Not sure what I'm feeling...https://livingdonorsonline.org/ldosmf/Smileys/default

[Bertina]

 I donated a kidney to my older brother last year and I have some weird feelings about it.  I had no issue whatsoever deciding to get tested and was happy that I was a match (a 6 for 6 match whatever that means but it must've been good).  Surgery went great and life is good.  My problem/concern/unease is that people will ask me how my brother is doing and I tell them--"good, I guess".  I don't hear from him at all--except when he needed me to forward him the airfare receipts from when I flew out there to do the testing and donation so he can take it off his taxes.[Oh...he and his wife thought I should consider flying stand-by because it was cheaper.  Really]
He is 14 years older than I am so we weren't close growing up--and we are apparently not close now either--but I'm thinking that if someone gave up a kidney for me, I would show a lot more gratitude. I don't expect to be treated like a queen or anything but jeeze!
 
I just wondered if anyone else has the same kind of feelings.

PS..I know the road goes both ways and I need to call him, too



 

[Fr Pat]

    Dear Bertina,
Hi. I have not been in such a situation, but I just thought that I would pass along two things that I have picked up over the years (11 since I donated) from reading the experience of others.
--- some folks find it easy to be grateful and to express gratitude. Other folks find it very hard to be grateful because they resent (or even hate) the idea of having had do DEPEND on someone else for help. It hurts (insults?) their feeling of independence. Everybody is different. Pat yourself on the back for the gift you gave, and be proud of what you did. What he does is his problem, not your's.
--- some recipients suffer psychological side-effects from the anti-rejection medications. These are usually corrected in the first months after the surgery as the meds are adjusted, but sometimes they can last longer.
        Hope this info may be of some help.
  best wishes,
     Fr. Pat

[MrMike66]

Hi Bertina, 
You are awesome for donating to your brother. However I understand your feelings.  I donated to a stranger going on 8 weeks ago.  I havent heard a single word from her.  I know she has my contact information according to my transplant coordinator.   I have been told its up to her to make the contact.  She has even been encouraged to contact me to provide closure.  I dont want anything more than a simple "Thank you, I am now healthy and enjoying my life."  I have been told by several other donors that they have been treated similarly.   I do find it awkward when people ask how she's doing.  I just shrug my shoulders.  Good as far as I know? 

It never occurred to me what father pat mentioned about side-effects.  I certainly wasnt told about that possibility. 

On most days im pretty happy about my decision.  Occaisonally though I wonder what kind of person is walking around with my kidney. Whats going on in her life?   Couldnt be bothered to send a note, shoot me a quick email? 

I havent mentioned this to anyone that cares about me or supported me.  Thanks for bringing this up.

Mike

[elephant]

Dear Bertina,

I'm grateful for your kindness, and am quite sure that no good work is in vain.  Hang around here a while, I'm sure you will be able to offer valuable insights to others who have similar experiences. 

Love, elephant

[Mizchelle]

I think that the surgery brings up lots of feelings and emotions that we didn't even know we had.

Everyone deals with grief, gratittude etc. differently and some don't know how to deal at all, so they act out in avoidance.  Harder to say than to do but let the thoughts pass but don't take it personally.  Know that you did something wonderful (and you have) and tell yourself that when those feelings arise or think of you're own replacement mantra, thought or behavior until the feeling passes...and it will pass.

[kdub]

Hi Bertina,

You did a very selfless and amazing thing by giving your brother one of your kidneys!  I hope that one day he tells you how much he appreciates your gift.  I have no doubt that he does appreciate you very much!

_kdub

[sherri]

Bertina,

I can understand your thoughts on this subject. I, too donated to my brother but he is 8 years younger; I am the older sister. We weren't close growing up as my sister is 3 years older, and my brothers are 8 and 10 years younger. It was almost like two separate families. I left the house at 18 to go off to college and moved away and my brother's were 8 and 10 years old. I was closer with my sister as sisters tend to be and because we share similar values, kids the same age etc.

