I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Gil on April 30, 2006, 06:30:03 PM
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Hi to all,
Got this link from Kevin, and I am glad to see that he has got many friends here.
My story in short:
1962, I am 21. Kidney stones, PKD is suspected.
1984-Jan, Shunt surgery. Still working in 2006!
1984-May, 1st tx, 6 weeks, CMV, the kidney or your life, bye bye kidney.
1984 Jun-29, First hemo.
1986 2nd tx, never worked, severe infection.
1986 Moved to the US, got antibiotic for 3 years until infection was over.
1987 Bi-nephrectomy.
2000 A month of PD adventure, didn't work for me. Back on hemo.
2001 3rd tx. Almost 5 years on parole, every day is a precious gift out of a borrowed time.
I did okay on dialysis, worked all these years, did the needles myself and set the machine myself.
I don't hate dialysis but occasionally I have nightmares about going back there……
Since 1999 I've been active on a few message boards but now I've less time as I am busy with a home based business I've started.
And if you couldn't do the math I am 65, but I don't feel a day older than 56……
And I wouldn't be here to tell my story without the love and support of my wife.
My full story and lots of tips can be found in my website, which I started in late 1999.
So far about 26,000 visitors and counting.
http://gil1.home.pipeline.com/esrd/
I'll soon add a link to this website in my Links page.
Best wishes to all!
Gil
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Hi Gil, I'm glad to know Kevno has one "friend." ;D
Thank you for telling me your age. I'm bad at math! Welcome to the site and thank you for posting a link from your page.
From what I could tell you have your transplant and it is still going strong. Yes, each day with a transplant is a gift. You get up to 12 hours a week back to do with what you wish.
Please go to the Transplant Stories thread and tell us some of your experiences.
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Hey Gil,
Welcome I remember reading you site years ago. And I have seen you and your site on other message boards. You are a very popular guy. Welcome to my site and thank you for the link you placed on your site, I will be linking you on my site once I finish creating the Official ihatedialysis.com Home page. Also if you ever need a web host or would like me to help you get your own domain name I would be glad to help. I can even host the site for you for free through epohosting.com which is also one of my sites.
"And I wouldn't be here to tell my story without the love and support of my wife."
Tell me about it, I too have a great wife who is unbelievably supportive. I am blessed.
Well again welcome to the site and I hope I see many of your posts, we have a great bunch of people here.
- Epoman
Owner/Admin
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Hold on Gil just have to type something first.
Very Funny, NOT Rerun ;D
Welcome to the site Gil
We are all in the same boat here, Hope you post here. I am sure you will be able to advise some patients if they have any problem. Plus if you have any question too. We all know we are not Doctors but we have a lot of experiences and knowledge of renal problems.
Kevno
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Hi again friends,
I must say that I know that I have been lucky.
If you are "entitled" to kidney failure then PKD is your best bet (if they let you choose).
PKD comes with higher rate of aneurysm and mitral valve failure – not me.
I have nothing extra- no diabetes, heart or whatever.
And I was lucky to meet to most wonderful woman in the www. (After divorcing the… err… let's say, the opposite :-X).
On the first time we met I knew that it was it. We talked for about 8 hours, and of course I told her that dialysis would be in my future. That was 28 years ago and we still continue to talk a lot.
And while I am the optimistic type I had quite a few rough moments when the first and second transplants failed, accompanied by severe sickness and numerous surgeries, and she was there, waiting outside the OR for hours, helpful and cheerful (and crying when I couldn't see). Btw, coming to the US saved my life, as at that time there was no effective antibiotic against my bug. I was 3 years on Cipro, which back then was experimental, until a new drug cured me once and for all.
And I have been lucky being treated in one of the best hospitals and dialysis units in the US (Henry Ford Hospital, Detroit MI).
And lucky enough to be an expert in my field (software for machine tools) so I could make a decent living and support my family.
The third transplant wasn't smooth, the kidney didn't deliver, the surgeon said 50-50 and I watched the twin towers collapsing while in the hospitals.
But that was almost 5 years ago and counting.
Prednisone was stopped after 18 months and now I take 3x500 mg cellcept and 2x1mg rapamune. No moon-face, no weight gain, no hair loss.
The name Epoman reminds that in 1987 I was the first volunteer to test EPO in my unit. My Hgb was 6 and I received 2 units of blood every other week. With such a low blood count you have no desire to do anything. The Epo study was doubly blind, but after 3 weeks I had no doubt that I was on the right stuff ;D
Lately I was lucky again – 7 weeks ago I tripped and twisted my ankle. But fortunately I found myself sitting on the floor, no broken hips, no ribs, no nothing. After 6 weeks with a boot I can now put on the shoe, at home for now.
And if this post is a little long - you ain't heard nothing yet.
Altogether I put about 700 K of text on my website.
I try to focus on my blessings, but probably anyone has to get his/her share of troubles to appreciate their blessings.
Gil
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Gil,
I remember the trail for EPO in the UK 1988, it was well painful to have. Like a Bee sting going down your arm.
It worked to good for me a Hb of 7.5 to 14. So the Epo had to be stopped, because I was on the lowest dose that I could have had. Plus my BP was very high
Kevno
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Sadly I just came across this message on Gil's homepage:
The Ultimate Battle
The battle is over, and at 3:00pm on May 20, 2007 we lost a dear husband, a father, and a friend. We promise to share the full story, but for now we still need time to grieve. --Penny and Ron, wife and son
His story is there at http://gil1.home.pipeline.com/esrd/
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Love to his family at this late date. :grouphug;
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Prayers for the loved ones.
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What a fighter...his life is an inspiration. Love and hugs to his family :grouphug;