Relatives and Transplants.

[angieskidney]

I couldn't ask anyone who is young because so much can happen in their lives that they can't predict. I have friends who have offered but I won't go up to them and ask, "are you still interested in that?" because I think they don't have all the info needed to make an informed decision. Maybe I should inform them, but if anything happened down the road I would feel so guilty. I am not afraid to ask by any means, but just would feel guilty down the road. Especially if the kidney that would be given to me didn't even take and I reject it right there on the operating table! Man I would feel bad. But I suppose so would they.

I also have a cousin who had offered but since I haven't heard from her in years I am not about to call her up and say, "Hey! So what about that kidney huh?"

My one brother is too scared so I don't ask him and my other brother can't so he is mad at the one brother who probably could. I keep telling certain members of my family to not pressure anyone.

[Rerun]

If a person donates a kidney and then ends up with ESRD they go to the top of the transplant list (if they pass the other health requirements).

That is what I've been told.  I've also been told that I'm on the list!  (who knows)

[Zach]

Remember, a living donor can also be a more distant family member, spouse or friend.
The American playwright Neil Simon received a donation from his longtime friend and manager.

[Rerun]

A Co-Worker insisted that she be tested for me.  She said that she was going to give away one of her kidneys either to me or a stranger.  I thought she was "just saying that."  NOPE as soon as we didn't match she gave it to a stranger!  Both are doing great. 

(But it was MINE)   

[jbeany]

My sister has offered to give me a kidney.  Neither of us has done any testing yet, but I know we have the same blood type.  She's offering because she wants too, not because anyone is pressuring her, but I'm still hesitant to accept.  She has a child, while I have none, and diabetes and other health problems run in both sides of our parents' families.  How horrible am I going to feel if she gets sick in a few years and ends up on the UNOS list herself?  How is that fair to my nephew?  I know what the stats are when it comes to cadaver transplants - not good at all.  My mother and aunt both died waiting for organ transplants.  And we don't have any other family able to donate if she needs a kidney.

UNOS.org has daily updates on their stats - as of right now, there are 2586 people in Michigan waiting for a kidney.  450 with my blood type.  I may not be a math whiz, but I can figure the odds on that without a calculator.

Stats for today, nationally - 93,514 candidates on the waiting list for various organs.  From January to July of this year, only 17,168 transplants.

I guess I feel if someone is going to take that gamble, it ought to be me.  I just feel like asking this of her is too much of a risk, both to her health and her son's future.

[angieskidney]

My sister has offered to give me a kidney.  Neither of us has done any testing yet, but I know we have the same blood type.  She's offering because she wants too, not because anyone is pressuring her, but I'm still hesitant to accept.  She has a child, while I have none, and diabetes and other health problems run in both sides of our parents' families.  How horrible am I going to feel if she gets sick in a few years and ends up on the UNOS list herself?  How is that fair to my nephew?  I know what the stats are when it comes to cadaver transplants - not good at all.  My mother and aunt both died waiting for organ transplants.  And we don't have any other family able to donate if she needs a kidney.

UNOS.org has daily updates on their stats - as of right now, there are 2586 people in Michigan waiting for a kidney.  450 with my blood type.  I may not be a math whiz, but I can figure the odds on that without a calculator.

Stats for today, nationally - 93,514 candidates on the waiting list for various organs.  From January to July of this year, only 17,168 transplants.

I guess I feel if someone is going to take that gamble, it ought to be me.  I just feel like asking this of her is too much of a risk, both to her health and her son's future.

I wish I knew the exact number in Ontario but it is a lot larger than Michigan

You are right across the river from me! What is your Blood type? Mine is O+

My last transplant was from a cadaver! It was great! I felt alive again!

[jbeany]

I'm B+, angie. 

And speaking of stats, on one of these threads, the death rate for living donors was listed as 3 in 10,000.  Hmmm. . . I don't know if that's accurate, but it seems like I'd do better at the odds of being one of 2586, than Sis would at being one of the 3 in 10,000 (1 out of every 3,333).

Besides, if I really got my wish - I'd get a pancreas at the same time.  I can't get that from a live donor! 

[coravh]

I'm B+, angie. 
 
Besides, if I really got my wish - I'd get a pancreas at the same time.  I can't get that from a live donor! 

