Angela Brown - phaware® interview 565

The Daily Discipline of PH: Living by the Liter and Label

Most people don’t count every sip of water or every grain of salt. Angela Brown does. This episode dives into the daily discipline required to live with pulmonary hypertension—from navigating restaurant menus to surviving a exotic vacations in sweltering heat with strict fluid and sodium limits.

My name is Angela Brown. I live in Toronto, Canada. In April of 2024, I was diagnosed with pulmonary hypertension. It started towards the end of 2022. I wasn't feeling well. My legs would swell up and I would have problems walking and breathing. It got really bad. If I had to go to a hospital visit, my brother-in-law who was dying of cancer, when I walked with the mask on, I could barely breathe. I was hyperventilating. I knew something was not right, but because we were dealing with my brother-in-law's illness and we knew he was going to die shortly, I didn't tell anyone. Then, he passed away and we had the funeral. Then, I told my daughter, "I need to go to the doctor because I'm not feeling very well." So, we went to the doctor's office. 

When we got there, I couldn't even walk from the parking lot into the building. I had no energy. My legs hurt. I just felt like I couldn't move and I stopped. It was raining and I just stopped in the rain and just stood there. She said, "What's wrong with you? Come on, let's go get inside." I got inside the building and then tried to walk to the elevator and I passed out. That was the beginning of the journey. 

They did some tests, chest x-rays. They told me that my lungs were congested. That’s all it was and I had nothing to worry about. They gave me antibiotics and that would solved the problem. I finished the antibiotics, but that didn't solve the problem. They told me to go see my cardiologist, which I did. She did some tests. She said the pressure in my lungs was a little bit high, but she didn't really explain what that meant. She said, "We're going to have to send you to a lung specialist."

They made an appointment and almost two months later, I went to see the lung specialist. When I got there, he said, "I looked at your chart.” I have a lot of chronic illnesses. He said, "But I can't help you with what's happening to you because I don't work with that. I work with CPAP machines." So, he sent me to a different lung specialist. It took another month and a half to two months. That was the first time I heard of pulmonary hypertension. He said, "Looking at your charts and everything else that I've seen, I think you have pulmonary hypertension, but I have to confirm it. In order to do that, we have to do some tests." He did blood work. He did walking tests. He did chest x-rays. You name it, he did it. A month later, I went back and he said, "I still think you have pulmonary hypertension, but I still have to prove it."

Then, he told me he needed to do a right heart catheterization. There, they told me that there's a medication they could give me that would be able to help my pulmonary hypertension. They gave the medication and then, four weeks later, I went back and they did the test again. They said they have to wait a little bit longer to see if it would work, because so far it didn't look like the medication was helping. So, I went back six weeks later. They gave me another medication on top of the one they gave me before. I went back six weeks later. They said they saw a little bit of improvement. So, it's been over a year since I've been diagnosed. 

Having pulmonary hypertension and having to take medication is not the only thing that you have to do when you have pulmonary hypertension I realized. Of course, you have to cut salt out of your diet, so no sodium or a little as possible. So, I have a low sodium diet. I can only have 1.5 liters of liquid per day, so I have to measure everything that I drink. 

At first when they told me, I thought it was 1.5 liters of water per day, but when I went back they said, “No, it's 1.5 liquid.” So, anything that produces liquid. If you have fruits, fruits produce liquid. You have to measure that. If you drink water, if you drink pop, milk, juice, whatever, it has to be measured and it cannot go above 1.5 liters per day. It is very hard. Some days are a lot harder than others, because you want to drink something and you can't because you only have a little bit of liquid left. I'm thirsty, but I can't drink anything. It's very hard. No sodium is very difficult, as well, because everything has sodium in it. I didn't even realize even a candy or a chocolate bar has sodium. So, basically, I have to look at every single thing. 

I went to Jamaica for my niece's wedding and it was crazy because it's hot. When it's hot, you want to drink more, but I can't. I still have to, even though I'm in a foreign country, I'm on vacation, I still have to stick to the 1.5 liters of liquid per day. I still have to find food to eat that has no sodium or low, low sodium. It was a struggle trying to find something to eat. At a resort, every night, they had a guy who made stir fries. I told him, okay, I need stir-fry, but I need no salt.

