To Donate Or Not?? Your input is needed!

[momsjcaly]

I am a 32 yr old wife and mother. I have recently been asked by a family member if I would consider being a donor. My first thought about it is NO, but I am feeling guilty and I would like to hear other opinions about my deciding factors. The recipient is a 49yr old female, type 1 "uncontrolled" diabetic that has had 3 diabetic ketoacidosis episodes. She has had diabetes for -+ 20 years. Her diabetes has never been under control for a long period of time, which is one of the biggest reasons why she has never been able to have children of her own. The way I am thinking about this is: why should I risk my own life when she has not and probably will not take care of herself. I tell myself that maybe she will start taking care of her diabetes after the transplant, but if she couldn't change her lifestyle to have children that she so badly wanted then how could she change now. I understand that this is a very harsh way of thinking, that is why I am reaching out to you! Please give your feed back. Thank You.   

[wants2help]

I am not the pro on this, but just wanted to put in my two cents worth-
My husband is in the process of needing a transplant.  He has taken as good of care of himself as possible, which is different
from the situation you're in.  The thought of giving a kidney in ANY situation is a big deal. 
I know the transplant place told him they would need confirmation of good diabetic control by 6 months of blood work, so if you're
family member is going to go through with the transplant, surely they will make her be in control, too?  You can make you're own
stipulations- that she  needs to take better care of herself, and you will want to see for 6 months that she is in better control?
Maybe the realization of her actions- kind of extreme needing a kidney- will somehow wake her up to knowing she HAS to take
better control?

[CK]

I started to say that you shouldn't donate out of guilt, but then I realized that guilt probably motivated me to some degree, at least at first. I donated to my boyfriend, who has Polycystic Kidney Disease, so he needed a transplant through no fault of his own. From his family there were no offers. My friend and my sister offered right off the bat...then my sister backed out early and my friend was the wrong blood type. I was scared about the whole thing, but I felt like I "should" get tested. I kept telling myself that I would just take it a step at a time and if after all the testing I was a match and able to donate, I'd decide then.

Right off the bat, I learned that I was type A and he was type O. The hospital said they were starting a paired donation program at some point, so that was OK, but it seemed like it might not happen right away. I was very ambivalent anyway, so delays were OK with me!

As I went through the process, I put a lot of thought and research into it.  I scoured the Internet and read lots of donor blogs as well as medical studies, etc. I talked to people who knew people who donated, and to one person who donated directly. With each step of testing it was evident that I was very healthy and unlikely to be disqualified as a donor, so I had a decision to make.

Then they discovered I was a subtype of A...A2, which can often donate directly to type O, so we would not need a paired exchange. I started feeling like the stars were all aligned, at this point. As I thought it over and he got sicker and sicker (wasn't yet on dialysis) I realized that for me, the only reason I could come up with NOT to do it, was fear. And to me, that's not a good reason.  So I did it.

Your situation is different. You have small children, I do not. I don't know how close you are to your family member, which would make a difference to me. I can understand your worry about her failing to take care of the kidney you give her (I told my boyfriend that was the one thing I asked of him...do his best to take care of it), I don't think that's harsh at all.

I'm not an altruistic donor like many on this site, I personally think I did it partially out of self-interest: to keep him around. I would not have done it solely out of guilt; in the end, I did it because I felt it was right thing to do and would make both my life and his life better.

IMO, you should think this through carefully and talk to lots of people.

[Scott337]

Normally, I would advocate a position of; "a gift is not truly a gift unless it comes without conditions", but I think in this instance you're right to have some pause.   I agree with the post regarding YOU setting conditions, if you decide to donate, to the recipient.  I think this is not only wise, but reasonable on your part.  If the family member in need is not ready or willing to change their life-style, chances are, a reputable transplant surgeon is not going to allow them to go forward with a transplantation either, from an ethical AND practical standpoint. 

IF you decide you're willing to potentially donate, you might want to speak with a transplant coordinator and/or surgeon to get their advice about the viability of the transplant circumstance relative to the family member's condition and history of not taking care of them-self.

Which ever decision you make, it appears you'll consider all factors and perspectives beforehand and make it based on sound reasoning.  These decisions are never easy - I wish you luck and wisdom my friend.  Let us know how it all goes.

