Young Prospective Kidney Donor for Mother

[YoungProspectiveDonor]

Hi,

I'm a 31 year old male whose Mom is 62 with ESRD on peritoneal dialysis now approaching three years.  Based on her demographic and blood type, the average wait in our regional area between 2-3 years at least before the new changes went into effect.  Her reactivity panel was 0 and shes generally a good candidate.  It's been a lot of ups and downs over the last 3 years.

We have a surgery date scheduled in less than 2 weeks for me to donate a kidney.  My wife of about 11 years is extremely concerned.  From her perspective, we have the rest of our lives together.  Can I be perfectly healthy over the next 70 years with a single kidney?  Researching, I found there are a lot of possible issues.  livingdonor101.com shed light on a lot of these risks.  Of particular concern is the high blood pressure, loss of adrenal gland function, and the general well-being and longevity of the rest of my life.  This is aside of course the the possible complications that exist within that 0-15% chance.

My mom's spirits are typically wavering on the edge of "ready to call hospice" to "a hope for living."  She still lives at home and still gets around okay, shes just very weak and tired often constantly fending off being sick and so forth.  At this stage, she's convinced a deceased donor would only give her between 4-10 years and believes a living donor is her only shot a decent life.  My research shows the average to be longer with a living donor but definitely also a great possible quality of life with a deceased donor too. 

The doctors and people involved are very optimistic and only mention a small number of risks that are listed on the internet.  They also tend to warn against some of the information on the internet.  She believes I have the best chance of being totally fine, that I only need one kidney, and that I will live a completely healthy life with one kidney.  My research shows this may not be true.  If she had any idea of this, she'd probably not do it and drop into depression.  Part of me just wants to battle the risk, keep her in the dark, and do my best for her to keep a happy life but then I have to think of my wife who is determined to spend the rest of my life with me and heart broken at the idea of me taking on possibly shortening my life.

I feel like my Mom is very, very close on that list based on demographic but I don't know what to do.  My mind tells me I shouldnt do this and that she should wait but my heart wants me to get it over with and give her the best shot at life.  Any advice or thoughts?

Thanks!

[CK]

IMO, livingdonor101 highlights everything bad that is out there, some of which is not necessarily established through good research methods.  Please research all kinds of sites, not just ones that seem dedicated to outing the supposed "conspiracy" to get organs (that may be harsh, but that's my opinion of that site). I think people should be informed, and I'm not naive, but I don't think fear-mongering is helpful.  Most doctors are good people, dedicated to helping others, and would not knowingly sugar-coat the truth just to get an organ for someone else.

It was believed that living donors stay healthier than the general population and that remains true, because we were healthier than the general population to begin with.  Now some studies show that perhaps we do not retain that health in comparison to other people who could have been donors but weren't. Admittedly, I haven't dug deep into that info, but I have one big question ... how can they possibly know that someone COULD have donated many years ago?  I went through a half million dollars' worth of tests to determine I was healthy enough to donate.  Did all of those study participants do that? And the bottom line is:  We still remain healthier than the general population as we age.

Anyway - you have to weigh the risk and benefits.  For me, the immediate benefit of keeping my husband around outweighed the future possibility that I MIGHT get high blood pressure.  I MIGHT get hit by a truck tomorrow, but that doesn't keep me from driving.  I might choke on my food today but that doesn't keep me from eating.  Life is full of risks.  I decided I could not live with myself if I let my husband be on dialysis because I was afraid I MIGHT have health issues in the future.

Again, my humble opinion, but I think some donors attribute every ailment they have to their past donation.  Yes, I'm sometimes tired.  I'm about to turn 50.  I'm in menopause.  I work full-time.  Maybe those factor in?  Truth is, I was often tired before I donated.  I don't mean to minimize risks, because they are out there and you have to decide whether you can live with them.  But please weigh ALL information and do some critical thinking before you decide.

[RKEM]

I would say don't do something like this unless you are absolutely certain. Realistically it amounts to damaging your body in a very significant way. Even with zero complications, your body has to heal and adjust to quite the shock.

I think a lot of the testing (not unimportantly your current kidney function) helps provide comfort that you are indeed strong enough to withstand it. As pro-donation biased as transplant teams may be, there is some research behind who they approve or not. They don't want to end up with two patients with kidney problems.

