I’m Aware That I’m Rare: Katie Sample (392)

The phaware® interview

In this episode, attorney Katie Sample discusses losing her husband to complications following a bone-marrow transplant. Two years later, while still in mourning, this single-mother from Long Beach, California was diagnosed with Ideopathic Pulmonary Hypertension.

My name is Katie Sample. I’m 39 years old. I live in Long Beach, California. I was diagnosed with pulmonary arterial hypertension in March of 2020. I’m an attorney. I graduated law school in 2008, which was a recession time actually. I got my first job in the law off of Craigslist. I felt very lucky to get that job. At that job, I met my husband, who was a partner in the firm. We worked together over the next 10 years, which was wonderful. When I met my husband, he was about five years out of having a bone marrow transplant following a leukemia diagnosis in his late thirties.

He was treated at City of Hope. He underwent multiple rounds of chemotherapy, a round of radiation, and then had a bone marrow transplant in 2005. His cancer never came back. He was always cancer-free during our time together, but he did have ongoing health issues after having a bone marrow transplant. He had what’s called graft-versus-host disease, where his body was sort of rejecting the transplant. For a lot of patients, those rejection issues can dissipate with time. But for my husband, it did not dissipate. He was on high doses of prednisone and other medications to suppress his immune system to kind of keep that in check. But when you’re on immunosuppressants, then you become very susceptible to infection.

For my husband, that meant that he often had bouts in the hospital from infections that would become dangerous. He had infections that got into his bloodstream and became life threatening a couple of times. But overall, he was a very functional person. He worked full-time as an attorney and a trial lawyer. We loved the work that we did together. It was his really number one joy. We got married in 2013, and I had my son in 2016.

In 2018, my husband was in the middle of a trial, which was out in San Bernardino. For those of you who are not from California, that’s kind of an inland area. It takes about an hour and a half or two hours with traffic from Long Beach. He was commuting back and forth to court, very busy. On the tail end of that trail, he started retaining fluid. We knew that that meant that something was wrong. Usually that means your heart isn’t pumping right or your kidneys aren’t working right. He went to City of Hope and deliberately didn’t pack a bag, because he thought that that would be bad luck that they would admit him. He was right. He went to City of Hope and they did admit him.

Before they checked him in, he left to go to Target and get some pajamas for the night before I could bring a bag. That was kind of where everything changed. He was diagnosed as being in kidney failure, because of some of the medications he was on had put too much stress on his body. They wanted to wait it out and see if he was going to have to go on dialysis, which he ultimately did. It turned into a very extended hospital stay. He was in the hospital for about a month when we were finally talking about having him be discharged and go outpatient to continue dialysis on an outpatient basis.

All of a sudden, everything changed when a nurse heard a crackle in his lungs when she was doing a routine check. He was diagnosed with pneumonia, which put alarm bells off pretty quickly. City of Hope knows that when an immunosuppressed patient is diagnosed with pneumonia, it can be very dangerous. For the next week, he was stable, but not improving. Then all of a sudden, he took very scary turn when they wanted to do a CT scan. He went into basically an arrest with his breathing and they had to intubate him. From there, he never recovered. It was a very difficult thing being at the hospital and having a two year old. Ultimately, I was the caregiver who had to make the decision to let him go, and I knew that that was what he would’ve wanted.

We let him go on April 13th, 2018. I stopped working for a long time and just took some time to be with my son and my family. I started traveling and kind of just doing some soul searching on how I was going to move forward. It was in my travels that my life really changed, because I started to notice that I was very short of breath when I was on some of these trips.

First, I went to Iceland with a couple of girlfriends from college, and it was a big adventure trip. We were hiking a lot. We were doing a lot of outdoorsy things. I noticed that I was having a lot of trouble keeping up. I was fatigued. I was more tired than the other girls. But I just kind of ignored it. Everyone thought, “Hey, you’re grieving and you’re in this situation. You’re probably a little out of shape.” Life went on.