Believe it or not, some centers do a living donor pancreas transplant. The only thing is that they make sure that the donor has a large overcapacity in the pancreas, so they don't do it that often. But it has been done.

Cora

[paris]

I seem to be in an unusual situation. Before I even began evaluation for the transplant list, a young woman I have known for years called the center and said she wanted to be the first one tested for living donation. All four of my children have been tested, 2 nieces have offered, 2 parents of my students and my brother. Of course, my antibodies keep me from getting a transplant (unless Johns Hopkins accepts me for plasmapheresis).  I am still struggling with a taking a kidney from someone. I have all the worries others have voiced. My daughter-in-law told me not to worry - if my son ends up with kidney problems in the future, he can have one of hers!  I have a very strong, positive, close family and I know how fortunate I am. One son is a problem solver, and he has the whole thing worked out in his mind and for him it is a done deal. I am a worrier, and can't help but be concerned about his future. It isn't like I am borrowing his lawn mower!  Very hard decision. 

[goofynina]

We have found my match and he is my best friends husband (the only one that has been tested) but due to the fact that i am overweight (so they say)  lol,  they wont do it until i reach a certain weight,  well, being on ccpd makes it even that much harder to even think of losing weight, although i was gaining weight alot more faster while i was on hemo (weird huh)  but he still tells me he is ready to stick his "organ in me"    lol, 

[Panda_9]

Im in the same situation goofinya. You would think it would be an extreme motivator to lose weight, but it still doesnt make it any easier. I lost alot of weight on PD luckily, but not so luckily because it was due to being so sick. It has given me a starting point though. I am determined, I just dont have much energy or motivation. However the more I tell myself I hate dialysis, the more it motivates me.

[Judy]

Congratulations goofynina on finding a match. 

[Crobake]

My problem is not so much relatives not approaching me and offering up an organ, my problem is getting my family to offer up anything (advice, encouraging phone call, words of support etc...) It is discouraging and I am having a problem with it.

[Black]

My problem is not so much relatives not approaching me and offering up an organ, my problem is getting my family to offer up anything (advice, encouraging phone call, words of support etc...) It is discouraging and I am having a problem with it.

Unfortunately, that is much too often the case.  Thank God and Epoman for this caring group.

My husband has two brothers and two sisters; out of the four, three live within a 20 to 45 minute drive.  The one sister two hours away calls occasionally.  A brother who lives nearby, calls occasionally and has offered a kidney, (but given his age, 58, and years of heavy drinking I doubt he could).  The other two probably contact him less than once a year.  His father is deceased, and his mother lives in an assisted living facility 2 hours away -- early stage geriatric dementia, which sometimes prevents her from being able to carry on a phone conversation.  It is not unusual to go more than three weeks with no calls from any of them.

His two daughters never call.  One lives in Europe and he has not seen her since she was 18 months old.  The other daughter, who also has PKD, has never forgiven him for divorcing her mother almost 30 years ago and won't even allow him to see his grandchildren.

The one bright spot in the family is his son and his wife, and their two boys.  He also has PKD, but he calls often, visits when they come to SC from TN, and sends e-mail and pics often.

My family is 9 hours away in FL.  They call me frequently and always ask how he is doing.  But, my main support is my 3 close friends, and thanks to them I am able to be my husband's support.

When our family can't/won't support us, we have to find others who will.  Fortunately for all of us we have each other here.

But it sure would be nice for my husband to get frequent calls and visits from his family, and have them show concern, and reassure him that they do care and are interested.

[Crobake]

Thanks black- I'm not discouraged, just disappointed. I do need to look in other directions for support as the lack of family support was no suprise.

[angieskidney]

My problem is not so much relatives not approaching me and offering up an organ, my problem is getting my family to offer up anything (advice, encouraging phone call, words of support etc...) It is discouraging and I am having a problem with it.

I know what you mean. My family feels they are supportive because they love me BUT they don't call or visit even though they keep telling me they will. I don't visit them neither but that is because I don't have a car or money or the energy to sit on a bus when I can't get ahold of them by phone most of the time. It is difficult. I think that is why I depend on Sandman so much to be there for me. Even my friends .. only one comes around once a month. ...But just recently my one friend who had been in Korea and Tiawan for the last 3 years came back and he has been visiting me at dialysis. Something I am NOT used to!

