Wednesday, January 17, 2007

Moving toward some answers (hopefully)

Hi everyone:

Patty's appointment with Dr. Costanzo this morning yielded few new answers, but ended with some optimism that we may soon gain some insights. Dr. Costanzo was amazed that we had not yet heard from UCH, in spite of promises she had received during conversations with the transplant team last week. She called again in our presence, and secured a commitment that we will receive a call in the early evening. We don't know if more insights will come from that call or not; if we learn anything fresh, I'll be sure to share it here.

Dr. Costanzo asked that Patty "tough out" her breathing challenges rather than go back on milrinone. The doctor is concerned that the risks of using the drug currently outweigh the benefits. Instead, Dr. Costanzo has prescribed a drug that should help Patty breathe with less difficulty during the night (Patty sometimes needs to sleep propped up because she cannot easily breathe.)

As we've mentioned previously, the plan is to try the drug rituximab as the next possible solution for reducing antibodies; we don't know yet when this will start. Also, the lupus / Hashimoto's issues need to be further explored, starting with a follow-up appointment with the rheumatologist and a blood draw at UCH this Friday. A new item on the list is another discussion with a neurologist about Patty's headaches (also this Friday.) To be frank, we think this is a redundant step and a waste of time.

More soon...


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