Newbie possible kidney donor

[veganmartin]

Hi everyone! I'm so thankful for this message board, as I've been "lurking" for a couple months now and decided to post. I started the process of testing to be a kidney donor for my cousin's husband back in the beginning of March of this year. I looked into non-directive kidney donation a couple years ago and for some reason, didn't pursue it. So, when I was told by my sister that she read a post on FaceBook from my cousin that her husband would need a transplant, or would need to go on dialysis, I immediately made the call to the transplant center. I'm pretty advanced in the process - have had both the 24-hour urine done (my eGFR was 67 the first test and even lower this last time - but, I was told not to worry about it, all of my other kidney values were fine), blood testing, chest x-ray and EKG (abnormal EKG, but had a stress echo done this morning and it just showed mild mitral valve regurgitation and tricuspid regurgitation). I only have to have a renal flow scan done (they don't normally do this for donors, but since my eGFR was low, they want to do this) and the CT angiogram. I'm a 35 year old female with some very minor health issues (hypothyroid - Hashimoto's and fibromyalgia), but in generally good health. I have not told my parents yet, as my mother tends to worry quite a bit and I wanted to be sure I was healthy enough before I told her (so she didn't have to spend all of this time I've been waiting/testing in a state of worry). Now that the echo has come back okay, I will be telling her. I also didn't share that I'm going through this process with my cousin or her husband (the recipient), as I didn't want to get their hopes up. My biggest concern is that I've never had surgery (therefore, never been under general anesthesia). I'm slightly anemic (possibly b/c I'm a vegan, but I'm trying to add more plant-based foods that are rich in iron into my diet now that the blood work came back showing this), so I'm also worried about excessive bleeding during the surgery. Basically, it's the fear of the unknown, but I've thought very long and hard on this decision and I don't ever make major decisions like this without doing my research and thinking and meditating on it. I'm also very worried about post-op pain and healing (since I have fibromyalgia, I have a very low pain tolerance and do not heal as well as most other people).

I wanted to say hello to all of you and wish you all the best on your continued health. Any advice anyone can give me would be very helpful. Thank you all again! 

[sherri]

Welcome to the forum. This is certainly a great place to get started thinking about donation. Most importantly throughout the evaluation process it is important that you get accurate information about the risks of the surgery physically, emotionally and financially and any effects this elective surgery might have to you personally (not just the overall statistics that most donors do not have any adverse outcomes). Since you did have some indication about possible low GFR and perhaps some cardiac issues or potential cardiac issues this might be something you would want to explore outside the transplant hospital. You could go to your personal physician with all the results of your testing (just get copies from medical records at the hospital) and you can discuss your concerns with him/her. You could also get a recommendation for a nephrologist who does not have any connection with the hospital or with the recipient. You mentioned that you have fibromyalgia. I don't know if you see a rheumatologist for this but you could also speak to them about dealing with pain and not being able to use anti inflammatories on a regular basis once you lose one kidney. In terms of the nutrition speak to your doctor about diet and how a lone kidney status might influence this as well as the thyroid issue.

Sounds like you are thinking this over and taking the time to evaluate without having the pressure of the recipient and their family know about your intentions. this will give you an opportunity to think this through. Whether you ultimately are able to and agree to donate it is wonderful that you have given donation this much attention.

Keep us posted and good luck with the rest of the testing. It is a long process but remember it is elective surgery so take your time.

Sherri

[veganmartin]

Thank you, Sherri. The stress echo was done at an outside cardiologist's office (actually, by a friend of mine who is a female cardiologist who specializes in female cardiac health). I do not see a rhume for my fibro, and am not currently on any medication for it (although I once was, but after adopting a plant-based diet, my chronic pain has really improved). I have an appointment next week with my primary physician and he has the results of everything (he'll have my stress echo results by then as well) and he's really good about going through everything and spending the time to talk things through. I'll talk to my primary about maybe seeing a nephrologist that is outside of the transplant hospital (I'm in Buffalo, NY), as I think that's a great idea. I've been told that the renal flow scan can give a more accurate picture of what is actually my renal flow, rather than using the eGFR alone.

Lastly, that is another reason why I haven't told many people (including my mother and the recipient) - I want to be sure that this is my decision and I don't want to be swayed one way or another (not that either of the parties would consciously do that). I tend to really really seek opinions from others in life and "do as I'm told" (in a sense), so this is especially important to me to make this decision on my own. Thank you for reminding me that this is a truly elective surgery, with risks, and it should not be rushed.

Thank you!

[dodger]

I think Sherri gave you very sound advise.  I would again stress that you will not be able to use nsaids for pain in your future or at least very limited.  You have your pain under control now, but what about 20 years from now.  I think what you are offering to do is wonderful, but, you really need to consider your long term health issues very strongly before moving forward much further.  Your issues are not going to go away, they will progress with time.  When you are 70 will you be able to make the same decision knowing your health issues. 

I'm not trying to rain on your parade, but this is a very serious matter in that you need to put yourself first here.  Please don't get caught up in the "but I've come so far in testing to give up now" mentality.  He can go on dyalisis for awhile and be fine, you need to perhaps take a step back for now.  You also had a very low Gfr.  There was someone else on here not long ago that had an 80 at the time of donation and is still at 40 several years later.  They did not gain any additional GfR like they tell you should and is now very worried and wishes they had never done the donation now knowing what they know, and shame on the donation center for accepting them.

