Patient story

Lindsay Johnson

In the fall of 2007 I had started to put on some weight and decided that I should start to get more exercise. I started going to the gym regularly and doing what I could at home while still gaining weight. The worst part was that I never felt like I was getting in better shape. Once, while walking up the stairs to our second floor apartment I got really out of breath and as soon as I got inside I collapsed on the couch. I was in extreme pain and remember thinking that it was weird because it felt like my body was not getting any oxygen.

In January my husband went on deployment for the Air Force and I went to Kentucky to stay with our families. The entire time I was determined to get in shape so I got a bike which I rode everywhere and joined a gym that I went to several times a week. Well, none of it worked. I got in worse shape and gained more weight. I would have to sit down after walking up six stairs and once even passed out. It was horrible.

My husband returned and we moved from Oklahoma to Texas. I finally went to see a doctor and he said that I had a heart murmur and wanted me to get and echocardiogram. Well I did and then a lady called a few days later to tell me that I had severe pulmonary hypertension. This was in September of 2008. They then ran all kinds of tests and couldn't find any cause so they told me that it was primary pulmonary hypertension.

They then did a heart catheterization to see how bad it was. It wasn't so bad because I was asleep for pretty much the whole day. Then when I finally was able to get up to go to the bathroom and I had a re-bleed. I literally gushed blood all over the bathroom so I had to stay for quite a while longer. It wasn't much fun and got bruised up from all the pressure that they had to put on my leg to stop the bleeding but I healed just fine.

They said that the blood pressure in my lungs was twice as high as it was supposed to be. I was really freaked out because I was only 23 years old and facing a fatal heart condition. Not to mention all of the working out that I had done over the previous year that could have killed me. I didn't know what to do, so I turned to God. I asked him for strength and help and realized that if I was meant to have this disease and die young, then so be it. Sure there were lots of things that I had wanted to do that it seemed I never would be able to, but I found peace because I trust God.

They set up an appointment for me with a specialist in Dallas but before I went there my husband and I went home to visit our families for the holidays. It was weird because I was having a much easier time walking up stairs and just doing basic things. It was really weird and exciting.

When I went to Dallas I told them that my symptoms were improving and they basically said that that made no sense at all and they wanted to do another echo to see what was going on. I had to have it done at the cardiologist’s office back in Abilene and then it took a couple months for me to finally get the results. They told me that everything looked completely normal! They said that I should just go back to living my life as if I had never had the disease and that they hoped to never have to see me again. It was the best news I have ever gotten.

Of course, this makes no sense. When I tell new doctors about my medical history they think I must be confused. They keep telling me that it is impossible and that they don't know what happened and basically just seem really confused. I don't know why or how this all happened to me but I am so incredible thankful. It is the best miracle that I have ever witnessed.

My heart really goes out to people that still struggle with this disease. I know what it feels like to get winded from the simplest things and to have your heart feel like it is going to pound right out of your chest. I even had a couple of nights where my heart would beat so hard and I would get so lightheaded and my body would be in so much time that I was sure I was going to have a heart attack and die right then. It is a really scary feeling. I pray that people will be able to find out more about this disease and eventually find a cure. I pray that it won't come back to me. I pray that people who have been diagnosed with this can have peace and go on to live the rest of their lives as normal as possible.

Before I started to get symptoms I was taking the birth control pill Yaz. I took it for a year total starting in May of 2007. It now seems like it can cause pulmonary hypertension. I was convinced the whole time that the pill had something to do with it, even though the doctors said that it was not possible. Apparently it is.


FacebookTwitterInstagram iconLinkedInYouTube

For optimal viewing of, please use a standards-compliant browser such as Google Chrome or Firefox.

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

801 Roeder Road, Ste. 1000, Silver Spring, MD 20910   Patient-to-Patient Support Line: 1-800-748-7274
    Privacy Policy    Provide Feedback & Report Bugs

Designed by Matrix Group International, Inc.® | © 2016 Pulmonary Hypertension Association. All Rights Reserved.


The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.