Recently, I had the experience of being on the other side of the transplant waiting process. Having had my own double lung transplant 3 ½ years ago, I was well aware of the stress and anxiety that the patient faces. However, with my younger sister Cara’s transplant on September 8, I experienced a completely different type of stress.
Cara waited nearly a year for her transplant, with one dry run about 7 months into the wait. In contrast, I waited only 8 days for my call with no dry runs. It was very hard to watch Cara patiently waiting, and not knowing what to say to make it any better as I had not been through this particular scenario. As each month passed, my family and I became more worried that she would get sicker and a set of lungs would not come in time.
The weekend before Cara’s transplant, she was admitted to the hospital with a very aggressive pseudomonas/MRSA infection. Three IV antibiotics were started, but things did not seem to be turning around for her as they have in the past. She became more unstable, with her breathing becoming more labored, her oxygen saturation dropping, and her blood pressure climbing. After one particular scary episode when her O2 saturation plummeted, the decision was made to move her to the ICU so she could receive closer monitoring. An optimizer was added to her oxygen therapy and she was put on a bi-pap machine at night when she slept. She was not fond of wearing the bi-pap mask, but admitted that she did feel a little more rested after using it. Breathing treatments were given every 4 hours, around the clock.
The only really positive thing about these developments was that it increased Cara’s Lung Allocation Score (LAS) which meant it may be more likely that, if matching lungs became available, she would be at the top of the list for her body/blood type. We spent the weekend of September 6 and 7 praying that this would be the case.
On Sunday, September 7, my youngest sister Terri and I were watching her daughter play soccer when we got a call that there might be lungs for Cara! We both got so excited and had to contain ourselves while we watched the rest of the match. We did know from my experience and from Cara’s previous dry run, it could be quite a while between that call and when she would find out if the surgery was actually a go.
Another sister, Renee, and I and other family members made preparations to go the hospital to see Cara to wish her good luck and give her our support. It was so strange to be the one visiting and offering encouraging words like I had received over 3 years ago. We ended up spending the night in the ICU waiting room and finally got word that the transplant would not be until the next day. Cara’s surgeon personally traveled to the Midwest to retrieve the lungs and bring them back for transplant. Finally at 2:00 pm on Monday, September 8, everything was a go and surgery began. Every update we got from the surgical team was positive and after 6-7 hours, it was over. It was a much shorter procedure than mine which was nearly 10 hours and Cara received no blood during her surgery where I received 6 pints. She was ahead of me already!
One short day later Cara was off the ventilator! She had tubes coming out everywhere and was groggy from all the meds, but she knew us and despite her hoarseness, tried to have conversations. All indications from the medical staff were that she was going great.
The next day, September 10, was Cara’s birthday. Although still in the ICU and not feeling her very best due the pain, she was much more talkative and was able to enjoy some mashed potatoes and we sung Happy Birthday to her over her chocolate pudding, promising her a bigger celebration when she gets home. Another present for her that day was that 2 of the chest tubes and the line in her neck were removed.
One day later, Cara is moved to a regular room in the hospital with no oxygen. It was just amazing to see. I had complications after my surgery with a leaky thoracic duct, so to see Cara progressing so rapidly with no setbacks was so gratifying.