Then three months later, I went to the Middle East again with girls from college. I had a friend from college whose husband had gotten a job in Abu Dhabi. We went to Dubai, Abu Dhabi. We went to a country called Oman. Then we went to Jordan. At the end, we hiked Petra, which is one of the Seven Wonders of the World.

In that hike, I was so short of breath and lightheaded. The other girls went ahead of me. I didn’t know if I could finish the hike. I saw all of these older travelers passing me. There was a very heavy set gentleman, probably 30 years older than me, who passed me. He himself was struggling and he still passed me. I thought, there’s something wrong here. Him hacking up his lungs, he’s probably a smoker, still moving beyond where I was. I knew that something wasn’t right. I kept telling friends and family I felt short of breath and everyone again said, “You probably have asthma. Just you’re fine.” I never went to a doctor about it. I just ignored it.

I had gone back to work in June of 2019. I was working full-time. I had my son. I was very busy. I just didn’t really put a lot of thought into what might be going on with me. Then one night I left work and I was walking up the stairs of our parking structure and I felt so lightheaded, I knew I was going to faint. I made it to my car. I opened my car door. I slouched into the front seat of my car. The next thing I know, I woke up and I had fainted. I immediately called friends and family and said that I had fainted, but I felt well enough to drive home, which I should not have done. I went home and my parents said, “You need to go to the ER. You’ve fainted. Something’s wrong.”

I said, “Nope, not going to go. I’m fine,” but they convinced me the next morning to go to the ER. So I did. You have to remember, this is now February of 2020. It was really just the beginning of COVID. The ER was packed. They didn’t have room for me at all. They did a number of tests on me, but no one even came back to talk to me and tell me what the results of my echo were. When I finally insisted on knowing what was going on, the ER doctor on the floor quickly looked at my echo and said everything was normal, but that they wanted to run more tests, because they were concerned that my resting heart rate was near a hundred and my EKG had been abnormal.

Even the doctors made excuses for that and said, “Maybe your heart just fires abnormally. Maybe that’s your norm.” I don’t look sick. I’m young and I’m petite, and so everyone thinks you must be healthy. I wound up signing AMA paperwork, which is against medical advice, and I left that ER, because they weren’t telling me that anything was wrong. I had been there for a full day and they didn’t have a room to admit me. I didn’t want to spend overnight in a communal ER space. So I went home.

In the middle of the night, a cardiologist who was on call from that ER took a look at my echo and realized that there was something severely wrong with the right side of my heart. He thought that I had a pulmonary embolism. He called and left a voicemail in the middle of the night, which I didn’t get until the next morning, and said, “You are in a life or death situation. You need to go to a hospital immediately. Call 911.” When I woke up, I called 911. An ambulance took me to a different bigger hospital that I asked them to take me to, which is Long Beach Memorial.

I was there for the next four days, where they quickly did CT scans and tests to determine whether or not I had a pulmonary embolism. I didn’t, but they could see that the right side of my heart was extremely enlarged and that something was very, very wrong. Within a few days of being at the hospital, they had tentatively diagnosed me with pulmonary hypertension. They could not find a reason why. My diagnosis is idiopathic. They then said that I could go home, but they wanted to do a right heart catheterization on March 4th to confirm my diagnosis, which they did do. It confirmed that I had pulmonary arterial hypertension.

My pressures were extremely high. I believe it was something like 140 was the top number and it should be between 20 and 25. I had a very severe case, and my heart was very enlarged, so I was in heart failure. They told me, “Your best chance here is that you need to go to UCLA,” because that’s where the biggest pulmonary hypertension treatment center is in Southern California. That’s where I went.

I had gone from being very high functional and continuing to work every day to feeling like I could not get out of bed. I had no energy, and I didn’t know how I was going to move forward in my life. I felt like I was basically permanently disabled. Mentally, I was in a very dark place. I couldn’t stay off Google and reading that my life expectancy might be two or three years. My son was little. My husband had already passed. It was just a nightmare.

