Disappointed

[kmheiges]

Just got news yesterday that they found someone else to donate to the person I was supposed to donate to. They chose this person because they can donate sooner that I can. I am really happy that he is getting a kidney sooner than expected, and I know that this is best for his health. I am upset that I won't get to donate, but I know that his health is what is important. The thing is, I still want to donate but my parents are completely against me doing non-directed donation. I guess they don't think I should do it if I don't know the person (although I didn't personally know the other person either). I want to start a kidney chain but I know it will be hard without my parents support.

I guess my main problem is that in a weird way I'm kind of "mourning" the fact that I can't donate now. I know it sounds ridiculous, but I'm really upset with it. All my parents and boyfriends parents say is that they're glad I won't be donating now. They are really happy about it, and I am the complete opposite. It's just really frustrating right now, because I am upset and nobody else really understands it. I didn't know who I could talk to, but then I remembered this forum and just really hope that you guys can give some advice/support that nobody else is willing to give. Sorry if this sounds ridiculous and maybe I'm completely out of line for feeling this way, but I am really surprised by how upset I am about this.

[Fr Pat]

     You might perhaps try providing your parents with more information about non-directed donation and donor chains? You might print out for them some of the stories/postings here, or look into www.kidneyregistry.org? Perhaps if they understood it more they might be more supportive?
    Fr. Pat

[Karol]

We are still looking for a donor. So are many other people. I know it's hard for your family but that's because they are worried about your taking a risk when it's no one you know. I hope you'll share our video with them, maybe it will help them to see it from the perspective of the recipient, but also from the living donor. http://youtu.be/D9ZuVJ_s80Y

I think if it is meant to be, it will happen. Sorry it didn't work out this time.

[elephant]

Dear kmheiges,

I think everyone here will understand how you are feeling.  You've invested yourself emotionally in this process.

I told the transplant team if my recipient was not able to have the surgery that I would consider continuing as a non-directed donor.  Fortunately the donation was completed, and he's doing well.

I admire your enthusiasm but would encourage patience.  There is no rush to donate now and you can make the best possible decision about it over time. 

Love, elephant

[tjhurley]

I do understand your feelings! I  thought I would be the first donor in my family for 2 years. After we did the match testing (the doctors happily tested all 4 of us at once in case one of us matched the other better. The matching was the same as our sons were a 6 point match to each other with the same blood type.

My husband had always had a healthy fear of surgery so I was sure I would go first. I was all mentally prepared and eager. After the results came back the boys both came home on the same weekend. My husband surprised me by laying out a rational argument as to why he should go first. When he finished the boys looked at me and all I had was a weak "well I just thought I would go first".

I was really upset for a long time. But it was a good rational decision. Seven years later I donated to our younger son.

One of their uncles was upset that he hadn't been tested as a match either time. He had the same feelings and felt left out of things. Since he is 6 years younger than me, the rational decision was for me to go next. My sons are now in their early 30's- with transplants not lasting forever- his opportunity will come soon enough.

All those emotions! Take care of yourself and be patient as they recede, Janet

[treehugger]

A friend of mine was the first person to offer to get tested when we realized my husband would need a kidney. She filled out the initial paperwork with UCSF. There were many delays (Blue Cross wouldn't pay for donor testing until my husband went on dialysis) and then eventually it worked out that I could donate through a paired exchange.

Well, that friend is such an amazing, giving person, that she decided she still wanted to donate to *someone, anyone*. So, she recontacted UCSF and told them to match her up with a recipient. She assumed she would start a chain, but then they found her a match. A single recipient who had been on the deceased donor list for years, dialysis for 10, and everyone thought she would never find a match because of some particular health issue. Well, my friend was the perfect match for her, and the transplant successfully happened almost 2 years ago.

So, rest assured we do understand your feelings of disappointment at not being the one to donate. I shared this story to let you know that this doesn't have to be the end for you, if you don't want it to be.

Cheers,

Kara

[kmheiges]

Thanks everyone. When I first started the evaluation process I sent my family a ton of different website links and showed them where they could get their questions answered. However, they are still worried about problems I may run into in the future. I told my transplant coordinator that I would be interested in starting a chain, and she passed that on to the person in charge of setting that up at the U of MN. I guess I'm just going to wait and see what they say, and hopefully my parents will eventually come around to the idea. I know if they don't I still have a lot of friends who are supportive, so I know that it would still be okay.

[jstx]

I also know how you feel. I learned about kidney donation through a friend with PKD. She told me she'd have to start looking for a donor and I offered to get tested. I was so excited and did tons of research. My blood type is AB so I'd told her that early on (I can only donate to other AB folks-unless they do plasmapheresis (?) to desensitize the recipient). My friend said she was a universal recipient (meaning she is also AB). I was thrilled & just knew this was meant to be. I researched, asked questions, talked to my personal doc who gave me the go ahead. My family was concerned but supportive. They did think me a bit crazy (but that's nothing new!) but understood my desire to help my friend. Then about 6 months later my friend found out her blood type is actually B. I was so sad because I'd prepared myself mentally & emotionally for this and was so excited to help. I told her I'd do a paired exchange if necessary. I prayed about it and did some soul searching....and was impatient....and decided I'd check out the forum here on LDO where people post if they need a donor. I searched AB & found someone who's story touched me. Drafted an email to him but let it sit because I wanted to be sure of this before I offered to get tested for him. My family really was NOT thrilled I wanted to donate to a stranger, thought me even more crazy, but supported me. Well, we were a match & he has had Lefty since June 2011. My mom & sister traveled to be with me and got to meet him & his family. They are such nice people & this gift has so impacted their lives. At one point my mom told me that she didn't understand at first why I wanted to do this, but after all was said and done she saw it and came away thinking, "wow, I could do that!" I knew that she'd "gotten it".

All this to say, I know how you feel. It's like we understand what an impact this can make for someone else & have that desire to help while our families aren't quite as sure & are concerned for our safety & well being. I think it is much harder to watch a loved one go through this than to actually be the one going through the testing. It sounds like you've taken the first step in contacting the center & I pray that if it works out, your family will get on board. It's not impossible, but is VERY hard if you go through this without the support of those closest to you.