Donor kidney vs waiting list

[chook]

I've just had my annual transplant review which went well. Doctors are pleased with my general health, weight, bloods, etc. The transplant surgeon is keen for me to find a live donor. And my eldest sister is consistent in offering a kidney. Now, I know all the pros for a live donor, especially a sibling BUT these are my negetives: my sister is in her 60s, is retired after years of working, she and her hubby do everything together and he is not truly well and relies heavily on her. I just can't feel comfortable with her going through the donor surgery for me. The transplant doctor thinks I am being silly about it. I love my sister dearly. AND my Mum is 89 - how will she cope with two daughters under the knife at the same time?! At present PD is going well. I know I might change my tune if a bout of illness ends PD and I have to do haemo but at the moment I am content to wait. Hubby supports me in this.
So......I have put myself out here: what do you think? I'd appreciate some input. Am I being obtuse about the issue?

[okarol]

You can do whatever makes you comfortable and if PD is working, there's no urgency to get a transplant. You'd get transplanted a lot sooner, and may have a better long-term outcome (although as we have seen, there's no guarantees) with a live donor. If you're content to get a deceased donor kidney in a few years, then that's your choice.

[Jie]

I guess it depends on your blood type and location. If you need to wait for 6-8 years for a deceased donor, the PD may not work after a few years.  If you get a good blood type (AB or A), you can always find a center so that the waiting time is not too long. Another factor is the health of your sister. If she is very healthy, age is not too important.  When one is on dialysis for too long, there is always a chance that his or her health may become too bad to have a transplant. In the U.S., about 6-7 percent of patients are removed from the waiting list each year due to bad health or death. It is a hard decision.

[chook]

 Thanks for your input, Karol - that's how I feel - that it is MY choice.
And Jie, appreciate your thoughts too. I know it's a gamble. My blood type is AB+ so I am lucky there. I really feel that wait and see is the thing to do at the moment.

[RichardMEL]

Jie - just a small note that Chook is in Australia, and we have a national list - it is not related to specific centers or units or whatever.

Chook - I think you know the answer to this one already. At the end of the day it's what YOU are comfortable with. Right now you are not comfortable with taking your sister's kidney (and she's only considering it, at this point). At the end of the day it is your body/life and your choice. As for your doc thinking it is "silly" - I think that's a bit insulting to be like that. Yes, I can understand where they are coming from - I mean there's no reason to see why your sister couldn't totally recover from the surgery and continue to care for her hubby and lead a long life. However you don't want to put her through that, and that's totally up to you.

Also remember in terms of the cadaveric list that the time you are doing on PD will count. So if you are happy to do PD and wait for the call then that seems the way to go for your peace of mind.

[Jie]

I really have no idea about the waiting list in Australia. If in the U.S., one can get a kidney in a very short time in some centers for AB blood type if PRA is not too high. If Chook still has difficulty to make the decision, it may be worthwhile to check the kidney allocation policy in Australia to see the likely waiting time for AB blood type.

[chook]

Thanks guys. I realise I am facing a wait of at least 5 years. I am not even active yet, although I know the length of time is taken from when I commenced PD (June this year). I think I have one more round of bloods and then I'm on the list. I knew that it was MY choice - I just needed some reassurance. I can understand the doctor's point of view - an orderly organised donor transplant is obviously the best way but I need to keep my piece of mind too. Thanks again for your thoughts.

[VintageVera]

DEAR CHOOK: It sounds like you have more steps to go before you really need to make the decision of sister vs. donated kidney. Your sister may not even be a match. I am not able to put myself exactly in your shoes because my siblings' organs are not an option for me (genetic/family disease) so my options are more limited. If you're going to always feel guilty about using your sister's kidney, don't do it. But perhaps it's possible to approach the situation differently. For example, once on the donor list I will be actually waiting for someone to die and that's not going to be comfortable for me. So in our situations, there is no BEST option, just options on quality of life for both you and your loved ones. BTW, I'm glad to know that you're doing well on PD. VERA

[chook]

Thanks Vera.
No, my sister has not been tested. I'm avoiding that because if she is a match, it will be harder to say no. She is so keen and I am just as reluctant. Her nature makes her a giver - she is always first to jump in and help. And I just don't feel good about the whole thing. Whereas I would have had my hubby's kidney in a heartbeat, but his aren't good enough.
I don't think of being on the waiting list as waiting for someone to die - it is sad that that has to happen for kidneys to be available for transplant but transplants aren't the cause of death. There are other separate reasons for that. I guess if the opportunity arrives for me there will be grief mingled in with the relief of an available kidney, just the same. And if my PD treatment could continue as it is now, there would be no need for this dilemma. And who knows, maybe it will 

[jeannea]

I understand. My sister has also offered. But her one daughter is severely ill with 24 hr nursing at home. She's trying to work and take care of her children. I told her she can't do it. My center is telling me I need to look for a living donor or I could be waiting a long time. I'll stay on PD for a while yet before I let my sister donate. It has to be what you feel comfortable with. Nothing's easy, is it?

[Sax-O-Trix]

It's my understanding that here in the U.S., 60 years of age is on the upper cusp of the age limit to be able to donate.  Is this an issue in Australia?

[chook]

I don't know the answer to that one, Sax-O-Trix. Maybe Richard can tell us. My eldest sister will be 64 next year and her age doesn't seem to be an issue.
Jannea, I can see where you are coming from. Your sister already has a lot to handle - and kudos to her for offering. And while things are going 'okay' for us, it just doesn't sit right. As I said before, I might have a change of heart if I become really ill but will face that if and when it happens.
Thanks for all your responses - it has really helped me feel less concerned that I am making the wrong choice.