OUR JOURNEYS

Patient story

Nina AmickNina Amick

To those who read this, I wish you all well and hope this brings you an understanding of PPH, its treatments and the associated side effects. This is my story.

I was diagnosed with PPH at the Cleveland Clinic in October 1992 at the age of 34. At the time of diagnosis, there was little to no treatment available. They tried the calcium channel blockers, but by the time it started lowering the pulmonary pressures the overall diastolic and systolic pressures were to low for me to be able to function. I was placed on continous O2 and was told to go home and get my affairs in order.

I could not understand what I had done to cause this. At first I thought it was tension because I had just gone through a divorce a year earlier, had just finished taking classes at a vocational school and was working two jobs, keeping house, mowing grass and keeping up with two active boys. I was tired all the time, would fall asleep for no apparent reason, breathless on any exertion and then began to pass out. I had passed out before several years before, but attributed it to being overweight. The first time I had gotten so breathless was when I was 17 and trying to run track, needless to say I had to quit track. For years I struggled with being breathless when walking on an incline or any exertional activity. I had tests done including EKGs, echocardiograms and heart catheterizations, which did not definitely conclude that I had PAH.

I worked at a small rural clinic and my doctor was Marianne Hanlon, MD. She is now deceased, due to ovarian cancer, but I believe that if it was not for her knowledge of medicine that I would not be around today to write this. Dr. Phillip Jarvis, MD and Dr. Hanlon arranged for me to go to the Cleveland Clinic for an affirmative diagnosis. After diagnosis, I came home on oxygen.

In January 1993, I was notified that the University of Pittsburgh was starting a study on a new drug called eposternal sodium (Flolan). I saw Dr. S. Murali, MD and was started on that drug in January 1993. I had and still have the usual problems with Flolan: diarrhea, flushing, jaw pain (on increases of medication) leg/joint pain, site infections and sepsis. After starting Flolan I was able to work full time and do my daily chores. I was taken off O2 immediatly after starting Flolan.

In 2002, I was diagnosed with breast cancer. During surgery, which was to include a relocation of my central line, lumpectomy and lymph node dissection, my heart was punctured while they were trying to change the central line. This resulted in me spending three weeks in the hospital, having surgery of a tympanostomy and a thoracotomy. I was placed back on O2 and continue with it currently. After recovery from these surgeries I went to Pittsburgh and had my partial mastectomy, lymph node dissection and a heart catheterization. I have taken radiation treatment and continue to take medication via subcutaneous injection and a pill each day. This treatment is required for five years. I was started on Tracleer in 2003 after completing radiation treatments.

I am on Flolan, Tracleer, Digoxin, HCTZ, Xanax, Neurotin, Zoladex, Novadex, Coumadin and 02.

I have a vegetable garden in the summer and I do my own housework. My children are grown and I have my first grandchild. I am remarried now, almost 8 years.

Through all the struggles, pain and sickness, I know that God has a plan for me. I trust Him totally with my life and I try to live each day glorifying Him. It says in the Bible that we are not promised a tomorrow, that our lives are like a vapor. Live life to its fullest and glorify God in all things. God Bless you all!

 

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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.