What It’s Like to Get a Double Lung Transplant in Your 20s

Tiffany Rich was diagnosed with cystic fibrosis at birth in 1989. She received a double-lung transplant in November 2016, and has been in recovery since then. She enjoys helping the cystic fibrosis community through her YouTube channel Lungs4Tiff, her joint Instagram account with Lea Faraone @SaltyCysters, and her podcast Breathe In: A Cystic Fibrosis Podcast .

I’m a typical 29-year-old girl: I love makeup, I love to shop and do outdoorsy things. I also happen to have cystic fibrosis, which is a terrible, life-threatening lung and digestive disease. I had to have a life-saving double lung transplant for it on November 30, 2016.

Cystic fibrosis is genetic: Both of my parents were carriers of the disease, so they had a 25 percent chance of having a child with cystic fibrosis. That’s me. The disease causes a buildup of sticky mucus in the lungs that we can't get out, which causes bacteria to grow. When bacteria stays in there, it gets infections, which scar the lungs. The scarring is irreversible, so it makes lung function progressively decline to the point where you can't breathe—and that's when you need a double lung transplant. Cystic fibrosis also affects the sinuses, some of the reproductive system, and the digestive system. We have to take artificial enzymes in order to digest food.

Cystic fibrosis is an invisible illness. We can look really good on the outside, but on the inside, we’re dying. We can have a really good day and be able to do a whole bunch of stuff, but the next day, we can be bedridden. I don’t think people understand how much it takes from you emotionally and physically. Before my transplant, I spent a lot of time thinking about my health. I was doing probably more than four hours of breathing treatments and vest physical therapy every day. The treatments help open the airways and maintain our breathing. The vest shakes our lungs in order to loosen up all that mucus so we cough it up. Closer to transplant, I was getting infections every two to three weeks, and I was on IV antibiotics every day, every eight hours.

Cystic fibrosis is a very lonely disease. Other diseases have support groups where people who are affected can go to talk. If people who have cystic fibrosis want to be around other people with the disease, we have to be at least six feet apart because we can give the bacteria in our lungs to each other. If I had a certain infection that was resistant to a lot of medication and I gave it to someone else with cystic fibrosis, they would catch that resistant bug.

Because of cross-infection, we generally have to rely on social media to be with each other. I’m so fortunate that we have these big communities because I was able to find people who I could actually talk to, and they would know exactly what I was going through. They could say, “I know that sucks, and this is how I handled it,” or “This is how we can handle it together.”

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On apps like Instagram, I’ve been able to talk to a bunch of people with cystic fibrosis, especially my best friend, Lea. In 2015, I did a viral post about wanting to meet Taylor Swift because I wanted to raise awareness. I did meet Taylor, which was amazing. I started gaining followers and people telling me how much of an inspiration I am to them. That gave me so much satisfaction that I wanted to keep doing it to help the community—not just the cystic fibrosis community, but the whole chronic disease community and the people who are their friends and family.

Lea slid in my DMs after her friends sent her my Taylor Swift post. I have a YouTube channel, too, and one video I did was about my reaction to being told that I needed to be listed for a transplant. Lea happened to see that. She sent me a message telling me that she had just been told she needed to be evaluated for a transplant, and she watched my video a week before and it made her feel more prepared for that appointment. Thankfully, she doesn’t need a transplant.

That’s when we started bonding. We realized we had similar interests and were basically the same person except we’re 3,000 miles away from each other—I'm in California, and she's in Maryland. After that, there’s not been a day that we haven’t texted or called each other, except when I was in surgery. She’s one of my rocks—we're able to understand each other on a different level. I could have this horrible day where I couldn’t walk five feet, and no one would understand how I was feeling—like a burden to family and friends because I couldn’t go do things and they had to stay home with me. You can’t really express that to someone who’s not going through it, as well.

I was told I needed a double lung transplant in 2013, right before my birthday. I was devastated. I was kind of involved in the cystic fibrosis community a little bit then, doing fundraising and posting here and there about the disease, but it wasn’t to the extent that I do now. Once I learned I needed a double lung transplant, it got kicked in my head that we need more awareness. I was scared and didn’t know about lung transplants or transplants in general.

