I Hate Dialysis Message Board

Introduction => Introduce Yourself => Topic started by: nog on February 03, 2011, 01:28:50 PM

Title: Hello from Arkansas, USA
Post by: nog on February 03, 2011, 01:28:50 PM

Where to begin where to begin...

I was hospitalized when I was 16 with extreme edema and irregular blood results. My first neph mis-diagnosed me with MCD. Since then, I've been on just about everything... prednisone, cytoxan, cyclosporine, cellcept, prograf, different combinations, different dose amounts. After two biopsies I have been confirmed FSGS. I've been fortunate enough to be under the care of the head of nephrology at the Mayo Clinic in MN (!!!) but unfortunate enough that I have been resistant to all medication and his last advice is to quit all as the immunosuppression (and being hospitalized with pneumonia/flu annually!) is not worth the small benefit.

He told me this during my visit at the end of July. Since then I've been getting regular blood tests with  my nephrologists (of course) and my creatinine as of late was 2.5, the highest it's ever been, up from 1.9 two months ago. It's not a horrible number but it doesn't change everything I've had to go thru, especially at my age.
Now I am "waiting it out" until I go into Stage 5 --> dialysis/transplant.

I've gotten past being scared, tho i still sometimes get depressed and frustrated about not being able to do anything about my condition. I've been diagnosed for other problems as well, namely, bipolar type 2 and substance abuse (i know, i know...) Of course, the 3 diagnoses in combination all create a bad cycle and make each other that much worse.
It's hard to balance sickness with college life. I'm now 22 and in my last semester at the Univ. of Arkansas. Some days are better than others...
That's me in a nutshell. I hope to find something POSITIVE from others here, because it's often hard to find it for myself.

Greetings and thank you
 :beer1;

Title: Re: Hello from Arkansas, USA
Post by: looneytunes on February 03, 2011, 09:03:47 PM

Hi Nog from a neighbor...I live in Southern Missouri.  Welcome to IHD.  You'll find others here with the same diagnosis and there are also quite a few younger members.  You've landed in a good spot to learn, ask questions, vent or get support from others who are or have walked in the same road. 

Title: Re: Hello from Arkansas, USA
Post by: Rerun on February 04, 2011, 07:03:03 PM

Hi Nog, I'm glad you found us.  They usually start people on dialysis when creatinine reaches 8 or your GFR gets down to 10 (give or take) it will depend on how you feel.  So, you have some good time left.  Enjoy life.  But.... stay away from addictions!  It will bite you in the ASS when you go to try and get listed for a transplant.  I don't even think you can breath second had smoke!!!!   ???

Read up on things here and I think you will feel better.

Rerun, Moderator       :welcomesign;

Title: Re: Hello from Arkansas, USA
Post by: Rerun on February 07, 2011, 06:33:16 PM

 :bump;

Title: Re: Hello from Arkansas, USA
Post by: galvo on February 07, 2011, 07:50:40 PM

G'day, Nog, and :welcomesign;.