I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: loopywinks on August 18, 2010, 10:12:52 PM
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Hello there,
I am one of the luckiest people alive.. I have several people who have applied to be my kidney donor :) Out of the 7 people who have come forward, there is one who is a very good potential donor (as far as I know). This is the first time it has gotten this far. The blood work revealed a good cross match and I think most everything is in order.. but the last I heard, there were traces of protein in her urine (higher level than they like). There are no other indicators that her kidneys are compromised. She exercises a lot and is an extremely active person (with a full life and stress to go with it). She shared with me that the nurse was going to talk to the neph at the transplant center.
I am hopeful.. but realistic. Has anyone ever had experience with this? I REALLY want this to work out. This person is so excited about helping me and I am so thankful.
Any response would be so appreciated!!
Thank you and take care!!!
Tracy (aka Loopywinks)
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This doesn't sound hopeful. The surgeons are so particular about the health of the donor. My mom had to jump through all sorts of hoops to be my donor years ago. Your donor could ask to redo the test or do a different test to confirm the health of his/her kidneys but if they think there's any chance the donor has kidney disease they won't go for it. I'm really really sorry.
Jeanne
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Yes. My first donor tested (my brother) had protein. Their cut off was 150 mcg (I think that's the measurement) and he was like 157. Very close and they denied him. My clinic was very picky. Other clinic's had a max of 200, but not mine. Apparently, they had recently lowered it to 150. I thing it was micrograms, but not 100% sure on that. When I told my nephrologist he said that he should go be seen by a Nephrologist cause "kidney disease has to start somewhere". I didn't want to take that risk with my brother, so I was glad they denied him. I should say that they even redrew him just to be sure. It was a tad higher than that the first draw, but I can't remember the number. Good Luck.
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Thank you for the input here!! It helps to hear about the experience of others (good and bad).
I will see what the doctors say. Maybe there is a reason that it was slightly elevated and they can do another test to confirm whether the kidneys are healthy or not.. I don't know.
I am glad that they are so careful...really glad.. but darn it.... it would be so nice if this works out.
Thank you, again!!
Take care!
Tracy
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Yes, ask for a do over. I don't know that they are obligated to do it, but hopefully they will. When my husband tested they said he had too much calcium in his urine, as well as two tiny "anomalies" which could be the beginning of kidney stones. Even after he was denied, they sent his results out to another specialty clinic out of State I think just to verify. They still denied him. Do you know their cut off number?
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Hi Kelly,
I am not sure what is happening right now. I do not know the cut off number or what the initial results were.
I am crossing my fingers that they are going to go the extra distance to check into this further.
Thank you so much for your message :) I hope all is well with everyone!
Tracy
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Loopy, you can ask what the cut off number is, but your donor will have to ask what their protein level is. They won't give you that. Also, have your donor ask for a redo. Maybe that would help.
And my brother's name is Tracy. :D
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unfortunately I do have experience with this. My Dsis was the first to be tested and we matched but she had high protein. She went through months of testing... even went so far as to have a kidney biopsy but in the end they decided she could not donate.
She was so upset and she still is.
I was disappointed but I am not getting too excited about any transplant until i am actually driving to the hospital...
Good luck and I hope it works out for you! My sister was very aggressive and determined to donate , so she had every test possible until they finally made the determination....
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UPDATE (I think)
Well, I e-mailed my potential donor today and she responded... She said that the team at the transplant center is supposed to be reviewing our case TOMORROW! Of course I am over thinking it here... I started thinking.. if the protein issue were the determining factor for them, might they have just declined the donor without taking it all of the way to the review board? If it was not at all possible... would they take it this far OR do they just do this meeting as a formality even if they are going to refuse? Ohhh I am sort of freaking out. Sorry for the weird post. I do hope it makes sense.
Thank you for the thoughts and advice :) I really do appreciate it!
Take care!
Tracy
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Carol- I know that experience must have been so difficult for you and your family! My thoughts and prayers are with you and so hopeful that you receive a kidney soon!!
Kelly :) Thank you for the advice. I like the name Tracy for a boy or girl.. it just works. I have a twin named Tim- 13 years post transplant from my dad- going strong!! Love him :)
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HI Tracy!
Let us know how it goes! I will be praying that the board gives you the go ahead!!!
:cuddle;
Carol in NJ
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Yes, that would make sense, but my first three testing donors all went to the "committee" and all were given reasons why they would more than likely be denied before being sent to the "committee". I thought that was strange, too. Good Luck! You just never know. :cuddle;
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Well, I found out the other day that my potential donor was declined because of the protein thing. I honestly expected this outcome, but was hopeful that somehow they found a reason and a solution. I know.. I was dreaming..
I wonder, should I send her some sort of token of appreciation or thank you for all she has done? I thought of sending flowers.. or something that shows my appreciation.
Ah well.
I hope everyone has a great week!
Take care,
Tracy