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Author Topic: Thats my story and I'm stickin' to it  (Read 2853 times)
Crobake
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« on: October 25, 2006, 05:50:10 PM »

My name is Dan, I was diagnosed with Medullary cystic disease when I was 16 y/o. Was on dialysis when I was 20 y/o for 1 year before I got a trans plant (lucky!) The first year post transplant I had 3 rejection episodes that turned out to be a tissue scarring build-up at the point where the organ was attached. That ordeal cost  18 days in the hospital and alot of anxiety. Then there was smooth sailing for about 14 years when I injured my shoulder and knee (both were deemed "prednisone" issues. After 30 wks of out patient physical therapy 2x/wk, various scans, xrays and Dr. visits the shoulder came back to reasonable function but the knee never really did, even to this day it is bothersome. Then around Sept 2002, I developed a series of internal infections that ended up costing me my sigmoid colon and my right native kidney (both removed) I soon after learned that I had developed osteoporosis, Anemia, hyperparathyroidism and esrd (again  :()  Around Nov 2005 I was told by my eye Dr. that it was time for the cataracts in my eyes to come out. She said this could quite possibly mean that I could "throw away" my glasses! ( I just about came out of the womb wearing glasses!) I would possibly only need them for reading. A second opinion was needed to go ahead with this. In a second and subsequent third opinion it was learned that I had what is called central serous retinopathy (something that goes away in a normal person but given that I am on steroids and have hypertention, it could possibly lead to serious vision loss (2006 has seen my vision decline quite noticeably) ) I really thought I was getting some good news for a change (they won't touch the cataracts until they see where the retinopathy is going) Fast forward to today and I think to myself how lucky I am because overall I really don't feel to bad, I have a comfortable home, I still travel when I can and I am still very functional. I don't feel bad for my situation, I feel bad because nobody around me seems to give a rats a$$ about it. I am thankful for this site as it seems like a good support system. I thank anyone who made it threw this posting witout napping  ;)
I look forward to the future. God bless and thanks again.
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Rerun
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Going through life tied to a chair!

« Reply #1 on: October 25, 2006, 06:18:19 PM »

Great Story Dan, Thanks!  That is the part that gets to me.  If you are dying of cancer they all want to take your place and would do anything to help you.  But on Dialysis.... people see you (on your good days) acting normal.  So, no big deal!   >:(

 :popcorn;
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Ohio Buckeye
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« Reply #2 on: October 25, 2006, 09:05:28 PM »

Welcome to the site Dan.
Glad you are feeling well despite the many problems.
You're story is interesting, no one is going to nap through it.
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If I must do this to live, I must strive to live
while I am doing this.
Zach
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"Still crazy after all these years."

« Reply #3 on: October 25, 2006, 09:11:34 PM »

It's real good to have you with us, Dan!
 :beer1;
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
angieskidney
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« Reply #4 on: October 26, 2006, 04:11:58 AM »

 :welcomesign;
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FREE Donor List for all Kidney Patients!

diagnosed ESRD 1982
PD 2/90 - 4/90, 5/02 - 6/05
Transplant 4/11/90
Hemo 7/05-present (Inclinic Fres. 2008k 3x/wk MWF)
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