It’s been quite a year for 37-year-old double-lung transplant recipient “Samantha,” whose story we first shared in December 2021.
After three years of testing and hospitalizations, Samantha was diagnosed with pulmonary hypertension in 2017. It took three additional years of testing and medications for her to be pronounced “sick enough” to be added to the national transplant waiting list on Nov. 12, 2021.
That same month, Samantha moved three states away to be closer to her chosen transplant center, where she endured five dry runs before the right match was found. A dry run is when a transplant team calls a patient to a hospital because a potential match has been found, only to learn the organ is not suitable for transplant.
To Samantha’s immense relief, she received her lifesaving double-lung transplant just a few days before Christmas 2021. Here, she shares her story:
“My phone rang before dawn on Dec. 20, 2021. I was given two hours to get ready and arrive at the hospital by 7 am. Terrified and exhilarated, I did my best to stay positive as I waited, again, on a gurney while blood was drawn and stats were taken, praying that this time I would get my new lungs. I thought – IF I wake up – WHEN I wake up, I will have a foreign organ in my body. It was a shocking thing to consider.
“I said goodbye to my family and was wheeled into the operating room. I now know that I was in a medically induced coma for six days. I had three surgeries post-transplant, and for two and a half days, my chest cavity remained open so my new lungs could be trimmed and the swelling reduced so that they could close my chest cavity without issues.
“When I finally woke up, my arm flew up to my chest to reassure myself that I was alive and had made it through the trauma. It was surreal, as I couldn’t feel my hand there because so many nerves had been cut during surgery. I was disoriented, groggy, very stiff and numb. My chest ached, front and back. Six drainage tubes made it painful to take deep breaths.
“Hallucinations are common post-transplant (I found out later), largely because of the pain meds. I was also very unsure of myself. I had no answer to ‘how did I feel?’ I couldn’t make my body obey the first time I tried to sit up. I couldn’t lift my arms, either. It felt like sharp little daggers digging into my chest each time I tried.
“I also found that my muscles had lost their strength because I’d lost so much weight in the 13 days post-surgery. Trying to stand was insanely weird. I was dizzy and had trouble feeling where I was in space. I was exhausted, exhilarated and terrified of falling forward on my new chest or ‘wings,’ as I like to call my new lungs.
“Nurses gave me small daily goals. From a few steps to longer walks, then laps around the hall. It was tedious and took all the strength I had, but I knew I couldn’t leave the hospital until could complete 18 laps at a time. Looking back, I’m glad that my recovery team pushed me.
“I finally got to ‘go home’ to my nearby apartment on Jan. 9, 2022, a day before my birthday and 13 days post-surgery, though my chest was still a mass of stitches and staples. For my 37th birthday, I asked for two things – a professional hair wash (after more than 21 days!) and a hot, fresh cinnamon bun. To my great delight, both wishes were quickly granted.
“I still had to go to the hospital clinic twice a week for labs, check-ups, x-rays and bronchoscopes to check on how my body was adjusting to its new ‘wings.’ Six weeks post-surgery, the staples and stitches were removed. At that point, I asked my surgeon to share the photos of my open chest cavity from before and after surgery. I wanted proof the old lungs that had wreaked so much havoc over the past eight years had been removed and new ones were in place. The photos were mind-boggling. That night, I slept soundly for the first time – without stitches, a tangle of tubes or beeping machines.
“Then, on to rehab for the next eight weeks. Hard, but necessary work. I had another great medical team helping me gain strength. After another six weeks and tons of tests, I received clearance to move back to my actual home several states away – even though I was still in mild rejection. As soon as I knew I was home-bound, I got rid of all the pulmonary hypertension meds and oxygen tanks. I never wanted to see them again – and it was cathartic to pitch them!
“Another huge steroid blast at the end of June helped tamp down my immune system response and pull me out of rejection. Finally, in September 2022, my body relented and fully accepted my new wings. I was no longer in rejection!! Yeah! This transplant was working!
“Today, I have post-transplant hospital visits every three months. Soon, that will stretch to six months, then nine, then yearly. I have a bit more perspective as I approach my one-year ‘lung-a-versary.’ I have been working out and feel so much surer of my body. I still sometimes feel weak, but by and large, my stamina is good.
“My family and I thanked each member of my transplant team with a chocolate lung-shaped lollipop. I also nominated my favorite day-shift nurse for a hospital-wide award of excellence. She had made a huge difference in my life post-transplant, and I was so pleased to see her win. She deserved it.
“On Dec. 21, I will send a letter to my donor’s family. I’m incredibly grateful to them and want to honor the life of my donor. I’m also in awe of how far science has come and that this lifesaving procedure was even possible for me. I am about to play major catch-up on the eight years I lost due to pulmonary hypertension disease, and I couldn’t be more excited about my gift of life. It’s not about to go to waste!”
As of November 2022, the Organ Procurement and Transplantation Network (OPTN) reports approximately 979 patients across the U.S. are on the national transplant waiting list for a lung, with about 2,225 lung transplants performed so far this year.
MediGO is proud to play a role in these lifesaving transplants by optimizing the response times of organ procurement and recovery teams and ensuring the safe and timely transport of organ shipments. To date, MediGO shipments have reached more than 50% of the nation’s transplant programs.
To learn more about MediGO and how it’s innovating and collaborating to maximize donors’ gifts and eliminate the waiting list for organs, visit gomedigo.io.