As for relatives and transplants ... only my mom got tested and she matched but they said that her kidneys didn't work well enough for them to feel safe taking one of hers for me. My one brother can't donate because his teeth are so badly rotten and no one in my family can afford coverage for him. My dad can't donate because he has a rare type of Juvinile Arthritis called Stills and my other brother is way too scared. I would ask my cousin who offered years ago but she doesn't return any of my emails anymore and I don't know why. There is no one else but Sandman ... and since he isn't family it would be less likely he would be such a good match as family would. Plus I would want him to be sure and all. Plus we are in 2 different countries so I worry that would complicate things.

Infact, since my family isn't really there and a LOT of my friends have moved away (I never expected the one to come back) I have felt alone for so long in my health condition. I remember at times in my life when I wanted to talk about it with my family.. my brother would say to be "we don't want to hear your life story!!"

[Crobake]

Nice letter Angie! My family has the philosophy of "if I pretend its not there, then it really isn't there" Actually, I don't know why they are that way but they are. I need to change tactics and find support systems that will work. I am an expert at driving myself crazy and that does not help either. I do like this site and I think it will be of assistance with questions and such. I need a little tutoring on how to get the most of it though. Please write back and let me know how you are doing as I will do the same. Also, once I get going on this site, I will be bothering you with more questions.

[vandie]

My problem is not so much relatives not approaching me and offering up an organ, my problem is getting my family to offer up anything (advice, encouraging phone call, words of support etc...) It is discouraging and I am having a problem with it.

I know what you mean. My family feels they are supportive because they love me BUT they don't call or visit even though they keep telling me they will. I don't visit them neither but that is because I don't have a car or money or the energy to sit on a bus when I can't get ahold of them by phone most of the time. It is difficult. I think that is why I depend on Sandman so much to be there for me. Even my friends .. only one comes around once a month. ...But just recently my one friend who had been in Korea and Tiawan for the last 3 years came back and he has been visiting me at dialysis. Something I am NOT used to!

As for relatives and transplants ... only my mom got tested and she matched but they said that her kidneys didn't work well enough for them to feel safe taking one of hers for me. My one brother can't donate because his teeth are so badly rotten and no one in my family can afford coverage for him. My dad can't donate because he has a rare type of Juvinile Arthritis called Stills and my other brother is way too scared. I would ask my cousin who offered years ago but she doesn't return any of my emails anymore and I don't know why. There is no one else but Sandman ... and since he isn't family it would be less likely he would be such a good match as family would. Plus I would want him to be sure and all. Plus we are in 2 different countries so I worry that would complicate things.

Infact, since my family isn't really there and a LOT of my friends have moved away (I never expected the one to come back) I have felt alone for so long in my health condition. I remember at times in my life when I wanted to talk about it with my family.. my brother would say to be "we don't want to hear your life story!!"

Angie, my boyfriend was tested.  He lives in Engand.  My transplant center, and I am in America, said there would be no problem, but for the logistics of the work up because he would have to travel so much.  It turned out he wasn't a match, but two of my girlfriends, who are not related to me by blood, were. 

[Black]

Thanks black- I'm not discouraged, just disappointed. I do need to look in other directions for support as the lack of family support was no suprise.

I don't think my husband was surprised either, and yes, I think he too was a little disappointed.  Of course, since he has traveled extensively with his business for decades, he and they are not used to him being home all of the time and available for visits, so in his case that may be a factor. 

Actually, his seven nieces and nephews would probably be the best candidates in the family to donate, but not one has mentioned it or even asked if he is considering a transplant.  But, he was quick to let everyone know that if they were considering donating, to please save the kidney for one of his children.  His 31 year old son's kidney function is near where his was about three years ago, when he was 60.  The best hope for his children is the two drugs in clinical trials which have already been shown to reverse the cyst growth and multiplication.

[kitkatz]

My sister and I were talking how we are going to absolutley drive our mother over the edge when my sister donates a kidney to me.   We were cracking up today at the hospital thinking she would not who to visit first.  Me the grouch who wants to be left alone when I do not feel good, or Christy the Grinch, who definitley wants to be left alone to recover!.