Learning To Live With Pulmonary Hypertension

48-year-old Mari Jackson had worked since the age of 12. But last year, a diagnosis of pulmonary arterial hypertension forced her to slow down and approach life differently.

When Diagnosed With Pulmonary Hypertension?

I got diagnosed with pulmonary hypertension last March. The symptoms started in February of last year, right around my husband’s birthday. It was like something out of the blue.

We had gone to dinner to celebrate his birthday and came home, and I said, “I’m going to get ready for work.”

I went upstairs to take a shower, and when I got off the bed to walk towards the bathroom, I just blacked out. When I woke up, I was on the floor, and I was face down by the sink.

I called my husband, and he and my son came running up the stairs, and my husband said, “What are you doing on the floor?”

I said, “I have no idea. I just blacked out.” My body had just shut down. I was so embarrassed.

But I didn’t pay any attention. I worked for a mortgage company. Believe it or not, Monday through Friday, I drove every day to work—44 miles round trip. I worked anywhere from 10 to 12 hours a day, and I worked weekends and overtime.

Do The Symptoms Continue?

I had an episode every weekend. I would pass out. I actually had a seizure one night. My husband noticed that every time I would go upstairs, I would get really, really light-headed and either fall backward or lose my balance.

So, one night he came upstairs with me and said, “Let me just help you into the room.” I was using the bathroom, and I was sliding off the seat. I had a seizure, and he was right there to catch me, and I bit my tongue, and it was so weird because I had never had that happen.

When Do You Start To Take It Seriously?

He took me to the ER, and they ran a lot of tests. They said, “We don’t see anything, but we do see that you have pneumonia.” So, they gave me antibiotics for that, and I went home.

The first Saturday in March, I went to work. I got upset about something, and the whole left side of my arm turned ice cold. It was numb, and I kept shaking it. Then, I started sweating.

I told my manager, “I’m going home. I’m not going to be able to stay.” My manager said, “You don’t look well,” and he called my husband.

My husband came and got me and took me to the emergency room. My blood pressure was 280 over 190. They said, “You’re not going anywhere, so get comfortable.” I ended up having to be admitted. They ran some more tests, and I stayed there for a week.

They did a lung biopsy, and then a right heart catheter. They did a crash blood pressure drop on me, and they would give me blood pressure medication three times a day. I felt like somebody was coming in and beating me.

I said, “Why do I feel this way?” They said, “We have to get your blood pressure down.” I had no idea because my pressure was always high.

The Shock!

Once I got all the test results back, I met with my pulmonologist. He told me I had pulmonary arterial hypertension, that basically, my heart and lungs are not friends right now (Some tips for caring your lungs). I had no idea that my life was going to change.

I was devastated. I wanted to go back to work. And I couldn’t. I couldn’t even go up the stairs in my house. I either stayed upstairs or downstairs. To walk from my kitchen to my bathroom, I was gassed out. If I got up too fast, I fell out. If I dropped my head too long to tie my shoe, I passed out.

I couldn’t understand it. I got mad. I questioned myself. I questioned God, and I know that wasn’t the right thing to do, but I didn’t know what else to do. I wanted answers. I prayed for understanding.

Then I just started learning. I got on the websites and started learning about PH. There were things I had to do differently. I was confined to my room for six weeks because I couldn’t go up and down the stairs. I had to sit on the stairs and go up backwards. I was a very independent person. Then to have to rely on someone to cook me breakfast, to get me water, I thought, ‘This is unreal.’

What Is Your Advice To Others?

I had to reform my thinking. My doctor told me I had to lose weight using one of the available supplements like LeanBean. And I thought, ‘Well, how is that going to happen if I can’t exercise?’

So I had to learn how to cut back on carbs, sodium, and to fall in love with water. I was 325 pounds, and now I’m 260, and I feel much better than I did a year ago. My doctor actually told me last week, “Compared to how you were last year, you would have never known.”

It just happened. I have had asthma since I was a little girl, but I only had one flare-up as an adult. PAH hides behind asthma, and then it explodes all of the sudden. People with asthma have to be very careful and have things checked out extensively. There were no gradual signs.

Every time I would go to the doctor, my blood pressure would be high, and they would ask, “Do you have high blood pressure in your family?” And I would say, “Yes.” And they would ask, “Well, how do you feel?” And I would say, “I feel fine.”

But passing out and having seizures, never had I experienced that before. I was going through my own thing.

I didn’t really want to talk to people, because I couldn’t talk. I was gassing out. The longer I talked, the worse it got. You could hear I was struggling to talk. Last year, I was in a wheelchair.

I was scared because you read things on the internet about your life expectancy. Then you read about all the new medications that have been FDA-approved. You’re hoping and praying that one of those will work for you.

The Most Bad Year

This year is like a complete turnaround. I have a lot to be thankful for. I’m able to walk distances at my own pace. I still use a wheelchair in big places. I don’t do the mall. I get anxious around a lot of people because I feel like, if something happens, I’m not going to be able to get out. I try not to go to a lot of places by myself, and if I go somewhere by myself, I let someone know where I am. I have a Life Alert.

When I walk, I do so at my own pace. If I get tired, I stop. I do all right. [Recently] I went to the doctor by myself. I walked in on my own. But I took my time.

I can’t work anymore—that was the biggest thing. My husband’s work is seasonal. Financially it’s very hard. So, I communicate a lot with other PAH patients. I’m on the website with them. I try to get other ideas from people about what they’re doing.

If I could do volunteer work, that would be good. It’s difficult because I like working with people with disabilities. But I have to be real cautious about my surroundings. If I catch something, I can’t take anything over the counter.

I have two grown children; they’re 20 and 27. My husband has five. I have four grandchildren who live in Washington, D.C. Last year I couldn’t travel because I was sick. Maybe this year, if the weather and my health permit, we’ll take a little road trip to see them. My parents live in Seattle, but I can’t really visit them because of the altitude of a flight.

My youngest son was here for a year, and he was very helpful, but at the same time, he was a teenager, and I didn’t want him to be stuck in the house with me all summer. He ended up going back to California.

I’ve been working ever since I was 12. I don’t know what a hobby is. After I had kids, I went right back into the workplace.

I have a friend, and we’ll get together and have lunch once a month, and it’s nice. I do like to read. I like romance novels. I really got into talking with other people with PAH in my area. I want to look into a chapter here in Charlotte. Maybe I could do something with them.

How Does Healing Begin?

My husband was and still is a very big part of my healing process. He always makes sure that my needs are taken care of, no matter what, even cooking dinner after working an eight-hour day. I really do appreciate my husband, and I thank God for him.

To the newly diagnosed, I would say, “It’s going to work out. Don’t get upset, because being upset starts a lot of things, like stress.” I still do that, but I really try not to.

Sometimes I think, ‘What if this gets turned off? What if I lose my house?’ I realized when I was doing that, it was making me worse.

I went through a point where I didn’t want to be bothered by anybody. I was mad. I thought, ‘Why can’t I work?’ I thought my life was done.

Your Last Words

Now, I just take everything one day at a time. I don’t let anything bother me. I keep it moving. I want to be able to grab, absorb and use everything you give me to the best of my abilities.

I still call myself a newbie. To the newly diagnosed I would say, “Life still goes on. It’s just that you have to take it slow. It’s about you. Nobody else. That’s how it is.”