what that reason is, but one day I'm will find out.

If there is one thing I can say to everyone, it would be - educate yourself about your illness and treatment. Do not be afraid to question any medical professional. Do not rely solely on the medical staff telling you what to do. You are your best own advocate.  Decisions should be made together and not just one sided.

///M3Riddler

[Razman]

  It's great that you joined and I am sure that you will be able to share a great deal of information.   

[Riki]

Ahhh... someone who's been doing this as long as I have... and from a young age too.. I was 12 when I started on PD. I'm 32 now and it'll be 20 years for me in February.  We probably have the same attitude when it comes to dialysis. I see we already see eye to eye on one thing. dialysis IS much better than the alternative..... *G*

[Sax-O-Trix]

Glad you are here, but very sorry that all this happened to you (and Riki) at such a young age.  I have an 11 year old and she can barely remember to brush her teeth w/o my nagging her, I can't imagine her having the resposibility and limitations of ESRD.  Bless you both!

[Zach]

It's real good to have you here!
 

[Jean]

Thanks so much for joining us, and your into is great. Look forward to more posts from you.

[okarol]

Hey Brian,
  What took you so long? You might have the record for most posts BEFORE an intro - 117!
It's always great to see you participating. I have been on your site and there's good info there for NxStagers.
Welcome (belatedly) 

 
okarol/admin