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

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Sarah Brackett - phaware® interview 232

Mar 26, 2019

Pulmonary hypertension patient Sarah Brackett discusses her devastating road to diagnosis, busting CTEPH through surgery and the importance of educating medical professions in rural areas to raise rare disease awareness.

My name is Sarah Brackett. I live in Manassas, Virginia. In my life, as far back as 1985, I've had 3 pulmonary emboluses, two of them following surgeries after a Greenfield filter was put in to prevent them. And within six months of the last one in 2004, I started getting very tired and short of breath, and I wasn't feeling good. I had three teenagers, so I was a busy mother. I went to the doctor, a lot of doctors, for six long years trying to find out what was wrong with me. I was getting worse and worse and worse.

Clueless doctors who gave me the most ridiculous theories that "you need to lose weight", "You need to change your vitamins." One even told me I had pulled a muscle in my neck. I could barely walk down the stairs. I couldn't hardly roll over in bed. Every day I was getting worse. I couldn't do the things that I was doing. It was a really bad place to be in. I can remember not being able to sleep, because I was so filled with fluid and so short of breath. You couldn't lay down, it made it worse.

I would try to get up at night and go to the bathroom, and I would just stand there. I knew I was dying. Something was clearly wrong with me, and I knew it. Why couldn't anybody tell me? It wasn't that I needed to lose weight or change my diet or take vitamins. Something was wrong and nobody's telling me. And I'm scared, really scared. And that's where it started.

I got so bad I couldn't walk 10 feet across the floor. My children, who were teenagers at the time, they were crying to their father, "Do something! Do something!" And I'm going back and forth to doctors, which just going to the doctor was the biggest effort of my whole week just to get to my car and sit there for 20 minutes until my heart stopped beating out my chest so I could drive it to get to the doctor. And then having to sit in my car for 10 minutes before I got out to try to get in the doctor's office. All the time, planning how many steps do they have? What do I have to do? Only to come out later with another ridiculous theory.

Finally, I was so sick I just wanted to die. I knew I was dying. I'm tired of fighting, I'm tired of trying to find out what's wrong. So my husband literally picked me up and carried me to our van and took me to his doctor. I'd never seen her before. She took one look at me, and she said, "You're in heart failure." She wanted to call an ambulance right there to her office. I cried and begged, "Don't do that. If I'm going to die, I just want to do it at home. I want to do it at home."

She let me go home. She gave my husband phone numbers. She said, "Look for this, this, and this. Call this number." So she got me oxygen. It was at home by the time I got there. She setup appointments for cardiologist, and I was in bed for three months until my heart calmed down. The oxygen helped. I went to the cardiologist, they did all the tests. They are the ones that said I had pulmonary hypertension. I didn't know what that was. One of the technicians told me when she was doing an Echo. I said, "Is everything okay?" She said, "Well, I think a little pulmonary hypertension," she should never have told me that. But she did, and it was on a Friday. I went home and googled that term. It was terrible. It was the worst weekend of my life. I just knew from what I read that I wouldn't live two years, if I lived that long. I'd never see my children get married, I'd never see grandchildren.

She got me to good doctors. The doctor she got me to that diagnosed me, they sent me to Fairfax Hospital where I've met a good pulmonary hypertension specialist. They put me on Tracleer. Later, they added Adcirca. They, at first, were going to do Remodulin, but I have little pets. I was a little scared of that. I was just scared of the pet. So I asked them, "Can we do anything else?" So they did the Adcirca, they did the Tracleer. I was on that for a long time. I got a little better. They wanted me to go to pulmonary rehab, which I thought, "I'll never be able to do that." But I did. They were so wonderful. They let me take my daughter with me, and they were very good. They did the exercises with me. They checked my stats every time.

I got stronger. It was good stress reduction, and I really needed stress reduction at that point. I needed something to look forward to. It was really good. For someone who thought I would not enjoy it, I actually did enjoy it. I got better. It took four years of getting better until the doctors at Fairfax said, "You are the best we can get you." At that time, Adempas had come out. They took me off other medicines and put me on Adempas alone. I was still on oxygen, was on oxygen for four years.

They spent four years getting me better, and then they said, "You're as good as we can get you." I felt great other than lugging oxygen tanks and taking handfuls of pills a day. I really felt good. I accomplished a lot at that point. So they wanted to send me to California to UCSD. I just never been to California. I couldn't imagine having my family there with me, so I was like, "Oh, I don't know." My doctor, she knew Dr. Paul Forfia at Temple University Hospital, and so I went there.

