20 plus years post donation

[lissa]

Was donor for my brother in 1992,laproscopic not an option back then, so my question to anyone with an open nephrectomy, is anyone experiencing issues surrounding donation. I have uncontrolled hypertension, my iron,mag, vit D, and sodium potassium can be such an issue, I have a section of bowel without adequate nerve innervation, these have fluctuated throughout the years and my PCP and  nephrologists are baffled. Looking for any insight, at age 48 the struggle is getting real

[sherri]

Lissa,
So sorry to hear of the long term complications from your donor nephrectomy. It is so important for centers to keep track of donors long term so that potential donors can make an informed decision about donor nephrectomy and of course for transplant surgeons and nephrologists who are consenting these patients have the most accurate and up to date evidence based information. Have you attempted to contact the transplant team at the hospital where you donated? You can ask to speak with the living donor advocate for starters to at least find out where to turn. In addition, there is a contact number at UNOS to report adverse events. If people do report, then they would at least be able to track what others have done and what we can learn.

I hope your a good nephrologist, familiar with kidney donors can offer so advice on controlling your blood pressure. It has been documented that donors are at a slightly higher risk of hypertension and proteinuria over time. As a sibling donor myself, it is concerning because those of us related donors have family history of hypertension, diabetes or glomerular diseases which led to our family recipient's kidney failure.  How has your creatinine and GFR been holding up? Keep searching for a good physician who will be able to keep tabs on your numbers. It may be necessary to go to a large teaching hospital and not just a community doctor.

Keep us posted.

Sherri

[Fr Pat]

     I donated by the open method 13 years ago at age 56 and have not had problems so far. I have taken pretty good care of myself and continue to do a lot of running and swimming at age 69, which is probably helping keep my blood pressure O.K. I have read that some doctors recommend that all kidney donors take supplements of vitamins B12 and D (even if you get sunshine) as there seems to be a tendency for kidney donors to be short of these despite good diet. That's about all I can offer.
     best wishes,
        Fr. Pat

[Katy]

Hi Lissa-

I'm so sorry to hear of your health problems. I'm a little over 19 years post-donation (1996) and like yours, was not laproscopic. I haven't had any acute or chronic health conditions in the past 19 years that could be attributed to donation. Are they positive that your conditions are due to donation?