Former Choteau resident Faith Crouch was diagnosed with cystic fibrosis at birth and had lived most of her life in and out of hospitals, “pretty sick, but stable” until a few years ago, when her lung function began to drop dramatically.
“I was coughing up blood and mucous, had fevers, had no energy. To put it plainly, I was dying,” she said.
Cystic fibrosis is a genetic disease that affects the body’s production of mucus, sweat, tears and digestive fluids. The disease expresses itself in a variety of ways, affecting organs with different levels of severity. “No two cases are alike,” Crouch said. “My brother Josh also has CF, and we’ve had completely different experiences.”
Crouch was born at 28 weeks’ gestation, weighing 3 pounds and 2 ounces. She had an impacted bowel and collapsed intestines that required painstaking surgery to separate the layers and salvage what they could of her digestive tract. After surgery, she weighed just 2 pounds and 3 ounces. She was given a trial treatment of calf surfactant (a now common practice) to keep her lungs pliable and spent the first months of her life in the hospital, gaining weight and undergoing various follow-up surgeries and treatments. By contrast, Josh was born full term, was able to be active in sports and has had comparatively fewer health issues than his sister.
As Crouch’s disease progressed, so did her perspective on life.
“Many CF’ers go through a lot of different phases, mentally,” Crouch explained. “Some are depressed or rebellious. They don’t see the point of taking care of themselves because they think, ‘I’m going to die anyways.’ Some are cynical or have a dark sense of humor. Others find a new energy for life and make the most of it. And I’ve been every one of those at some point.”
Two reasons Crouch found for “getting serious” about her health are her husband, Matt, and their young daughter. As her health continued to deteriorate, she began the arduous process of seeking a double lung transplant.
“It’s a very extensive and exhausting process. After I had my daughter, I began to get more and more sick. I knew it was something I needed,” she said.
Crouch and her family were living in Tacoma, Washington, at the time and were transferred to a center in Seattle, where the process began.
“After you apply, the first thing you do is undergo a panel of tests. It takes about two weeks of solid testing before they’ll list you,” Crouch explained. “They test for issues that could lead you to reject a new lung, like acid reflux or GERD. And they test for oxygen profusion, which shows them what parts of the lungs are still moving and absorbing oxygen.
“Then, because CF is a full-body disease and not just in your lungs, you run tests with an ENT (ear, nose and throat) doctor, a GI (gastrointestinal) specialist and a pulmonologist. You get a bone density scan, multiple blood tests and, if you’re a woman, a mammogram as well.”
After all the tests are done, the next phase of the process begins: talking with social workers and insurance. Then the transplant team will review the patient’s case, decide if they need any further testing, and decide if that patient is a viable candidate.
Candidates are then given a lung allocation score, which correlates to how they are prioritized on the list.
It took Crouch three years and three different transplant centers to finally get the transplant, with the surgery being performed Sept. 13, 2020.
“I didn’t really have any competition on the list. Part of the reason it took me so long to get a match was because I’m short, at only 4’10, and I have a rare blood type,” she said.
“I got the call that I had been matched for a new set of lungs and the difference has been night and day,” she said. “Before I had a lung transplant, my old lung function was 22%; that means that less than a quarter of my total lungs were functioning. As of yesterday (Jan. 6) my lung function is 104%. … It made me cry I was so happy.”
(Lung function percentages are predictions calculated by taking the average lung function of people of a similar weight, age and height.)
Now that the lengthy transplant process is over, Crouch still has a long journey of recovery ahead of her. While her and her family’s home is in San Antonio, Texas, she has been living in Houston, Texas, for the past several months.
“I’ve had a few issues from the surgery, but absolutely no problems with the lungs. They usually say for six months to a year, you have to stay close to the hospital in case your body tries to reject it or something serious happens. I was doing really well and they were going to let me come home this month, but then I started having seizures in November, so that prolonged my stay here,” Crouch said.
In addition to the seizures, Crouch faced another health hurdle in November: COVID-19. “Everyone around me had gotten COVID. I locked myself in the bedroom, but it didn’t help. … I went to the ER and tested negative three times. Then five days later, it turned positive,” she said. She officially tested positive on Nov. 26 and is still recovering from the viral disease, but says she is doing very well.
“I had some of the best infectious disease doctors, and only had to be in hospital a couple weeks,” she said.
Because her new lungs have a different genetic makeup, there is no risk to those lungs ever developing cystic fibrosis in the future. As she continues to gain strength and energy, she looks forward to her future with new, healthy lungs. She enjoys going to the gym, and she went back to school in October for interior design. She already has her first commercial interior design gig lined up, and she has taken up painting.
“Some people talk about a personality change after a transplant. I think I got an artist’s lungs, because recently I’ve been painting and sketching,” said Crouch.
When she’s ready, Crouch will have the option to send a letter to the family of the person who donated the lungs to her. And if that family wishes, they can contact her back. “I’m not ready for that right now. I want to have done justice for that great donation first. But eventually, it is something I want to do, because it has made such an impact on my life,” Crouch said. “I’m very grateful for my opportunity. I never thought that this would happen, that I would get to this age (32) and still have life left to live.”
Immediately after she had her transplant, Crouch told her social worker that one thing she wants to do is be a mentor for other people with cystic fibrosis who are considering transplants. “There’s a lot they don’t tell you about transplants, and I just want to be able to help others who are experiencing similar things as me,” she said.
There is no known cure for cystic fibrosis, so the rest of Crouch’s body will still have the disease, but her quality and length of life has been dramatically improved, thanks to a very generous donation and a team of skilled doctors.
Outside of transplants, other treatments for cystic fibrosis are being developed at an increasingly fast pace. A new class of drugs called “gene modulators” are available to help correct the malfunctioning proteins produced by certain cystic fibrosis gene mutations. (Because different mutations cause different defects in the protein, the medications that have been developed so far are effective only in people with specific mutations, but the research in this field is expanding.)
“I believe that in my lifetime, there will be a cure for sure,” Crouch said.