As frightening as the onset of ADHF can be for those watching, it’s even more frightening for the patient. They can feel themselves deteriorating and there is nothing that can be done. Fortunately for us, Boston EMS and Boston Fire have stations about one hundred yards from our home and can get here quickly.
Tracie was listed as a heart transplant recipient in February 2011. Since then, for ten month our lives became concerned with ADHF and the call to get to MGH for a transplant. We got that call twice last year, in late October and again in early November. Both times were a no-go for different reasons. While being very grateful to be called, it’s difficult not to suffer a serious let down when we find out that today isn’t the day. If it were just a simple drive to the hospital and get it done, that would be fine. However, with four children, it becomes more involved.
Take yesterday. Tracie was out with the kids and MGH called her cell phone and told her it was time. She had to tell them they weren’t going to the mall; rather she was going to the hospital. The older kids get it, but the five-year-old lost it. We did manage to calm her down, and then send everyone to invade my mom’s house for at least one night, possibly longer. Eric drove to Mom’s as Tracie and I got things together for our journey.
Once again, up to Ellison 8, the Cardiac Surgical Recovery Unit. We got there about 1:30 in the afternoon. It’s nice, but somewhat sad, that the nurses on the floor know us by name and face. We’ve spent some time there. Here’s your room, put the johnny on…you know the drill. Lots of tests were run, just the same as last time. After a while, more senior members of the Transplant Team began to come in and explain the process. We give this medication
for this, that medication for that. We were further into the process than ever before. We became cautiously optimistic that this would happen. Chest X-Rays, blood tests and an IV. We were told that if all goes well, she
would be in the OR about 7:00 PM.
We made some phone calls, and sent very few texts out. We’ve learned from the past as far as sending out to much information. It hurts when you have to unsend it. We sat in the room, watching TV, and waiting. Team members and nurses continued prepping Tracie. Finally at about 6:30, a team surgeon came in and told us….not this one. Some antibodies didn’t match up too well and while they could transplant, it would increase the chance of rejection. With the LVAD function fine and Tracie doing pretty well, there was no urgent need to use this particular heart and they would give it to another patient who was a better match. We left there at about 7:30 and headed home.
The staff was supportive, trying to keep us up. But there is a letdown. We were at the point where we were certain Tracie’s transplant would happen, and it didn’t. It takes a little time to bounce back. We will bounce back, there is no choice. Life goes on, delicately, day by day, but it goes on. So, we’ll go on waiting once again for the call. When it comes, we’ll head over, knowing that one day, our day will come.