Letter to Patty's doctors

Hi everyone:

Patty and I composed an email to her doctors this morning, out of a desire to have as complete a picture as possible of their thinking about future options. We want to be as open and thorough as we can with those of you who are reading the blog, so we share below the letter. We'll keep you posted as to what, if anything, we hear back.

Love,
Brian

Drs. Costanzo, Fedson & Anderson:

We wanted to write a note to express some of our concerns, opinions and questions about Patty’s current condition and future care. Before we get into specifics, we did want to say that we’re entirely grateful for your efforts on her behalf so far. The sense we get is that you are aware of Patty’s needs as a person as well as her needs as a patient, and for this we are most appreciative.

We understand that there are dilemmas that may affect future decisions, particularly if Patty’s PRA levels remain high. We have done a fair amount of research, both on the Web and through conversations with doctors and nurses in our family, and are trying to put together as complete a profile of Patty’s options as possible. We know that, sometimes, a little knowledge can be a dangerous thing, because it leaves open the door to misinterpretation. We’re hoping you can confirm and/or clarify our understanding.

Option One – Stay the course?
If we’re getting this right, one option would be to try other methods to reduce Patty’s antibodies, and just try to hang on through the wait. For example, Dr. Costanzo offered that total body irradiation could be considered as a last-ditch attempt to reduce antibodies. As part of this wait, we might need to consider other means of support, including a balloon pump and/or LVAD. The concern here would be that these devices might increase her antibodies even more, putting a viable transplant further out of reach. Are we accurate in our understanding of this? The skeptics within us are inclined to believe that an LVAD would end up being the last real intervention we could make on Patty’s behalf. When we last met with Dr. Costanzo, she had suggested that Patty may not live much longer with the heart she has, without some form of significant assistance.

Option Two – Transplant against crossmatch?
Another option, if we’re clear on things, would be to transplant Patty against positive crossmatch, if needed, and focus then on finding the right combination of drugs to protect her against rejection episodes. Our biggest worry (and question) here is – if Patty has a history of faring so poorly on many of her medications, including CellCept, are we likely to encounter a problem that we cannot turn back from? Is it possible that we could do some sort of a trial run with samples of these post-transplant medications, just to see how Patty tolerates the drugs? Our biggest fear about this option is that Patty will succeed on the operating table but fail miserably when she starts taking the drugs that will protect her future. This worry would be compounded, then, if she needs to take significantly higher doses of drugs because of transplanting against crossmatch. Are we accurate in our description?

As we think about these options, it seems like we’re collectively facing some sort of medical Catch 22. We hope that you will always be brutally honest with us about the potential outcomes of any of these choices. In other words, if you’re having conversations behind closed doors where you’re saying, “This doesn’t look good,” we don’t want you adding a positive spin when you’re speaking with us. We trust your judgment, but always want to be a part of the conversation.

We have heard doctors from both venues suggest that Patty may need to be hospitalized for an extended stretch in the near future, if her nausea does not abate. For many reasons, we would very much like to try just about anything else before we come to that conclusion. This latest combination of drugs seems to have had some modicum of success in reducing the nausea, so we’re hopeful we can keep tweaking this mix until we find just the right solution.

And now for a somewhat morbid inquiry. From much of what we’ve read, it sounds like most people who are dying from heart failure experience profound edema and lung congestion. Neither of these symptoms have been significant through Patty’s travails. If none of the solutions we are discussing end up being viable, should we anticipate these problems to be in her future? In other words, is Patty not profoundly sick at this point? Or is it possible that her heart could just basically, for lack of a better term, “wind down?” What we’re going for here, we guess, is a ballpark estimate of how long Patty will likely sustain without major interventions, along with markers we should be looking for along the way to suggest the problems are getting worse.

If there are other factors concerning all of the above that we may not have considered, could you please share them with us, so our understanding of the situation is as complete as possible? Again, thank you so much for all you’ve done, and for all you’ll be called upon to do in the weeks and months ahead.

Regards,
Patty & Brian O’Mara-Croft