I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Erin8607 on August 05, 2009, 01:11:08 PM
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Hello everyone, my name is Erin and I am from a small town in Northeast Ohio. I originally started dialysis in April of 2001 after my kidneys stopped working for unknown reasons. I was 18.
I received a living donor kidney in 2002, but it had a whole load of problems from the first year. It lasted four years with supportive IV steroids which did a number on me while keeping the kidney somewhat functional.
I returned to hemodialysis in June of 2006 and it has been a nightmare since. I'm on my 5th access (in my left thigh) after numerous revisions and craptastic catheters. Hopefully this graft lasts awhile because I'm running out of options.
I'm on the kidney waiting list, however, my type wait is up to around 9 years and my doctor doesn't think he can keep getting me proper access for that long if they keep failing. I'm on high doses of blood thinners to try to keep them open. Cursed with a clotting disorder that keep shutting down my grafts and catheters faster than I can get them in.
Anyhow, nice to find a place to share and complain to others who understand!
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Hi, I'm in southwest Ohio. I was wondering why your wait is 9 yrs? I just did an introduction here so you can read what I am doing they are working on advances at the Unv. of Cincinnati & Christ Hospital here in Cinci. I know Columbus has a good program is that near you? I wish you success. Phyl
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I'm registered with University Hospital in Cleveland. I received my first kidney at Akron City Hospital (my home away from home), but they discontinued their program.
My blood type wait is the longest of them all, from what I am told. Rare type, I think? Anyway, talking to patients and people who've recently been transplanted with my type have waiting between 8-9 years. In 2001, when I went into failure, they had told me my wait was 5-6 years but I got "lucky" with a family member matching and donating.
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:welcomesign; My wait time was 5 years for my blood type. I was called in 6 weeks. Don't lose hope!
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:welcomesign;
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Welcome, Erin!
:welcomesign;
You will find all sorts of information and support here.
Sorry to hear of your difficulties with access. Have you considered PD? You didn't mention that in your intro.
I'm looking forward to getting to know you better.
Aleta
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PD scares me a bit. With the IV steroids I became a very very horrible diabetic and unable to control VERY high sugar levels for two years. Since the solution has a high sugar base, I've been told that its highly likely I will revert back to being diabetic. I was lucky in reverting to none diabetic status as soon as the transplant was removed and I was taken off of iv and oral steroids.
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Oh, my. That does limit your options. Let's pull for a speedy well-working kidney for YOU!
:flower;
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Welcome. Sending positive thoughts for your new kidney which IS coming soon!
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:welcomesign; Glad you joined us and hope you find lots of answers and support here. It is a great group and we really care about each other. Welcome to IHD :grouphug;
paris, Moderator
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:welcomesign;