I have had my good times and I have had my bad times with this illness. I think everyone can relate to having good days and bad days in general, especially if you too live with a chronic illness.

When I was first diagnosed I noticed many of my symptoms while trying to exert myself. I was unable to talk with friends while walking as I was winded. It took me an exceptionally long time to climb a flight of stairs and afterwards I was also rendered out of breath for several minutes.  In matter of fact I breathed heavily in general, and people noticed. I was overweight and a former smoker at this time – and these things were where the blame was placed.

By pushing myself – my heart had to work harder and is now enlarged. An enlarged heart does not pump blood as effectively as a normal sized heart does. This can lead to heart failure.

I pushed myself through, thinking that if I pushed harder – eventually I would feel better. Iwas starting to get migraine headaches –   which I attributed those to the Florescent lights at work. There was also a time that I remember driving down the road with my Mom after we were walking around in downtown Farmington and I received a case of vertigo. I had to pull over and let her drive the rest of the way home.

Right before I discovered that I might have Pulmonary Hypertension my symptoms increased while at rest. This is also how I feel at the current moment and It occurred to me not that long ago of how to explain it to the rest of the world.

Selfie Underwater

Imagine that you dive off of a dock and into a body of deep water. You sink to the bottom and are doing fine. As you rise to the top you start to lose your breath – a tightness in your chest develops and you hurriedly push your way to the surface of the water in order to get  more air. It is that moment before arising to that surface that follows me on my worse days.  Except the only relief that I have is by using my supplemental oxygen and it is not always able to help me as much as I would like it too.

There is less oxygen in higher altitudes. I felt very sick soon after entering Denver with my cousin Heidi. I felt nauseous, was out of breath and looked terrible!

When I am short of breath like this it leads up to a burning sensation in my lungs – in which I can feel mostly under my shoulder blades on my backside. It  feels the only comfort that can be had is if someone rubs my back – however this doesn’t really fix things – it merely refocuses my senses to something different I think. I also have many moments when my heart races. They say someone with PH their hearts are always running a marathon. This is very true. At times I find humming soothes this symptom and lowers my heart rate. I had a cardiologist explain that it made sense as humming changes the pressure in your heart and I suppose this brings a little relief to my system.  This of course can lead to fatigue and there have been times that I have just had to absolutely go to sleep and have slept for many hours straight.

For me these are the largest symptoms I experience on a daily basis. In general people with pulmonary hypertension have an increased risk to faint & I have had some starts to fainting spells but know to sit down and put my head in between my legs. People may develop a blue color to their skin which may be more noticeable on their lips and in their extremities. And also swelling of their hands and feet. Recently I have started to experience this, but started on Lasix and it has made all of the difference.

I love the days when I feel like I am above the water!

During my better days , being short of breath sometimes goes unoticed. I love these days. I feel like my old self. It is definitely just like getting over a cold or the flu – you feel amazing afterwards as you had forgotten for a while what it felt like to feel good.  I have had some time periods in the last three years that I have had several weeks of feeling fine at a time.

In hindsight I believe these times were because my life was perfectly balanced for what my needs were. I will talk about finding balance in it’s own blog post – because it is something that I have struggled with recently – and think that everyone struggles with at times – yet it is so important for our health and especially important for me at this time as I struggle to survive with this deadly condition.

Much Love,

S.Myles