My Husband Wants to be a donor

[myhubbyadonor]

Hello.  I am freaking out about this...sick to my stomach actually.  My husband is in his 50's and we have three young children in preschool and grade school.  He wants to donate a portion of his liver to a sibling.  It it selfish of me to not want him to do this.  I am concerned for my children mainly.  If we did not have young children I would be scared, but support him on it.  My husband is the main provider of our family income.
I appreciate your thoughts and comments. 

[sherri]

Hi Wife of Potential Donor,

You are certainly not overreacting about your husband wanting to donate a portion of his liver to his sibling. This is major elective surgery. Live liver donation, adult to adult, has more potential negative consequences than kidney donation. Given that you and your husband have a young family it certainly is not unreasonable for you to be concerned. It may be helpful for both of you, if he agrees, or you on your own, to get some counseling about this issue. Family donation is very difficult. There are a lot of feelings of guilt, obligation and love. The decision is not easy. I hope the two of you can look at this from all sides and come to an agreement as a couple. Here are some articles about some living liver donors whose outcomes were not what was expected. I am attaching these just to let you know that your fears are very real and valid. There are many successful transplants as well and I hope you can hear from some of those donors who are out long term from their surgery.

All the best,

Sherri




Woman Dies While Donating Kidney to Relative
http://abcnews.go.com/Health/Wellness/york-hospital-mid-surgery-transplant/story?id=16511132#.UGBG9rJlTMU

Living donor of liver dies during transplant at Lahey Clinic
http://www.boston.com/news/health/blog/2010/06/living_donor_of.html

When liver donations go wrong
http://www.cnn.com/2010/HEALTH/12/17/live.liver.donation.complications/index.html

[Fr Pat]

     I know that this message does not really respond to your present difficulty, but situations like this remind us to pitch in and try to encourage EVERYBODY to sign their donor permission for after-death donation. If more people would just sign the permission on their driver's license or other card, and make sure their family knows of their wishes, there would be enough livers and kidneys available to make such difficult decisions about living donation unnecessary.
    best wishes,
    Fr. Pat

[tjhurley]

Some people have incredibly wonderful relationships with their siblings. Something you might hope for between your own children when they are grown. It is touching to think that they may grow up to care so much about their own siblings.

Having said that, if his heart is set on donating after he has demonstrated fully to you that he understands the risk he is taking - and- that your strong maternal feelings may cause you to feel some resentment for some time as you may possibly feel he is putting a sibling before your children- even if all goes well- then you should consider how large an insurance policy would replace his income and make you feel secure enough for him to proceed - and if there is time for the risk of the donation to be covered by that policy.

Nothing, of course, can replace him, but surely a parent can want their children's future somewhat secured?

Best to you and all concerned, Janet

[kdub]

I gave one of my kidney's to my brother.  I am married, and am the sole provider for my wife and 2 children.  My boys are 4 and 6 years old.  My wife and I struggled with the idea of kidney donation.  My first instinct was, of course I will donate my kidney to my brother!  My wife's first instinct was, I hardly know this guy, and I'm going to put the life of my children's father on the line for him?  We struggled greatly with our decision.  Notice I don't say MY decision, as it clearly was not a decision I could make on my own.  I don't know how to describe to you the real agony we went through struggling with this.  I didn't realize it completely at the time, but I think my wife felt like she couldn't really say no.  So, even though she was AMAZINGLY supportive, especially during my recovery, I don't think she was ever totally on board.  I am sure, if I asked her now, she would say NO WAY!  (and my surgery and recovery have gone very well)!

Sherri correctly points out that there are REAL risks.  I have not studied liver donation, but the amount of research that has been done on the long term effects of kidney donation is laughable.  I assume it is the same for liver donation, but perhaps someone else can chime in about that. 

All this is to say that your feelings are totally valid, and it only makes sense that you would be looking out for the best interests of your children.  I have two pieces of advice for you:  Please make sure your husband has all of the life insurance you could ever want BEFORE he does a single test.  Secondly, get a second opinion about your husbands suitability to be a donor, don't rely on the transplant center alone.

[willow123]

Hi MHD. My husband and I have been struggling with this for years with his potential kidney donation.  (He has a couple of sisters with a genetic kidney disease so this issue has been kicking around for a long time.  Right now we are awaiting the results of a paired exchange drawing.)

I know very little about liver transplants.  However, I can tell you that as a spouse my concerns have been waived away by pretty much everyone involved.  Even though I am not the donor, but the spouse, I have received most of my psychological support from this message board and reading outside journal articles.  That is how I know that my concerns are valid and I am just not just making stuff up.

I also think the familial aspect makes it almost impossible to say no.  Over the years I have resigned myself to the donation, but I can definitely feel the anger and resentment simmering below the surface.  If a donation is actually scheduled this year, I will probably be upset again.  However, last year, when it looked like it was definitely going forward, I realized that my husband felt he truly had no choice and that my lack of support was causing him tremendous stress and anxiety.

