Yesterday morning, I spent the better part of an hour crafting a blog entry to share highlights of a phone conversation Patty and I had with Dr. Costanzo, Patty’s cardiologist and heart failure specialist at Edward Hospital. Just as I was preparing to post the entry, my PC froze and the message was lost. My tirade, while brief, was legendary, and I just couldn’t bring myself to start afresh. I’m calm now, so we’ll start again.
Dr. Costanzo’s call was in response to an email message we sent to our doctors at both Edward and UCH. We have not yet heard back from UCH, which is a bit frustrating, because we want all perspectives and now feel like we’re stuck in limbo.
Dr. Costanzo is wonderful. We can tell that, on a personal level, she is unsettled by the challenges Patty is trying to overcome, and we sense that she’s worried about Patty’s long-term prospects. She said that as she considers what would be best for Patty, she imagines the advice she would offer to a daughter or spouse. She also said to Patty that, if she could, she would “go out and buy a heart.” It’s nice when you sense doctors see your loved one as much more than a paying client.
We shared the PRA numbers with Dr. Costanzo, and she sounded fairly defeated. I think she had anticipated, or at least hoped for, better outcomes from the chemo. She thinks that plasmapheresis (scrubbing the blood of antibodies) and/or total lymphoid irradiation (TRI) may offer some ray of hope to reduce the antibodies. Although there are no guarantees of success, and the procedures themselves have some associated risks, the doctor feels these attempts are a much better option than proceeding to a transplant against crossmatch.
Dr. Costanzo feels that a transplant against crossmatch is too much of a gamble for Patty. She would prefer to continue to focus on reducing antibodies and to use other interventions, as necessary, until a suitable donor heart is found. This could mean that Patty might need a left ventricular assist device, or LVAD, as a means to survive until a transplant. Unfortunately, an LVAD implantation could further increase Patty’s antibodies, particularly if they need to transfuse blood during the surgery. Our hunch is that, if Patty gets an LVAD, she may never get a heart.
Dr. Costanzo worries that a transplant against positive crossmatch (in other words, with a heart that isn’t an ideal match) could result in acute rejection and/or chronic rejection episodes, which at best could translate into a poor quality of life and at worst could mean no life at all. Doctors at UCH feel more confident about Patty’s chances if we go this route – hence, our desire to hear back from them.
On the issue of heart failure symptoms, Dr. Costanzo said that we should not attach any false hope to the fact Patty seems to display few of the “classic” symptoms of heart failure, which include severe lung congestion and tissue swelling. She said that Patty’s heart failure is every bit as severe, and less treatable, because it reflects drastically reduced cardiac output. In essence, Patty’s heart is getting tired out and will ultimately just wind down and out.
I’ll soon post another entry to share details of how Patty has been feeling, and of what she’s been doing. As you might expect, we’re feeling some distress over the answers we’re getting, and we had a few crying jags yesterday. We’ll continue to focus on the positive, though, and on making sure our patient keeps fighting the good fight.