I spent several months doing all the testing and procedures. They found I had AFib due to the stress of the pulmonary hypertension. So we had to do procedures to take care of that. They found that I had absolutely no blood flow in the bottom of my lungs. This was by the pulmonary angiogram. You could see it. And so they spent months getting me the best I could be for that very serious surgery.

I had that very serious surgery on June 1st of 2015. I did very well. I was hyped when I went into the OR. It had been a 10-year journey. I told them I was elated. I said, "Please, put me to sleep and bust the CTEPH for me." And they said, "You're a very brave lady." That's all I remember.

I had the surgery, and I was home in about 10 days. I was on oxygen for a couple more weeks. But then I was able to get rid of it. I felt good. No more expensive meds, no oxygen. I felt great. I was out going and doing and trying to make up for all the things I missed. Then at three months, I went back to Philadelphia for a checkup. I did the six-minute walk, no oxygen. I'd just aced it. I was so excited to see my doctor. They did an echocardiogram. He came in, and I was so excited to see him. He said, "Well, we got a little problem." I went, "What? What's the problem?" He said, "Well, you have a little fluid around your heart." I said, "Okay, what do we do? Do we take a pill for that? What do we do?" One more thing. "No," he said, "we have to drain that off." I went, "What?"

So he explained that my heart, which was so enlarged, that had worked for such a long time beating at a marathon runner's pace was enlarged. After the surgery, my heart started to calm down, and so it started to shrink. That area fills up with fluid, that space where it shrunk. This was not good. After that six-minute walk, they immediately put me in a wheelchair, put me back into cardiac intensive care, where they had to insert a tube in my chest. And so I was in there for another week. They drained that fluid off. I had no symptoms of distress. I felt great. They let me go home. And I've been great ever since.

A year after my surgery, they found that my pressures were at the higher end of normal than the middle where they wanted it to be. This was a long ways from when I was very sick, and they were about 120 something. Now they were in normal range. They decided to put me back on a very low dosage of Adempas. I just take one milligram of Adempas three times a day, and I'm doing great.

Now people say, "Are you cured?" Well, I have a hard time with that. I can't say I'm cured. I can say that I am so much better. But I can't walk away from this. It was 10 years total of my life, and I have a hard time walking away. I feel like I have to give back. I'm better, I can do more. But I know a lot of people who aren't. And what can I do? So I am a co-leader of our Northern Virginia PH Support Group. I run a Facebook group for CTEPH, and that gives me great pleasure. I spend a lot of time every day on the computer talking to people, trying to get people to understand that if you have this, this and this, symptom… there are something that you might have. I don't ever want anyone to be as sick as I was. It was the scariest time in my life to know that I really felt like I was dying.

I went through a lot to have my children, and I was in the position that I was scared I was going to leave them. Before all of this, when I was very sick, I was so scared that I wouldn't be here for my children. They were teenagers. I wouldn't be here to see them get married. I wouldn't be here to see them become the teacher and the nurse that I knew they wanted to be. How would I explain to them that I'm dying? That mom's just not sick, I'm dying. But now, now after my surgery, now that I've thrown away the oxygen, I've thrown away the medicines, I did see that daughter become a nurse. I did see that daughter become a teacher. And I am going to be a first-time grandmother. So for all the pain and agony I went through for 10 years, I can't walk away from it. I work every day to help others. But I'm looking forward to a future now.

After all of this, so many people every day of their lives, they complain. After all of this, you learn don't sweat the small stuff anymore. Really. It's just being able to live to end of your day and breathe. It's being able to walk to your mailbox without feeling like you're going to die. It's those little things in life you take for granted that once they're taken away, you realize how important they are.

My children and my husband probably get really tired of hearing me flap my jaws about my story, but I want to reach that one person in the grocery store thinking, "Oh, my husband sounds like that." Or, "My sister has those problems." That's the one I want to reach, because I don't want their relative to be as sick as I was. The more we talk, the more we get out in the not so much the big cities, but the small communities. Up in the hills where there's little hometown doctors that've been there for 40 years. I want to get to them. I want to get to those people. I actually have a relative who's since passed away, and she lives way up in West Virginia. She had pulmonary hypertension. Nobody did anything to help her, and she died. That's just so sad. If we could have gotten her down to the city where good doctors are.

So all the talk we do, whether it's out of my mouth or a podcast or a piece of paper or a conference, that's what gets the word out there. And that's what I want to do. This mouth will work for a long time.

My name is Sarah Brackett, and I am aware I'm rare.

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