Look Ma, no hose!
Seven weeks ago today on April 15, I had a double lung transplant at Barnes-Jewish Hospital in St. Louis. And what an amazing, confusing, awesome, scary, thrilling, crazy, frustrating, inspirational seven weeks it has been.
I will dedicate a series of posts to my transplant experience. And yes, I will be giving you all of the gory (and not so gory) details. On this, my first post following my transplant, let’s dive in at the beginning — the Call and the Surgery.
A little background first:
I’d been in the hospital for about a week, trying to stabilize after an exacerbation of my IPF. I was on the Optiflow, a special machine that heats and humidifies oxygen, at a flow equivalent to 20 liters. Moving required the addition of another 15 liters via E tank. The Friday before transplant, my doctor had basically given me 3 to 6 months. In short, I was fading fast.
At the same time, we were discussing plasmapheresis, a procedure that runs the blood through a machine to remove and temporarily suppress the production of antibodies. My heavy antibody load, which ruled out 78% of the general population as potential donors, was making it difficult to find a good match. Pheresis was a 50-50 shot, but it was the only option we had left to try to improve my chances for transplant. When I think back now, I wonder why we agonized over this decision — it should have been a no-brainer!
As it turned out, I never went through pheresis. About 10 minutes before I was to start the procedure on Monday, April 14, my nurse Leann came in and told me, “We might, might, might, might, might have a donor for you.” (Yes, there were 5 “mights”. I counted them.)
The moment I heard there might be lungs for me.
When Leann walked in, I was finishing up pulmonary rehab and Yvonne, my therapist, had just quipped, “Either I’ll see you tomorrow or you’ll be getting new lungs.” Yvonne was just one of many little Divine Messages that came through during that life-changing 24 hours.
The news sent an electrical current ripping through my body, from the top of my head to the tips of my toes. My first comment was, “Really?”, followed by a huge grin. Not exactly the brilliant statement I’d dreamed about, but I was caught completely off-guard. I looked over at my husband in disbelief, then quickly took a deep breath and reminded myself we had a long way to go before those five “mights” became the real thing.
An hour later, Leann announced we were moving forward. I burst into tears and made a soggy mess of my husband’s shoulder. Though we were far from a solid “Go”, we were on our way to finally realizing what we’d been working toward for so long. At the same time excitement and emotion overwhelmed me, my heart broke because I knew someone had died suddenly and their family was wrestling with one of the most difficult decisions they would ever face. I bowed my head to pray — for them, for my donor, for my family and for me.
Homework helped pass the wait.
I went down for pre-transplant testing — blood tests and a chest x-ray. And then we waited. About 10 p.m., I learned that I would be going down to surgery at 2 a.m. It was a go. Another miracle. They’d found a donor who had almost no antigens — my antibodies suddenly were a non-issue.
The next four hours were a blur of texts back and forth to my family on the West Coast, as well as prayers and good wishes from my Facebook friends across the country. Two a.m. finally came and we headed downstairs.
Waiting in pre-op. The family is sitting in front of me, munching away!
I was the only patient in pre-op, so my family was able to sit outside my cubby and chat with me. What I remember most is the sound of munching — they were chowing down on chips and soda. I, of course, had had nothing to eat or drink since around 2:00 that afternoon. My stomach rumbled mercilessly. But the mood was upbeat, and when my surgeon arrived, he announced that he’d had a good night’s sleep and a full breakfast. He was ready to go.
Surgery was delayed three times as more transplant teams arrived at the donor site. The generosity of my donor family cannot be overstated. Because of their selflessness, they turned a profound loss into a second chance at life for many others. I am eternally grateful!
All the instruments, prepped and ready!
I went into surgery sometime around 6 a.m. on Tuesday, April 15. I’m a little fuzzy on times and details because by then they’d given me a happy shot. I remember sliding over from the stretcher to the operating table. One team member read off the names of everyone there and what their job was (they tape the entire procedure). And then they placed a mask over my face and in seconds I was out. I’d sent a disposable camera into the OR with my surgeon, the amazingly gifted Dr. Bryan Meyers. The photos below are from my surgery:
Heart-lung bypass machine
The heart-lung bypass machine. In some transplants, they can let one old lung do the breathing while the other is removed and a new lung transplanted. My old gaspers were in such bad shape they had to use the bypass. I received my very first transfusion because the bypass requires extra blood volume. Technology is simply amazing!
My diseased right lung. It’s amazing that something this dark and shriveled could process any oxygen at all. Can you say “God’s perfect timing”? I couldn’t have waited much longer.
Pink, shiny and perfect new lungs!
My shiny new lungs! The one at the bottom is still covered in its protective cloth. They’re so pink they almost glow! Angie, my scrub nurse, said she’d never seen lungs so pink!
Dr. Meyers performing magic!
Dr. Bryan Meyers implanting my shiny new lung. This photo brought tears to my eyes — at last, no more gasping. This moment marked the beginning of a brand new life for me!
Angie gives us the thumbs up — all went well! I know this is me because I recognize the feet!
Old lungs off to the research lab.
My old lungs, ready to go to the research lab. I donated them in hopes they will help researchers discover better treatments or even a cure for pulmonary fibrosis. The small container at the top includes unused pieces from my new lungs. Since my donor was 6 feet tall and I’m 5’4″, Dr. Meyers removed the upper lobe of my new left lung and did a wedge resection on my right. The day after my transplant, Dr. Meyers went back in to remove some packing and clean up any blood clots or incidental bleeding. This is standard procedure at Barnes in many lung transplant cases. He saw that my right lung was still a little too big, so he removed a second wedge. I’m happy to say that they fit perfectly now and are working beautifully.
By 1:00 p.m. I was out of surgery. The whole thing took about 6-1/2 hours. I remember nothing until they removed the breathing tube on Friday, April 18 — Good Friday! But that’s a story for another post…
Before I go, I want to thank everyone who prayed for me, sent me notes of encouragement and positive energy, and offered advice and insights from the perspective of “being there.” I couldn’t have done this without you. And to my donor family, thank you for giving me life. You are and will remain in my heart and in my prayers forever.