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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 & Thursday!

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Karen Reams - phaware® interview 262

Jul 9, 2019

CTEPH patient Karen Reams discusses the elation of the possibility of a cure for her PH and the devastation in being told her blot clots are too distal for PTE surgery.

I'm Karen Reams, I am a pulmonary hypertension patient.

What led to my diagnosis, was I had been noticing for years that I was short of breath. I was a smoker, so of course, you smoke, you're going to be short of breath. Well, it just kept eventually getting worse and worse. So, I quit smoking and it didn't get any better. I thought, "Okay, now time to tell my doctor." So, I told my general practitioner that I'm getting short of breath. He said, "All right, we got to get you to a cardiologist." I went to a cardiologist, ran some tests, did an echocardiogram. He said the echo didn't look good. He put me in for a heart catheterization. While I was in there, he noticed that the pressures in my lungs were high. So, he went and got a pulmonologist from the hospital to come in to the room where I was getting the heart catheterization to diagnose the pulmonary hypertension. They said, "Yes, you do have pulmonary hypertension." Well, of course I know nothing about that, what it is.

Unfortunately, when I was diagnosed then, I went to see that pulmonologist after the test, and I said, "So what is pulmonary hypertension?" He said, "Well, it's a rare lung disease and in the past, when you were told you had pulmonary hypertension, the next thing we did was called hospice." Well, that's all I heard. I immediately freaked out, didn't hear anything else he said. They scheduled more tests. I left his office, went home, went directly to the internet and started looking up pulmonary hypertension. [I was] freaking out, thinking, "I need to talk to someone who has this." So, I found support groups right away.

I went to the support groups, said, "I was just diagnosed," and they said, "You need to find a pulmonologist who specializes in PH." So, I had done that, so I chose one, and now I go to a PH specialist. She did her own heart catheterization, the pressures were very high, and they put me in the hospital right away. I went on Veletri, the IV therapy.

I had a lot of anxiety going on that IV therapy medication, but once I got used to it and got used to the new lifestyle, things got better, my breathing got better. Then it was within three months, because that was in October of 2015, in February of 2016, my breathing got worse. I was up to six liters of continuous oxygen. I went back to see my PH specialist, and she said, "We need to run some more tests." She said, "Have you ever had a V/Q scan?" I had [had one in the past]. They said there was nothing there. Well, she said, "We need to run a V/Q scan," so they did, and they found a lot of clots.

So, I am a CTEPH patient. Then I get told the wonderful story of finding a cure, there's a cure for CTEPH patients, so I'm very fortunate that I have CTEPH. My doctor sent me to San Diego for the PTE surgery, and I'm prepared to be cured and have a PTE surgery. But when I went there and got evaluated, [I was told] I am not a candidate, my blood clots are too distal.

I was devastated. Absolutely devastated. But they said there is a procedure that we can do and it's BPA, [balloon pulmonary angioplasty], and we do them in increments and they felt that those would really help me. I said, "Okay," to that. I have had six BPA procedures over a period of one year, three different times I traveled to San Diego. My breathing did get a lot better, and then they put me on Adempas [riociguat] and I got better. I still wear oxygen. It's hard to breathe when I move around. I can't walk very long distances. I have an absolutely new normal. There is hope of being able to travel. I just went to Alaska on a cruise with oxygen and a scooter. So, there is life after PH.

I have gone through a lot of ups and downs with anxiety, and depression, and then the hope of finding the cure, and devastation. Through it all, I just have a lot of family support. I have a lot of support on the groups online. In the end, I just think God has given me this because he knows I'm strong and I can handle it. I'm here to prove to him that I am strong and I can handle it.

The advice I would have for somebody that would be diagnosed with PH is to find a support group. Find people that you can speak to that know what you're going through. Believe them when they say there's hope. Cry with them, they will cry with you. Just find the support because as I said, there is life with a PH diagnosis.

I'm Karen Reams and I'm aware that I'm rare.

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