COVID-19 Road Blocks: Fawn Leuth

June 09,2020

I am a zebra! I enjoy art, playing board games, spending time with my partner, and my two cats and dog. I also like going to the beach and spending time walking in the woods. Growing up I was an active child. I loved dance, gymnastics, hiking, skiing, and horseback riding. In my 20’s I did a lot of walking and never really had any major health issues. I had asthma, but I thought that it was just because my mom was a smoker and my doctor told me the two could be related.

Over the years it kept getting worse, but my doctor reassured me that is what happens with asthma. Not knowing any different, I didn’t question it. From about age 27 I was diagnosed with bronchitis five to six times a year and told it was nothing to worry about. When my partner and I both expressed concern, we were told that it was nothing and not to worry.

Last May (Memorial Day weekend), I traveled to Indianapplas, Indiana for the Indianapolis 500 with my partner and her family. The first day we were there I was going up the stairs. I got very dizzy and felt like I was going to pass out. When we got back, I talked to my doctor and was again told not to worry about it. As the summer went on I could tell something wasn’t right. I had trouble keeping up with my camp kids doing basic things like playing games and going on field trips. I went to my doctor again at the end of the summer and once again was told it was bronchitis and allergies.

A week or two later I went back to the doctor because I couldn’t get rid of the cough and shortness of breath. At that appointment I noticed that I had gained 20 pounds in the time since the last appointment. I let the nurse know and she said that could have something to do with being sick and the clothes I was wearing. That night around 9 p.m. my feet were very sore. I had my partner rub them, and she noticed that they were very swollen to the point where I had pitting edema. From there we decided that it was best to go to the emergency room.

From the time we got there I can’t remember everything that happened. That whole night is a blur. The doctor in the emergency room was surprised that I didn’t know I was in heart failure. There had never been any mention of this possibility before. Within the next couple of weeks I was set up with a pulmonologist and cardiologist at our local hospital. From there I was referred to a Boston Hospital (Brigham and Womans). When I went down for a consultation I was admitted that night unexpectedly.

At the time it was very traumatic (I don’t do well with unexpected changes), but looking back it was probably the best thing that could have been done. During the week I was in the hospital a lot of tests were done, including a right heart catheterization. That is when I was officially diagnosed with pulmonary arterial hypertension (PAH). Since then I have been in the hospital one more time to get a hickman line placed for IV remodulin (the first of three medications).

Since being on medication, life is getting back to a new normal. We have started doing a lot of cooking from scratch to limit the amount of sodium in my diet. We were also trying to go mostly vegan for health benefits as well. However, since the COVID-19 pandemic, vegan options are harder to come by as well as a lot of fresh food.

The other down side to the pandemic is that I was starting to get the strength to go back to work as a substitute teacher, and now with schools being closed I don’t have that income. I am very thankful for Team PHenomenal Hope Unmet Needs Patient Impact Fund. It is a blessing that I will use to get a new pair of glasses, make a car payment, and buy much needed groceries.

Fawn received COVID-19 relief funds from the Team PHenomenal Hope Unmet Needs Patient Impact Fund. Learn more about how this fund supports PH patients at teamph.org/unmetneeds.

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