How to find a therapist with transplant experience?

[Yellobelle]

I had all my testing and sessions with the dietician, transplant coordinator, and social worker. I asked the social worker if she could refer me to a psychologist/psychiatrist/counselor with experience with living donors or transplants. She did not have any recommendations. :-( She said look up who my insurance covers and just pick one.

Did you talk to a professional about the emotional side of donating? How did you find them? Is this supposed to be the social worker's role? Am I supposed to call her as much as I want, or is she mainly there for the evaluation process?

I feel like I need more mental preparation, make sure I have realistic expectations, etc. as well as help dealing emotionally with the family part of the equation.

[sherri]

I also found the donation experience to be quite overwhelming and needed more support than the transplant center could give me. I decided to contact Jewish Community Services in my area (I live in Baltimore) where they offer mental health services. I used my own insurance to do this and it was the most affordable. A private therapist could be very costly so it is good advice to go through your insurance. It may take going to a few different people to see who you find my helpful and with whom you connect.

When I called for intake I described what I was looking for and it turned out I saw a social worker who had some experience in transplant. At the time, I also thought I needed someone who was familiar with transplant but hindsight it wasn't the most important. After the transplant I ended up seeing another social worker who did not have experience in transplant but was still helpful. For me, a lot of the issues I faced were more related to family dynamics and it was the "kidney" that happened to bring them to the forefront.

Seeking professional help was probably the best gift I gave myself. I had a safe place to vent, someone to listen who didn't keep telling me how "easy" kidney donation was and how I only needed one kidney.Unrelated donors often comment that people think they are crazy for donating to a stranger. As a related donor, I found that people almost expected it of me. I often got the response, "oh but you're related so it's easier".

 It has been almost 7 years since my donation and I am in a much better place. Related kidney donation brings a whole host of issues. Most often it isn't about the kidney or the surgery but more about the raw emotions and the baggage we bring to the table.

Long story short, since becoming a living kidney donor, I switched professions (I was in health care  before) but I am now a registered nurse and work as a transplant coordinator for stem cell transplant. I had an interesting set of patients before me yesterday, two sisters and the donor looked extremely worried about the stem cell donation. Now stem cell donation is not as involved as a solid organ, but again it was not about the donation itself but about all the emotions that something like this brings out. The recipient said the process of the donation is not that big of a deal, it is like donating blood, which is true, but what I pointed out is the amount of responsibility and the burden that is often carried by the donor. Transplant is a very emotionally charged experience for some. and I think in particular, for siblings.

A wonderful plan for you to have someone in place to help you through.

Would love to hear more from you if you would like to share. This forum was extremely helpful for me. All the best to you and your family.

Sherri

[Yellobelle]

"Most often it isn't about the kidney or the surgery but more about the raw emotions and the baggage we bring to the table."

^This is pretty profound. I am definitely going to prioritize finding someone to talk to as I work through this.

Word apparently got around to the family that I was a "match" for my sister-in-law. Not sure what that means, since I told them two months ago that I was a "match." But I guess they believe me that I am actually going to donate now. Which means my MIL at least said thank you. I guess nobody else knows what to say.

I have a friend who is a lung transplant recipient, and she told me I am a hero. I know so many of you don't like being called a hero, or to get attention for your act of generosity. But it made me cry. Because it meant so much for *somebody* to acknowledge that this is a big deal. (My recipient also appreciates it, and my husband and my family support me.) We do not make a lot of money, but we are paying for babysitters/tolls/gas/therapy, using up all DH's vacation time, risking complications. I am not going to be able to pick up my own baby for a little while. And while it is nothing compared to the suffering my recipient is going through right now, it is still something to me. All for a relative that I barely know, because she has suffered way too long already.

So, game plan is counseling for me, enjoy my baby snuggles, prep my million questions for my appointments with the surgeon/nephrologist/donor advocate, and give the crazy side of the family 100% less headspace. Can I ban them from visiting me at the hospital like you can in the maternity ward? Cuz we might be at that point in a few more months.

[CK]

As a therapist and a donor-I don't think the therapist you pick needs to necessarily have transplant experience, just be a good therapist who can listen and empathize.

I don't like being called a hero, but it was meaningful to me when people who had gotten transplants thanked me in the hospital. And when my husband's family thanked me for doing it.  Adulation is not needed, but it is nice to be validated.

After the surgery, right before I left the hospital, the surgeon pulled me aside and told me I saved my husband's life, which made me cry, because really, THAT was why I did it, not for me, for HIM.

It's been almost 3 years and we have a normal life.  He's healthy, he can do things he never dreamed he'd do, and I certainly do not miss that extra kidney.