We have realized in the past month or so that this whole journey has a lot in common with a roller coaster ride. Moving unbelievably fast, unexpected twists and turns, tedious uphills that you know will be followed by sudden drops, breathlessness and confusion about what is actually happening. So we were at Duke on Wednesday, 6/24, for a regularly scheduled follow-up with the transplant cardiologist. (We also had another visit at the research clinic and a planned echocardiogram as part of that protocol, even though Tami isn’t taking the trial drug anymore.) The transplant cardiologist (yes, Tami’s favorite, favorite doctor! :-) ) asks how she’s feeling (still not as much stamina as before), arranges (with some difficulty and several consultations with a nurse) to get Tami’s next Hepatitis B vaccine, answers a few questions Tami has about her medicines and condition (all good), checks the PICC line (it’s in really good shape), puts in prescriptions to modify a couple of medicines to try to help with congestive heart failure symptoms (ok), then says “let’s get some blood cultures so we can be sure the infection is still gone” (remember that this was the reason for our last hospitalization) “and then we can get you listed.”……….Wait, what? Wasn’t she already listed?!?? Well, yes and no. Huh?? They can’t/won’t transplant with an infection (of course), and all of the cultures we have had done before were while Tami was on antibiotics. Right, and the antibiotics had already cleared the infection before we left the hospital, and that’s why we were told that she was listed. Well, sort of. (You got that roller coaster feeling yet?) Tami has been on a “side list,” and, as it turns out would not have been called in the past 19 days even if she had had a match because she hasn’t been on the “active list.” Which we had never heard before. And that final move to the “active list” requires that the blood cultures are still clear after finishing the antibiotics. Which we had never heard before. Sigh. So, as long as the cultures are clear (again, for the third or fourth time again) by Friday, then Tami WILL be on the active list and could (then, finally, yes) actually get a call any time if a matching donor heart becomes available.
Well, that discussion was at the end of a long day that seemed to be made longer by lack of communication among various players in the research unit where Tami had previously been doing a drug trial. When she started the at-home IV med back in May (during our first hospital visit this year, when we did all of the transplant work-up stuff), she was no longer qualified for the trial (ok, that’s fine, just a few less trips to Duke for those follow-ups, but we’ll be going more often for transplant follow-ups, so it’s kind of a wash). But some time after that, the nurse coordinating the drug trial called to say that the drug company still wanted additional blood samples, EKGs, echocardiograms, etc., even though Tami is not taking anything at all (either trial drug or placebo), so could we still keep the last two research unit appointments? Well, since we were coming up anyway, they scheduled a visit for Wednesday – no problem, come in the morning, have some blood drawn, have an EKG and an echo, let the dr see you for a quick evaluation, complete the paperwork, get paid for a visit, and still have time before the afternoon visit to the transplant cardiologist. Sounded easy, didn’t work out that way. Let’s just say lots of communication problems, and, in the end, Tami will still have to do an echo at the next (and last) research appointment. Which, of course, can’t be the same day as the next follow-up with the transplant cardiologist. (Are you tired yet?) And we got onto the freeway at 4:55 which was a terrible idea! :-(
News? None really – Tami should be on the active transplant list by the end of the day Friday, a couple of new and modified meds, return visits in 4 and 8 weeks and about every 4 to 8 weeks thereafter until the transplant. Be sure to collect all of your personal belongings as you exit the ride. And thank you for continuing to pray for us and to support us in every other way as well on our journey.