Top Line: The MAC is responding well to treatment, but GVHD continues, with skin and mouth about the same and eyes worse
The Siegels were in Boston this past Monday and Tuesday (Aug 8-9) for a round of tests and appointments. On Monday Susan saw Drs. Marty and Soiffer. The good news is that Dr. Marty pronounced himself pleased with Susan’s progress against the MAC attack. As you may remember from previous posts, MAC, or mycobacterium avium complex, an infectious pulmonary disease which in Susan initially masqueraded as tuberculosis, is a serious condition that requires a year-long treatment regimen. Getting the right selection and balance of the 3 (usually) antibiotics used in treatment is challenging to begin with, and generally requires some trial and error and periodic tuning thereafter. In Susan’s case the difficulty is compounded by her post-transplant status and GVHD, with the medications required for that. However, the protocol seems to be working at this point. Susan’s incessant cough is much improved. Even so, Dr. Marty is awaiting the results of certain blood tests to determine clinically whether more adjustment is advisable.
Dr. Soiffer continues to be concerned about the intransigence of the GVHD and the level of discomfort it is causing. Turns out, the MAC medications reduce the effectiveness of the main anti-rejection medication Susan is taking for GVHD, so Dr. Soiffer significantly increased its level. There’s been no noticeable improvement yet, but it’s not even quite a week. Let’s give it time. The good news is that Susan received a decent report card on her usual set of blood tests. It wasn’t “wellness” exactly, but there was nothing alarming.
Susan was also scheduled for an endoscopy late Monday afternoon, this to explore the reasons for difficulty she has swallowing. The procedure was scrubbed at the last moment because of concern about the pain involved, due to the GVHD-inspired condition of Susan’s throat. It may be rescheduled, but only with an anesthesiologist in attendance.
The main event Tuesday was a 5 hour stint at the Massachusetts Eye and Ear Infirmary involving a battery of tests preliminary to seeing Dr. Reza Dana, Director of Cornea and Refractive Surgery. Dr. Dana is the developer of a serum that can be effective in treating conditions like Susan’s. The treatment involves harvesting growth hormones from a patient’s blood as a basis for a serum, applied as eye drops, which can repair cornea damage and promote moister eyes. Susan’s eyes were so dry that she also received tear duct plugs to help keep what moisture she is producing in circulation around the eye. After Dr. Dana, she was sent to M.E.E.I.’s pharmacist for an explanation of how to manage the serum and what to expect. It’s kind of complicated. The serum, which requires frozen storage, should be ready sometime this week, but it can be several weeks after beginning the treatment before any relief is noticeable.
Finally, Susan saw Dr. Lehrman, who was covering for the vacationing Dr. Triester. The good news here is that the yeast infection opportunistically attacking Susan’s mouth (encouraged by the plethora of antibiotics she’s taking) is now much improved. However, the GVHD symptoms persist and she is uncomfortable. Eating continues to be difficult and often painful.
All in all, poor Susan is quite miserable, although some days are better than others. In particular, and ironically, her principal complaint at this point is her eyes, despite (or because of?) the plugs inserted when she was in Boston. She often can open them only with difficulty and pain, so she can’t read or do email and can watch television (or sort of watch) only sporadically and for short stints.
Susan does want you to know that she really appreciates the emails and cards she’s been receiving (as read to her by Bob or Charley) and apologizes that she can’t at this point respond back to you.
As usual, anticipate the next blog posting after her next visit to Dana Farber, scheduled for September 14th.