The ALTOLD study results!! (Assessing Long Term Outcomes after Living Donation)

[ohtobeahayes]

Hi, Everyone!
I haven't been on here in some time!  I'm Nicki. I donated a kidney 10 years ago to someone I didn't know at the time and started the midwest's first kidney chain. I am doing awesome still. My recipient passed away in 2016 after heart surgery. All those years of dialysis did a lot of damage. He did live to meet and be best buddies with his grandson, and by chance he was in my state for the surgery and his children let me come see him and say goodbye- I am thankful forever for that!
Anyway, since then I have participated in the ALTOLD study that the U of M conducted and they are out of funds. Their research over 9 years is complete and I wanted to share with you. I'm sorry if this has already been shared, I didn't even check.
*There were 205 subjects in the study. Here are a few of the interesting highlights.
Between 6 months and 9 years, there was little to no decline in kidney function among donors.  This was a surprise. The controls showed normal decline over time, while after our initial dip in function (due to losing an entire kidney), we rebound, and then pretty much stayed there. Our GFR is lower anyway now, but hovers near 70, generally speaking. The controls started around 95 and at the last study we did averaged 85, and this decline is normal and continues with time.
*Another surprise was blood pressure- it had been believed that donors in general experience a bit higher blood pressure after donation, but it isn't what they saw. Our blood pressures stayed where they had been.
*Urine protein and albumin were the same in donors and controls also, yet another surprise. It was believed ours would increase somewhat, but it didn't, at least over the 9-year study.
*medication use was not different either, in controls nor donors, indicating our health was not compromised by donating.
*signs of diabetes or pre-diabetes such as an increase in fasting glucose, hemoglobin a1c, insulin and lipoprotein concentrations were not different in controls vs donors. There had been some speculation in other, less well controlled studies that indicated that this might be a "thing".  There were no cases of it in this study.
*But-- parathyroid hormone remained slightly higher in donors.  So donors, especially women, should keep an eye on this. And get enough calcium!
*Uric acid remained slightly higher in donors, which can lead to kidney stones and gout.
*homocysteine was also slightly higher in donors.  It WAS believed that this indicated a higher risk of heart disease but recent studies do not support that.
At 6 and 9 years cartoid-femerol pulse wave velocity was not different, but small artery elasticity was lower in donors than controls. More studies are warranted, this states, to determine what effect, if any, donation has on the risk for heart failure and other vascular diseases that may develop as people age.
Statement about overall results:
"Our overall conclusion from the ALTOLD study is that donation appears to be mostly safe and in fact safer than previously believed. However, the persistent changes in parathyroid hormone, uric acid and the possible artery elasticity warrant additional study. Moreover, almost all participants in the ALTOLD study were Caucasian, therefore the results may not apply to African Americans and other non-white ethnic groups. "

So there's that!  I am not on facebook so if you'd like to put this on there, please do! If you want to see a copy of the study letter let me know. It will be published in KIDNEY INTERNATIONAL in the next couple of months!
Nicki

[Michael]

Nicki,

Thanks for being a participant in the study! It is/was the only truly prospective controlled long-term study of living kidney donors.

I'm familiar with the results you shared because I actually bought a copy of the full report, which was published in Kidney International last February. That said, I'm interested in seeing a copy of the letter you received. If you could send a copy to ldomail@livingdonorsonline.org, I'd appreciate it!

By the way, I recently reached out to Dr. Kasiske, the lead researcher, with a few questions and a request -- that he publish the GFR findings by CKD stage -- but he wasn't interested. That's a problem because the report clearly shows there is a notable number of donors with a GFR below 60, which is Stage 3 CKD. (Another recent studied that did show living donor GFR by CKD stage revealed about 30% are at stage 3 or higher.) There are cases of living donors who are at stage 3 (or higher) who otherwise are healthy and have been denied insurance or forced to pay higher premiums. His research might have helped show that such donors are in fact not a higher risk.

So I'm on a mission to see if we -- living donors and the medical community -- can convince the insurance industry to treat living donors differently when evaluating their insurability. Maybe I just need to talk with someone other than Dr. Kasiske.

Thanks again for participating in the study!

[Fr Pat]

Dear Nick,
     Thanks for the info! I posted the reference at the FaceBook page of "Living Kidney Donors Support Group" and have gotten responses already.

[Quilter]

Why wasn’t the study done with participants 20+ years post donation, and over the age of 60.
As we age there is a decline in kidney function when a person has 2 kidneys, so let’s find out about someone that has lived 20+ years on one kidney, and hits that age group.