I’m Breathing Easier After Receiving My PH Diagnosis

I’m Breathing Easier After Receiving My PH Diagnosis

Welcome to Ellie Bird’s “Chronically Uncool,” a new Pulmonary Hypertension News column.

When I was at university, I had a boyfriend who was obsessed with fitness. I had always been a very active person — I particularly liked to swim — but I had never been much of a gym bunny. By my final year, however, I was going to the gym three to four times a week. I felt great. After taking a bit of a break from my exercise routine amid the study stress of my final year, I noticed that breathing felt a bit different when I got back into it.

The first time it really hit me that something was wrong was when I was on holiday in America. I was on a hike and I could not for the life of me keep up with my friend and her 55-year-old mum! I was so breathless I felt like I could vomit, but I hid it as best as possible, as I was embarrassed. A couple of days later, I was swimming in a lake and was quite far out. This was normal for me, as I’m a strong swimmer. I suddenly thought, “My goodness, I’m so out of breath I just might drown.” Luckily, I was able to yell to my friend, who was paddleboarding nearby, and she came to my rescue.

I chalked up my breathlessness to a bad bout of tonsillitis from which I was recovering. It was only a few weeks later, when I fainted at the gym, that I added “Talk to doctors about feeling breathless!!” to my to-do list. I wasn’t too worried because my dad told me that fainting after an intense lower-body workout was fairly common. But I knew that I’d never had any problems with that exercise before.

Join our PH forums: an online community especially for patients with Pulmonary Hypertension.

It was about a month later that I remembered to mention my condition at a doctor’s appointment. By this point, I knew something was a bit weird. I had found myself getting breathless while doing simple tasks like brushing my hair or putting on my tights.

I look back on this appointment and I’m grateful that I didn’t mince words. I said, “A few months ago, I was working out four times a week. Now, I have to lie down after going up the stairs.”

The doctor was young and relatively inexperienced, but she did exactly the right thing: She went to get a second opinion from another, older doctor. They both said it sounded serious. I could have a blood clot on my lungs, and I should take myself straight to the emergency room.

At this point, I rang my mum.

***

It wasn’t a blood clot. Just a few weeks later, I was diagnosed with idiopathic pulmonary arterial hypertension.

After my chest X-ray, I had heard pulmonary hypertension bandied about as a possibility. My dad did some research and said we definitely didn’t want it to be that! My boyfriend’s mum, who was a nurse, said it was unlikely to be, as I didn’t have any ankle swelling. I did a minimal Google search myself (I didn’t fall down the click hole), and it wasn’t good. The words “very serious” and “progressive” were all I could take in. The prognosis was awful. There was no way I could have this.

However, after an echocardiogram, I got a call. I remember the cold feeling that spread all over me when I heard the diagnosis. My mum cried; that was the worst part.

Two of my closest friends were staying with me at the time, and I was so happy they were there. They hugged me and distracted me with silly movies. I wrote a bucket list, a list I now know includes some things I’ll likely never do (but that’s a story for another column).

I thought my life was over. I imagined I had a few months — a couple of years, at best.

I was getting a bit ahead of myself. A week or so later, I went in and was officially diagnosed by my specialist team through a right-heart catheterization.

The team was (and are) brilliant, reassuring, and positive. They explained to me that while it is a very serious illness and there is no cure as such, there are lots of different medications that can manage the condition for a long time, and new ones are being made all the time. Thank you, modern medicine!

I am very happy to say that, two years later, I am still doing well. I live an active life, I work, and I feel relatively normal most of the time. However, every doctor’s appointment is terrifying because I never know what’s going to happen. It’s tough, but my approach is to live life to the fullest, find comfort in a community of people like me, raise awareness about this disease, and remain positive!

***

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

4 comments

  1. Hello Eleanor, Pulmonary Hypertension is my diagnosis also, not sure it is the same. My symptoms are somewhat different than your, but then I am eighty one, starting my third year with this disease. Enjoyed your column, thank you for writing. I wish you well, Marianne

  2. Robin says:

    Miss Eleanor, you have described my diagnosis and life almost to a t. Of course different athletic things in the beginning, but I was diagnosed two years ago too. I’m on a trifecta of PH meds and 24/7 O2…and I’m breathing so much better. I’ve gotten over the mindset that PH is a death sentence but I do try to live everyday to the fullest. I have been blessed by the diagnosis.

  3. Roseann Cuppari Mitchell says:

    Hi Eleanor, in 76 years young and was diagnosed with idiopathic PAH 6 years ago. If you take your meds faithfully and do as your doctor says you will have a long and happy life. Don’t let anyone discourage you and always have a positive attitude. One bad day will equal 3 good days. Take care and God Bless

  4. Jen Cueva says:

    Great job on your first column, Ellie! I am happy to learn that you mentioned the concern about your change in physical limitations. Often, It’s changes like these which potentially help us when searching for a diagnosis.

Leave a Comment

Your email address will not be published. Required fields are marked *