Anxiety about donation

[stressingaboutit]

My husband's father has asked him to donate part of his liver.  We have two young children and I am very scared.  My husband is also a little nervous.  He says he wants to buy time, and when they find out he does medical marijuana and I'm apprehensive the doctors may say it is not a good match.  I'm afraid they won't.  I  am also worried he may end up with what his dad has, and he won't have as good of a liver to protect himself.  It isn't until the end of May, and I stress about it all day.  I don't know what to do.  Does anyone have comforting words or advice?

[sherri]

I am so sorry that your husband and you have been put in this position. Family is not easy, especially liver donation. Living liver donation certainly cannot be compared to kidney donation. The surgery, as you have been told, is much riskier and I'm sure you are aware of the morbidity and mortality surrounding this type of elective surgery. You are right to be concerned. Part of agreeing to any surgery is informed consent and this needs to include non coercion. I think for family, there is always a sense of coercion. Obviously, many want to help their family member out of love but there is also a sense of obligation and guilt that does not exist with a non related or anonymous donor. The way the doctors get around this predicament is offer the potential donor a medical out.This means that you can decline at any time and they will let the recipient know that something came up during the testing process that made you ineligible to donate. they also need to let your father in law know how risky this surgery. i don't know if patients who are so desperately ill and keep hearing from the doctors that their only hope is an organ can even comprehend this. But it would be wonderful if you father in law could say to his son, that he does not have to do this if he does not want to. It may take some of the pressure off. I strongly suggest that you and your husband speak with one of the social workers or psychologists at the center or even outside the hospital to explore this much more in depth.There should also be a Living Donor Advocate, someone not affiliated with the hospital, to represent the donor's needs. This is not the transplant coordinator or social worker. Ask about that .

There are some living liver donors here who have done well. But it is certainly not as common of a surgery as the kidney donation. Keep researching, keep reading and talking about it. If there are issues about his health that you think should be brought up, by all means do, this is what the professionals are for.

Keep us posted.

All the best,

Sherri

[stressingaboutit]

Sherri,
  Thank you so much for your kind words and wise advice.  I will try to find a donor advocate.  I wish I could just tell them how I feel, but I am so afraid of the backlash.   His entire family including his sister, grandparents and aunt seemed very pleased.  I have a feeling no one is informed of the complications and mortality.  Once again, thanks.

[Dora76]

Hello,

Sherri offered you excellent advice, but I just wanted to contribute some words of support as well, in case it helps.  It is a very difficult situation you've been put in, and although it's difficult it's the right thing to do talk to your husband and together consider all of your options and the potential consequences so that you can make an informed decision.

From what I know of liver donation, it is more "dangerous" than living kidney donations and the outcomes are not as consistently positive.  When being faced with death, I can completely understand how it could be difficult for your husband's family to recognize the potential risks of complications and even death of the living donor.  You're right, they may not be completely informed right now, or acknowledge the honest facts.

If your husband is truly considering living donation, he (and you) can certainly meet with the living donor advocate at the Transplant Center.  You should definitely ask about it, because every Transplant Center has a living donor advocate, social worker, and transplant coordinators who would be extremely informative.  Plus, it's their responsibility ethically to walk a potential donor through the entire process, outline the risks, and answer all of your questions.  They might even be able to help facilitate a discussion between your husband and his father, or give you some feedback on how to approach a discussion.  The social worker and/or living donor advocate would be skilled in counseling and advocacy to help you through things.

As Sherri also mentioned, if your husband proceeds to go through the tests to determine he is a match, he will ALWAYS have the opportunity to step out of the donation.  From my experience as a kidney donor, I know that the Transplant Team is quite thorough in determining whether a living donor is suitable, so there's still the possibility they may decide your husband would not be a good match, either because of compatibility, or because of other potential risks to your husband's health.  Typically if a potential donor decides to "opt out" for any reason, the Transplant Team will cite a "medical reason" that prevents the donation.  This might give you and your husband difficulty because it would be dishonest to your family...but in the end I feel it's a significant long-term decision that all parties should be able to live with, whatever the consequences.

Take care, and I wish you all luck.

Dora

[stressingaboutit]

Thank you Dora.  Now that I know about donor advocates, my stress level is way down.  I hope I can spread your good cheer and advice to others who need it!

[dodger]

I would also find out how long and how many successful liver transplants the hospital has done for both donor and recipient.  Some hospitals have stopped preforming these surgeries for various reasons.  Surgeons move, low success rates( which means high mortality). 

I agree with the medical opt out information.  You both need to be completely ok with this and not feel pressured. 

I don't blame you one bit for being anxious about this.  Your family comes first.   Best wishes,  Janice

[sherri]

Clark just posted a few new articles about living liver donation. You may want to share these with your husband and his family. It might also be helpful to speak with your transplant center about the issues raised in these studies.

http://whtc.com/news/articles/2011/nov/04/liver-donors-have-complaints-years-later-study/

http://journals.lww.com/annalsofsurgery/Abstract/2011/11000/Long_Term_Follow_Up_After_Right_Hepatectomy_for.3.aspx

http://edition.cnn.com/2010/HEALTH/08/19/live.organ.donation/index.html

Good luck

Sherri

[stressingaboutit]

This hospital is the one where the young father died in 2010.  I am stressing again.  I have dark thoughts that I can't control.  Sucide, divorce...ect.  We have been arguing, ect.  I feel like I need to talk to someone besides him about this, because he is under enough pressure from his family.  I wish I could just give mine instead, because if one of us died, it should be me, as he is the primary source of income for our family.  Plus, he is such a better person than I, and our children need him.  I hope this isn't too personal, but at least it is anonymous. 