I am 37 and also waiting for surgery in 9 days and I do have my moments of fear.  When I started this, as part of the process I asked myself those same questions. I know it may sound silly but I did some number crunching to comfort myself. Luckily I don't have renal disease in my family so I felt comfortable with just looking at realistically what would happen to my kidney function as I age, taking into account a decrease each year but also the increased function in the one kidney that seems to happen post donation ... and I calculated how old I would be when my kidney function to get so low that I would need dialysis (assuming being very average, my current age and current GFR). Scientifically this is really flawed but when I came up with a number above 100 years old, it allowed me to put things into perspective.

Yes, this may take years from me, but honestly, I figure that chances are something else will take me out well before that time. And if not, and that's how I go, the cost to me of a few months or years way at the end of my life vs. a much longer period for the recipient when they can still have a family and quality of life, seems worth it. I see more benefits than costs.

All this to say, I think you have to take things into perspective and you have to decide what -for you- is an acceptable risk. Nobody but you can tell you what is an acceptable risk and what is ok for you and your body. If you have doubts, I would wait and think about it some more. It's not a small everyday decision. It is a life changing one. I can't give you advice on the emotional aspect as I am a non-directed donor, but I'd hazard to say that your mother probably wants you to be happy and comfortable with your decision, whatever it is.

For what is worth, my significant other is also worried ... he is supportive based on the fact that in the end, each should choose what they do with their bodies and possibly because he knows how stubborn I am, but I know he would prefer I didn't. I did reassure him however that since I'm much healthier than him and life expectancy for women is higher, chances are I'll still go last ... morbid I know ... but it adds perspective.

[YoungProspectiveDonor]

Thanks for each of your responses.  Holding these two ideas in perpsective, how did waiting list position factor into your decisions?  Suppose there was already about 3 years on a waiting list at a center with average wait time of 3 years or the strong likelihood you could transfer your time to a center with much less wait and get a kidney potentially quicker?  I've read a lot of different stats but is it pretty much guaranteed after 10 years or so, a deceased donor kidney will need a second transplant if it lasts that long?  It seems sort of contradictory to the idea behind recent donor changes that try to match kidneys based on age.

If your potential recipient is in reasonably good health after 3 years on dialysis, am I jumping the gun to take on all this risk and donate now when a deceased donor kidney could be right around the corner?

[sherri]

These are very difficult situations to predict. You can register in one or more region to increase your chances of getting called for a match but you have to be able to show up when they call you, so for some that may be difficult to register in an area that is of great distance.

A lot depends on blood type, PRA (antibodies) to see if you are a suitable match. harder to match people with a higher PRA will earn more points.

I would look into the evidence that deceased donor kidney lasts less than living donor. Is that current based on evidence based medicine and randomly controlled trials? Now that anti rejection meds are better that may not be the case. There are always the anecdotal stories both ways.

so sorry that you have to make these difficult decisions. Family donation is very tough. Feel free to share your thoughts. Best of luck.

Sherri

[CK]

My recipient has never been on dialysis and one of my goals was a preemptive transplant for him, as never having dialysis, or having it for a short period of time, enhances the potential success of a transplant.  Plus, I didn't want the disruption to his and my life that dialysis brings.

I looked at all the available data and decided that I put myself at more risk every time I pull my car out of my driveway than I would do by donating a kidney.  So for me, that meant the only thing stopping me would be FEAR, and fear is never a reason to not do something, at least not for me.  I have not regretted it one bit. My recipient has a full life, good health, we have a great relationship and can be active, hopefully for many more years.  Saving that was worth it for me. 

[Karol]

If she's been on dialysis for 3 years, and the wait time is 2 - 3 years, she may get a call soon for a deceased donor kidney, unless the rule changes have not been factored in. Is this time based on the changes that took effect in Dec. 2014? - here's more info https://www.unos.org/wp-content/uploads/unos/Kidney_Brochure.pdf - people who need a transplant longer or have highly sensitized antibody levels, get priority.
The length of time a person has a transplant is nearly impossible to predict, because they still don't know why some people reject and some don't, but it appears that tissue matching that is most compatible, is key. Having said that, even if you are a very good match, she can still reject after a bad flu or other infection, or her body develops antibodies to your tissue, that cannot be fended off with immunosuppression. There just are no guarantees. Some people get living donor transplants that last 7 years and others get deceased donor kidneys and it lasts 20 years.
Has she not even gotten one call as a back-up? Maybe she could wait. She might get lucky.
Dialysis is not a perfect filter and each year on dialysis is rough on the body (although PD is less stress on the heart than hemo.)
I hope you can decided what to do and feel satisfied with your choice. You need to be very certain that this is something you want to do and are informed (and having support from other family members would help too.)
Good luck!