In the home stretch but I still have many concerns.......

[mkew]

I've been going through the evaluation process through UCLA since around October 2012. I'm being evaluated to be part of a paired donation to a 50yo friend who has PKD and has just started dialysis. I had the CT scan and the rest of the workup. The only issue they've found is repeated hematuria, trace blood in the urine. They won't clear me as a donor until we figure out why, which is good.

This week I will have a cystoscopy to find out why I keep showing up with traces of blood in my urine. If anyone has experience with this procedure I would really appreciate hearing about it!

My second concern is regarding the adrenals. I'm nervous about the adrenals because I have been perimenopausal for years, and over the past month or so I've been dealing with as much as a dozen hot flashes a day. They're driving me crazy. I've considered hormone therapy, specifically a low-dose birth control pill, but they've said not to start on it until after the surgery due to the risk of blood clots. Does anyone have experience donating during their menopausal years? I would love to hear some experiences of this.

Also, I've already been told that they would plan to remove the left kidney. But I keep reading that removal of the right kidney would preclude any such problems. Any info/experience about this?

As much as I really want to help my friend I have to be honest and say I'm feeling nervous. I've gone through a lot to get to this point, including a trip to California (at my friend's expense) to the transplant center for evaluation. I've been looking at Living Donation 101 which has been scaring me some. It seems that if you are well educated and outspoken about self-advocacy (which I am), the outcome should be good. However, I can't help but be nervous about the apparent lack of long-term studies of the impact of donation many years later.

I believe that if the cystoscopy comes up normal, I will then be cleared for takeoff. If there are still questions, then I believe the transplant center won't clear me unless I have a kidney biopsy, in which case I will probably halt the whole thing. There's just so far I'm willing to go as far as invasive procedures just to be cleared as a donor.

Overall I have no history of any health problems at all, so I should be a good candidate. But I am nervous about bringing health problems onto myself by doing this.

Any words of wisdom and/or encouragement?

[sherri]

Mkew,.

Congratulations on educating yourself about living kidney donation. you are correct to be concerned about future health complications. There hasn't been much in long term follow up of kidney donors. Most research is retrospective and some data may be missing about complications years out related to donors.

You may want to seek a second opinion from a good nephrologist to evaluate you independent of the transplant hospital. Get copies of all your labs and testing. You can also discuss this with your primary care doctor. If you are concerned about hormonal issues speak with your gyn and or an endocrinologist and get their input into how safe this elective surgery will be for you. If you were having any other type of surgery you would most likely seek a second opinion, how much more so this is needed when the surgery does not benefit you physically and may put you at risk.

In terms of the cystoscopy, I've never had one but you can look online for information. My husband had one many years ago and he said it wasn't pleasant but they do sedate you and you have little recollection or discomfort. I imagine similar to a colonoscopy with sedation. Here is a link http://kidney.niddk.nih.gov/kudiseases/pubs/cystoscopy/

Most important make sure your kidney function is good enough to tolerate and compensate for losing 50% of your nephrons (the cells that filter in the kidney). Each center has their own criteria and unfortunately there are no federal guidelines that are enforced among all transplant centers. Make sure you know what your numbers related to kidney function and discuss this with a competent kidney specialist who has your interests in mind.



In terms of which kidney is removed. Most often the left is removed because of a longer renal vein which is beneficial to the recipient during the transplant. If the donor has one kidney that has a cyst or difficult vasculature, or one has higher function than the other (they are not always 50/50 and there are tests for that as well) then the donor always keeps the kidney with better function or quality. So sometimes they may take the right one.

Keep in mind any financial issues, health insurance, time off from work, recuperation, family support and all the other psychosocial issues that come into play.

Glad to hear you are thinking about this carefully. Keep researching and learning and feel free to share what you find.

Best of luck,

Sherri

[sloaner1982]

I have to say that I am very pleased with everything that Sherri has told you. I can not go back in time and change what happened to me. Sherri is absolutely correct when saying that you should get a copy of all your labs and reports pre-donation and have them sit down and explain what each and every test means. I was told that all my testing was good- great- no problems. There were some red flags in my testing that I was never told about. number 1: my creatnine clearance test came back in the "H" range. 2. GFR was 60 at time my left kidney was removed. These are just to name a couple. But even more so was the lack of informed consent I was given. There was soooo much I did not know had I known about I would not have donated. Most of all- think about your health first and think about your family first. You are just as important to your own family as the recipient is to their family. You did not cause your friends illness and you should not feel guilty if you decide that donation is not best for you. I will say that because of the lack of adequate reliable information regarding longterm health of donors- among many other things, I will never be able to tell anyone to share their spare. Because in reality, we don't know for sure that we really do have a spare. One thing I was not told before donation is that our GFR decreases as we age. If we give up any reserve we may have- where does that leave us? I experienced SEVERE hormonal imbalances after they took my kidney. Others will say they never had any problems at all. There is so much I could say and believe I have already talked in detail on another subject post about some of the things that I experienced after my kidney was removed. I do want to end by saying that the things I have found out after the transplant I was a part of have me so upset at times because I did not know. I often feel so decieved and used as an experiment. One thing that I know for sure, knowing all that I know now that I did not know then- Is that I will not allow ANYONE to become a living donor for me if I myself end up in kidney failure and I hope and pray every day that I do not. My GFR is now stage 3 CKD.