Finding a living donor

[Elly50]

. Hi is anyone here living with a 100% sensitivity and unable to have a donor expect a living one ? I am in need of a living donor transplant but no family members or close friends have offered and sometimes I find this really hard to understand. Don’t want to sound ungrateful as strangers have been coming forward due to my daughter making a Facebook page but can’t understand why my family just don’t seem to understand how awful life is on dialysis.  I have been on now for 4 years in March and starting to feel hopeless that having another transplant will never happen. Had a message from my brother this morning that he has just arrived in the Maldives for another holiday ! Is there anyone else in a similar situation  out there ?  Also my living donor team often do not call people back when they have taken the trouble to call them to be tested ! Is it like that in the USA too ?
I am using Nxstage 5 x week for 3 hrs and working part time.

[cassandra]

Hi Elly, long time no see, I'm sorry your family is like mine. But I did get my dad's kidney when I was 20, which lasted till I was 33. Even though my own kidneys were thrown out without a conclusive diagnoses when I was 18, in my file it says now that the original diagnosis was FSGS, I tend to take it as " nobody has a clue, but kidneys ain't working".
As I'm now in Lancs UK, and the double nephrectomy was in The Netherlands 20 yrs earlier. Anyway I'm 100% full spectrum too. My brother once came up for a bloodtest which turned out to be a 100% match. But the more tests were done the more scared he became, so he refused in the end without further explanation apart from: he didn't want to become ill like me. Duh
My sister asked me if I really didn't want a kidney anymore some month ago, I asked if she was offering and straight away told her that if she had asked that 18 years ago that would have been great, but you can keep them now. I'm tired.

BUT I'll keep living this nonsense to keep my husband happy (so he says) and my friends whom I wouldn't want an organ from anyway. So I chose to D, we can't all be lucky (healthy) , and love the days when most goes well and I'm not dead.
 I hope you get lucky, or otherwise, get to feel better soon.

Lots of love, and strength, and luck, Cas

[justagirl2325]

Elly50 we are in the exact same position here (family wise anyways).  My husband's been on dialysis 9 months now and his family (2 brothers, 2 sisters, nieces, nephews in their 30's, and his own dtr - 22) have not offered.  The only one that did was his son (20).  And frankly, I don't think he wants to accept the possibility that he may be endangering his son even if it's just a 1% chance of something going wrong.

What really burns me about his family (other than the not offering/enquiring about being a donor) is that both his brothers are wealthy.  One paid for his whole extended family to go south for a month - 9 people and has now just paid for one of the sisters and her husband to go south as well.  All of these people work and earn a good living.  My husband has not been able to work since he started dialysis.  No paycheck in 9 months and no one has even offered him anything.  His medicine alone is close to $500 a month.  We had to sell our house and move.  Not a peep, no "how are you doing for money"  Nada.  The other brother actually told him at xmas "I hear you can buy a new kidney if you have enough money."  I was flabberghasted.  So, ya shitty family here, I hear you loud and clear.

Hopefully I will be a match (here in Canada the testing is incredibly slow...they are still trying to sort out if he's a candidate for transplant).

[PaulBC]

My brother once came up for a bloodtest which turned out to be a 100% match. But the more tests were done the more scared he became, so he refused in the end without further explanation apart from: he didn't want to become ill like me. Duh

I couldn't bear to let this by without comment. While I don't believe anyone is obligated to donate a kidney for family or anybody else, there is no excuse for ignorance like that. I know that if I donate a kidney, then aside from immediate risks of surgery, I will be left with sufficient kidney function and go back to a fairly unremarkable life. It is a lot easier to live with one healthy kidney of your own than to maintain a transplant. I wouldn't have known this before, but when my daughter was hospitalized, I immediately read as much as I could about this and anything else remotely relevant. I assume that people educate themselves when faced with difficult decisions.

So I cannot even imagine someone trying to equate the situation that way. I do understand that it was years ago, and maybe the resources weren't there to help him understand the situation. I also believe that it's always valid to say it's risky and you're too scared. But he would not have "become ill". If he really said that, I wonder what he meant or if he just wanted to rationalize his vague fears.

Anyway, I guess your dad helped you out. I'm not familiar with FSGS but I see it is something that can come back in a transplant kidney. Was that a serious concern at that time, particularly with having a living donor?

[PaulBC]

The other brother actually told him at xmas "I hear you can buy a new kidney if you have enough money."  I was flabberghasted.

Wow, that does kind of say it all (about what really matters to your husband's family, that is). Anyone who says something like that to me is going to get a long lecture on bioethics in return.  A financial wizard like that must understand that for every buyer there has to be a seller, right? "I hear that in some parts of the world you can sell your kidney if you're poor and desperate enough."

Caveat: This is all hypothetical to me. I feel strongly that I would give a kidney to my daughter, but that kind of parental drive probably doesn't extend to other family members. And no matter how I feel now, only time will tell what will actually happen.

[MooseMom]

I didn't get any offers from my extended family, either, and that's despite the fact that everyone knew my mom had been on dialysis along with one aunt and one cousin.  So, dialysis wasn't exactly a new concept for any of them.  Even when I was in the same room with them on one Thanksgiving Day, no one even asked how I was doing.  And they're "Christians", or so they claim.

Yours is not an uncommon story, Elly50.  I'm very sorry that this is happening to you.  And justagirl, your story is just unbelievable!

Elly50, I can't explain why your tx center doesn't call back those people who have called those who have offered to be tested.  Who told you that?  Did your living donor team tell you this, or was it someone who perhaps claimed to have called?  I hate to ask, but could someone be lying to you?

[Simon Dog]

I couldn't bear to let this by without comment. While I don't believe anyone is obligated to donate a kidney for family or anybody else, there is no excuse for ignorance like that. I know that if I donate a kidney, then aside from immediate risks of surgery, I will be left with sufficient kidney function and go back to a fairly unremarkable life. It is a lot easier to live with one healthy kidney of your own than to maintain a transplant.

He would be like you in a sense of "having one working kidney".   He would not be like you in the aspect of having to deal with renal disease forever.

His only three risks are surgery (minimal); and not having a spare in event of renal trauma or kidney cancer.

[okarol]

Elly - why can't you get a deceased donor kidney? Do you mean they have to desensitize you to a living donor?
My daughter has 100% antibodies, and while the chances are slim she would find a match on the national donor list, it has happened.

[PaulBC]

He would be like [the recipient] in a sense of "having one working kidney".   He would not be like [the recipient] in the aspect of having to deal with renal disease forever.

Understood. So maybe cassandra's brother's point was "I've seen how tough you have it and I'm afraid to do anything that would compromise my kidney function." But it sounded more superstitious to me, like he thought he was going to "catch the same disease" if he did it.

[cassandra]

Thanx

           


And Elly, it is true what okarol says, it does happen. So never give up hope, but I would live your live to the full now, and don't spend your precious energy on thinking what could have been.

Love, Cas