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@loribmt

Hi @kerstij, I’m so glad that you’re feeling more comfortable about opening up and sharing your story. It can be liberating to get things off your chest! You’re doing great. ☺️

It’s so tragic about your brother and I’m sorry for your loss and for his little girl to lose her daddy. Did she then go out of state with her mom? Do you have any contact with your niece?
I know you have quite a challenge on your hands now with your husband, his GVHD issues and hesitancy to take his medications. I wish I had suggestions for you. Some patients cope with adversity after a traumatic medical conditions on their own and others can really benefit from some counseling. When I was in my 100 day stay for the BMT, I participated in a research project with a psychologist. The project was about how to spot people who may potentially suffer from PTSD following the transplant. It is very common for anyone going through transplantation, whether bone marrow or organ transplants, to have post traumatic stress. I’m wondering if it might help your husband to be able to discuss his anger and non-compliance with a counselor. Does the BMT team for your husband have a counselor on staff?

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Replies to "Hi @kerstij, I’m so glad that you’re feeling more comfortable about opening up and sharing your..."

Thank you for your feedback. I’m pretty sure that Fred Hutch does have counseling however my husband would not even consider it 🫤 he doesn’t think any of this is a big deal, that he’s dealing with it just fine. Thursday he had blood draw then they gave him a Cortisol injection through an IV to check how his kidneys were functioning being on steroids as long as he has been plus the steroid eye drops that I need to administer.
Taking the meds off of a consistent schedule just makes it harder for me because I need to adjust the rest of the days meds accordingly to balance it out. I’m doing it, it’s just one more hard thing to do.

Going back to my story.
Yes, brother died, arranged the funeral. That was in April 2003. Thought things were going to be ok but as it turned out…..life had something else in store (for me as I see it now) preparing me for now as it seems…..
I got a call from my dad EARLY morning, the day before Father’s Day June 2003 & he told me that my mom had died in her sleep.
Hmmm, I guess I should fill in a couple more details about my brother’s death.
He was taking a back road (dirt road) that he frequently took from work at Costco to home. Bill (my husband) & I were trying to call him to meet up regarding the situation with his ex-wife but we couldn’t get a hold of him, then Costco called my parents, my parents called me because my brother didn’t show up for work….The search began…co-workers knew the route he would have taken & Costco let some of the managers drive the route…
Next thing I knew, we were asked to go to his house to meet up with search & rescue. We did…..they found my brother’s truck, where it had rolled off an embankment & came to rest upside down…..From his home we then saw helicopters circling…we were notified that they found him but it was a retrieval not a rescue. 😣
The funeral director worked closely with me helping me through the process…
Back to my mom…
When they came to take my mom to the funeral home, the director himself came to their home personally. My mom was in great health & just had a checkup so they didn’t feel it was necessary to do an autopsy. They labeled it as…died of natural causes due to a broken heart over the loss of their son two months prior…The director couldn’t believe it when he saw the name so came himself & helped me again make all the arrangements for another funeral…
Brother died of hyphysication (don’t know how to spell that) basically trapped & can’t breathe & my mom from a broken heart.
The story continues but I need to deal with meds & eye drops for my hubby..