I found Richard Channick at UCLA and he was just a light. He saw me. He got me on medication right away, which immediately made a big difference. He told me that I needed to not look at Google and I needed to know that he has patients that have lived with this disease for decades, even 30 years. That really I’m going to do how I’m going to do. It depends on whether I’m a responder or not. He calls it a responder, a non-responder.

We saw pretty clearly right away that I was a responder. There was some hope, but there have still been ups and downs. He put me on two medications to start with, and I did feel a big improvement right away. I had been on disability for a while after my diagnosis. After my medication levels were where there were supposed to be and I was feeling better, I did go back to work. But Rich did another right heart catheterization I want to say in September 2020, probably about six months after my diagnosis. My numbers were down, but my top number was still around 90 or 100.

He wasn’t as happy with my progress as he wanted to be. He decided that we needed to be aggressive and go on a third medication. I went on Uptravi. For those in the PH community, you know that that’s a pretty hard medication to go on. There’s a lot of side effects. You have to titrate on it. For some people it’s easier than others. I had a very difficult time titrating. When you’re titrating, you’re supposed to stay on a level just for about a week at a time, and then you can step up. It took me much longer. For a while, I had to stay at a level for about a month before I could really titrate up again.

I wasn’t sure if I was going to even be able to handle going to the max dose, which is 1,600 micrograms twice a day. I got stuck at like 800 micrograms. I really had a hard time with it. I was very sick from the medication, but ultimately those side effects dissipated and I was able to get to the max. It’s really changed my life. I’m so glad that Rich convinced me that I needed to go up to a third med and get to that level on the medication, because I’ve now seen a vast improvement. We did another right heart catheterization. My numbers are down. My top number is now in the mid-forties. I want to say 45. That’s a big difference from 145 when I was diagnosed.

It’s still considered I want to say moderate, but my six minute walk test is very good. Very functional. He’s happy with all of my progress. I haven’t had to go on intravenous medication yet. So I’ve been stable where I’m at. But I still have good and bad days, just like anybody with chronic illness. All the while, I’m trying to be a mom and work full-time. I look healthy, so it’s hard. People don’t always understand everything that I’m experiencing, because they assume that I am a healthy 40 year old woman.

For me, the biggest thing is that I wanted to travel again, and the pandemic and my health situation kind of took that away for me. Travel was always something that was very important to me. Here in November, I have my first international trip planned since I’ve been diagnosed. I am going to Spain and to Portugal to celebrate my 40th birthday on November 17th.

My advice is to listen to that voice in your head or that gut feeling. If you know that something is off with your body, don’t ignore it or put it off to the wayside. As a caregiver to my husband, I never ignored any symptom that he voiced to me. I was his biggest advocate, and I was really an aggressive advocate on his behalf. If he said something was wrong, I was paging the doctors. I was sending messages in the portal. I did not let it go untreated.

It’s so ironic that when it came to my own symptoms, even when people were urging me to seek medical care after I had fainted, I kept wanting to ignore it. I think I didn’t want to face that there might be something really wrong, because I think deep down I knew that something was really wrong. I had always been an active, healthy person, and it wasn’t normal for me to be that fatigued and that short of breath. I knew that I wasn’t just overtired or overworked or grieving. I knew that there was something going on with my body. For anyone who has that feeling, go to the best medical provider or at least your general practitioner. Try to find a specialist like I have at UCLA, who can really do the workup that you need.

To get diagnosed with pulmonary hypertension, you do ultimately need to have the right testing and the right heart catheterization to confirm the diagnosis. I was lucky that at Long Beach Memorial, they were a big enough medical center where they were equipped to do all of those tests and had a cardiologist and a pulmonologist who were well versed with pulmonary hypertension and knew to give me that workup and begin my journey with the diagnosis that I was given in March of 2020.

My name is Katie Sample, and I’m aware that I’m rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com

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phaware global association®

Are You #phaware? Pulmonary hypertension (PH) is a rare, life-threatening disease affecting the arteries of the lungs. www.phaware.global