After going through the process and getting on the transplant list in 2014, I became an advocate because no one’s talking about it. No one knows what cystic fibrosis is and how severe it is. And people don't know about organ donation at all. They only understand what they want to, and they don’t know the facts.

With organ donation, you can save eight people’s lives just by signing up. A lot of people think that if you’re an organ donor and you go to the hospital, they won’t want to save you, but hospitals don’t know if you’re an organ donor. They will try to save you as much as possible. If you’re deceased, why not save eight people’s lives?

Getting a transplant is no joke—it weighs a lot on you. It’s a long process of checking to make sure all your organs are strong enough to go through the surgery. They do a procedure called right heart catheterization to check the pressures of your heart to make sure it’s strong enough. They do a lot of CT scans and check your esophagus to make sure you don’t have acid reflux. They go through your whole body—you have to make sure you’ve seen the dentist, the eye doctors, everyone.

When you’re done, they send all the information to the hospital board and the board looks through it to see if you’re a good candidate. If everything checks out, the board approves you, and then you go through a process to make sure you’re emotionally and mentally ready. During the teaching process, you go through what’s going to happen, what you’re going to need to do, what’s going to happen after. It’s a lot of information to take in, and I was drained afterwards.

When that’s all done, the hospital calls to tell you that you’ll be active on the transplant list. They check your insurance and call back with your UNOs score—your lung allocation score. The scores go from 0 to 100. Zero means you’re perfectly healthy and 100 means you’re dying now. The recommended window for a transplant is 35 to 45 because that means you’re healthy enough, but sick enough. They also put all your information, like your blood type, lung function, and size, into the system because the lungs have to fit you. I waited 973 days on the double lung transplant list. When I got the call, my UNOS score was 44.22.

Before transplant, the doctors say to get your body as ready as possible. I was in pulmonary rehab, where the respiratory therapists watch you work out, make sure you have enough oxygen, and monitor you. You’re on a lot of medications, and it makes you a little loopy.

You also have to get your leg muscles ready because you won’t be able to use your upper body for a while. When I went into the surgery, I was very sick, but pretty strong. When I came out of surgery, I had a couple of complications and had to get intubated again. Then I was in bed and I lost a lot of muscle and weight. My left vocal cord was lazy, so I couldn’t swallow safely and we didn’t want anything going into my lungs. I couldn’t physically eat anything, so I had to eat through a feeding tube.

I had a lot of anxiety because of the medication I was getting. A transplant is a big challenge mentally: You’re very anxious and there are people constantly with you, and you get to point where you want to be alone but you can’t be.

I was in the hospital for 32 days, which is a long time. Being out of the hospital made me happier. When I got home, I started getting back to feeling like myself again. I started to gain weight and walk around and build my lung function up and gain my muscles back. At first, I couldn’t even get up a curb.

Now I have to take bunch of pills to keep my lungs safe so my body doesn’t reject them, and I have to take medication for the side effects of the anti-rejection meds. I also developed diabetes from the steroid for anti-rejection. It’s a process, but you have to keep yourself healthy. You need the right diet because you have to keep your weight up. You have to rest, but have fun as well because it’s your second chance at life.

I don’t know much about my lung donor—not their age, or whether they were male or female. All I know is that they were in a car accident. I recently wrote my donor’s family a letter, but it’s all anonymous. The donor network has to go through it and make sure it’s fine to send. It has to be sensitive to the family, and you can’t say certain things, like your full name.

Because of my transplant, I got to meet Lea in person. I don’t have cystic fibrosis in my lungs, but I have it everywhere else. Since my lungs are clear, Lea asked her doctors and I asked my doctors if it was okay if we met in person. They said it’s fine because she doesn’t have certain bacteria that would get me sick. They said we could go, but to wear a mask if we got within six feet of each other, and to wash our hands.

Meeting your best friend of almost three years who you’ve never been able to hug or even see in person before, who’s gotten you through so much, it’s so emotional. We cried, we were so happy. You see the person you’ve seen through the screen for years, finally. Because we talk about everything every day, it felt normal.

I’m so grateful that my donor was so selfless and gave me this opportunity to live. Without them, I wouldn’t be here—I wasn’t going to be here very much longer. They gave me life again. I want to cry because it feels so amazing to be alive. I think about them every day and make sure that I’m making them proud, that I’m living for them.

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