Does anyone know of any support group or forum for spouses of potential donors?

[willow123]

I am a spouse completely on the sidelines of this process.  No transplant coordinator or social worker at any of the institutions that might do the transplant has ever wanted to meet with me.  My interests are not "aligned" with those of my prospective donor husband or the prospective recipient, my sister-in-law.  For me the risks, small as they are, are still real while there isn't much upside.  As the dates for the paired exchange pool approach, I am filled with dread.  When they pass without a match for my SIL due to her extremely high PRA (although there are scores of matches for my husband), I am sad for her but also extremely relieved.

It sounds awful and selfish, and I apologize in advance if this seems insensitive especially on this board.  However, I would rather do the donation myself.  Since it is a paired exchange program, there really is no reason why I can't do it instead of my husband.  (He won't hear of it since it is his family.)

Which leads me to the point that spouses of living donors are definitely in a different psychological situation than the living donors themselves.  There is no excitement of meeting people or participating in a strange and new process, or the warm feeling of accomplishment after  having contributed positively to the quality of someone's life.  All there is for the spouse is worry.

I was wondering if anyone knew of any kind of support group particularly for spouses or other loved ones.

[sherri]

Willow,

I often wonder about spouses of donors and they cope with their husbands's/wife's/partner's decision to donate. While you don't share the physical aspects of the surgery you certainly are effected by any outcomes from this elective procedure, so IMO someone from the medical team should be interested in what you have to say. Have you gone with your husband to the appointments? Have you spoken with the social worker or living donor advocate? you can start there. If not, I would definitely see a social worker or psychologist through your insurance. What you and your husband are going through now is certainly a life changing event and is a stress on a marriage. You can also go together or separately.

I understand why you say you would rather be the donor, especially if you have children and your husband is the primary source of income for your family. Your feelings are valid and I am sorry they are not being addressed. Advocate for yourself and see if you can get the support you need. Keep us posted and if you feel comfortable share your particular concerns here. Sometimes, venting and talking about your fears, anger, resentment, relationships with family can be helpful.

All the best,

Sherri

[Orchidlady]

Our local center has a support group for transplant recipients (any organ).  We have a wide range of attendees including spouses and family members, and have had spouses of potential living donors attend. You are right in that it is definitely geared towards the recipient. But the social worker running the meetings has really made a point of including every attendee in the conversations, and has encouraged everyone to discuss on obtain the support of the group for their own fears and challenges. While they may not have approached you directly, I would ask specifically to speak with the social worker. I remember that, even before being involved in the process, that I , as the spouse, had my own meeting with the social worker when my husband was going through the evaluation process for the list. So I would think they should be more than willing to talk with you. If you get no satisfaction, as Sherri suggested, I would seek my own support. It is worth the peace of mind.  It is a stressful situation, to say the least, and the anticipation added to the process, in my opinion, makes it worse. Good luck to you, and I hope you are able to talk with someone that will relieve your anxiety and fears. Bestof luck -

[audrey12]

I recommend you request a transplant buddy, a donor who is married and whose spouse is willing to meet with you.  Depending on where you're located I'm sure someone on this forum would be willing.  My husband and I had lunch with a couple where the wife donated to the husband so that was a little different.  But it was good for my husband to hear what the procedure and recovery were like.  When I went in for my two-week post-op, my surgeon asked if we would be willing to talk to a potential donor and her husband who were in the next exam room.  I think he alleviated some of the husband's concerns.

[Clark]

Private message me, please, with contact info, and I'll forward it to my spouse.  She's been glad to talk to other family members of donor candidates before. Best wishes.

[willow123]

Thank you very much to everyone who has replied!

I think if it comes to the point where there is actually a match, I am going to have to get a buddy or a therapist or probably both.

It never ceases to amaze me that we have been through the process at three different hospitals and talking to the spouse is not protocol at any of them.  Whatever contact I have had with the doctors has been out of my own insistence to speak with them, but not because it was a required part of the screening process. 

While I stand by my original assertion that the process leaves a lot to be desired, I also know that our situation has been made even more stressful by family dynamics.

Maybe when this is all over I will start a website where spouses and parents and children and other loved ones can worry and support each other!