I was 22 when I graduated from college in 1974 and had signed my first teaching contract at a K-12 school district in Thomaston, ME. I was teaching physical education, health and also coached four sports during the school year. I absolutely loved what I was doing and had a wonderful first year teaching experience. As the next school year started that was about to change drastically! During basketball tryouts in November, while running laps with my girls, I fainted!
After going from doctor to doctor searching for answers, I was sent to a cardiologist at Eastern Maine Medical Center. On May 5, 1976 I began my “real” race with pulmonary hypertension and essentially, over the next 22 years, EMMC would become my second home. May 5th was the day I had my first heart cath.
I was extremely lucky to have been sent to a cardiologist who knew I needed a heart cath to determine I had PH, and I am truly thankful to him for that. The news he gave me was very disheartening: “You have, maybe, two years to live. The time you have left will be very gloomy.” He also said to me, “There is no treatment and there is nothing else I can do for you”. And, fortunately for me, he left the practice. Who would be able to help me? Dr. Joe Wise took over my case. He told me as long as I wanted to keep trying, he would do everything he could to help me survive.
Shortly after our engagement, David and I learned of my prognosis. I doubted myself as a woman and future wife; my whole world had been turned upside down. I wasn’t dealing very well with my situation. How was I going to adapt to becoming David’s wife? How could I handle a marriage when I couldn’t even handle myself? Was this fair to him? David never considered not marrying me. This tells a lot about the person he is and has been during this whole journey. It has not been just my journey; it was and is our journey.
June 25, 1976 was our beautiful evening wedding. We spent the summer in my home town, in a camper on a piece of my brother’s land overlooking a beautiful stream, in the woods. I spent a lot of time sitting by a campfire, pondering, writing and trying to figure out what I should do with the time I had left. I did a lot of reading and Kubler-Ross’s book entitled “Death and Dying” was very helpful in my efforts to understand and deal with the prognosis I had been given. The realms of emotions from day to day were so varied; anger, sadness, relief to know that this had not all been in my head, confusion, withdrawal; wanting to talk but just not able to; was this really happening to me? I was good at shutting people out but not very good about letting them in.
One week after I was married, I was back in the hospital for a tubal ligation, as I would never have been able to survive a pregnancy. This was very difficult because I had always planned and looked forward to the time that I would be a Mom. David and I would not be able to have children. It was devastating for both of us.
“How could I have gotten a disease that, at that time, only 1 in 2 million people had?” I was able to find one article about PH. It was about a half page long, echoed what I had been told, with the exception that once fainting begins, the prognosis drops to 6 months. I had been fainting with very little exertion since November.
I blindly went back to Thomaston to start the new school year. I was going through the motions of living; hiding from the reality of my situation. November arrived and I hit rock bottom. I took an overdose of my heart medication. I was nervous, scared, upset and embarrassed, but at the same time I remember thinking: maybe I can get some help to deal with this. Even during this devastating time I had some hope. I was overwhelmed and did not know how to move ahead. Everything was all mixed up like a big ball of yarn. I couldn’t find the beginning, and the end just looked like darkness. I was afraid! You are 24 years old and you are dying!
One of the toughest times of this journey was the day I was admitted to the Psychiatric floor at EMMC. Clinically, I was in denial about dying and depressed about my limitations. I learned a lot in my two week stay including some skills for coping. It wasn’t my fault that I got this disease. I hadn’t been a bad person. I didn’t have to blame anyone. This was the little flicker of light in the darkness I had been looking for. I was able to write a letter to the disease, put it in a box, and place it on a shelf along with the anger. I chose to accept it and leave it abandoned. What a difference that made! A weight had been lifted. I was ready and able to move ahead, and felt confident and better equipped to handle my life.
It did not take long for me to figure out that if I was going to remain mobile, I would need some assistance. My physical limitations had become very apparent. Walk a few feet, lie down, try to relax enough to prevent fainting, and then try again. Dr. Wise suggested an electric wheelchair so that I would be able to be outside, go to events, and go for walks. The only stipulation was I would continue to exercise as best I could. After a bit of hesitation, I decided to swallow my pride of having to ride in a wheelchair and gave it a try. After the first few times, I became comfortable. I was able to go camping and get around independently.