When my brother went into kidney failure he called and I specifically remember thinking when I saw his number on my phone, that something must be wrong because it wasn't my birthday or a holiday. He got on the phone without any introduction or anything and just blurted out "my doctor told me I should call my family and ask them for a kidney because I'm in kidney failure". I was shocked. So many thoughts ran through my mind. Another phone call I remember him asking me was if my then 19 and 18 year old daughters would also test for him. It was also assumed that my husband would submit a blood test too. I couldn't believe what I was hearing. I tried to be patient and empathize with his situation. He was a young father who found out he had a glomerular disease kind of by accident. The way I processed it was this. The information he was getting as a recipient was that dialysis is a horrible fate, getting a living donor preferably a sibling, was the best way to go and also best to do it preemptively before dialysis for the best outcome. This is a simple surgery, minimally invasive, donor goes home after 2 days and everyone only needs 1 kidney to live, doesn't cost the donor a penny. So I think that's how he treated it and he, and his doctors, saw me as a treatment for his renal failure (that I believe was overlooked). I think now after 5 years and a little communication he realizes that asking a family member to donate an organ is a big deal. Not that I am looking for thank yous every day but what I was looking for from the medical team and from him, his wife and my parents was a little empathy, respect for my feelings of ambivalence, sensitivity about my anxiety related to an elective surgery especially when kidney disease is in our family now. What I wanted was for them to say, what I am asking is really difficult, even though the doctors describe it as no big deal, and if you don't want to do it , you don't have to. I would probably have done it but the emotional toll would have been easier to bear.

I never anticipated that this would make us closer and it hasn't. We still see each other once or twice a year. Maybe a few more phone calls. I know that he is proud that I did this and he does appreciate my gift. It must be very difficult to be in a position to have to ask and be a recipient.He sometimes shares his lab values with me or tells me his doctor is pleased with his health. He is trying to keep his weight down and be more conscious of his health. I am very proud of his efforts. People ask me all the time how he is and I think to myself, well he hasn't called for another kidney so it must be ok. I hope he never needs another kidney and his perfectly matched (we are also 6/6) will last him as long as it lasted me.

I focus my efforts on reaching out to other donors, recipients and families faced with end organ failure. I find this is more therapeutic than trying to go back in time and change things that I have no control over. You gave a wonderful gift. Welcome to the club.

All the best,

Sherri

[brenda]

Bertina,

I am very sorry you are having this experience. I had a little of it after I donated to a friend,
and I have heard from other donors reporting the same. I think part of it comes from the way the media and medicine describe living donation - as if it is heroic but also completely without life changing effects. Articles in the news and NKF sites reassure potential donors and recipients who are asking for donors that we are fine, that we have no changes in our health, and that we can go right back to work after 2 weeks!  All this serves to decrease recipients' perceptions that there is anything to be grateful about. 

I believe there is a second factor in play as well, something I once heard a recipient describe as the "tyranny of the gift" or the feeling that there is so much to be grateful for that no thanks can ever be enough.  This woman described avoiding her donor on many occasions because even though the donor said nothing, the recipient felt she could never respond with enough appreciation - and she came to resent her donor quite a bit. 

None of this excuses what seems to be rudeness from your brother and his wife.  Unfortunately, people rarely change the way they act.  I hope others treat you gently and with kindness.  You have been very kind and selfless in your actions.

Best wishes,

Brenda
Donated to a friend, 5/17/2011

[kali]

After I donated my kidney to my husband (in June three years ago), for my birthday in August he went to the mall with my daughter and chipped in money with her (she was eight) to buy me a new watch band. That's it. No, I wasn't expecting a huge, elaborate gift, but something wrapped would have been nice.  He was depressed (still is) since the operation.  In fact he is at the doctor's office now, still working out why he can't function at the same level, mentally. He is unemployed, not looking. At the time of the operation, he had a very good job.  Since then, he last lost three in succession.
When I donated, like everyone else, I gave with an open hand, not expecting or looking for gratitude. I don't regret it but I feel like I learn a new lesson in letting go every day.

