Hi all!
I am a 29 year old male that was first diagnosed in 1993 at 55% function with a single kidney. Now 11 years later told I am at 22% and in 6 months I will get a referral to Rochester Mayo. Is it me or does it sound like my Dr. is slow. Shouldn't this referall be done asap to assist in finding a living donor from my family?? I asked if i could bump it up to 3 months and was told nope!
Any way I just found this site and hope it can answer some of my questions, I have tons. Seems like it is easier to talk to someone who has lived this rather then even my wife who just thinks it should be fixed today?! thanks in advance
Mitch
New here!!
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new here
Mitch:
I'm afraid I can't help you with the transplant question. I'm also pretty much of a newbie and have not started the transplant paperwork yet. But kidney disease is something you have to live with on a daily basis and information is the answer. This BB and others can help a lot. Ask your questions and someone will be willing and able to answer them. No question is too stupid; we've all had them. And bug your medical staff, don't let them off the hook.
These links may help:
http://www.he.net/~brumley/renal/pdboard.html
http://www.kidneyschool.org/
http://www.kidney.org/
Good luck and keep us all informed. --Bruce
I'm afraid I can't help you with the transplant question. I'm also pretty much of a newbie and have not started the transplant paperwork yet. But kidney disease is something you have to live with on a daily basis and information is the answer. This BB and others can help a lot. Ask your questions and someone will be willing and able to answer them. No question is too stupid; we've all had them. And bug your medical staff, don't let them off the hook.
These links may help:
http://www.he.net/~brumley/renal/pdboard.html
http://www.kidneyschool.org/
http://www.kidney.org/
Good luck and keep us all informed. --Bruce
transplant
Mitch,
I've been doing the transplant thing for a little over a year now, and what I can tell you is that the transplant people will not even look or talk to you if your function is over 15% so just hang in there and try not to rush this night mair. Hope this helps and you can e-mail me if I can help any more.
Have fun and live life to the fullest.
Lyle
I've been doing the transplant thing for a little over a year now, and what I can tell you is that the transplant people will not even look or talk to you if your function is over 15% so just hang in there and try not to rush this night mair. Hope this helps and you can e-mail me if I can help any more.
Have fun and live life to the fullest.
Lyle
MITCH:
Just be patient, it will happen. I waited 2 yr for a transplant this is after a family member already agreed to donate and was determined to be an excellent match. however I found it helpful to keep bugging them with phone callsat least 3 a week, let them know I was NOT going away
good luck and god bless
Terry
Just be patient, it will happen. I waited 2 yr for a transplant this is after a family member already agreed to donate and was determined to be an excellent match. however I found it helpful to keep bugging them with phone callsat least 3 a week, let them know I was NOT going away
good luck and god bless
Terry
Terry Tucker
Hi Mitch,
Personally I wouldn't be "patient" until I know the proper truth - I would call Rochester Mayo direct and check with them if someone with 22% function can be referred to their transplant area. If they can, you can go back to your doctor and tell them this.
Also, I would question your doctor - how will they know in 6 months you can be referred ? Are they predicting your function will be at the right level then or will they fob you off with another six months ?
Great that double-tt got a transplant from a relative, but if possible you want to make sure you don't have to wait so long - you don't want to end up on dialysis if you have a family donor who can donate before this is necessary.
Goods luck,
Hal.
Personally I wouldn't be "patient" until I know the proper truth - I would call Rochester Mayo direct and check with them if someone with 22% function can be referred to their transplant area. If they can, you can go back to your doctor and tell them this.
Also, I would question your doctor - how will they know in 6 months you can be referred ? Are they predicting your function will be at the right level then or will they fob you off with another six months ?
Great that double-tt got a transplant from a relative, but if possible you want to make sure you don't have to wait so long - you don't want to end up on dialysis if you have a family donor who can donate before this is necessary.
Goods luck,
Hal.