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Oh I’ve tried several times to write this but keep getting interrupted and then it falls off. So I’ll try this again. He just back from MRI and very confused. So oncologist feels like the low sodium might be from his long time use of carbadoba and recent addition of artane. So want to consult with neurologist but they are at a different hosp. They are concerned that his liver enzymes are creeping back up and he may have some chronic graph va host. He has been off both the anti rejection meds and graph vs host meds for a month now. He had his transplant Feb 15 this year. And doing for the most part very good. His donor % is 99.6 in one area all the others are 100% and a bone marrow was checked when his % dropped to 89% just prior to graph vs host came about and no signs of cancer. This hospital’s neurologist is just really concerned with his confusion right now and between all the doctors today. Wow I think they are checking everything they can right now because his speech doesn’t make sense. I’ll keep you both informed of the rest of the story. Boy it helps just to write all this down as well even though I’m rambling. Thanks
Replies to "Oh I’ve tried several times to write this but keep getting interrupted and then it falls..."
Yes, please keep us informed as you can, @jrwilli1. Lori and I both know the benefit of writing and sharing our stories. When we share our stories, we gain strength because we realize we are not alone in the journey.
How is your husband feeling today?
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@jrwilli1 Writing really does help collect the thoughts, doesn’t it? I’m happy this is helping you and by all means keep writing! It can be cathartic as well as helpful for remembering all the little details and sometimes it helps bring the whole picture together!
I’m sorry your husband is having this confusion and speech issues. That’s a little scary for both of you. Low sodium can really have some definite side effects so his doctors will want to make sure that level is brought back up. Just for a little reassurance, from experience with a friend of mine, her low sodium caused similar reactions to your husband with confusion and garbled speech and a few other symptoms. Total reversal now after rebalancing her electrolytes.
Those pesky liver enzyme numbers were a bane to my existence too! Always creeping up any time there was a little hiccup in my progress. The reassurance I got was that gvhd of the liver is rare with a SCT. The liver numbers are usually elevated by the meds we take, not so much by gvhd after transplant. So fingers crossed this is the case for your husband too. My liver numbers at 4 years out are right down the middle and super healthy. Our bodies have amazing regenerative powers. Your husband is still a ‘baby’ with his new immune system so things won’t be perfectly stable for a bit yet.
Yes, please keep me posted on the rest of the story! I’m here for you any time if you have questions. Hopefully the rebalancing of his sodium gets your husband back on track but it’s a really good thing to be checked by the neurologist.
For you…take a deep breath and exhale…you’re doing an amazing job being a caregiver for your husband. It is not an easy task. I’ve watched my husband age through all of my transplant excitement. We wouldn’t make it without our super heroes in the wings. ☺️