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Patient story

Irene Adkins

"I don't know what the future holds. I am still scared as we all are, but I feel fantastic and am hoping to stay this way for a very, very long time."

Irene Adkins

Hello all, my story probably started years ago, but was not caught until recently. I had always been susceptible to chronic bronchitis and asthma, and then a couple of years ago I came down with a mysterious viral infection. I began noticing that I was becoming more and more short of breath, and I would have to stop and rest after walking just a few feet. I had been on treatment for high blood pressure for years, but decided to go see my doctor.

My primary care physician advised me to go and get an echocardiogram, but being that I was so freaked out by doctors, I did not go. That was back in 2007.

By August of 2010 I could barely do my job and was constantly fatigued and short of breath at the least bit of exertion. I was obese and figured it was just due to that. I was feeling so bad and was so scared, that I finally went to a cardiologist.

I was immediately sent to the emergency room for a CT scan for a possible blood clot in my lungs. It turned out that I did not have a clot but something else was wrong. I was sent by my cardiologist to a pulmonologist. In August 2010, after the usual testing, I was diagnosed with pulmonary arterial hypertension (PAH).

I was put on Lasix for edema in my ankles, Adcirca, and Letairis. I did not tolerate the Letaris very well, so they had me drop it. By this time, I felt horrible. I lost my job, lost my apartment and had to go live with my son, his wife and my granddaughter. I am so very blessed to have them in my life, and without hesitation, they made me feel at home.

I started to feel a bit better on the Adcirca, but decided I wanted to go back on Letairis after reading that it is one of the few drugs that halts the progession of PAH. I tolerated it just fine this time around. I have now been taking these two medications along with Lisinipril,

I feel better than I have in many, many years. I can walk for very long periods of time and never get out of breath. I go to my local grocery store, and walk up and down every aisle every day. I have been losing weight steadily. I had an echocardiogram just the other day and my right heart is still enlarged, but it is pumping just fine and at levels it should be. The PAH is still causing the enlargement. My lab work is good.

I don't know what the future holds. I am still scared as we all are, but I feel fantastic and am hoping to stay this way for a very, very long time. I thank God every day for what other people take for granted, the ability to walk normally and go upstairs normally, and breathe deeply. Might not seem like much to healthy people, but to me it is everything. I hope and pray research leads to a cure and/or better drugs to keep us all going to a ripe old age! God bless all of us and hang in there.

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.