New here, have a few questions

[donorswife]

Hi! I'm new here. My husband is set to donate his kidney to his brother soon, and I have a few questions/concerns...

First, I will say that my husband is rather anxious about donating. He is doing it because he doesn't want his brother to suffer, and couldn't imagine saying no, but at the same time, he is not feeling any sort of "joy" (if that's the right word) about it - more like a grim determination/acceptance that he's doing what needs to be done. Is this normal? Other donors we've talked to don't express this feeling, so I'm concerned that this will cause depression or other issues post-donation. 

Second, all of his labs came back within normal, but some just barely so - both his blood pressure and blood sugar were on the highest range allowed, which concerns me. Both diabetes and high blood pressure run in his family, and I know the chances of both increase after donation as well. I sort of feel like the donation team is looking out for the recipient's health over the possible health implications for my husband.

I personally am struggling with the decision. I support my husband 100%, but am nervous about what the future holds. He is young and healthy, we have a wonderful marriage and several children, and I'm afraid something will go wrong or that his mental outlook or physical abilities will be forever changed.  I feel terribly selfish saying that, as my brother in law is in such need, but I wanted to be honest. 

Anyway, I'm hoping to get some reassurance or insight from others who have been down this path. Thank you so much!

[elephant]

Dear wife,

I donated in 2011 to my father.  We're both doing fine today.  The donation had no long term impact on my health or mental well being.  Well, except I'm very grateful and happy for the additional years spent with my healthy Daddy.   I can run ten miles and pick up well over 200 pounds off the floor, which is ok for a 50 year old woman!  There is a recovery period,  which varies individually.  I was out of work for just over three weeks, and could have used one more week.  I was back to running within two weeks. 

I think it is important for every person, donors or not, to monitor their weight, blood pressure and blood sugar.  In many cases, we have the ability to improve and maintain our own health through good diet and exercise habits.  Neither of my brothers were eligible candidates for donation, since they are both obese and were pre-diabetic.  Both of them became fully diabetic since 2011.  So yes, diabetes does 'run in' my family.  However, my blood sugar is always normal, and I work hard to maintain a healthy weight.

If your husband does not want to donate, the team will exclude him.  No one is EVER coerced into donating against their will.  The recipient will NOT be informed that the donor chose to withdraw.  Your husband should consult with the social worker and psychologist on the donation team.

If he is concerned about depression, or high blood sugar, or high blood pressure, I'd suggest he gets medical care now and continue whether he donates or not.  He can consult with an independent psychiatrist, endocrinologist, or cardiologist during the evaluation period. 
 
love, elephant

[sherri]

Hello Donorswife,

If it makes you feel any better, I am/was one of those reluctant and ambivalent donors. I donated to my brother in 2007. He was 36 at the time and I was 44. He suffers from Iga nephropathy, an auto immune disease that attacked his kidneys. My other brother had borderline labs and was not eligible to test and my sister was not the same blood type. We were a 6/6 match so I felt like I could not donate. He would never get as a good of a match as he has with me. That being said, family donors and siblings in particular have a unique relationship. We often bring a lot of baggage to the table. Sometimes it's not even about the kidney but lots of other things that have been under control all the years. When a crisis hits some of that baggage "gets unpacked".

Another issue about family donors is that we do share a genetic make up, family health history etc. That's what often makes us a good donor choice in terms of matching. So it is scary to give up half your nephrons when you also have a family history of the diabetes and high blood pressure which often put the recipient in kidney failure to begin with.

What I can suggest that was helpful for me was to meet with a social worker to have a safe place to vent and express myself. I knew I had to do this, but what I wanted was for my advocates to say, yest this is a hard thing to do, but we will help you through it . I wanted to stop hearing about how you only need one kidney to exist and how easy the surgery. This of course, was coming from people with two kidneys!

The transplant center is going to be looking out for the recipient and try to get as good a match as possible. I think providers and sometimes the recipients themselves, have a sense of entitlement to the family kidney. The assumption is that everyone would want to do this. The surgery is painted as minimally invasive, no cost to the donor, go home after two days, everyone only needs one kidney (even call it a spare). So you really need to have someone who will advocate for you both emotionally and medically.

The other suggestion, is given the borderline labs, I would have your husband see an independent nephrologist to review all the testing, the labs, maybe get a 24 hour blood pressure, and see if he would be a good candidate to donate given his family history. And if he is not, then there may be others, even non related who would make a better candidate both physically and emotionally.

There is a nice book out there called The Reluctant Donor by Suzanne Ruff. Talks about family donation in a very honest and real way.

Whatever the decision, I hope all goes well. Wishing you and your family all the best.

Sherri

[RKEM]

I second the suggestion for an independent evaluation, by someone who doesn't have an interest in mind beside your husband's. With diabetes and blood pressure, it is certainly a concern I would have. I would also ask for more explanation on his lab results, what do the numbers really mean? That was something that frustrated me in my process. I didn't want to know my results were "good" I wanted to know the numbers, how I could expect them to decline and then increase again because having an something at the low end of normal is not the same as being at the top end ... and when I got those explanations, it helped me a lot.

I would also talk with the social worker and the psychiatrist about his anxieties about donating. It's a no return choice, it's a big decision and no matter what entitlement people may feel or how "easy" the surgery is painted to be, it is a bit  suspicious that most member of the transplant team have two kidneys ;P ... giving up a major organ is a big deal. It's a risk, and a calculated one, but still a risk. You shouldn't do it if you have doubts.

I got a great experience and for me it was easy, but honestly, if I had had diabetes or high blood pressure in my family, my decision would have been different. Having children is also a big deal. So I would think long and hard and I hope your husband feels supported (he will no doubt by you) if he changes his mind. Just being evaluated is a proof of altruism. Its not for everybody and you shouldn't make a decision you may regret. I'm pretty sure the donor team can come up with a a reason to disqualify your husband if needed, without it seeming like he just "backed out". That's a very important thing and honestly, better be honest about his feelings now than have it all blow over on the morning of surgery. Its ok to be selfish about one's body and health.

[CK]

I didn't have any "joy" at donating - I suspect that emotion is more common to altruistic donors, who have thought about it and made it a goal, vs. those of us who donated because someone we loved needed it.  I donated to my husband, before we were married.  I thought it through and realized that there was no way I was going to watch him suffer if I was a match, and I was.  But I never felt joyful.  Just a lot of fear and, as you said, acceptance that it needed to be done.  That was almost 4 years ago and we are both doing well.  I'm glad I did it, but I was by no means thrilled at the time.  I just kept telling myself that someday it would seem like it happened a long time ago, and now, I am there.

High blood pressure is certainly a risk after donation, but I've never heard that diabetes is (just that getting diabetes would be especially bad with one kidney).  You don't say how old your husband is - but it certainly can't hurt to get another evaluation.  I don't personally believe they care only about the recipient's health and outcome, I never felt that way for a minute during my testing - but again, if it would make you both feel better, another eval would be good.

In the end, honestly - we all do far riskier things every day that we just take for granted: driving a car, for one.  His risk of death in a car accident is far greater than the risk of donating a kidney.  At least that's how I came to think of it, and it made sense to me.  Truth is, as we get older, we have to take better care of ourselves no matter how many kidneys we have, if we want to live a long and healthy life.

I'm certainly grateful now for my husband's health, and I don't miss the kidney one bit.