In April 1979, I took an expected but undesirable turn for the worse. David and I thought this would be my last stay in any hospital, as I had started to faint while lying down, so we were preparing ourselves. Dr. Wise had just returned from a medical meeting, learned that a new antihypertension drug (Nifedipine) had shown to reduce PA pressure in some patients, and a new catheter had been developed which could measure pulmonary artery pressure at the bedside. I was started on it and improvement was amazing. I went from not being able to walk more than a few steps to walking the length of the hospital hallway. I returned home and started training; walking the distance between telephone poles, first one set, then two sets until within a couple of weeks I was walking a mile. I was able to return to teaching in 1981. Teaching physical education, however, proved too much for me, so I became certified to teach elementary education. I found the classroom perfect. I was doing what I loved; teaching and coaching. I was doing so well, that, after talking with Dr. Wise, David and I decided to pursue adoption. On April 30th, 1987 our two sons were home. Truly a miracle is happening when you start an application in June for an overseas adoption and ten months later you are a family of four.
Dr. Wise moved to New Mexico in 1987, and I must say that was a tough good-bye. I started seeing Dr. Silver, who I knew very well and who had the same philosophy as Dr. Wise about my care.
In the fall of 1996, I had pneumonia, which required hospitalization. I recovered, went home and work, and in January I got it again and recovered. After several visits and tests Dr. Silver knew that nifedipine no longer had the effect it had prior to the pneumonias. He told me he had been in touch with Dr. Robyn Barst at Columbia-Presbyterian Hospital in New York. He was concerned about my increasing PH symptoms. In March, 1997, I had a consult with Dr. Barst. There were many tests during this consult. I met, for the first time, another PH patient, 21 years after my diagnosis. Someone knew how I felt without trying to explain. I didn’t realize how isolated I had been until after talking with other patients. I learned about PHA and support groups. Even though the nearest support group was almost 3 hours away from my home, I would start attending as soon as possible. The toughest news of this visit was learning I would have to retire from teaching, for a second time. I did not want to have to go through this again but knew I had no choice.
In April, I was admitted to Columbia-Presbyterian. David, Ian and I learned how to mix flolan and all the “what to do and how to do it.” I had the catheter placed and my life with flolan began. I was nervous leaving the hospital, but I knew it was time to return home. It was a bit scary that only the three of us knew anything about how to mix flolan and all the other intricacies of using it. I had regular visits in New York, twice a year. I was increasing flolan on a regular basis and doing quite well.
March, 1999 found me having lung surgery for a suspicious nodule in my lung. It was a relief to know the nodule was not a problem.
In early March, 2000, I started having problems with shortness of breath and fatigue. My life was: get up, wash up, return to bed, read the paper, fall asleep; get up again, take care of the catheter site, mix my medication and then lie in my recliner. I couldn’t eat without vomiting and stopped eating. My source of nourishment was strawberry/kiwi Gatorade. By late March, I could not hold that down. I had lost 50 pounds and my ph symptoms were intense. My primary care doctor was very concerned and wanted me to see a specialist as soon as possible.
David came home from school at noon on Friday, April 12, searched the phone book, called Maine Medical Center and asked if anyone there treated “Primary Pulmonary Hypertension”. He was told to call Chest Medicine Associates. Karen, the PH nurse, arranged for me to be admitted to MMC that day, to the Special Care Unit, and the following morning I met Dr. Joel Wirth. There were a number of issues going on and my hospital stay lasted three weeks. Rheumatoid Arthritis and Thyroid disease were added to the health record.
September 23, 2003 found me at Maine Medical Center for surgery to have my thyroid removed. I received the news that the thyroid was cancerous, but the surgeon was certain he got it all.
At 7:30 a.m., April 1, 2005, I became bald and had surgery, yet again, to have a shunt placed in my brain for a condition called pseudotumor cerebri. Not a very nice April Fool’s Day!
I had attended my first PHA International Conference in Miami in 2004. I learned so much, and met many other patients at conference. I wanted David to experience conference too. We have not missed a conference since 2006. At the Minneapolis Conference, we heard Mr. Carl Hicks talk about fear; how fear prevents us from fighting, especially for a cure for PH. This had a profound impact on me and I took his message to heart. I needed to step up and become involved.
We wanted to raise awareness and funds for pulmonary hypertension. I have a passion for golf and so we decided, “Why not a golf tournament?” In 2007 the first annual Maine “Swinging for a Cure” Golf Tournament and Auction was held.
