Patty's appointment this morning with Dr. Costanzo was, as anticipated, largely uneventful. Her ICD was interrogated, which showed that there are still some odd rhythms happening; these aren't necessarily cause for real concern, but they bear watching. For example, her heart will sometimes beat at an accelerated rate for just a few beats, and will go back to normal without intervention.
Based on the data from Patty's ICD, Dr. Costanzo put Patty back on a low dose of Toprol XL, a beta blocker, to help resolve this issue. Patty tends to experience a drop in blood pressure (sometimes fairly pronounced) on beta blockers, so we'll see how she fares this time around.
Upon completing a physical examination of Patty, Dr. Costanzo said that our patient sounds really well, all things considered; in fact, she said that if she did not know about Patty's condition, she would presume Patty was in pretty good health. Patty then said, "Does this mean I could keep going for years on the heart I have, if a transplant is slow in coming?" The doctor said that she wouldn't agree that Patty could survive for years, but she is encouraged by the fact Patty has not yet had a steady, progressive decline since she has been listed for transplant. We both know, though, that circumstances can change at any moment, as was pretty much the case when Patty had a sudden drop in heart function early last summer.
This afternoon, we received a call from the University of Chicago. Patty's panel reactive antibodies (PRA) level, from a blood draw immediately before she received the Rituxan/Cytoxan infusion, was 70/100. For those who are newer to the blog, this means that Patty's body would reject 70% of potential donor hearts based on one cell type, and 100% of hearts based on another. In other words, barring a very unlikely turn of fortune, Patty is not yet a good candidate for a heart transplant.
Blood will be drawn before the next round of Rituxan/Cytoxan (likely late next week), and the numbers will be measured again. We should know, within the next couple of weeks, whether or not Patty is making progress in reducing her antibodies. If this treatment is unsuccessful, the next option would be total lymphoid irradiation (TLI)...and likely another battle with the insurance company about the value of this treatment.
If I understand correctly, TLI is used for purposes of immunosuppression and treatment of autoimmune disorders. It may also be used to help a patient tolerate a transplanted organ. Generally, side effects are not severe. If that doesn't work, I suspect we'll have pretty much run out of options, and will have to resort to crossing our fingers and hoping against hope a perfect match falls into our lap.
The drama builds...