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Any help for caring for husband w/Leukemia & Parkinson’s?
Caregivers | Last Active: 2 hours ago | Replies (22)Comment receiving replies
Hello @kerstij. Oh my goodness, being a caregiver is a most difficult labor of love sometimes. If your husband is showing signs of GVHD, I’m assuming he’s had an allogenic stem cell transplant for his leukemia.
This is something you need to report to his BMT team immediately. If he’s not taking his meds, such as tacrolimus this can allow the important tacro trough to change below a therapeutic level, causing some very serious side effects.
I know the sheer volume of meds we’ve had to take early on in the transplant journey but it’s not forever. Water is key to flushing our kidneys and body of some of the toxins, besides the all important hydration. I know I’m preaching to the choir here because you’re well aware…
How long ago was his transplant? What type of GVHD symptoms is he showing?
Have you talked to his team doctor or NP to talk about possible depression? Has he had difficulty eating due to nausea? When was his last followup with his BMT team?
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Hi Lori,
His transplant was August last year. 100% match from his sister. Things were going good until the “chronic GVHD” started to appear this year. He’s being treated at Fred Hutch Seattle & they’ve been great. They’re aware of what is going on as of Monday.
Up until a few months ago, dealing with the Myeloid Leukemia & his Parkinson’s was going well. Then the GVHD started presenting itself & the Parkinson’s (I’m thinking) was also reacting/progressing with changes of meds.
It’s really messed with his head, he’s always been very active & now he’s fighting the fact that he needs to take a couple steps back but he won’t. Yesterday he fell on the staircase hitting his head on the wall, broke the skin a little but never lost consciousness. He’s been dizzy the last few weeks but…..this is…maybe because he WON’T drink the amount of water that they highly recommended due to his liver status.
He’s extremely irritable, won’t eat, can’t sleep & is blaming me for reminding him that he needs to take his meds! I got up at 2am this morning & took the nighttime meds away from where I always put them & he found them at 3am (or so) & took them. I was up at 4:30am & knew that I was going to have to adjust all of the meds the rest of the day 😣
I’m doing the best I can but it doesn’t seem to be good enough…just feeling lost. He’s 67 & I’m 63. Very hard to pull off all nighters lately.