On Tuesday September 9th I was put on the transplant list for double lung and heart as status 1A. Exactly one week later on the 16th I had my transplant. They took me to the OR at 2pm and I was back in the ICCU around 2:30 in the morning. I was lucid by 10am or so. After my transplant I stayed in the ICCU for exactly 2 weeks. On Tuesday September 30th I was taken to the main floor where I stayed for another week. I was discharged from the hospital on Tuesday October 7th. I was in the hospital for 5 weeks. Seemed like forever, but I guess in the big scheme of things a lot happened in those 5 weeks.
While I was waiting for my transplant and was hooked up to ECMO, I was fully lucid, talking, eating and they even made me sit up and stand 3 times a day. Apparently this is very uncommon. Most people on ECMO are not concious. I had no clue. One of the doctors was going to a conference and was going to present on PH so he asked permission to take a picture of me standing while on the ECMO machine. Somewhere out there people have seen me in my hospital gown standing up while on ECMO. Weird.
Usually when people have just a lung transplant they do what is called a ‘clamshell’ incision where they cut a long flap under your breasts. OUCH. Since I already had my sternum incision from the heart surgeries they used the same opening. The ‘clamshell’ incision is supposed to be more painful in recovery but the healing is easier. The sternum incision I had isn’t painful, but it takes time for my sternum to heal properly after being cracked open multiple times. The philosophy of the head transplant surgeon is not to give narcotics to lung transplant patients because it increases the risk of infection significantly. For people who had the clamshell incision they give an epidural in the mid back for pain relief. Me? I got Tylenol.
My mom found out through waiting room gossip that the kidney from my same donor was transplanted on a patient in the same hospital. Unfortunately he had complications that affected his heart so he was put into the ICCU and hooked up to ECMO after transplant. Sad. I hope he makes it out okay.