Hi dear sweet Lori...

You continue to blow me away with how much you know and how much you care about each and every person! An angel who is so knowledgeable.

Believe it or not, I think about getting back in touch with you almost daily. One of the frustrations I have is that I always find it difficult to get back to our thread so I put it off sometimes. Is it just me or it it the site? I'd like to save the thread and print it so I don't repeat myself and also retain more of your thoughts.

Life is good...meaning that he has only one GVHD symptom and it's mild. His face gets bright red and his cheeks swell up. The doctor recommended over the counter 1% hydrocortisone combined with vaseline 3 times a day. It has improved a lot.

As an aside so you have the big picture. I may or may not have told you my partner was diagnosed with an idiopathic eye condition called Uveitis in 2017 which can lead to blindness. It has been managed with steroid drops and eye pressure drops along with Methotrexate. He dropped the MTX after the AML diagnosis but has not seen an opthamologist for a long time. The transplant doctor said it is hard to distinguish the Uveitis from the ocular GVHD. Nobody can really help him in a comprehensive way unfortunately.

Then 2 years later he got MAC lung. Mycobacteruium Avium Complex a rare non contagious form of TB. The ID doctor was worried the untreated lung infection(drugs are rough and often don't work,) could cause the MAC infection to spread. Fortunately the anti-fungal, anti-viral and anti- bacterial drugs took care of that for him during the chemo and transplant process. He is still on some of those drugs post transplant I believe.

It has been brought to my attention, that this AML/MDS ( quite low white blood cell count since 2015 with no further action taken), could be at the root of both the autoimmune Uveitis, and MAC which is caused by opportunistic infections.
I know it may seem irrelevant at this point. But it bothers me a lot. And it is of no interest to the doctors. But I think this would be of interest to the clinical research community. Another time maybe I guess. Have to stay focused.

Hoping I am not overwhelming you.

Meanwhile I have made a few friends. One a caretaker and one a patient and I am helping them both by sharing my research and resources. In fact is it OK if I direct them to you for additional support?

For another time. I am working on a memoir and hoping to realize some dreams. I do have a professional writing background so that should be helpful.
If you know of any professional resources by any chance thanks for letting me know.

With love 💖 and so much appreciation.
Lodi