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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday!

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Carol Templeton - phaware® interview 379

Aug 9, 2022

CTEPH patient, Carol Templeton details her complex surgery, called pulmonary thromboendarterectomy (PTE), which involves the removal of chronic clots from the lung vessel and the impact it had on her as the adoptive mom to her 18 month old daughter.

My name is Carol Templeton, and I'm from Los Angeles, California. I was diagnosed with CTEPH (Chronic thromboembolic pulmonary hypertension) in 2007. Before that, I didn't have any lung issues. A couple years before, I had a blood clot in my leg. I had DVT (Deep vein thrombosis). I went to Kaiser Hospital and they gave me Heparin. Then they sent me home and said, “Take Coumadin for six months and everything will be fine.” I would go on hikes, like up in the local Hills. I was usually able to keep up with the crowd. But at some point, I noticed we were going uphill and I was not making it up the hill, which was strange. I always thought, "Well, maybe I'm just tired." At some point, I couldn't make it up the hill without breathing heavy and I was just curious about it. But I didn't really think about it too much.

I'm an architect and I go to meetings. I remember being in a meeting on Hollywood Boulevard for a project. I had suddenly in the meeting a major start of a panic attack where I couldn't even breathe. I went off to the bathroom there and I was like, "Wow, it just came out of the blue. Like I couldn't breathe." But I got over it. I’m pretty strong. I didn't really think anything else about it. Then it happened again. It happened a couple times where I had this weird panic attack. I remember going to my office one day in Santa Monica and it was a really rainy day. I was sitting at my desk and it's like I couldn't breathe. I thought, "What is going on here?" I went outside and it was raining really hard, which is strange for LA. I just couldn't catch my breath. I just said, "Wait a minute. I think I'm done. I'm going to have to go to the doctor."

I just drove myself to the ER. They put all those stickers on me for the EKG. Then they looked at me and they said, "Here comes the gurney. Could you please hop on it?" Then they wheeled me off to emergency and said I had irregular heart problems. At some point, the doctor came into my room and just looked at me and said pulmonary embolism. I didn't even think about what pulmonary embolism was. I thought maybe people would have a pulmonary embolism and they would just die right there. Or maybe you had time to call the ambulance or something. I didn't know I was walking around with it turns out multiple pulmonary embolisms over a few years and I was just walking around.

They said, "We're going to have to keep you in the hospital for a week." They gave me my room and I had to just sit there with an IV for a week. Then they said, "You'll be fine. Here's some Coumadin. Goodbye." I was maybe at home for five days and still just felt really bad. I didn't know what was going on. I drove myself back again to the ER and I said, "I just don't feel right." They put me back in the hospital for a few days, running all kinds of tests. Even then, they didn't come out with what it was. All they knew was that I had had some sort of blood clotting condition that they couldn't really define and that I needed some hematologist to come and figure out what was wrong with me, because I just wasn't feeling right.

He came through and said that I had tested positive for anticardiolipin antibodies syndrome, which is APS, and that I would have to be not taking Coumadin. I'd have to take the Lovenox® shots through my abdomen twice a day for the rest of my life. Somehow that would make everything better and then he sent me home. The problem is I did not get better. I then went through about six months of unusual swelling. At some point, they thought I had heart failure. They took me to see a cardiologist. My doctor did the echocardiogram and said, "Oh, this is very interesting." I think he brought somebody else into the room because he said, "I don't understand why you're walking around when you have such an enlarged right heart." They were like, "Well, this is not a good sign. We're going to have to go back and all the doctors are going to have to go figure out what's wrong with you."

The process was taking months and no one seemed to know what the problem was. Then I went back to my pulmonary doctor and he said, "Would you like to take a trip to San Diego?" I'm like, "What do you mean? Like an all expense trip to San Diego?" He said, "Well, you can go and get tested, because we think that you have some sort of condition in your lungs that's creating pulmonary hypertension and your blood clots are not resolving." I said, "Well, that's pretty rough because I've got an adopted daughter and she's 18 months old. I wasn't planning on a trip to San Diego for this surgery that they said if you were selected after a week of testing, it would require that you were frozen for 40 minutes." They have to stop all blood flow and the doctor was going to go in and cut out the clots in your lungs. Then after that, I would be placed in a coma and after that they said, "We don't know how long you'll be in the hospital, but hopefully this will work." It was a lot to take in.

