Hi Lodi! It’s great to hear from you!! You’ll see a reply box right above this one with instructions how to easily find our conversations for future reference. I lose conversations too! ☺️

Ok, from my reckoning your partner is about 80 days post transplant? Hasn’t hit that ‘magical’ 100 day mark. At that point any GVHd that surfaces tends to be less voracious and considered chronic instead of acute. So for now, he should still be on all his medications. They will include his anti-rejection drug (probably tacrolimus), an antiviral, antifungal, one or two antibiotics, ursodial for his liver and possibly a proton pump inhibitor for his stomach and magnesium.
He’ll remain on those meds for as long as he’s taking the tacrolimus (or similar). That immunosuppressant, like the name says, is holding back his immune system from trying to attack his body. By doing so, he has no working immune system right now and is vulnerable to everything. So his bottles of pills are subbing for his immune system. Even as he weans off the Tacro and other meds, it will take 2 years for a new immune system to be fully up and running and it will never be as robust as the factory installed model. ☺️. He will always be considered immunocompromised.

Really have a doctor keep tabs on the potential lung condition too. Again, you don’t want things that are small now, to become a major issue later. It can happen very easily with a new transplant patient. I’m not trying to frighten you. It is what it is. We stem cell transplant people are on some untested grounds as far as how things will affect us. Nothing is certain and definitely doesn’t go by the book.

You didn’t mention his pre-existing conditions before. But there is some potential good news! With his new immune system his previous existing autoimmune conditions will be gone! He starts with a clean slate. So I agree, it would be interesting for his doctors to take a look into his eye situation (no pun intended) to see if this is the case!
He really needs to see an ophthalmologist soon to make sure he’s not having any GVHD in that eye! If something can be done now, it might be caught before it becomes chronic.
His transplant doctor is in no position to diagnose an eye GvHD issue. I had some unusual things happening to my eyes about 2 months after transplant and my doctor sent me immediately to an ophthalmologist. It was easier because I was at Mayo and they work so seamlessly between departments. But I learned early on, you don’t let any little thing go…it can become dire very quickly.

Skin is a big issue for GvHD so I’m happy to hear the steroid cream and Vaseline is helping. It should get less over time but he has to be really vigilant to stay out of the sun and to keep his skin lotioned up all the time.

Lodi, I’m so relieved you’re finding someone local to talk with and to help out! By all means have them contact me on this forum or, I can easily be reached by private message too. Click on my bio of @loribmt and there’s Send Private Message in the lower left corner.

Oh that’s fabulous to write your memoirs! You need some time to devote to yourself and no better way to do that then re-explore your beginnings and see how far you’ve come! What professional resources are you looking for? I have a very dear friend who is a writer and helps others write their memoirs.