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@loribmt

This is not an easy situation for you or your husband. You’re being very hard on yourself! Think about the stress and uncertainty that have been your constant companions for the past couple of years. It sounds like your husband had AML and then the transplant. I went through the same thing and watched my husband, my caregiver, age right before my eyes during that odyssey!

Watching someone you love going through all the treatments and then the process of transplantation and recovery is a challenge that’s difficult to describe unless you’re going through it. You suffer right along with them trying to offer comfort, finding foods they can eat, keeping track of meds and appointments. It’s exhausting.

This second chance at life for your husband doesn’t come without a hefty price tag of the abrupt upheaval of life as you’ve known it for the 40 years you’ve been married. Nothing can prepare a couple for this. So please, give yourself some grace. You are doing the very best you can!

I am sorry to hear about the gvhd making its presence known. The meds used to control that may be having an impact on the Parkinsons. It’s always a balancing act with meds. I’m glad his BMT working with him on this. But it is concerning with the dizziness and instability.
Being irritable is troubling too, especially since you’re taking the brunt of the grumbles.
There’s another member whose husband had his transplant almost 2 years ago. Her husband also has Parkinson’s which makes some days more difficult and concerning than others. Being able to commiserate with someone facing the same challenge might help you not feel so lost. I’d like to introduce you to @jrwilli1.

Since you’re new to the forum, I’d also like to give you a couple of links to discussions with other members who have had BMTs and/caregivers. Don’t hesitate to jump into the conversations.

~My bone marrow trnasplant story. Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
~~~
Chronic GVHD. Let’s talk about it!
https://connect.mayoclinic.org/discussion/chronic-gvhd-lets-talk-about-it/
There’s also a great website for all things transplant. The link is in this discussion https://connect.mayoclinic.org/discussion/bone-marrowstem-cell-transplant-informational-website/

If you don’t mind sharing, what are your husband’s gvhd symptoms?

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Replies to "This is not an easy situation for you or your husband. You’re being very hard on..."

This is kind of new, food not tasting right so…they’ve prescribed mouth rinses due to what they say is common for Chronic GVHD. Redness & sensitivity in the mouth, textures of food…Another thing they/we are trying to figure out is about his vision…he has basically no peripheral vision & his eyes feel like they have sand in them as he describes it. We have prescription eye drops, we have comfort drops & overnight gel drops but…again, he won’t let me apply them regularly. He’s a wonderful proud man that is determined to fight both illnesses his way but it’s definitely not working & it’s tearing me apart right now. Other symptoms of the GVHD is a rash that’s developing on his left forearm. It looks like a big purple birth mark that some people have. Fred Hutch (F/H) as I will refer to them from now on is keeping an eye on this too. He also had lower back surgery to remove a cyst that was causing him extreme pain removed just in September & they found a herniated disk under it that was blocked by the cyst in both CT & MRI. They repaired that. He also has what presents as spinal stenosis at the base of his neck which is causing him a lot of pain but the neurosurgeon is weary of doing another surgery right now due to the Prednisone he’s on.
Wow! I REALLY appreciate the outreach right now. Doing this is all new to me.
I’m taking things one day at a time right now.
I can answer more questions tomorrow but I need to get his evening meds together & try to get a few hours of sleep myself, if I can.