Scott   

[Fr Pat]

     One form of genuine love is "tough love", where demands are made for the benefit of the person loved. You can only donate a kidney once, so I think it is reasonable to demand that the recipient give good solid evidence that she will take good care of that gift by taking good care of her health. If she destroys the donated kidney by neglecting her diabetis it will have been of little help to her, and will have deprived whoever else might have received your kidney at some future time of their opportunity. As noted above you can insist that she give her doctor permission to communicate with you, and only go ahead and be tested if that doctor says that she has been doing all that she has to do diligently for six months. At least that is my opinion.
    best wishes,
       Fr. Pat

[sherri]

This is really a tough decision and I commend you for giving it so much thought. Ultimately, you can't change anyone or make demands from anyone about their behavior. A doctor can't do that from his/her patient either. Only the person themselves knows the truth and their level of commitment. You can only control your own actions and be responsible for yourself. Once you relinquish that kidney essentially it is no longer yours and you can only hope/pray that its new owner takes care of it. There is a letting go process in the donation experience that I had to experience. In the donation process you have to willing to let go of a part of yourself unconditionally. Maybe that's why it is easier when you don't know the recipient. You can envision anything you want. Family, you will always know what is happening.

The only other thing I can suggest is that you not continue with the testing until you are sure. Once you test and find out if you are a match it will add lots more pressure.Then with each test you pass the less "choice" you have and there is more pressure and coercion to go through with the surgery. You say you are a wife and mother. How does your husband feel about this? Is he supportive of this decision? Perhaps this may not be the right time for you to undertake this surgery.

The hospital has living donor advocates and social workers to talk to so you may want to make an appointment with one of them to discuss your feelings. You are not the first family donor to be ambivalent or pressured to donate. You can also go through your own insurance and speak with a mental health professional to help sort out your feelings and weigh your options. Until then let your family know that you are doing research and looking into it but have not made any decisions yet.

Whatever you decide will be right for you at this time. Keep us posted.Wishing you peace as you weigh your options.

Sherri

[CK]

Right, good idea to talk to the transplant social worker or someone else on the team. You probably have to at least do the initial blood testing to get to that person (after all, if your initial tests disqualify you, then there would be no need for the SW to meet with you).

When I met with her, she asked if felt any pressure to donate, and I said no, since my recipient was reluctant to LET me donate at first. Then she said, "Are you pressuring yourself?" which was an excellent question that I hadn't considered and the answer was, yes, somewhat. She helped me a lot with that question. She asked a lot of others that helped too.

My experience was that they really wanted to protect me and help me not feel pressured. If you want to back out any time in the process, they will tell your recipient that you were disqualified for medical reasons. So you do have the option of getting the blood testing done while you consider then backing out for any reason, and the family member will not know what that reason was.

I would not have been comfortable doing that (I would have told him why if backed out) but I think it's a perfectly viable option for others if they choose it.

[sherri]

CK,

I guess it depends on the professionals evaluating you. The psychologist asked me if I felt pressured and I said yes. I am a sister and I felt very obligated to have the surgery for my brother. He said well someone else could donate and I said yes, but it would never be as good of a match as mine since I am a 6/6. If I didn't donate then he would go on dialysis and it would be my fault so I felt like I was in a catch 22. I was very honest and they did not disqualify me. I think in some ways I was hoping they would, but I had to be the one to say "I don't want to continue". I had this lengthy discussion with the psychologist how I thought the medical out was for the hospital and not for the donor. I had no independent donor advocate and only found out about that when it was too late. I also was under the impression that if I backed out to see if someone else would test then they would not reopen my file. I was told that once I declined my file would not be reopened, by a nurse coordinator at Mt. Sinai where my brother was treated originally so I felt very pressured. I learned later that not every hospital follows this protocol but I assumed that universal protocols were established by some kind of national transplant board.

So that is why I recommend for potential donors to seek outside help if possible. Ultimately hospitals want to make sick patients better and their patients are the recipients. The donors are treatments for their patients. Some do a better job than others advocating for donors.

[mobico]

I think that your concerns are very valid. I value your consideration to donate - to me, this shows that you are an empathetic individual who wants to help another. I equally value your pause - a gift that will simply be thrown away is not much of a gift. I would agree with some others in this thread that it does not make much sense to give her your kidney unless she can show that she can control herself for a decent length of time. Even then, I would not donate unless you are certain that you will not be regretful if she indeed relapses and throws away your gift. (I know of a situation in which the recipient, after much promises to the contrary, soon after the operation fell back into alcoholism, which was the cause of his disease to begin with. The donor felt like his entire donation was worthless.) Even if you ultimately do not give your kidney to this relative, who knows? Her request may have started you down the path of giving the gift of life to someone who knows how to appreciate it!

[BranBas]

When I was deciding if I should donate, I asked myself these things:
-Would this person live a good life & a life I would be proud of?
- Can I handle the positive negative consequences?
- How does my husband feel?
- WHY do I want to?

I hope this helps! I know you'll make the right choice for you.

Brandi
http://fromnonetoone.wordpress.com/