Pulmonary Hypertension is a simplified name for a complex health problem- continuous high blood pressure in the pulmonary artery in the lungs, resulting in an enlarged heart which can also lose its ability to pump. There is no cure. With proper treatment, half the fortunate patients live five years from diagnosis, with a few managing to live longer. PH, called the ‘other high blood pressure’ has altered my life dramatically.
In April of 2004, I noticed that I became short of breath anytime I walked up an incline or climbed the steps to our second floor townhouse. Over the course of a few weeks, I got worse with daily episodes of dizzy spells, bloody nose, and a few fainting episodes with more breathlessness. I had to struggle to speak in smooth, full sentences. I was unable to climb the stairs to my own home without taking frequent breaks. Soon even common tasks, like bending over to tie my shoes would cause terrible dizzy spells and nausea. Chest pain and pressure became my nightly visitors. To add insult to injury, I began gaining weight in strange, unpredictable ways. Over the course of a single day my comfy, lounge clothes would become very tight and almost unbearable, but miraculously fit me again the next morning! All too quickly, I became almost enfeebled by my illness in spite of looking perfectly healthy and no doctor could understand why.
My symptoms grew so bad; I was hospitalized twice, from being unable to breathe. I had gone through a battery of tests like Lung VQ scan, nuclear stress test, various X-rays, cat scans, echoes, all kinds of blood tests, without a diagnosis. After the second discharge in last week of August, the cardiologist pointed to the pulmonologist for answers and vice versa. I looked at my PCP who gave the discharge order for answers. She said, ‘I guess medicine has no answer to your condition’ with a sad face! I was ready to embrace death but, kept praying not to let anything happen to me until after my daughter’s wedding to not spoil her day. By my daughter’s wedding date in September ’04, I was barely able to move and unable to partake in the festivities. I couldn’t even dance at my own child’s wedding!
My family members, who were awesome and helpful at the wedding, suggested I look to family and friends in the medical field for answers. My husband and I telephoned a few of them and described the symptoms, tests performed with no answers either. Finally, Dr. Mohan Sarabu, a good friend and member of our spiritual community, a cardio-thoracic surgeon said he knew what was ailing me and I needed to have a right heart catheterization to diagnose it. I telephoned my cardiologist who at first disagreed with the idea of an unnecessary invasive procedure and then, having known and worked with Dr. Sarabu, listened to his arguments. Within 10 minutes, she telephoned me back to say ‘Get ready for your RHC on this Wednesday at Westchester Medical Center!’
My cardiologist, Dr. Dina Katz was finally able to diagnose my illness as PH and referred me to NYP at Columbia, where they further identified as Idiopathic Pulmonary Arterial Hypertension, in its final stage. After being thought of “anxiety prone” by all my doctors, it was a relief to finally have a diagnosis. But that relief was short-lived. After working 25 of my 31 years in the US, I went on long-term disability to spend rest of my days wearing an oxygen tube and riding a wheel chair to move more than 100 feet—at the young age of 50!
Prior to getting ill, I was a working woman, wife, and mother of two grown children. During the week, I was a District Sales Manager for Coca-Cola Enterprises Inc. meeting sales goals and managing a staff of 14 in a very high pressure atmosphere. But, work wasn’t everything to me. I also took long walks with our energetic, young Labrador retriever, Sandy, while also being active both in a spiritual organization and my community. I served as an ESL teacher, Lighthouse volunteer reading to the blind, raised funds via walks and runs for juvenile diabetes and breast cancer. I fed the hungry, thru my spiritual organization and at St. John the Divine Church, N.Y.
After leading an active, vibrant lifestyle, I suddenly found myself immobilized! I had to give up Sandy for adoption, heart breaking though it was, I was unable to give her 2 miles per day exercise; drop all my volunteer and community activities, and even stop working.
Two years later, thanks to Dr. Roxana Sulica who has been treating me since December 2004, with new medications Tracleer, and recently FDA approved Ventavis Inhalation treatments, with my family, friends’ support and prayers; I am alive, stable and better than I was at my daughter’s wedding. We moved out of our second floor townhouse to a condominium with 4 floors and elevators. I have learned to manage my life working around whether it is a good or a bad health day. I have a daily schedule of attending Pulmonary-Cardiac Post Rehab program, using ‘Tag’ transportation services (since I am still unable to drive in traffic). I have made a few good friends here. I am able to do some light housework, including cooking that I love and enjoy my life with my dear husband. By God’s Grace, I am one of few PH patients who have gotten off of oxygen after 9 months use and am able to walk more than 100 ft. I enjoy reading, knitting for fun, social life, going out to dinner and the movies with my friends. I have learned to enjoy my relaxed lifestyle after a hectic life of tight deadlines that I thrived on.
During all this roller coaster of emotions, my dear husband has been a rock of steady strength standing besides me, taking me to every doctor’s appointment, changing his work schedule dealing with more stress at work with one goal of seeing me alive and lead a life as close to normal as possible. There is no way I could repay him for all that he has been to me encouraging me to be strong both emotionally and spiritually to fight this disease with a positive attitude.
Although I am unable to do as much volunteer community work as before, I enjoy my PH activities. PHA’s message board is one website I visit daily and religiously. I am actively working on raising funds with ‘Circle of Friends’ project to aid research for a cure. I like supporting Katie Kroner with her advocacy actions in any small way that I can. I am waiting to start a support group in the southern CT area with our first meeting to take off this April. I love educating and spreading awareness of PH to all whom I come across in my daily life.
I count my blessings and live happily one day at a time, making the effort to remember:
‘The universe is change: our life is what our thoughts make it.’ ~Marcus Aurelius Antoninus~
PHA does not recommend or endorse any specific physicians, products, procedures, opinions or other information that may be mentioned in these stories. Reliance on any information appearing on this website is solely at your own risk. Stories shared on this website are general information and are not intended to substitute for informed professional advice. Each person is different and as such, may respond differently to treatments, thus the stories are shared with the hope that they may be helpful for those who choose to take a greater responsibility for their own health. Always seek help from a health professional.