Do you have some resources for support networks for caregivers? What has been your caregiver experience, either as a caregiver or with your caregiver?

I was at an event recently for transplant recipients, and a fellow liver transplant recipient was there who had recently gotten married. I asked him about his relationship, as one does, and he made a joke about using his anti rejection meds to keep him in the right and his new wife being annoyed by it. (If you've heard the line 'you can't say no to me, I'm on anti rejection meds' you're going to get the joke real fast)

I laughed, because I've used this same line in my own relationship a time or two, and assured him I was still happily married.

It seems like a fun little joke, until we realized someone overheard our conversation who wasn't 'in the know' and came over to tell us how horrible it was that his wife would be offended by his need for anti rejection meds after transplant, and that his doctor needed to explain to his wife that these meds were so important and your spouse shouldn't stand between you and medical care.

Both this fellow transplant recipient and I chuckled, and assured this passerby that neither of us were going to stop taking our meds, and that we were 100% pulling the sass card with our spouses to get our way.

I'm not sure which was funnier: the initial joke (and our spouses being saints for putting up with us!) or the fact that I realized I now speak a hidden language of transplant patients.

I want her and I to travel if and if she doesn't make the list. More so for her because we both sacrificed travel and such to raise a family and build for retirement. I know that if she makes the list that travel will have to be post transplant.

I'm really struggling here with this as I want her to have what we planned for our golden years as she deserves it as well as living the dream we planned and worked for. Has any care giver struggled with this? I'm sure there is but right now I'm at a loss on how to do it and frankly you mention it to people but they really don't understand the issues or the struggle with the known that time is limited. The transplant team talks about the life of a lung transplant being 7 to 10 years and that is a short time window if she gets the lung. Probably shorter if she doesn't as well as the struggles of traveling when her condition worsens.

To be a healthcare worker on a Transplant Team is something very special and they deserve love and recognition. I am so very grateful for my daughter's teams (past and current) and have been blessed to have met some amazing people.

My Amanda is a Chef so we have taken food plenty of times.

We am looking for suggestions.

Any ideas?

I was wondering if my fellow Care Partners could share how they take care of themselves.

Sharing is caring.

Sonia

But it also made me think of ways I've been cared for by this community and by those outside the community with my latest surgery. I had friends rent hotel rooms for me so I had a safe place to stay that was close to the hospital. So many people answered their phones in the middle of the night when I needed someone to talk to. People sent playlists and memes and kind messages.

I'd love to hear your stories of how you were cared for, both by those within this community and those outside. What was the most meaningful support for you, or what support do you wish had been offered?

Secondly, what are some past ideas of celebration you have done with your transplant patient to ensure they have a chance to celebrate the holiday too?

For us, we are luck so we don't have a lot of family living close by. We haven't traveled home in over 20 years for the holidays and we keep our celebration to immediate family only. We create a family Holiday card that we send to all our family and friends.

We decorate together for the holidays. We make a big deal about decorating the house in doors and out doors and we do it together. We plan on a theme and shop for the items and enjoy the process of dressing up our home.

What happens in your world during the holidays?

Sonia

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