As has been said here before, the donor is looked at as a treatment for the recipient, when they are done with you they are done, but they follow up forever with the recipient.  You don't want to end up being a recipient yourself, trust me.

Sorry if I sound harsh, but, if someone doesn't who will.  Think long and hard, I think Sherri was being nice.  Janice

[veganmartin]

Thank you very much for your honesty. When I've questioned my eGFR, I was told that it's just a calculation and the formula isn't always applicable to young females, which is why they do the flow scan. But, talking to my PMD next week and getting another opinion from an outside nephrologist is important.

Yes, I do not (absolutely) want to regret my decision (I actually just read that person's post with the low eGFR now) years down the road and don't want to get caught up in the "warm and fuzzy" feeling of kidney donation. I need to protect myself.

Thank you all very much. I will keep you posted!

[veganmartin]

I wanted to update this thread. After reading some more about eGFR, I looked at my Creatinine Clearance and it's 78.5, but isn't marked as "low" on my lab results. This was the first 24 hr collection. I emailed the donor coordinator last night and asked her to send me my last 24 hr collection/blood work results so I can have the exact numbers. I looked at my BUN - it was low (which is better than high, I believe) - at 7. Is there anything else I should look @ on my labs to indicate kidney function? Also, does anyone know if a renal flow scan can give a better indication of my kidney function? Thank you!

[sherri]

Janice,

Thanks for the feedback on my advice "Think long and hard, I think Sherri was being nice.". I try to stay balanced and present the multi faceted sides of donation. I also try not to let my personal experience color other people's decision. Everyone comes with their own reasons for donating and I try not to judge.  My goal is to try and support potential donors and donors and their families with whatever their decision and encourage education and unbiased medical opinions. Most importantly donors and recipients need to try and think ahead and the global picture of how an elective surgery will impact the donor and their family and use all the resources available not just the ones offered by the transplant center. I'm glad I'm on the right track. Thanks.

Sherri

[dodger]

veganmartin, I really think you should contact your own neuphologist at this point and get a truly unbiased professional opinion.  They may even want to run independent tests again which your insurance will probably pay for as well as all the other testing is on the recipients as of now.  We can make statements which may be very well informed, but this is your health and well being hanging in the balance.  Please consult with a doctor of YOUR choice on this matter.  Please stay in touch, we will all be very interested in the future testing and results.  Best wishes, really,  Janice

[WilliamLFreeman]

Veganmartin,

To answer the last 2 questions you asked.
      1]   "Proteinuria" is another indicator of kidney function.  It generally is either any protein in the UA [urinalysis] by dipstick, or an above normal amount in your 24 hour urine collection for creatinine clearance [if that test was ordered].  Proteinuria indicates possible kidney disease.  I assume you do not have that problem, otherwise the transplant center would probably have mentioned it.  You can also check your lab results.
      2]   "Renal scan" is a general term that can mean several different tests.  (You can ask your center what test they mean.)  I assume your center means an Iothalamate test (or similar test) that is an accurate measure of GFR.  Yes, that scan is more accurate than a 24 hour creatinine clearance, that in turn is more accurate than the "eGFR" [GFR estimated from a blood test] when the 24 hour test is done under the best conditions.

Why should a donor's GFR be above a minimum number?  Two reasons.  A]  The future health of the donor after donation.  The kidney remaining in the donor compensates somewhat for the loss of its partner kidney by increasing its own GFR [= Glomerular Filtration Rate].  But it can do so only to a certain point, usually reaching 65% to 75% in most donors of what their GFR had been with 2 kidneys.  Although some centers accept donors with a GFR as low as 80, some require that the GFR be higher, especially if the donor is young, as you are.  A donor with a pre-donation GFR of 81 would end up post-donation GFR of 53-61 -- the lower part of that range being lower than most centers would accept as "minimizing harm" to a young donor.  B]  The health of the recipient.  The transplanted kidney in the recipient could compensate only as high as the remaining kidney in the donor -- and often only to a yet lower level for several reasons.  First, if the donor's two kidneys have unequal GFR between them, many centers take the kidney with the lower function, so that the donor's health is harmed the least.  Second, the medicines used to prevent rejection impair kidney function to varying degrees.  There are other reasons, too.  Bottom line:  most centers are careful to put the donor at risk only when the likely outcome is low enough harm to the donor and high enough benefit to the recipient.

Both Sherri's and Janice's replies indicate that they were concerned about your GFR.  I am, too.  I agree with both as well: discuss your results with your PMD and also with an independent nephrologist she or he recommends.  Because eGFRs and even 24 hour creatinine clearances are sometime inaccurate -- either higher or lower than "true GFR" -- it is possible the results of an Iothalamate scan (or similar test) will show that your GFR is high enough to do what you want to do, i.e., donate.  

All the best to you and your-brother-in-law.  

B

[veganmartin]

Thank you very much for the detailed information. I'm meeting with my primary on Tuesday morning to review all of the results. I just rec'd my latest labs from 4/27 and my creatitine clearance went up to 93.2. I will also inquire with the donation center on what exact type of renal flow scan will be performed. Thank you again!