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Ups and Downs.

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Prelude_Sarah:
Today marked two weeks from the day I'll be donating my left kidney to my sister, on May 4th at University hospital in Denver Colorado.  I thought I would have a harder time today, but it turned out to be a great day of personal revelations and a lot of success trying to feel really positive and excited about this experience, instead of afraid and unsure.

I don't know quite how to express this, but I really need to.  My productive day had a little dent in it when I went to visit with my sister for a little while.  I love my sister so much, that's why I'm doing this.  And I understand that she's very sick and is not really acting like herself right now...but she sometimes hurts my feelings by saying things that seem insensitive to me (in regards to the operation, or health issues in general).  I might mention my thoughts or concerns about the surgery or hospital stay for example, and she often has to "correct" me and set me straight about hospitals because apparently I know nothing of the matter.  And it also feels like she tries to down play the donor side of things...I don't know why she would feel any need to do that :( We almost got into an argument tonight over something so stupid.  I just bit my tongue and let her say her piece.  But my feelings are pretty hurt.  I wish that we could feel closer before this operation. 
To be honest, she's acted strange towards me ever since the testing process began.  Has anyone else ever dealt with this kind of awkwardness with their recipient?  I don't know...I'm going to decide to let go of all of those bad feelings and focus on bringing back in the positivity that I felt earlier today...but I do wish things were a little different right now. 

So, nothing urgent to report...but I've come to identify with this forum as a place where I can express myself completely.  As much as my family tries to be there for me, I really can't always be totally honest with them.  So thank you guys, again, for listening to my rants :)

Prelude_Sarah:
And might I add, that I feel awfully selfish complaining about my sister who is so sick...just really need to voice that here, since I can't anywhere else.

PhilHoover:
I'm breathing a prayer for you...I really am...

I am thinking SO many things right now......but know that YOU are being very unselfish and generous.

Much love to you in the days ahead.

Phil Hoover
Chicago

sherri:
Sarah,

Your post brings back so many memories and similar thoughts. I was one of those "reluctant donors" (probably still am). I didn't have those thoughts of "I can't wait to do this", "wow I'm saving my sibling's life" or any thoughts along those lines. Mine mostly were, I must be crazy, I can't believe I am having elective surgery, something horrible will definitely happen to me especially because I don't have those other feelings like a "good donor" should. I sense you may feel some of the sibling guilt I felt (and still feel but it does lessen over time). I certainly wished that my brother and my parents would have said to me, if you don't want to do this its okay you don't have to. This is a really big deal and we know we are asking a lot. It never happened. But it should be in the handbook for family recipients so that family donors don't feel coerced into donation. But will also never happen.

One of the many things I learned about the donation experience is that recipients are desperately seeking a kidney. It is sort of drummed into their head that living donation is the best way to go, deceased donation only a second best, call your family and ask them for a kidney, heck they have two and "only need one", the surgery is minimally invasive, no big deal. I often remind surgeons that when they quote statistics to their patients, it may be 1% or 5% for a complication or death, but when it happens to you it is 100%. So we as donors are nervous, scared, ambivalent and everything else. I may not have wanted the hero status, but I was so looking for compassion and empathy from my recipient. But I think it is too hard for some recipients to be able to give that during this time because they are so focused on getting that kidney they can't even allow any other thoughts to enter. We are so focused on the stresses of the surgery, family dynamics, "baggage", that we have a hard time looking trading places. After the surgery most people will ask how your sister is, they will just assume that you are fine, since you are the healthy sibling, and will assume that the recipient surgery is much harder than the donor surgery. Non related donations will always get a few extra points on the "altruistic scale" than family donations because it makes sense that a "stranger" shouldn't want to do this, but family is expected. I felt very angry that my my brother felt entitled to my kidney and there was an assumption on his part that me my husband and my adult children were just going to be willing to do this without any hesitation just because some doctor told him it was perfectly fine.

Personally I believe that family donation is often harder than non related because you are in a sense "obligated". Yes, there is the medical out to decline, but at the end of the day, we all go home with our relatives and the doctors just file your report in the drawer. Of course you love your sister and that is why you are doing this so as to make her life better, but when it comes down to it,there is a sense of guilt, duty and obligation when it comes to family relationships. There is this concept that I fully understand now, "greater is the one who is obligated than the one who is not obligated". One would have thought that the person who is not obligated in a commandment and does it reaps a greater reward than the one who is obligated. But in reality the conflict is often greater for those who are obligated and step up to the plate, because the one who isn't obligated can always decline or never step up.

I am still coming to terms with being an ambivalent donor. It is three years later. I have worked with a social worker to try and adjust my expectations, work on myself and learn not to be so hard on myself. I still have a ways to go. It has taken some time to forgive myself for not being one of the more gracious donors but I realize now there are many more of us out there and that is ok too. The best gift you can give yourself is to be good to yourself. Try not to have unrealistic expectations. People will most likely act within character. Kidney transplants improve one's kidney function, they are not character makeovers. Look into seeing a social worker or psychologist if you feel like you want some clarity and a safe place to talk. Your insurance may cover mental health services for a reasonable fee. Mine does and it has certainly helped me. I feel happier now three years later and am also working on using my experience to help others. I may not change the entire transplant system but I hope I can help some other families cope with renal disease and the difficult issues surrounding transplant medicine.

Sorry to ramble but your situation really resonates with me. I will be thinking of you on your surgery date and praying for you and your family.

All the best,

Sherri

Michael:
I agree with Sherri's comments. I would add that future recipients are going through a great deal that can affect their frames of mind and their behavior towards the donor. In my experience, I didn't have an understanding of the guilt my sister felt at asking me to undergo surgery on her behalf. She didn't mention it to me until literally a decade later!

So, perhaps your sister is dealing with a high level of emotion and stress, too, and you see it manifested in her behavior. That doesn't invalidate your feelings, but perhaps you could have an open discussion about what you're BOTH feeling right now in the interest of clearing the air and entering the surgical theater with clear consciences and open hearts.

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