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
I Hate Dialysis Message Board
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