May is Cystic Fibrosis Awareness Month: Leah’s Lung Transplant Story
Posted on May 26, 2016 by admin
While we originally tried to share Leah’s story during Organ Donation Awareness/Donate Life month in April, sometimes life happens. We’re happy that her story is equally fitting for Cystic Fibrosis Awareness Month, which is May! I was fortunate to follow Leah’s lung transplant story over the last couple of years–while Leah has definitely had some speed bumps on the journey post transplant, she’s always excited to share her story–I’m excited to be able to share her story here today! Thanks, Leah–take it away!
Hi Leah! Tell us about yourself.
I am 24 years old. I have 2 younger sisters, neither of which have Cystic Fibrosis [CF]. Katie is 19, lives with her dog, cat, 2 birds, and a human roommate. She is currently in nursing school. Abby is 21, she lives off campus with her roommate. She is in school for international studies with a focus in the middle east and a minor in Arabic. I live with my mom and 2 dogs. We have an 11 year old greyhound named Penny. I recently got a puppy. He was born December 4, 2015. His name is Sherlock Holmes and he is a Bernese Mountain Dog. This is my first puppy, and they are A LOT of work! I’m not in school right now, but I plan on going back. I want to be a forensic psychologist. I love to read. I am never without a book, there’s always one in the room.
We LOVE puppies around here at My Identity Doc! :]
Before we launch into the transplant part of your story, can you tell us a bit more about cystic fibrosis? What did life with CF look like when you were younger, and how did that change?
Cystic Fibrosis is a life-threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe. In people wit CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.” This comes directly from the CF Foundation, cff.org
When I was younger, you wouldn’t have known I was sick. I was a pretty active kid. I played outside a lot with my sisters. My mom would have to drag us inside for dinner. I played sports, basketball (which I sucked at) and I swam (which I was amazing at). I rode my bike around the neighborhood, climbed trees, typical kid stuff.
There were a few differences between me and my sisters and friends. I was always the last person to be dropped off at sleepovers and the first one to be picked up. I had to go home and do my breathing treatments. I took pills when I ate and through out the day.
I was a pretty healthy kid, well healthy for a kid with CF. I was hospitalized when I was 2, then not again until 3rd grade. The older I got the more frequently I was hospitalized. It got to the point where I was in the hospital more than I was home.
Like many with CF as they get older, eventually you needed a lung transplant. I remember following the excitement when you got the call for your new lungs! Can you share more about that, and the rest of your transplant experience?
I was waiting for lungs for about 4 years. I was at a center that played games, they seemed more intrested in money more than patient care. I felt like a number. I started looking for other places. I found and was listed [for transplant] at Ohio State University [OSU] in Columbus, Ohio. This center made me feel like a person, not a number. I got the call that they had lungs for me 1 day shy of 2 months after being listed.
I had just gotten out of the hospital, and I still wasn’t feeling the best. I had an appointment with OSU the next day, just a checkup type thing. I was complaining because we would have to leave early and I wanted to sleep in. I’m asleep and I hear my mom talking loudly on the phone right outside my room. I couldn’t really hear the whole conversation, but I heard things like “Are you serious?” “When should we be there? You’re not joking?” Then she comes in and tells me that my lungs are there. I ignored her because I thought she was messing with me. I probably said a few choice words about being woken up at 2 in the morning, but I realized she wasn’t joking I think I literally jumped out of bed.
On the way to the hospital, which is about 2 hours away if traffic is good, I called my sisters, cousin, and best friend. I had to call them several times to wake them up, and some thought I was joking, so my mom called them and told them I was serious.
There was still a chance that this would turn into a ‘dry run’ which means something was wrong with the organ. When the doctors go to pick up the organ, they inspect it, if it looks okay they bring it back to whatever hospital they came from. They inspect it again and if it still looks good, they transplant it, if there is any imperfection or they see something they don’t like and don’t think there would be a good outcome, they don’t transplant it, and you go home. I never had a dry run.
The surgery lasted about 7 hours. 4 of those hours were getting my left lung out, they literally had to scrape it off my ribs because of all the scarring. My left lung has always been “the bad one.” The surgeon came out to talk to my family and told them that I was a lot sicker than anyone thought, clinically I didn’t look as sick as I was and I didn’t feel as sick as I was. He said that just by looking at my old lungs, he would have given me 4-6 weeks to live.
My recovery was pretty rough. Things that weren’t supposed to happen, happened. Things that they have never seen, and some things that still to this day don’t know how or why or even what happened.
I am so beyond grateful for my donor. I would not be typing this right now if it was’t for them. I hope one day to meet my donor’s family and friends. I hope I’m doing my donor proud.
Before your transplant, I’m sure you imagined what life would be like with new lungs–how has your life changed since recovering from transplant? How has it been different than you maybe anticipated?
The most obvious change is that I’m able to breathe without struggling. And really, it’s the little things, the things most people don’t give even half a second to think about. Being able to get dressed in a few minutes vs 30+ minutes not because I couldn’t decide what to wear, but because it wore me out. Being able to walk to the kitchen to get a snack or a glass of water, where before my oxygen tubing barely reached. Being able to take my dog outside. Being able to go places and not having to recover for days. Being able to walk from one end of the house to the other without stopping to take a break and gasp for breath. Being able to go places without oxygen and a wheelchair, where before I would have to use a wheelchair everywhere we went. Those are a few ways my life has changed.
It’s also different than I expected. I had a lot of complications that were unexpected. The most major being my kidneys. They think during surgery my kidneys went into shock, which can happen. They were counting on them waking up, but they haven’t. I’m doing dialysis 4 times a week until I get a new kidney. Because of that and a few other complications I was in the hospital longer that most and I lost a lot of muscle. Because of all that, I’m not as far along as I would like to be. There’s still a lot I need help with. And that sucks because I want to be a normal 24 year old, but I can’t be. At least not yet, but I’m determined.
You’re of course a strong advocate for organ donation–you’ve recently celebrated your first year with new lungs! How do you work to encourage people to hopefully become donors?
I love sharing my story with everyone. I love showing my scars. I love when people ask questions.
I’ve learned that most people who are not donors have some fear that usual turns out to be untrue. For example: people are afraid that if they’re in a car crash or go to the ER, the paramedics or doctors won’t work as hard to save them because they want their organs. This is untrue. It’s not the doctors who deal with donation, it’s a totally different department. The doctors job is to save you, donor or not. The more people question and talk about why they aren’t donors, the more they learn, and hopefully the more people will sign up.
I also volunteer with Life Center, which is my local organization that goes around to different places and events to raise awareness for organ donation. I love doing it. I love talking to people about my experience and I think it helps people see that organ donation does work, gives a face to donation.
Thank you SO MUCH for sharing with us, Leah! Any final thoughts?
If you have a fear or something holding you back from being a donor, ask questions, do research. A lot of people think sick people or organ recipients don’t want people asking questions. Parents hush their kids when they ask “what’s that?” When someone is wearing a mask. This couldn’t be further from the truth. It’s been my experience that 99% of people want you to ask. I love when people ask, I encourage them to ask anything. Even if they think it’s dumb, I don’t. The more awareness I can bring, the better.
A great point, Leah! I’ve also found the same to be true—people living with different medical conditions that may be visible for some reason, would rather be given the chance to personally educate someone about their disease, rather than not become aware of what others deal with!
Like Leah, I believe strongly about organ donation—if you haven’t, discuss your wishes to become an organ donor with your family and friends, sign up with your local registry, and indicate your wishes on documents where applicable. In addition to my medical information, I’ve also had ORGAN DONOR engraved on all of my medical ID pieces—it can also be a great conversation starter!