OUR JOURNEYS

Patient story

Jacky Kelly

"I was diagnosed with pulmonary hypertension (PH) in May 2012. Personally I think that my journey with undiagnosed PH goes back about 20 years or even back to my early childhood."

My name is Jacqueline, but everybody call me Jacky. I was diagnosed with pulmonary hypertension (PH) this year in May 2012. Personally I think that my journey with undiagnosed PH goes back about 20 years or even back to my early childhood. In school I was never good at sports, I was the last to be chosen for team sports or if they could let me out they would. To this day when I see people running, I admire them and wish that I could too.

I have vague memories of people telling my parents to give me onions to eat because that is supposedly good for the lungs.  I have since become a big onion lover.

I had my son when I was 22 and it was a very difficult delivery.  The obstetrician told I was not breathing right, but I did not know another way to do it.

Jacky KellyWhen I was 24, I was hospitalized because I started coughing up blood.  They thought I had tuberculosis, but I was not sick at all. The first time I coughed up blood was at an employee party after dancing a fast merengue number. While I was in the hospital they took x-rays of my lungs almost daily because they said it was disappearing.  From one day to another, when the coughing episodes stopped, there were my lungs again looking healthy on the x-ray .  The day after that x-ray, I was discharged.  They sent me home with a possible cause of a viral lung infection.

Up to this day I can say I do not get the flu. 

At that time I went to Venezuela (since I am from Aruba) for a second opinion and they couldn't find anything wrong with my lungs, but they did say that the right side of my heart was enlarged.

For 10 years I felt okay until one day my ankles started swelling.   After additional testing the doctors found that I had a malignant tumor in my thyroid gland.  This was removed successfully and I was on medication for thyroid.

I did start tiring easily, but I kept moving and started to go to the gym.  I felt great during that time.

Last year my ankles started to swell.  I went to the doctor and was told this was due to my thyroid problem.  Around this time last year my feet where constantly swollen and I started to get more and more tired . I still thought it was because I gained weight since I wasn’t doing any kind of exercise. People told me to drink a lot of water to flush my system, so I drank almost 3 liters a day.  Now I know I was doing the worst thing. In April I was hospitalized and in May they told me I had pulmonary hypertension.

I don't know if I was in denial or what, but I remained calm. I did cry a lot after they inserted by right heart catheter, because after that the doctor told me that a pulmonary transplant was my only option.

But I have to say up to this day I am only on Lasix®.

Here on the island I have no one to talk to, because very few people have it here or maybe they have but are not diagnosed with it.  Since my first episode 20 years ago, I have learned to appreciate life and live one day at the time . I trust my life in the hands of God, because he knows what is best.

Sunny regards,

Jacky

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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.