[sherri]

Kali,

So sorry to hear your husband is having issues with depression after surgery. There are so many psychosocial issues related to transplant and I guess depending on our team of physicians and nurses these may or may not be addressed. The transplant while offered as a treatment is sometimes understood as a cure by patients and their families. At least they expect life to be better not on dialysis and resume enjoying activities and even foods that were previously restricted. Many transplant recipients then have to realize that their life doesn't resume to pre transplant but rather a new normal. I hope you and your husband seek help from a psychologist or social worker to help get him on track and help you as the donor and wife. Perhaps with  therapy and appropriate medication to help with depression things may improve.
Transplant surgery is so much more than a kidney replacement. Wish your husband a full recovery.

Sherri

[Bertina]

Thanks for the responses. It's good to know other people feel the same way. 

[KArchibald]

I appreciate everyone sharing here.  I donated 6 weeks ago to a friend who was not much more than an acquaintance until now.  In fact, I heard he needed a kidney through facebook and responded there.  A friend of his acted as a go-between while I was going through testing - which I really appreciated.  It made it all my decision to keep proceeding with the process and be sure it was right for me.  We finally sat down together and started to really get to know each other when the testing was complete and it was 98% sure that I was going to donate.  But all through this process, and now in the weeks after, I have been acutely aware that there is no precedent in my life for what this relationship is.  It sounds like even the sibling donor/recipient relationship has some of that same element.  If we weren't close beforehand there is still the same effort needed to really get to know each other.  And I think being open and vulnerable enough to be close to someone is one of the most difficult things to do in this life for many people, myself included.  I think I had a bit of expectation that there would immediately be some kind of deep bond that would make communication easy,  but we are not characters on the Lifetime Network...    : ) 

My friend and I had to travel for surgery (UCSF) and he is still in a hotel in SF waiting to get the okay to go home.  He's had rejection drug issues, a stent put in for drainage and this week a UTI.  Basically alone and frustrated.  I went on to do some traveling to see family (Dad turned 95 last month) and tell myself I have no reason to feel guilty that I am not there physically to keep him company, but there it is.   He has not been the one initiating contact with me since surgery, but I'm very aware that that comes from his desire not to ask any more of me.  I'm reaching out and calling/emailing when I feel up to it, but not pressuring myself to emotionally "take care" of him.  I am trying to take care of me and have a renewed sense of gratitude in my life about how healthy I am and hopefully will never take that for granted again. 

Take care of yourself.  You have given what you can and maybe your brother will never be able to express the love and appreciation that your gift represents.  Not being closer to you is really his loss, and I don't mean that in an angry way, just with sadness.  But you can be happy with yourself and the love you shared.  All of us here on this forum definitely appreciate you. 
With love,
Karen

[Snoopy]

Hi, Bertina (and to whomever else this is relevant)....
   There were many excellent responses to your original post.  I, too, congratulate you on your selfless act, and wish you a full, speedy, happy, and fulfilling recovery!
    Beyond what everybody else already wrote, I just want to emphasize that, whether you know it or not, your recipient may not be having such a simple recovery, physically or emotionally.  He might be wrapped up with his own recovery and readjustment.  And, as others have suggested in this and other threads, recipients may be reluctant to tell their donors about their post-transplant difficulties, for various reasons.  In my own case, my non-directed recipient and I did become close friends, talk regularly, and have always shared our lab values, etc.  Yet with all that, I'm never 100% sure if he is leaving out some unpleasant medical news when he talks to me, to spare me (or for any other reason, as is of course his right).  But I do know he has not exactly bounced back physically as well as many others' recipients have. 
   And, beyond questions of the "tyranny of the gift" (it's not easy to thank somebody who donated to help save your life), it is very, very true that there is a lot of white-washing, or at least soft-peddling, of donor risk.  I have definitely seen material encouraging donation that claimed that there was "no risk" to the donor, and it's not surprising to hear that the "system" tells transplant candidates that there's very very little or even no risk to the donor, so why not ask the whole family to come down and get tested? Suffice it to say, that's doing a lot of people a big disservice.
   I hope some of this proves useful to you.  But in the end, you did a beautiful thing, and may that cheer you up!
   Be well, Snoopy