John, Trevor and I made our monthly trip to Rochester last Thursday for John’s Friday appointments. We hit a favorite ice cream shop as we came into town… Flapdoodles, then hotel.
Always first on the list for appointments is to head to the lab for them to take a bit of blood for extensive bloodwork. Then we visited with one of the Pharmacists to go over all of his medications to make sure we are all on the same page of what he is taking every day. We had a nice break after that appointment, so we went and checked out of the hotel and the 3 of us went to Hollandberry Pannekoeken. It’s one of John’s favorite breakfast places in Rochester. He gets the chicken fried steak with fruit. Then an apple stuffed pannekoeken for dessert. (Stuffed pancake). 🤣
The next 2 appointments were with a nurse, and then John’s transplant Doctor. The most recent bone marrow biopsy (May 5th) showed us that none of John’s cells are left in his blood, and also there were no signs of his cancer! (MDS) So that’s the good news.
The bad news is….unfortunately John’s blood counts are showing some drops in their values. Not as low as before the transplant, but these low numbers puts him again at high risk for issues if he would get any type of infection, cold, etc due to low Neutrophils. (WBC’s). It appears that the donors blood cells are continuing to attack its own cells. This is called hemolysis.
What is causing this process?! Unfortunately, we don’t know. They have ruled out any obvious type of infections, graft vs host disease, and other cancers. Dr. Shah (his transplant Dr) says, “when John was airlifted to the Mayo hospital in March, our transfusion team did an extensive work up and determined that this is the donor immune system attacking the donor red blood cells. So in its truest form this is “autoimmune hemolytic anemia.” Why the donor’s immune system is attacking the red cells is not clear. Could be some type of infection/Some other trigger that we cannot point a finger at yet.”
Currently, the Dr believes the prednisone (steroids) are masking this “chewing” up of cells. We have been slowly decreasing the dosage, so this is why we are starting to see the cells get “chewed up” more quickly.
Dr. Shah continues to say, “ therefore, the treatments that we are working with, are all aimed at “calming” the immune system. (Tacrolimus, steroids, Rituximab and now MMF).
So with that all being said, Dr. Shah was optimistic since John is still feeling good, eating well, etc. The new plan is to add another strong antibiotic to his regimen (levofloxacin) and also a drug called Mycophenolate mofetil (MMF), which is another immunosuppressant. Then we will slowly wean him off of the Tacrolimus and the steroids. Hopefully the MMF will do its job!!!
Our next appointments with Mayo will be by a video chat with the pharmacist and Dr Shah next week to update him with how things are going. Although we are still waiting for insurance to “approve” the MMF medication. 🙄
We appreciate all of the continued prayers & support from everyone! We are truly blessed.
What is autoimmune hemolytic anemia? Autoimmune hemolytic anemia (AIHA) is a rare red blood cell disorder that occurs when antibodies directed against a person's own red blood cells cause them to burst, leading to insufficient concentration in the blood.