It got complicated. We had to get relatives to watch my daughter. I went down to San Diego. They did a week of testing. They said after four days or so, they would know if you were going to be a candidate for the surgery. By day three, they just looked at me and said, "Come on down. You're going to check in today right this second." I was prepped and taken down to the operating room. After the eight-hour surgery, they wheeled me over to the area where you're in a coma for two days or something like this.

After 18 hours, I heard some nurse next to me nearby saying something about breakfast burritos. It woke me up, because I was thinking, "When's the last time I even ate? Boy, I would love a breakfast burrito." I woke up, and I just have all that stuff down my throat. The nurse sees me and she's like, "Wow, you really woke up early." I couldn't talk. They just wrote something on the wall and they didn't even let me write anything down. They just told me that I had to wait for the doctor to show up and it would be about two hours before they could take the respirator out. That was really difficult, but then they took everything out. Instead of a breakfast burrito, they gave me this incredibly dry piece of toast, which I couldn't possibly eat.

Then the recovery started. It was really painful and they wanted me to take a lot of drugs. I had to do these breathing exercises and all that. I could barely lie back onto the bed. I was there for three weeks. I slowly made it to where they said I could go home. I got home and they told me not to lift anything heavy for three months or something like that. I had an 18-month old daughter so I really couldn't lift her at all. We had to get a nanny. Also, my relatives showed up, my mother-in-law came to try to help out with my daughter and it just got to be this super crowded house. I ended up moving across the street to my neighbor so that I could sleep, because I just needed a room. I would sleep at my neighbors for a couple weeks and then come and visit them. Visit my in-laws and visit my daughter and my husband. That was pretty stressful.

Then after a couple weeks, they left, but I still had a nanny to try to help me with my daughter. I didn't go back to work for three months. But then when it got to be three months, I really felt like I still wasn't ready to go back. I somehow got disability to agree to another three months. I had to go there in person and show them my scars. After six months, I went back to work, but part-time, because I just didn't feel like I had the stamina anymore. For workouts, I would try to walk somewhat. One of the things I would do is go to Target and get a shopping cart and walk every aisle of Target. I could rest with the shopping cart.

Here we are 13 years later, and I'm in this group of people that have been cured of pulmonary hypertension. I still have lingering swelling occasionally in my leg from the DVT and I have to wear compression socks. I'm always concerned if I'm flying a lot and drinking a lot of water. I feel like I can't push myself. I can't become a marathon runner or anything else. I had doctors that told me just go out and no more ice skating, no more bike riding, no more contact sports. Yeah, there are some sacrifices. I have to say over the 13 years, I didn't go back to working full time. I work at the most maybe 30 hours a week. I don't work full time. Yeah, I've I made some sacrifices.

For my daughter, I just feel so lucky to be here because she's incredibly talented. I've asked her if she remembers that whole time and she really doesn't remember, because she was 18 months old. She doesn't remember being shuffled around to my brother's house or different places or where I went for a month. I just disappeared.

Since then, she's done all kinds of great things. She wanted to be in the circus. We put her in circus school. On her own learned how to walk on stilts. There she was at 10 years old as a professional stilt walker. In some ways, I feel like I don't want to turn down things now. I wouldn't say to her, "Don't do that. Don't get on the stilts or don't take that trip or whatever. It's too dangerous." Because it's like you're only here for a short time. I spent a lot of time with her working on all of her activities. I became the soccer mom except that I wasn't a soccer mom I was a circus mom, taking her to choir and just on and on and on. It's been a real treat.

My name is Carol Templeton and I'm aware that I'm rare.

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