Friday, February 17, 2012

A woman I've been following on Facebook, Sharlie, had her heart and lung transplant yesterday.

I was telling Tin Man about it and Sugar Pea over heard us.  She told me that she was happy and very sad at the same time.  She's happy that Sharlie got her new heart and lungs, but she's sad at the same time because so many people are getting their transplants and daddy isn't.

She knows what goes into finding a match and all that, but its the rare blood type that she's just not grasping.

Since Tin Man is B- they told us to expect a 2 - 3 year wait, which is one reason they decided to put him on the list when they did.  Since he's still doing pretty good (considering how bad his heart looks) they figured it would give us the time to wait it out instead of waiting until he was really bad off and then not getting one in time.

We've explained this to the kids, the cardiologists have explained it to them, and even the transplant surgeon they met with explained this.  Warrior understands it, no problem, but Sugar Peas can't wrap her head around it.

So I ended up with her in my bed last night because she's so upset.  She told me that she feels like a bad person because she can't be 100% happy that someone else got their transplant because she's still so sad that her dad hasn't gotten his yet.

I wish she had other kids to talk to about this.  I tried to take them to a local support group for kids with ill parents, but it was mainly kids whose parents have cancer and both Warrior and Sugar Pea told me those kids don't understand how they are feeling.

I asked social worker #6 or #7 about a support group at the hospital, and they told me that the don't have one for kids whose parents are waiting for transplants.  They only have them for kids who are waiting for transplants.

I've though about trying to start one, but the hospital is over an hour and half away and there wouldn't be much response for it in this area.

I've tried taking the kids to someone that they can talk to but the 3 people we've gone to, neither of the kids liked them and refused to go back.  That's one bad thing about living in a smaller town is there isn't many people to choose from.

Tin Man has an appointment with the kidney doctor on Tuesday and I've emailed and requested a meeting with the new social worker to see if she might be able to help us with the kids.

That's the only complaint I've had through this whole journey is the number of transplant social workers we've had and also that they don't seem to do much except constantly remind us that we need to do a lot of fundraisers.

Somedays I wish I could go to bed, sleep for a few days, and wake up finding out this was all a bad dream.


  1. If you want maybe we can set up a Skype date for our kids. My kids know and may be able to help.

    We had friends get transplanted two months before us. It made me so sad and it was hard to swallow. I was happy for them but we had been waiting so much longer.

    My husband was high sensitivity and O positive. They told us one year and it took three. Everyday after one year was pure hell. It's so hard to wait.

  2. I wish there was more support for the kids, too. I wish they could find people that they could relate to. I'm B-, and I'll never think of it the same way. xo


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