Cleared for Donation

[MGKelly]

Hello folks,

New to this forum. Have been floating around for the past few months to get the gist of all the medical tests and screenings used to potentially become a kidney donor. Let me start by introducing myself. I am a 23 year old male that recently was cleared by the transplant team to donate to my older brother. This is his second transplant. My creatinine levels were high, around 1.14, but the nephrologist said it was mostly due to me lifting weights. I have been a natural bodybuilder for about 5 years now. My GFR was in the high 120s also. Now my question is how will living with one kidney at 23 affect me (if any?) I have a feeling the folks at the transplant center are focused on the recipient much more than me. The only time I ever hear from them is when the results are back and they call to schedule any remaining tests. Doctors said my brother has an auto immune disease that killed his kidneys, so I'm very worried about my wellbeing in the future as it may run in our genes. Please share your thoughts and experiences with me. Also if there are any donors around my age I would greatly appreciate you sharing your stories.

[Fr Pat]

Dear MG,
     Hi. Welcome. I donated a kidney 14 years ago, and am doing fine now at age 70, still doing distance running.
     There have not been many long-term follow-up studies of living donors in the U.S. Most hospitals just barely do some check-ups until 2 years after donation, if that. In Europe there have been some (few) really long-term studies of living kidney donors, comparing them not to the general population, but rather to persons of their own age who had passed similar health checks but had not donated. Crunching the numbers did show that kidney donors have a higher rate of kidney and heart problems later in life. (I don't have the exact numbers, nor the study itself. Donors' results were poorer than non-donors to a degree that was noticeable but not terribly worse.) When they further crunched the numbers they found that those who had donated to a blood relative had worse results than those who donated to a non-blood relative or friend or stranger. So the suspicion is that there may be unknown factors in the genes shared by blood relatives that MIGHT produce a greater tendency toward kidney disease or its causes.
     So, there is some risk involved, and each potential donor should take that into consideration.
     There are 2 sites: Livingdonor101,  and: Living Donors Are People Too that give a LOT of emphasis to every possible risk.
     These days a lot more people check in at the FaceBook page of Living Donors On Line rather than here, so you might want to post your message there as well, as you will get more responses and sharing there. You can also learn a lot by reading past postings at this site.
      I hope some of this info helps. I would gladly donate again if I could, but I now know more about the possible risks than I did at the time of my donation.
   best wishes,
      Fr. Pat

[sherri]

MGKelly,

I would recommend for you to discuss the donation process with a nephrologist outside the testing center. You can obtain all your records from the pre transplant testing and see if an independent physician would recommend you as a good candidate. I am not sure which type of auto immune disease your brother has but sometimes some kidney diseases that effect the kidneys are genetic (like PKD, polycystic kidney disease) and others may be familial. Some other conditions like high blood pressure and diabetes are more prevalent in certain populations or within families so it may be helpful to have someone independent of the transplant center look over your records.

It is not uncommon for family members to be wary about donating since related donors share the same or similar genetics as their recipients. That's what makes siblings "good" donors. There is no reason why you shouldn't seek a second opinion. If you were having a medically needed surgery it is often recommended to see another physician so no reason why you shouldn't do it for a donation surgery.

If you have not been informed by the medical team about the risks of the surgery then you need to start making a list of questions. Find out how many surgeries they perform, meet with your surgeon, discuss any concerns you have. Meet with the nephrologist who will be responsible for you.What happens if there are any complications. Ask about the types of complications that may occur, such as bleeding, infection, blood clots (with any surgery), testicular swelling (see posts on this board). Find out if there are any genetic tests that can determine if you also have a similar condition as you brother. It would be good for you to have someone else with you who will be helping you through the surgery and recovery. It is hard to digest all the information and another pair of ears is always helpful. There should also be a separate living donor advocate at each transplant center. This person's job is to make sure that the donor's interests are protected. So you can ask to speak with your advocate if you have not yet met him/her. This is separate from the coordinator.

Good luck with the process. And keep us posted.

Sherri

[MGKelly]

Thank you Father Pat and Sherri for your input. While I'm concerned for my brothers wellbeing and health, I also have to keep my own health above all else. What I don't understand is how the doctors would just label me a perfect match, knowing very well that kidney disease could run in our genes. High blood pressure and diabetes is very much present on my fathers side. He suffers from both and had a history of kidney stones. This is all too much for me to be very worried. But I have my faith in the lord and the physicians that they come to the best conclusion and that ill be fine for however long I live. I will definitely keep you all posted.