[sherri]

stressing about it,

I'm glad you are honest about sharing your personal thoughts. That's what this forum is all about. It sounds like you and your husband are in a real turmoil about this decision an it is causing a great rift and angst. It is not an easy decision but you do have options. One is for your husband to decline confidentially at this time. The team will let the recipient know that something came up in the medical testing that disqualifies him at this time. Perhaps you can put the need out to others in the community through  religious groups facebook pages or other social media making the need known. Then others if they are willing to be tested can step forward. There was actually someone on the looking for section of this forum interested in donating a liver lobe. I am not sure how much thought they have given or if this is truly without compensation but you can alert you can connect your recipient with this potential donor.

You also mentioned that there may be some medical issues with your father in law being able to receive a kidney. Has he passed all the tests and is he active on the list? Sometimes recipients assume they are on the list when in fact they have not been approved medically, psychologically and emotionally.

 This may be too big for one person to handle and I really think you could use some professional guidance. I sought out a counselor to help me when I was going through my donation process (it was kidney donation so it was very different than liver). Please call someone you can trust whether it be a social worker or psychologist at the transplant center or through your own insurance, a clergy member, your own physician or even a crisis hotline number. You are not alone and there is help out there. Please take advantage of the resources available to you. Make your needs and your children's needs a priority today. Having these thoughts is very normal in a situation like this. Sounds like you are a good wife and good mother and wonderfully caring person who is worried about her husband and children.

please post again soon and let us know how you are doing.

All the best,

Sherri

[Fr Pat]

     Perhaps it might help relieve the stress if your husband went and did some initial tests and interviews at the hospital? Getting tested is NOT considered by the hospital as a committment to go ahead and donate. Potential donors can back out at any time, and the tests are so demanding that the doctors can easily find a good medical reason for exclusion so that nobody feels offended. There are many physical, psychological, economic and social situations which cause potential donors to be eliminated by the hospital. You mentioned in your initial post that your husband must take medical marijuana. It might be for a medical condition that would also eliminate him as a donor. Living liver donor candidates have to be in EXCELLENT health before the hospital would approve them. The tests are confidential. Only the potential donor gets the results. The potential recipient is not shown the results.
    best wishes,
      Fr. Pat

[stressingaboutit]

Oh my gosh, your guy's post mean the world to me.  I am still hoping for the best relationship with his family, no matter what may happen.  You helped me feel less crazy, I just need to talk to someone.  Thank you.  I will do the best for my hubs and children, and walk him through his process, and be honest with any docs we talk to....However, I hope they take my feelings into consideration.

[SWB]

Just to reiterate some of the other replies.  I just finished doing what I hope is almost the last round of the testing for a kidney donation.  Part of that process was MULTIPLE interviews with the transplant team including psyhologists, the surgeon, a social worker, a patient advocate, and several other key personnel trained to address questions.  In my case, my significant other insisted on sitting in to hear all of the information and I think that was a smart decision.  However, the patient advocate did her interview one on one with me only to ensure that I was able to be completely honest.

My main point in the posting is to say that the transplant team really wanted to make sure that we were BOTH informed and involved in the decision process since it is something that affects the whole family unit.  As others note, my suggestion is as follows:

1.  Take a deep breath and relax (which I was not able to really do initially);
2.  Realize that you have nothing to worry about yet since your husband could go in for the tests and not match or be selected so if this is something he is really set on I would suggest allowing him to complete that part of the process so you are both informed;
3.  Make sure you can get answers to all of your questions and your husband's during the testing process; and
4.  If he is unable to donate then it sounds like you have nothing to worry about but he will feel that he has done all he could do.  And, if he does match then you can let the team know your concerns while being honest with everyone involved.  In that event, I would definitely suggest talking to other folks who have gone through the experience AND professional counseling.  It is not an easy decision.

It sounds like you have your husband's best interests and your family's on your mind and in your heart.  Until you know that there is a match then I would tell him you will be as supportive as possible knowing that you have concerns but he also needs to understand that in the event that everything matches up then you really want to talk to a professonal together to work through all of your concerns and next steps before proceeding. 

I know it must feel like you are between a rock and a hard place and will keep you in my prayers.  Just remember, the worrying about it is also not good for you OR your overall family as well.  Try to stay calm and be as patient/supportive/understanding as you can be.  Talk to someone in confidence that you can trust and reiterate your concerns but support and desire for further discussion in the event that he is able to donate.

Apologize for the ramblings but hope it all works out for you both.

[stressingaboutit]

Thank you so much.  Your positive words have meant so much to me, and I hope I can serve someone in this same capacity someday. 

[CK]

I have to agree with everyone else. I was very anxious about donating initially but I took it one step at a time. I figured there was a chance I'd be eliminated at every step (and I have to confess I both hoped and feared that would happen at the same time) and that if I passed the screening, I'd decide then what to do.

All along I was reminded by my team that if I wanted to back out at any time, they would say there was a medical reason. I would not have taken that option (I would have told the recipient myself if I decided to back out), but it was comforting to know that out was there.

I researched it a lot and talked to a lot of people about it. When it became clear that I could donate, I made the decision to do it and not look back or second guess myself. The benefits clearly outweighed the risks for me. I donated a kidney...I don't know much about liver donation, except that all of the fears you and your husband have are normal.

Take advantage of the donor advocate etc to discuss your fears. You and your husband need to communicate well during this time.

[stressingaboutit]

Hello all.  Although this is a dark up and down period of our lives, I just received a message from a girl on here (Liver2012) who is also going through this.  I was able to offer her some sage advice thank you to everything you all have said, and we have heard on our visits to the hospital.  Thank you once again for everything.