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How to be a good caregiver (bone marrow transplant BMT)?

Transplants | Last Active: Jul 17, 2023 | Replies (11)

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@fifi11

All of this started November 9th, 2019. He didn't feel good and finally agreed to go to the ER (men...). Within 3 months, he was 17 times to the ER and 11 times hospitalized. He was diagnosed with HUD, sarcoidosis, liver cancer, but each time it was a false positive. He was 4 years on steroids, which made him become diabetic. During the pandemic, it was him and Bubba at home (that's why I can't separate them...), while I was working as a caregiver. When we arrived in Tulsa OK, he stopped all medication and started feeling better, until he was no more. His platelets went down to 13, then to 7, that's when they hospitalized him again and diagnosed him with myelodysplastic syndrome (it took me about a month to get this word in my brain!). Ever since, he has chemo 6 days a month, he still works (he is a salesman) and the rest of the time, he sleeps. When his appointments for work are far, I drive him to make it easier on him.
Our social worker is nice, but it seems that I should know things she is talking about that I don't know. I am retired (I am 66) and Christopher is 10 years younger. He was supposed to be my retirement plan (that's a joke between us) and look at me now...
It breaks my heart to see him so weak and sick, I feel helpless, I spend my days sending emails to find grants, we moved to a cheaper apartment without stairs, and paid rent for a year.
The rule at the hospital is that, if we live more than 100 miles away, we must stay in Oklahoma City 2 months after the transplant. We live 106 miles away... They make life so much more complicated for 6 miles!!!
I don't even know if anything I say makes sense, I just spit it out as it comes...

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Replies to "All of this started November 9th, 2019. He didn't feel good and finally agreed to go..."

You said everything perfectly and I’m sitting here feeling your anxiety. You and Christopher have been through so much together and he’s surely had more than his share of medical excitement. You’re a wonderfully supportive and loving life partner for him. ☺️
Oh my goodness…that 6 miles is indeed a headache. But I do understand the ground rules set by the transplant teams. Mayo, where I had my transplant, required us to live no more than 30 miles from the clinic. It became apparent why once the transplant journey got underway. There are daily trips to the clinic for blood work, infusions or followup appointments. Sometimes there was more than one trip back and forth daily. We were fortunate to stay 2 blocks away and the clinic was accessible by an underground tunnel system. So that made it super easy even in the middle of the night, if I wasn’t well, for my husband to wheelchair me back to the clinic. It’s important to stay nearby for those daily trips and any emergencies.
After the critical period of the first two months post transplant have passed, those daily trips are tapered.

Don’t hesitate to ask that social worker to clarify things for you if you’re not understanding. That’s their job to help you make sense of all of this and to have the experience go smoothly for both of you. They may have a listing of possible lodging places for you or suggestions.
You can do this!! ☺️