Cathleen Harrington - phaware® interview 581

From Wedding Bells to a Life-Altering Diagnosis

Cathleen Harrington was young, athletic, and newly engaged when pulmonary hypertension changed everything. Twenty-one years later, after surrogacy, clinical trials, a lung transplant, and battles with rejection she’s still here, still fighting, and still building a life around gratitude, hope, and her children.

My name is Cathleen Harrington. I was diagnosed with idiopathic pulmonary hypertension 21 years ago. I was a very active person. I thought I was totally healthy. I had never had any other health issues. I was a hiker, biker, runner. I went to the gym often and all of a sudden, I couldn't walk up a flight of stairs without having to sit down at the top and catch my breath and wait for my heart to slow down before I could move on to what I was going upstairs for. That was often like five minutes. I went to multiple doctors trying to find out what was wrong. I know that I'm one of the lucky ones. I know that it often takes two to three years to get a diagnosis for pulmonary hypertension because it is such a rare disease.
 
I went to a few doctors, I don't know if I'm lucky, from the area I was in. I live just outside of Washington DC and saw a few good doctors that kept narrowing things down. The cardiologist said, "It's not your heart. You should see a lung doctor." Luckily, the lung doctor that she referred me to was very much on top of things and did the tests. It still took a few months trying to rule everything else out because he did not want to give me the diagnosis of pulmonary hypertension. Ultimately, he did. 
 
It was a very interesting time. I was just about to get married and was about to go to Costa Rica for our honeymoon. My doctor knew this and he told me to go enjoy my wedding, enjoy my honeymoon, and he would do the final testing when I came back. I'm glad that he waited a couple more weeks to diagnose me. So we went to Costa Rica. I did as much hiking as possible. I was definitely more limited on what I was able to do. Hills and stairs were the hardest, but we went and had a great time and came back. 
 
That doctor's name is Eric Libre. He's just amazing. He was very positive and helpful and I'm so grateful that he is the one that diagnosed me, because I've heard so many horror stories. There are doctors that tell their patients you have three to five years left to live. Dr. Libre, actually, told me that there was a lot of new medications coming out. This was back in 2005. Lots of research was being done, clinical trials, all kinds of things. They'd caught this early. He said I probably had 15 to 20 years to go until I would need a lung transplant. Considering I had just gotten married and couldn't wait to start a family, it was good to hear that I still had a future to look forward to. 
 
I was told that it would not be safe to carry a pregnancy. There's a 50/50 chance, typically, at least back then for the mother to die. We immediately went through channels to start the surrogacy process and we were able to have a beautiful boy, and then a few years later a daughter. So I was able to live out that dream of being a mom. That's going really well and that's been one of my main motivations for trying to stay as healthy as I can and staying on top of my illness just so I can be here as long as I can for them to get to experience everything with them. 
 
I did pretty well. I was a school counselor at the time. Another thing that Dr. Libre advised was going part-time because he said stress can make the illness worse, the progression of the illness. I did go part-time, so I was still able to keep my career for another nine years after I was diagnosed.
 
That was just for me, the best of both worlds. Getting to part-time, be home with my son and part-time do the job that I loved so much. After nine years, my illness was progressing so I did need to retire at that point. I was okay with that at the time, but it's been a few years now and I really, really miss working. I really miss working with people in education who are passionate about their jobs and the kids and hope maybe to get back to that at some point. 
 
I did make it about 13 years before needing the transplant. I was really hoping to hold out for 15, but it was time, so I was evaluated. I had been with the same clinic the entire time and there they're a major transplant clinic. I went through the workup for a lung transplant that took about nine or 10 months and then again, I was fortunate I did not have to wait very long for a transplant.
 
My sister came out from the West Coast and brought her twenty-something daughter with her and they came out for a long weekend for a dry run, to go through what we would need to do when I got the call that there were lungs available. We just had a great weekend. I took them out to get a massage and to thank them for coming and supporting me. Right after our massage, we were sitting having tea at the massage salon and I got the call. It had been probably about two months that I had been waiting and I was expecting to wait another three or four months. It was just a miracle, one of many, the timing of that. I was not expecting to need the lung transplant yet. I knew that I was declining and I was on oxygen at that time, probably on two liters, maybe like five with exercise or if I was going shopping or something, but my energy levels were okay and I just didn't feel that sick.
 
