I’m Aware That I’m Rare: Sarah Sizemore (439)
the phaware® interview
Former pulmonary hypertension patient, Sarah Sizemore discusses life 1 year post-lung transplant surgery.
My name is Sarah Sizemore. I’m 22 now, and I live in South Carolina. My connection with pulmonary hypertension is I was diagnosed with idiopathic pulmonary hypertension since age four until I was transplanted on October 31st of 2022. I was on IV Remodulin. I was on several oral pills for pulmonary hypertension. My symptoms started to become unmanageable, and I was maxed down on all therapies. My PH specialist said the next option is really lung transplant, as there wasn’t really much to do anymore, as I was already on so many aggressive therapies. So it was kind of time. Around early 2021 is when I really started to decline. So we started that process.
The process for a lung transplant was really fairly easy and quick, as I was declining so rapidly. So the MUSC transplant team tried to make things go very quickly. I think within two months, I was listed, and then I received my double lung transplant, I think, a month and a half on being on the UNOS list for organs. I think the decision for me was pretty quick. I would take it as if there’s any slim chance that I could have a life without pulmonary hypertension, no matter how risky a transplant is, to me, that was a risk worth taking. As I’ve had pulmonary hypertension in my entire life, there was this option that could provide a life without PH, and I really wanted to pursue it. It’s not an easy journey. It’s difficult. I mean, it’s a major surgery.
When I would talk to post-transplant patients before I got my transplant, they describe it as trading one illness for another. It’s kind of like that, just because of all the risks that come with transplant. But every single person that I talked to pre-transplant said that they would do it again in a heartbeat, just because the amount of life that they were able to live post-transplant. That really made the decision for me. So when I was told that it was time for a lung transplant, my immediate decision was that I wanted to pursue it, just due to the fact that I could have a life without pulmonary hypertension.
My recovery was fairly easy and smooth. I was out of the hospital within two weeks. I really didn’t have any complications. It was a big surgery, so there was some hard recovery. But I really didn’t have any complications. We thought I was going to need ECMO due to how severe my pulmonary hypertension was. I ended up not needing that at all. I was breathing on my own within two days post and then walking like within three days post, and then, I was discharged at two weeks. Lung transplant patients have to go through pulmonary rehab and physical therapy post-transplant due to just how big of a surgery it is. It takes a toll on your body.
I’ve had PH my whole life, so I had to relearn how to breathe. I was used to taking short, shallow breaths, but with new lungs, you need to expand them and really take deep breaths. So pulmonary rehab really works on breathing and helping you adjust to exercising with these new lungs. With new lungs, you really have to exercise every day to keep them in shape and keep them physically fit and open. So it’s pulmonary rehab. You do it for three months post-op, but I haven’t stopped doing pulmonary rehab since my transplant due to just some complications. I love it. It’s a controlled environment. Everyone knows me, and they really care about me.
Then, around March, I ended up getting COVID. I had that for seven weeks due to not having an immune system. We have to be on immunosuppressants so we don’t reject our lungs. So I had COVID for seven weeks. I really didn’t get sick at all. My lungs were just that strong to handle it, but unfortunately, the risk with getting an illness is your body wants to fight it. So it gives antibodies, but that can also wake up your lungs and your body, and your body say, “Well, these aren’t my lungs.” So I unfortunately went into acute rejection in May and respiratory failure, having rejection due to the COVID. That caused some scarring and damage, just to being such a traumatic event. So that damage is unfortunately permanent, and so I will need another transplant soon due to the scarring. But transplant has changed my life in just 10 months, so I would do it again in a heartbeat.
With having COVID, it decreased my lung function, which is 36%, and so that unfortunately isn’t going to get any higher, just due to the scarring and damages. I have some new conditions with these new lungs. It’s not a problem with the pulmonary arteries anymore, like with pulmonary hypertension. It’s now with the vessels and the airways. So that has caused scarring and damage to that. That is what’s causing low lung function. It’s just only going to get worse over time. My function has to drop a little bit more to be listed for a second lung transplant, just due to UNOS’s rules and everything.
One year post, the journey has been incredible. It’s been a year full of getting to experience things that I’ve never been able to, like swimming, because I was always on IV. I was running five miles a day, just so many things. I mean, and breathing, I felt what it feels like to be able to breathe normally, which was huge. Just so many things that you never think you would get excited to experience. I’ve fallen in love with exercise and actually being able to do that. So, I mean, each month has been something new that I’ve discovered I can do. This transplant has just been life-changing.
October 31st will be a year. Then the year ahead is probably a second transplant, which I’m completely fine with, as I would do it again in a heartbeat. It’s just another chance to get to experience those things all over again, which I’m looking forward to.
So I have a golden retriever, Hudson. He’s two. I got him around the time when things started to decline. He has completely changed my life. I mean, dogs can save people’s lives, and he definitely saved mine. Those years were rough, and then going into transplant, he was such a comfort and everything. He’s a golden retriever, so he has so much energy. He loves playing ball and swimming. He made sure to take me out and make sure I got exercise to keep strong for transplant. Now, post-transplant, I’ve gotten to take him on big adventures that we’ve never been able to do, which is such a blessing. I call him my furry soulmate. I mean, he’s my soul dog. He’s my whole life. I mean, I couldn’t imagine doing this journey without him. He loves life and loves adventures.
The advice I would give is to trust your instincts. I know it’s terrifying, and it’s scary. I mean, I felt all of those things. It’s such a big journey, but each second and minute that you get to experience a life without whatever disease you have, is so worth all of the hard milestones.
The biggest thing for me was getting to carry on my donor’s legacy in life. Now, I am living for myself and my donor. They have given me this chance, and that’s the biggest thing. Then, just talk to other transplant patients that have gone through it, because that was the biggest support for me, was just speaking to other transplant patients. They gave me tips for surgery, how to make it comfortable post-transplant. They gave me so many tips that now, being out, I was like, “Wow. That really helped.”
Really take care of yourself, too, because it is a big journey. You want to be strong mentally, really mentally and physically, but mostly mentally, because it is a big journey. Just take care of yourself. Prioritize yourself. Take time for yourself to process and everything. Trust your medical team. It’s scary, but they do what they do best. I was really at peace when I had my transplant, because I trusted my team. I was just so ready to have a second chance at life. I think that’s the biggest thing I would say.
My name is Sarah Sizemore, and I am aware that I’m rare.
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