Tag Archives: Asthma
Learning to Live with Pulmonary Hypertension
August 3, 201448-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.
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 it 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.
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 backwards 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.
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.
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. 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.’
I had to reform my thinking. My doctor told me I had to lose weight. 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.
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 anxiety 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.
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 with anybody. I was mad. I thought, ‘Why can’t I work?’ I thought my life was done.
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.”
Posted in Diseases, Featured, Uncategorized | Tagged Asthma, crash blood pressure drop, disease, heart, high blood pressure, light headed, lung, lung biopsy, mari jackson, pah, PH, pneumonia, pulmonary arterial hypertension, Pulmonary Hypertension, right heart catheter, seizure | 8 CommentsJewell’s Story
October 5, 2012I would have to say my situation started back in the ’90s. I was experiencing a shortness of breath and would be sick with bronchitis a lot. I decided to go see an allergist and he put me on shots, I took them for about 10 years. It did help me but I still had the shortness of breath. My internal medicine doctor back then decided to do a chest x-ray and when she saw the results she decided to send me to a Pulmonary Specialist.
They diagnosed me with mild asthma and also did a lung biopsy. They said I had scar tissue on my lungs but never really told me how bad it really was. I was treated by this doctor for a number of years with steroids, antibiotics and breathing treatments. As the years went on I became sicker more and more often. I would have periods in which when I would cough I would black out for a few seconds, however the doctor didn’t make a big deal about it.
Fast forward to 2010, I started to have a lot of weakness and fatigue. One day while driving home I began to choke on some water and I blacked out while driving. When I came to I was making my way over to the next lane on the interstate. I know that the Lord was with me that day because otherwise I would not be talking to you today. I didn’t go to the doctor until about a week or so later when I began having severe headaches and weakness. I thought it maybe was a toothache so I made an appointment with the Dentist.
On the day of the appointment, I had to climb a flight of stairs and by the time I got up those stairs I was gasping for breath. My dentist told me he would treat me for my toothache but he said I needed to see a doctor becayse he believe I had something very serious going on, pointing out that my hands were blue!
I called my Internal Medicine doctor and she ordered tests on my heart and blood tests. They would not let me go home because of the severity of my condition. They also conducted a CT scan of my lungs. The doctors came in and told me I had Pulmonary Hypertension.
They immediately started me on medicine (this was in July of 2010) and then in October of that same year I started to see a pulmonologist who put me on medicines related specifically to Pulmonary Hypertension. I am now also on oxygen pretty much all the time and I am doing Pulmonary Rehabilitation to help build up strength and endurance for my body.
It has been very encouraging and inspiring to do. I would like to say it has affected my life in many ways. It has affected my physical relationship with my husband who does not always understand and who is also dealing with his own health issues. It has affected my daughter and grandchildren as they were very worried about me. But, I am a fighter and refuse to give up because I know my Lord Jesus Christ is my healer, my rock and my shield and He will heal me.
I would like to say to all who are battling this disease or anyone who has a loved one who is battling it, to always support them, love them and pray for them and know that the Lord is with you and with them. I hope that I have been able to help or encourage someone today.
Posted in Diseases, Events, Featured, Media Center, Uncategorized | Tagged Asthma, Pulmonary, Pulmonary Hypertension, Shortness of Breath | 6 Comments
