Today was a hospital discharge follow up appointment following Ron's week in the hospital last week. He also had his 120th ECP treatment. His care team spent a lot of time with him--almost two hours. He was feeling overwhelmed by the end and just sat with his eyes closed. I felt pretty much the same way, but I kept my eyes open. Because Dr. Mag wasn't on service for in-patients last week, there was some catching up to do even though he'd had a summary of what happened. We saw Tim briefly, Dr. Mag's nurse, and another doctor, a fellow working with Dr. Mag. He had seen Ron last week when he was observing during rounds.
We spent a lot of time talking about DVT, pulmonary embolisms, and blood thinners. Ron doesn't want to do the daily lovenox belly shots any more, and even very low dose xarelto caused too much bleeding. Other blood thinners require frequent bloodtests to monitor dosage, so Ron is taking the option of one 81 aspirin daily. baby aspirin.
Dr. Mag told me briefly about two new drugs that patients with active, early stage chronic graft versus host disease are trying now. They would not reverse the damage that Ron has to eyes, mouth, lungs, and skin, but it would be wonderful for new transplant patients to not have to go through everything Ron has.
Just to give you an example of how Ron has changed and is mellow, the new doctor when examining Ron's mouth and teeth somehow mentioned that the way Ron's mouth is restricted in how much he can open it--is called fish mouth. I said well, thanks, I would have been okay with not knowing that. But Ron thought that was pretty funny and made a fish mouth a few times to make all of us laugh.
Then we were off to ECP for 2.5 hours, and while there Ron's infectious disease doctor who is monitoring Ron's bloodwork while he is on the IV antibiotics at home, called to tell us that he is slightly dehydrated and needs to drink more fluids. But otherwise, he is doing okay on this stronger antibiotic. Next week Ron will have another ECP treatment and bloodwork. In June Ron had 9 days of IVs at home of the same antibiotic; this time he will have 18 days.
My rambling went out of control...too many details above to say that Ron is doing okay. Me,too!
Subscribe to:
Post Comments (Atom)
Wow... I just caught up on a few weeks worth of notes. Was going to check on his oral surgery and bam... found out you have been having more fun than expected. Gosh...not sure how the two of you keep going. It's exhausting just to read.. I admire your stamina..and always hope the best for you and Ron..You are both brave souls and your this story is just amazing. You have documented your lives as you go through these medical mysteries. There is a book here. Just saying. Keep on and I hope Ron gets rid of these pesky infections.
ReplyDeleteLove to both..Ginny and Hutch
Thanks Ginny. It's what we do and although our lives feel like a shadow at times of what our lives used to be, we still laugh everyday and are grateful for this extended time together.
ReplyDelete