I have found the kidney transplant process to be centered about 80 percent on the recipient and 20 percent on the donor (at least in the screening phase) with no support or consideration for the donor's family.  Because of logistics I was never able to attend my husband's appointments at the centers with him (and we're talking THREE transplant centers) and nobody ever asked to meet with me.  So clearly providing emotional and psychological support for the donor's family and making sure they are on board is not a focus of the screening process.  If you want to be heard you will have to go along to the appointments or separately discuss your concerns with the doctors.

Frankly, it stinks to be the spouse.  I would much rather be the donor myself than to have to stand by and watch and worry.

[myhubbyadonor]

Thank you everyone for your responses.  I have read each of them several times.  The topic is getting closer.  Someone said I couldn't say 'no'.  Well, I have restrained myself a couple times from stating 'you are not doing this'.  OK--it is a sibling, but I'm his wife and mother of his children. If and when he approaches me with the topic I am going to tell him that.  I know I can't stop him...but I'll try my hardest.  I feel like I'm being rotten, but I am so strongly against this. 

I feel an incredible amount of resentment about this.  My husbands brother spend years doing drugs--iv drugs.  From there he got Hepatitis C (I think it's C).  Since i have know him...about 15 years, he has continued to drink alcohol on a regular basis and at times quite heavily (from what i understand is a strongly discouraged with hep c).  So you see, he has created his own problems.  The thought of my husband donating a portion of his liver to his brother makes me angry and really makes me feel sick to my stomach. 

Honestly, if I didn't have children I would not be opposed to this.  I would be scared, but not strongly opposed to it. 

Terribly stressed here....

[sherri]

There is usually more to the story in family donations and I am glad you brought your family's situation to the forefront. I always say, it's never about the the kidney or the liver.

Your brother in law's history of alcohol and drug abuse certainly factor into your decision about your husband risking his life for his brother. Organ allocation is difficult. Generally, liver recipient's need is based on a MELD score which is a combination of different lab results which determine their need based on the severity of their illness. It is difficult for ethical committees to sit there and judge everyone's past transgressions and allocate organs to only those who led a perfect life. None of us would receive organs. That being said, I believe there is some judgement in the fact that they will not approve a recipient if they are still drinking alcohol or using drugs. This is pretty easy to determine with blood and/or urine testing, which I imagine is mandatory before each transplant surgery. Has your brother in law stopped drinking, smoking and doing drugs? Has he been approved as a recipient? If not, your husband wanting to donate may not even come into play. If the benefit of the transplant is diminished by behavior risks then I would think that your brother in law would not even be a candidate to receive an organ unless there has been some elapsed time where he is alcohol and drug free. This certainly would be reasonable to discuss with the doctors when you and your husband meet with them. Make sure you are there to express your concerns and ask questions. You may even want to seek an opinion outside the transplant center and have your husband seen by a neutral party to be educated about all the risks to himself, your family and the chance of a successful recovery for the recipient.

I hope you are able to resolve this issue and come to terms with whatever the decision. Giving up an organ is hard enough, giving it over to someone who is likely to abuse it seems almost counter intuitive. Your feelings and emotions about this issue are very valid.

Keep us posted and thank you for sharing your story.

Sherri

[Fr Pat]

     It is not unreasonable to insist that the intended recipient show (in actions, not just in words) that he will take good care of the donated organ and strictly follow all the requirements of anti-rejection medications, check-ups, and avoidance of any activity that would threaten the health of the donated organ. Abuse of alcohol or drugs after the donation could damage or destroy the donated organ. "Tough love" is still love. A potential recipient can be required to follow a healthful life-style (verified by testing) for some months BEFORE the transplant, to make sure that such a precious gift and the risks taken in giving it) are not wasted. It would be prudent to make sure that this is talked about honestly with the medical team and with the intended recipient.
      best wishes,
          Fr. Pat

[Hubliver]

Hello.  I am freaking out about this...sick to my stomach actually.  My husband is in his 50's and we have three young children in preschool and grade school.  He wants to donate a portion of his liver to a sibling.  It it selfish of me to not want him to do this.  I am concerned for my children mainly.  If we did not have young children I would be scared, but support him on it.  My husband is the main provider of our family income.
I appreciate your thoughts and comments. 

I'm going through something very similar. Any more thoughts, comments or advise?

[sherri]

Would you care to share your personal story? Sometimes it is therapeutic just to be able to put it down on paper (or keyboard) in order to vent. I admit, I found it very difficult to do that here on this board initially. When I donated a kidney 5 years ago I was very ambivalent about having elective surgery and it seemed to me at the time, that every donor I met couldn't wait to have their organ cut out and given to their recipient so they could "save their life". I think many of us reluctant or ambivalent donors can relate and help validate your feelings. Donation surgery isn't for everyone and if you are not ready to accept the risks then this may be something that isn't right for you at this time. Feel free to express your emotions. I am always fascinated by the family dynamics, the lack of understanding sometimes by the health care team and overall would like to help donors or potential donors come to terms with whatever decision they make.

All the best as you become more educated about this topic.

Sherri