I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: ihstein on July 14, 2013, 09:54:01 AM
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Hi Everyone-
I am new to this message board and am grateful it exists. To share my story and why I am here: I am 53 years old and first found out I had kidney disease when I was 19 yrs old and a sophomore in college. I had 46 percent of my kidney function at that time and was diagnosed with membranous glomerul nephritis.
I hung on for another 9 years and started peritoneal dialysis in 1988. I was very fortunate and received a deceased donor kidney in 1989 which lasted almost 24 years. I started peritoneal dialysis again on January 1st this year. Things have not been going well... I have had numerous complications that have mad life hell and I have had many moments where I don't know if I can keep doing what I am doing. I was unable to use the cycler until recently due to pain. I have a fast membrane with makes things difficult and I have pain when I am empty. I feel awful most of the time. Hemodialysis has not been a straight forward options because my veins are SMALL. I keep hanging on in the hopes I will get a call for a kidney soon.
I have been on the national transplant list for 4.5 years now. In Massachusetts (the Northeast region) you don't start moving up on the transplant list until you start dialysis so I am also listed in Pittsburgh< PA and in Baltimore, MD. I am getting to the top of the list at John Hopkins in Baltimore. I have begun to get calls for potential kidneys but so far none were good enough. When I do get a call I will have to fly to Baltimore to get the transplant and then stay there for awhile afterwards.
I have not worked for over 3 years (I am an engineer/project manager). I like to spend time in my garden and work with clay when I feel well enough.
Looking forward to getting to know you all.
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Welcome to the site ihstein
:welcomesign;
Take care, Cas
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welcome and glad your here :) You sure are one that seems to be a great canidate for another kidney!! I do so hope that this comes soon so you can get on with life. It's hard when other options are limited :( Well, once again, im glad you found your way here and wish you well. keep active on the board, it really helps with sanity ;) :grouphug;
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:welcomesign;
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Welcome. You will find a lot of great people and wonderful information here. Looking forward to hearing more from you. :welcomesign;
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Wow & welcome to IHD. Youve been dealing with a lot over the years.
Again welcome & God Bless,
lmunchkin
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My wife has tiny veins too but at Lahey clinic in Burlington Mass. we had the top vascular doc create a fistula after the locals in maine didnt think they could. If you are interested in the docs name, send me a messsage and I will give you his name.
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ihstein, welcome to IHD. I'm so glad you found us. Your timeline is similar to mine. I am 52 and started dialysis in 1987 and got my kidney in 1988 but lasted 17 years. 24 for you is wonderful.. I now do incenter nocturnal hemo. 3 x a week for 8 hours each time. It sucks.
I hope you call comes soon. Keep us posted.
Rerun, Moderator :welcomesign;