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Member Spotlight: Pulmonary Arterial Hypertension, My New Reality

Posted on April 30, 2020

I’ve come to a place of appreciation with pulmonary arterial hypertension, commonly referred to as PAH, since I was diagnosed with the illness on December 9, 2019. To start, I had to accept its very existence in my life. I then had to accept that it would impose some limitations in my daily life.

The most difficult thing to wrap my head around was accepting this was the new reality I’ll be living with. PAH is chronic, progressive, and — at this time — incurable. So you treat the symptoms the best you can to slow down the progression of the disease, and start the business of adjusting to this new world. Finally, I had to accept that if I chose to ignore the diagnosis, I would not be successful.

Turning 50 was not my dream birthday, but I had every intention of making it my best decade yet. My partner and I were planning to travel, and Germany was first up — as soon as summer was gone. We vowed to get out and enjoy ourselves as often as we could. That should be an easy goal since we live in New York City and the possibilities are literally never-ending.

I considered myself generally healthy for my age. I am a proud gay man who is HIV-positive. I was diagnosed with HIV on May 11, 2002 and had managed it well over the years. I also take medication for high blood pressure, and I was told recently I have the beginning signs of emphysema, but I haven’t experienced problems with either of those.

Until three-and-a-half years ago, I had spent my entire life in Michigan. Then new adventures led me to New York, where I live in the Bronx. I have three grown children and eight beautiful grandchildren all living back in Michigan. They are always concerned about my moving so far all by myself, so I was motivated to show them older does not mean unable. I’m active, full of life, energetic, and in my prime — I thought.

That’s what I get for thinking! LOL! I should have never gotten too full of myself. It seems the Universe just flipped a switch on me about a month after my 50th birthday. I really don’t recall any indication over time that I had this monster growing inside me. All I do know is when it made its presence known, I was forever changed.

September 3, 2019 started normally and ended so very “Twilight Zone,” it knocked the wind out of my sails. I was rushed to the emergency room that night positive I was having a heart attack. When I was released a few hours later, I was confused that doctors found no evidence of a cardiac issue. “Take it easy and reduce stress” was the plan of action I was given. After two weeks of rest, the fatigue, shortness of breath, and outrageously high blood pressure and pulse were even worse.

My follow-up appointment was the start of the new path I quickly learned. The electrocardiogram (EKG) I was given showed abnormal results, triggering referrals for other tests and a specialist. I had an echocardiogram done before seeing my new cardiologist two weeks later.

That test showed I had very real, and very serious, problems going on with my heart. The right side of my heart was very enlarged. Three of the valves that control blood flow through the heart were damaged, and significant regurgitation was happening. I had also started swelling by this point. My feet up through my stomach — and even my neck — were retaining fluid. After seeing the cardiologist a couple of times, I was not showing improvement. On November 22, 2019, I had right and left heart catheterization performed in hopes of getting some answers.

On December 9, 2019, I was sitting in the office of a heart-failure cardiologist. Even though I was barely able to walk a few feet without stopping, I was unaware of the severity of what I was about to be told.

This was the first time I had ever heard of pulmonary arterial hypertension or the very real way it was causing my symptoms. I was very ignorant about PAH for sure, but was about to get a very big education about this — as well as the entire pulmonary hypertension family. I’m thankful that I’m a quick study and take to new information fairly easily.

I was prescribed oral meds, but realized pretty soon the meds didn’t seem to be helping much. By January 2, 2020, I could barely breathe. I was just resting and not eating much of anything, and I was so tired I could barely think.

My lung pressure was at 45 when I was diagnosed. That’s more than double the acceptable high limit of 20, and that 45 was measured under anesthetic. I was told we had to get the lung pressure down immediately to stop further heart damage, and more importantly, to stop the risk of heart failure.

On January 9 this year, I had CardioMEMS implanted. This sensor is placed in the pulmonary artery and collects data from inside, which I transmit back to the doctor from home each week. On January 17, I was admitted to the intensive care unit to have a central line catheter placed in my chest and I started IV Epoprostenol therapy. Thirteen days later, I had adjusted to this new medicine, and I was sent home to start home infusion therapy.

I had to retrain myself how to live with this illness, and this infusion pump, both of which I would never be without. I learned how to care for the catheter, as well as the pump and supplies invading my life regularly. I was now responsible for mixing my medicine each day, and I have to change the medicine and infusion pump every day. There are days I also change the tubing leading to my catheter and the batteries in the pump to keep the meds flowing. I am the one in charge of keeping everything as clean as possible to minimize the chance of contamination or infection.

Now the day-to-day living had to change. I learned I’d better slow it down, take my time when doing anything, and start to prioritize my life. I needed to declutter and destress every area of my world to fight this illness.

I’m much more flexible now because it became apparent immediately that any plans I make for my day will very likely change on me. Accept help, but learn how to ask for it first. Stress has to go because it will make everything worse in the long run. Be humble. Find one thing each day to smile about. Find your center, and try to stay there.

I had to accept and adjust for PAH, but it brought me to an unexpected place today. After the experience I just lived, I had learned to appreciate the illness.

Yes, appreciate my diagnosis of PAH — as shocking as that seemed. I am seeing things in a very different way now. I now truly see just how fortunate I am. Loving family, supportive partner, the most caring friends. Slowing down out of need means seeing the world without rushing. In that sense, I feel my diagnosis was a blessing from the Universe. Now I can say I appreciate each day and every experience so much more. For that, I’m grateful for pulmonary arterial hypertension.

This article was written by myPHteam member Kevin Kohari as part of the Member Spotlight Series.

Do you want to be a part of the myPHteam Member Spotlight Series?
Let us know here: support@myPHteam.com

A myPHteam Member said:

Yes,I enjoyed your story.I am one 3 different meds. very pricy ones too,thank goodness I don't have to pay for them as,I am in a program that so far has… read more

posted about 2 months ago

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