For those who struggle about being a donor...

[okarol]

This is an interesting post from a member on Living Donors Online:

"For those who struggle about being a donor..."
 
     I just reread the letter I wrote to my brother about why it took me so long to be considered as a donor--and which he posted on his caringbridge site. I am posting it here in case it helps someone else realize that others struggle with the decision...in my case, a lot! A year ago, I would have said I was less than 5% likely to be a donor. Now, our operations are scheduled for April 10.

Lisa
Planning to be an April 10, 2009 donor!

Dear George,
I think it is time to consider posting something to Caringbridge--if you want, post this letter.
I would like to tell people that I am taking the steps necessary to become your kidney donor. But I also want to explain what has happened to me over the past year + in this decision process, and why it has taken me this long to respond. If for any reason I cannot be a donor, I hope that another person might realize that the speed with which we act is not the question (I hope)--it is whether we ultimately decide to do what we should. Maybe if I can't be a donor for you (which seems highly unlikely at this point), perhaps someone else will follow in my slow but sure footsteps. Or maybe my experience will help provide another person with a donor in the future.
In the past year, I have had lots of reasons why I could not step up as a kidney donor. Granted, some were pretty solid reasons--I had just finished law school and passed the bar, we moved this year, I have kids in college, I have begun a solo practice of law representing (primarily) kids as a guardian ad litem. Solid reasons, but the truth be known, I am a person who gave birth naturally to avoid epidural needles. I would never "elect" to have surgery. I am a full-fledged chicken.
I found out my blood type nearly a year ago. O+. I hid it like a buried treasure rather than telling family members--especially George and my mother--that I was the key...that my blood type is exactly what George needed--and still needs. Another friend-donor stepped up to help George and I felt like I was off the hook, but every day I agonized over my inability to admit my blood type. We moved, I worked, and all the while, I agonized. Not long ago, I began admitting to myself, to Dan, to our kids, and to a few close friends that I was not sure about my silence. The more I talked, the more I knew I needed to speak up.
Mid-week last week, I sent in the "tissue matching lab kit"--this was step 3 in the donor process for me. #1 is the blood type, #2 was a long questionnaire sent to Florida Hospital, and #3 was the tissue kit (I think I made up the actual name of this box of vials). Today, I found out that on all the tests (blood, tissue and cross match), I am an appropriate donor for George. The next steps are to figure out whether my health is good enough to be a donor--EKGs, blood tests, a pap smear, a mammogram, you name it, they will check it. If my health is great--I face surgery. If my health is bad, no deal. It seems ironic that good health means surgery. I have scheduled those medical appointments...and now we wait. George in dialysis, me in my everyday life.
If I am healthy enough (which I think I am), George has a donor. If I am not, maybe coming out of my silence will help George's efforts toward a transplant. We should know one way or another soon....
George, I apologize for not being quick in my decision-making. But I am happy to have reached this point--
Love, Lisa

[paris]

This is a powerful letter.  She was so honest and open.  It is probably the hardest decision one will ever make; to be a living donor.  Thank you for sharing it with us.  I'll keep them in my prayers April 10th.

[Beth35]

That was a very moving letter.  You know, no one in my family stepped up to be a donor.  My mom was not a match.  If she were, I know she would have.  And honestly, I don't know if I could have accepted a kidney from a close family member because I was so scared that something may happen to them because they were trying to help me.  But the other part of me feels kind of sad that no one even offered. 

My little sister has Downs Syndrome and she has the same blood type as me but I would never allow her to give me one of her kidneys.  I would be afraid something would happen to her and sometimes kids with Downs Syndrome develop health issues and I didn't want to create problems for her.

I can totally understand being afraid of surgery.  I mean I am.  So it makes sense.  But when no one offers, it kind of hurts too.  Although I would never express that to anyone.  It does.

On another note a childhood friend heard I was on dialysis and she offered to give me a kidney.  I was shocked and so touched.  I ended up not having her go through the process, she had just started college and had not had any children yet.  I was concerned for her health but her offering really meant a lot to me.

[pelagia]

A friend of ours will soon donate a kidney to her brother.  George was diagnosed with kidney failure in September 2007.  This letter, written in February 2009, explains Lisa's struggle to make the decision to donate.   I asked Lisa if I could post the letter to IHD and she said yes.





Edited: Topics merged - okarol/admin

[kellyt]

Yea Lisa!  What a thoughtful letter.  Please tell them good luck for me.  I pray George gets his transplant and Lisa finds peace with her decision.  Hugs to them both.

Thanks for sharing.  It's so important for us recipients, and future recipients, to both see and understand the other side of the coin.

[pelagia]

It is an amazing letter - written by an amazing person. I told Lisa about IHD, but I don't know if she has been by to visit.  I asked her about posting the letter here a couple of weeks ago, but have been so busy at work that I haven't had a chance.  I am glad to hear that Lisa put it on LDO and to see that Karol already has it posted (of course).

Karol, can you delete my post about this?  It's better to have only one thread.

[okarol]

I will combine them.
It's a small world - I don't often post things from LDO but I thought her letter was really thought provoking. And typical for the dilemma faced by family donors - it's great that she shared her story.