Our Journeys

Patient Story

Linda Lee Stewart

"I understand knowledge is power and so is paying attention to your body and recognizing changes."

Linda Lee Stewart

I consider myself still very new on this journey. I am sure my PH started silently years prior to August 2009. That is when I experienced a minor TIA (which is often referred to as a mini stroke). That started a carousel round of tests including an echocardiogram and sleep study. My primary care physician informed me I had elevated lung pressure. She called it pulmonary hypertension.

Well now, there starts the journey. The doctor of choice is a pulmonologist. And again a battery of more tests continued with a final suggestion: you need to see a cardiologist.

I was shuffled off to a cardiologist to get a PAC. A PAC, or a pulmonary artery catheterization, is the insertion of a catheter into a pulmonary artery. The catheterization purpose is diagnostic and it is used to detect heart failure, monitor therapy, and evaluate the effects of drugs right atrium, right ventricle, pulmonary artery, and the filling pressure ("wedge" pressure) of the left atrium, etc.

I received the PAC and both the cardiologist and pulmonologist were so pleased to announce it wasn’t PAH, pulmonary arterial hypertension. Instead, they arrived at the conclusion of venous pulmonary hypertension. They informed me all I needed to do was lose weight, take my medication and all would be well. Literally, I was led to believe it was a minor issue. A follow-up suggestion was given to see the cardiologist and stay on a beta blocker and a water pill. No suggestion was made regarding a follow-up visit to the pulmonologist.

However, I believe one piece of the puzzle wasn’t factored into the equation. My rheumatoid factor has always been high and steadily climbing. I was diagnosed in 1995 with an autoimmune disorder called Sjogren’s. I have definite issues with this autoimmune disorder, especially sicca syndrome. DRY everything! Sjogren’s commonly affects the eyes, mouth, parotid gland, lungs, kidneys, skin and nervous system.

Sjogren’s is considered an inflammatory connective tissue disorder of unknown etiology characterized as an autoimmune exocrinopathy (problem with the exocrine system) and can be categorized as primary or secondary. More plainly put, the body is attacking its own gland system either by itself or because it is joining in with another disorder playing havoc on the body.

This particular disorder is still minimized. Even in the field of rheumatology. My experience includes comments like, “That will certainly affect the eyes and mouth but is not likely to affect anything else.” Hmm, I am thinking, tell that to my body!

I tried going to a gym but had to stop because of shortness of breath while using a treadmill. I tried to keep my heart rate fairly low between 90 and 100 beats per minute. But, I just couldn’t catch my breath. So, I gave up and went about my daily life for another year.

I started realizing it was too much to go grocery shopping; I couldn’t carry in the groceries without being extremely winded. “What is going on?” I would think to myself and find ways to get around those little inconvenient episodes. I even went on a three-mile walk (in a wheelchair) for my granddaughter who has MS. Hello!

My husband started doing many of my chores to pick up some of the slack. He was noticing changes too.

One day while attending an event that required walking up a very slight incline, I realized something was very wrong. I had to stop several times.

There are many activities that I am no longer doing because of shortness of breath. Things have changed ever so slowly. Looking back, I realized my loss was much greater and I wasn’t paying attention to my body.

That was a very lonely moment in time as I realized I needed to seek further help.

I went back to the cardiologist. The echocardiogram was repeated. Even a CT heart scan was ordered just to make sure the heart was doing okay.

Results showed leaky heart valves and lung pressure in the 60s. I could not believe what I was hearing. What?

Perhaps I need medication adjustments and a pulmonologist.

The cardiologist connected me with a new pulmonologist. He will have several tests to peruse over. Lung CT scan, heart CT scan, echocardiogram, etc. And, I hear he is up to speed on the effects of Sjogren’s on the lungs. Now we are talking!

It is a continuous journey with many ups and downs, and I am hopeful I am on the right path.

My husband and I will be attending a forum on the many therapies for pulmonary hypertension. I understand knowledge is power and so is paying attention to your body and recognizing changes.

How will I cope?
Haven’t got a clue.
But, there’s always hope,
I know it is true.
Will more changes come?
Surely they do.

 

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