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Patient story

Keisha Nance

“Living with Primary Pulmonary Hypertension”
By Keisha L. Nance

In January of 2006, during one of my frequent visits home to Huntsville, Alabama from Cincinnati Ohio, I scheduled an appointment and went to my family physician for a routine check up with lots and lots of questions and a wondering mind as to why I was so short of breathe when I walked just a very short distance and perspiring so heavily. I knew that I had gained a few pounds and thought maybe that was the reason for this sudden change in my personal being. After reviewing and searching for the first symptoms of shortness of breath, heavy perspiring and occasionally blacking out, this was a sign of major concern to my family and myself. These symptoms first occurred in the fall of 2004 at the age of 27.

My doctor in Huntsville was aware of our family history (heart disease) and he ordered an EKG and chest X-ray. As a result of the tests performed they found my heart was enlarged, and I was shocked. I was diagnosed with primary pulmonary hypertension (PHP), which is a complex lung disease. I cried and was afraid, because he said this is serious, and I needed to get to a specialist right away. After letting the diagnosis sink in and talking to family members, I knew that many of my loved ones had died from this very same difficult disease. Not knowing the proper medical term as they use today, at that time it was diagnosed as congestive heart failure in several of my family members. I have included a brief summary of family members that have/had primary pulmonary hypertension (PHP), deceased family members including my mother in 1980; my grandmother in 1972, aunt (on my mother’s side of the family) in 1961 and three cousins (on my mother’s side of the family) in 1990, 1997, 2000 respectively. Currently I have two aunts diagnosed with the disease and they are under the constant care of their physician. This disease has affected only the female members in my immediate family. This disease was a curse to my relatives, it has killed over seven people in my immediate family alone. There wasn't any treatment for them at the time of their diagnoses. And since my diagnosis several other family members have been diagnosed with this disease.

I had dreams for my life. I wanted to jump start my career in a new city, get married, and have kids. After my visit to the doctor, I felt that all of my aspirations at this time was being taken away from me. So I got angry, angry at everyone, angry with the world, angry with God. I felt I was a walking time bomb just waiting to explode, I thought I was going to die at anytime now.

I remember after the diagnosis from the doctor as I returned to Cincinnati, I felt that the health care system of Ohio was being too slow about everything from making arrangements to see a doctor to notifying me of the medications needed. I didn't know of any PHP specialist in Cincinnati at that time. Finally, I was referred to a great pulmonologist in Nashville, TN and he found nothing to cause my condition, his diagnosis was that of me as having primary pulmonary hypertension in the "severe" stage. I became very sad. I started going through the different "behaviors of grief" like denial (this isn't happening to me!), anger (why is this happening to me), bargaining ( I promise I'll be a better person if...), depression ( I don't care anymore), then there is acceptance (I'm ready for whatever comes) which I have finally reached. That's why I want to make it my business to educate those who are not aware of this disease. I found on the pulmonary hypertension website that there are great support groups that had been organized to help individuals learn to deal with the disease. I joined one in Cincinnati and have made great friends and gain support from individuals like myself.

I have had a chance to see God working through people and helping people live longer with treatments and research to find a cure for patients. We have come a long way to help people live and enjoy there lives through working knowledge of the physician and on going research for treatment and someday a cure. I now have plans to bring it to the African American community’s attention to raise awareness and money for research in hopes to find a cure someday soon in the near future. Everyone in life has challenges and this has been a big challenge for me. My lifestyle had to change for the better. I also had to learn to be faithful in the little things. How I treat myself, my family, my friends, and neighbors. I knew I had two choices in life; they were to live with it or die from it. I wanted to live and I knew I had to do some very serious soul searching and transformation for myself to learn to live a very productive life with the complex disease. I don't want to ever doubt my heavenly Father ever again in the plans He has for my life. I decided to find the good through this experience, accept it, and then experience God's miracle so I can be a blessing to others. I do have my bad days, however I have not let it affect my mentality permanently. I was angry with God at first wondering if this is pay back for all the things I've done to myself and the people I love and have hurt in my life time. I don't believe God brought this sickness on me, but He allowed it to happen to me so that he can show people he is still in the healing business. That's why I feel God has given me a second chance at life to prove that life can still be enjoyed to the fullest while I'm dealing with this challenge. I can thank God for allowing me the chance to go through this experience and to be able to share His goodness and grace with others.

My pressures are still high and are being maintained with medication and keeping scheduled visits to my pulmonologist. I am thankful that I was referred to a great, loving, and caring pulmonologist in Nashville, TN. My family is participating in the National Registry for Familial Primary Pulmonary Hypertension (FPPH) at Vanderbilt University, all papers for the study have been submitted to acquire data on individual members, such as family and medical history, to help in understanding this complex disease. I eventually meet a good pulmonologist (PH specialist) in Cincinnati she is one of the best doctors I know. I am still working a full time job as a respiratory therapist and still have plans for my life. I will jump start my career in a new city soon, get married someday, and have kids(if only through adoption). I also hope someday to become a spokesperson for the many people living with this complex disease to let them know that we all have to go through some trials in life to become a better person not only for ourselves but for our families, friends and the world. I pray constantly for a cure for all who suffers from primary pulmonary hypertension and the many other incurable diseases.

 

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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.