Relocating for transplant?

General
1

Hey Yall!

My husband has been on the transplant list for two years now. He is one of the cases that does not spike in terms of meld scoring. He has ascites, varices, hepatic encephalopathy, pretty severe insomnia and itching… and I think his platelets are low too…he has hovered around an 18 for awhile.

4 weeks ago dr started duiretics and told him he should be ready to transplant in two weeks.
It didn’t work. His score went up one point to a 19. Needed a 20 to get into the next range…he felt awful.
Dr took him off diuretics and tested last week…meld came back 18.
Dr told us he should have been transplanted months ago with the shape his liver is in…that is if his creatinine level was going up instead of down.

so here we are. My husband had a fever yesterday and chills. (We had a bad cold in our house with sore throat this last week…hoping it’s that, but he has no other symptoms)
He is feeling really unwell and unsure if he will be able to keep teaching. Today is day three back to work.
I think in his desperation he was looking into Duke University for listing as a secondary listing. It looks like a much better option at this point.
2.5 hours from home…
I’m not sure what relocation looks like…how long?Where would we stay? Do I leave our two elementary kids here with other families? I feel like staying at our home base during this time would be best for our kids, but Im not really feeling hopeful at this point and dont feel like our center is going to willingly tell us if we should go there until its really bad. (Yeah, forgot to mention…his ca19-9 keeps climbing)
Does this seem crazy…bc it feels crazy…?

has anyone else faced a temporary relocation?

I’m really sad and overwhelmed.

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Mommymoses,

I just read your post. I assume from your post that your husband is listed at CMC Charlotte. I was transplanted at Duke in July, 2015 and my dual listing was at CMC. I’d be glad to speak with you by phone about Duke and the arrangements we made for staying there a month post-transplant if you like. We had a nice arrangement which worked really well for us. Send me a private message if you’d like more information and I’ll give you my phone number.

Mark

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For anyone reading. HUGE thank you to fcmmark!

Mark you may have saved my husbands life by giving us the valuable information that you did.

The biggest lesson we learned is if insurance will pay for you to double list…DOUBLE LIST. they usually cover travel and lodging (gas and hotel, parking but not food) and it is absolutely worth it to get a second opinion and increase your options.

We learned alot of things that did not make us happy with our first transplant listing experience.

We are still patiently waiting…and having the same issues with fever and chills even on antibiotics :frowning: …and meld has dropped to 17 and 18 this week.

but we have SO MUCH MORE HOPE!!!

Thank you Mark!

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