I was in multiple clinical trials during the time that I had pulmonary hypertension. I attended one in Lancaster, Pennsylvania that I would go up to regularly, another at Johns Hopkins, another at NIH. It was when I was at NIH for that clinical trial that the doctor looked at me and he just said, "It's time. You need a lung transplant." He wasn't kind or gentle about it at all. I was very tired from having to drive up to NIH and do a whole day of testing and everything. The nurses offered to push me around in the wheelchair rather than have me walk all over the hospital and I said, "Yeah, sure, why not?" This doctor sees me and says, "It's time, you need a transplant." This is the first time I'd heard that. I knew it was a possibility down the road some time, but to be told it was time.
 
He saw that I looked shocked and he said, "Look at you, you're in a wheelchair." I also probably looked as exhausted as I was that day, so that was shocking. I called another one of my friends with pulmonary hypertension, Lina McDowell, and cried to her my whole drive home. She was very supportive and she knew that she would be in the same shoes someday. She supported me and tried to comfort me and helped me come to terms with it. It is scary thinking about needing a lung transplant. You never know how it's going to go if you're going to survive the surgery or if there are going to be complications. I have lost friends that have had transplants. That's very difficult, but mine came off without a hitch, I guess you'd say. 
 
It was a no-brainer in that I had young children. I was definitely not going to give up the opportunity to continue to be here and also looking forward to maybe being able to hike again someday or go for a run. So, I got the call. The transplant went well. I was in the hospital for 17 days I believe after the transplant and have had a couple of episodes of rejection that they have treated. They changed up my medicine last year and I don't know if this is what started it, but I was in rejection a month later. They treated me but slowly. They definitely didn't seem to be on top of it. I had to keep contacting them. "Okay, I've finished this course of treatments. Are we going to do a CT scan or a chest x-ray or something to see how my lungs are doing?" It was a year-long process. 
 
I have been in a clinical trial for treatment of lung allograft. I guess they would call it CLAD (Chronic Lung Allograft Dysfunction). I can't remember exactly what that stands for, but it's a type of lung rejection. I have been in a clinical trial for that since August. I'm stable now. I have been for months. I'm at 70% lung function, whereas before I was at 95%, so I still feel a little short of breath all the time and kick myself from moving into a two-story house after my lung transplant. I was just so optimistic. I missed my one-story house that we moved into after I was diagnosed with pulmonary hypertension. 
 
I'm incredibly grateful to be here. I think most patients with pulmonary hypertension get to know their bodies really well and know which signs to look out for. There were no signs that I was in rejection last year, but I got on a plane to Arizona for the holidays to visit family and noticed I was feeling short of breath on the plane. I think the next day, I went to the drug store and got a pulse oximeter. I had them at home, but we were on vacation and I hadn't needed to use it for quite a while, so I didn't pack one. I used it throughout the week I was there just checking here and there. I noticed that my oxygen was dropping, not extremely, but a few points and used it on the flight home. I got to about 87, 88% while flying and I had been flying with oxygen prior to my transplant. 
 
I flew to Paris with oxygen. Actually, as a side note, I did a lot of traveling before we had our kids. We took an international trip every year. I didn't need oxygen at first, but eventually I did, but that didn't stop us. We went to Spain with my son when he was three. We went to Italy, Costa Rica, as I mentioned, went on a few cruises. There is definitely life with pulmonary hypertension and even after. I haven't traveled as much post-transplant, but mostly that's because of COVID. I didn't go anywhere for a couple of years because of COVID. I have flown back to California to visit family a few times, but get sick pretty much every time I fly, even though I wear a mask. It really has to be worth it for me to get on an airplane right now. I'm planning something now, just not sure exactly where, but we're definitely going somewhere international this summer. Now, we have kids' school schedules to work around. That makes it a little bit harder, especially with a high schooler. They can't miss a day. Stresses them out. 
 