Miraculously, he said, "Okay, I'll get some meat from the back that's in the fridge that's not seasoned yet and I'll cook it for you." That's what he did with the vegetables and the pasta. That's what I ate every single night for seven days because it was the only thing I could find that I could guarantee 100% does not have sodium. I also went to a hibachi restaurant in Jamaica, as well. I told the chef ahead of time, I said, okay, no salt. Make my food first and then make everybody else's food. That's what he did. So, it's always in your mind the no sodium and the liquid. It's always in my mind. If I forget, I have my daughter who reminds me 100%. When I go to a restaurant, of course, I have to ask, “OK, what can you cook me that has no sodium?”

I try to find restaurants that cook from scratch, like right there. This restaurant, they cook it as you order it. So I can say, okay, I want salmon, please. Let me put some pepper on it. Don't put any salt. Just put some pepper on it. Food doesn’t have the same taste it used to. I told my daughter, I said, I don't eat for pleasure anymore. I just eat because I have to, because the food is bland. I didn't realize that sodium makes such a big difference in food. I buy all the no-salt, seasoning that I can find. Mrs. Dash, this particular one that has no salt and other seasoning, Mrs. Dash, Clubhouse and some other ones. They make you food a little bit more tasty, but the food is a lot less tasty without sodium, but this is my life. This is what I have to go through.

Being someone who has a lot of chronic illnesses, I've gone through this process before many times, before getting a diagnosis. When you finally get a diagnosis, you're like happy for a minute. You're like, yes, but wait a minute, I'm sick. I just have something. They told me my prognosis was severe, so you have severe pulmonary hypertension. So I was happy that finally you can tell me conclusively, this is what I have. But then, I remember all the things that I've read and all the things that go along with it. I started reading. I remember Natalie Cole, the daughter of Nat King Cole, died of pulmonary hypertension. I never heard of pulmonary hypertension, but suddenly I can tell you stars that have died from it and all these things. Each time I tell my daughter, she tells me the same thing, "Mom, stop reading Google."

It's just a cycle of doctor's appointments and letdowns and going to the doctor and hoping for a diagnosis and being let down. To just go on and on like that for two years, it's rough on your mental health. I think anybody who has a chronic illness is resilient, because you have to pick yourself up and go every time. We go to the doctor's appointment, you feel down, but you have to pick yourself up. You have to keep going. I would say to anybody who's just being recently diagnosed with pulmonary hypertension, try not to Google everything and try not to read so much stuff about it, because you just scare yourself. You just put yourself into a mindset that's not good. I was so depressed about everything after what I read, but I had my daughter to keep telling me to stop reading and just focus on only what the doctor says and not reading all this stuff out there.

Everybody is different. There's not a one size fits all when it comes to pulmonary hypertension. When you read all that stuff, that is a possibility, but it doesn't mean it's a possibility for you. That's what I learned. It's just there. This is what has happened to other people in the past. You may be lucky and it's not as bad as what you've read or it could be worse than what you've read. In any case, just try to keep calm. Try to focus on your doctor and what your doctors are telling you to do and not everything else that's happening. 

I know it's scary when you're first diagnosed, but you just got to go through the process with the doctors and trust your doctors. Celebrate the wins. I went to the cardiologist and she said everything looked good, way better than it did a year ago. That's a win. I celebrate that. When I saw the pulmonologist and he said, "Everything looks so much better than it did when you first got here." I celebrate that as a win. It doesn't mean that I'm cured or I'm out of the woods, but it just means that things are progressing good and you just have to take that in and keep going with your life. You may have a few restrictions here and there, things that you have to do that's going to make it difficult, like with no salt or counting your liquids, things like that. But it's a win-win. The doctors smile at you and say, "Oh, things look good." Take that as a win. 

My name is Angela Brown and I'm aware that I'm rare.

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