Since I'm not working in education, I've become a certified yoga instructor for kids yoga. I haven't been working at that for a few years, but I still maintain my practice and hope as soon as my youngest is a little bit older, I can start doing that even if it's as just a volunteer basis. 
 
One of the downsides with the lung transplant is the prednisone that you have to be on forever. One of the main treatments for rejection is very high doses of prednisone. That has given me some health issues, but one of the things that I've had since about a year after transplant is chronic fatigue that makes it hard to do things like volunteer. My schedule is very unpredictable. My main focus right now is taking care of my kids, so when my daughter's a little bit older, I really hope to get into that and I miss being a counselor, so maybe volunteering for people with chronic illness, definitely running support groups or something just so I can get back into the other things that are important to me.
 
As I look back at the beginning of being diagnosed, I had never heard of pulmonary hypertension. My husband had never heard of pulmonary hypertension. Pretty much no one I knew had. However, around that same time, one of my coworkers brought to work a magazine, I want to say it was Vogue. A very famous pulmonary hypertension patient, Charity Tillemann-Dick, had been interviewed in the magazine. She was an opera singer and an amazing human being. I was fortunate to meet her, so reading about that right at the diagnosis and having her in that magazine so I could share with my friends and family. Here's this article and you can read about it a little bit. My coworker and friend was so kind to bring that in and share that with me and made it a little less scary for me, seeing just how amazing Charity was. 
 
It was scary, but I've always been a fighter. I lost my mom when I was very young. She, unfortunately, died of brain cancer, so I kind of just fought to survive and have the best life possible without having her here. She was an amazing person. So, when I got my diagnosis, it was just another obstacle to overcome for me, and I had overcome many up to that point, putting myself through undergrad and grad school to become a school counselor because I love kids and I've always wanted to help them in any way possible. It was just, okay, how do we deal with this? What do we do about this? That's why I say my doctor's attitude had such a positive impact. Here I am 21 years later, he was right that I would still be here 20 years later, but it was incredibly devastating to hear that I would not be able to carry a pregnancy, but again, another obstacle.
 
I looked into surrogacy. I found a surrogacy agency nearby. We met with a couple of high-risk pregnancy doctors. All of my doctors said that I should in no way attempt to carry a pregnancy. Again, I think that things have changed a little bit. Some people are doing it successfully now. That was devastating and hard, but it was just another obstacle to overcome, and I did that. The progression of the disease was so slow that being able to work for another nine years was just such a blessing, and I'm so glad that that worked out. I do miss working a lot, but again, I'll figure something out. 
 
I think I'm naively optimistic, but I just always choose to believe that the best thing is going to happen and what's supposed to happen is going to happen. With the pulmonary hypertension, I always knew that if it got too bad that there was always the opportunity of having a lung transplant. Once you've had the lung transplant and that being the last thing that you can do, it becomes scarier having it out there that, "Okay, I don't need one now. I might need one at some point, but we'll deal with that when that comes." When I got the transplant, I was surprised afterwards thinking, "Wow, that's it?." My doctors have said that I would be a candidate for a second transplant if needed. They were talking about that last year when I was in rejection. I would do it because of my kids, but the medications for transplant have made me sick in other ways.
 
The first time I went through it was not terrible. Like I said, I wasn't in the hospital more than a couple of weeks. The healing, it takes probably a year to start feeling like yourself again, but then I started having other health issues. So, having another transplant, I'm like, "Ugh, I've already got all these other issues. What is another lung transplant going to do to me?" So, it's scarier. It's scarier to think about that, now. 
 
I'm praying that I'm one of those lucky ones that make it to 30 or 35 years. I know someone who's at 35 years post-transplant, and I know a number of people who have gotten second transplants and are doing okay, but I just really hope to not have to make that decision again. 
 
My name is Cathleen Harrington and I'm aware that I'm rare.

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