In September, 2006, I transitioned to IV Remodulin. My current PH therapy is: IV Remodulin, Revatio and Nifedipine.
In July, 2007 David and I took a trip we never thought we’d ever be able to make. Our sons, Brian and Ian, had returned to visit the country of their birth. We wanted to experience the Korean culture and see the boys’ homeland as a family. It took some careful planning on our part and we did it!
My book was published in June, 2010. Dr. Wise, right after I became his patient, encouraged me to journal. He thought this would be a good way for me to express “my hidden, unsaid” thoughts. After finding PHA, support groups, and becoming more involved with other patients, I started putting the journal writings into book form. Many encouraged me to put it in print. It was not easy to write all the ups and downs and the very lowest points along the way, but I tried to be honest about the challenges and how I got through them. The ultimate goal for this book is to give others with PH hope.
I received a phone call from Meryle Reeesman in April, 2012, telling me that I had been chosen as PHA’s Outstanding PH Citizen. “Are you serious?” I asked. I didn’t realize how I would react when I stood on the stage and received the award. I could not stop the tears as I looked out over the banquet room which was filled with over 1500 people. Flash backs of the past 36 years all flooded in around me. I have always carried hope that a cure would be found, and I truly believe that a cure will be found. In 1976, I never dared to imagine seeing so many people all in one place, coming together, talking, sharing research papers, and collaborating about PH. It truly was overwhelming for me.
In September, 2012: I started to have leg pain in my upper right thigh. X-rays didn’t show anything. By January I was using a cane, then crutches. On April 8, my rheumatologist told me I had a hairline fracture in the femur. I found myself in surgery on the 10th having a rod placed in the femur. The surgeon told me that it was most likely caused from the drug fosomax – only 4% of patients who use fosomax get this condition. I did fine through the surgery. I returned home on April 15th. The recovery at home took several weeks, but I was able to recover.
I never thought I would ever be able to say this: “I am a Grammy”! How awesome is that! David and I traveled again to South Korea in June, 2013 to visit our new grandson, Kai. Oh, what a special trip that was! Holding my new little grandson was just one of the most precious, special moments of my life.
There was no way I was going to miss Kai’s first Christmas; even if it meant another flight to South Korea, so on December 13th, Ian, David and I arrived in Incheon. It was just a wonderful first family Christmas! We returned home on December 31. And then…
It was back to Portland and a visit with the surgeon who had done the surgery on my right leg. Two days before returning home, my left leg gave out on me. Same pain as before; I knew what lie ahead. On Jan. 8, I was back in the hospital to have a rod placed in my left femur. Again I did fine during the surgery but the recovery was very difficult. I returned home 5 days after surgery. I was using oxygen 24-7, which is not what I am used to. On February 4, I woke up, sat on the edge of my bed, still not doing well, tears running down my cheeks and asked myself, “Am I going to get through this? Yes, you are!” I had to work very hard to discontinue the oxygen and get back up on my feet. It took two and a half months to be up and moving again.
Another road block; at my routine ophthalmologist’s appointment, I learned that I needed to have cataract surgery. I had both eyes done and I did very well. On June 2, I was able to swing my club and play 9 holes of golf. It was a great day!
Becoming a member of PHA has allowed me to connect with many people all over the world. I have been a support group leader in Maine since 2004. I have had the opportunity to speak at PHA’s Congressional Luncheon on two occasions in support of the PH Research Act. Being a member of PHA is a good way to include your family members in your journey with PH. There is so much to learn. Conferences allow you to gain a much better understanding of PH; armed with updated information to take home and share with others. My attendance at conferences has given me a sense of empowerment over PH; but the most important thing gained from attending conference is: You discover that you are not alone!
I have shared with you the many obstacles I have faced since my diagnosis to the present which required me to really think about what I needed to do to stay positive and live. I would never say that it was easy; it wasn’t and it isn’t; but there is the other side. My life is not what I thought, or expected it to be. For me to have experienced all have experienced is amazing. The early days, months, and years were very difficult and yet; at the same time made me aware of what was truly important. The only way I can explain getting through them was that I know I had someone walking with me and watching over me. My faith has grown and I know it has gotten me to this point in my life. There is a reason and purpose to everything that happens in our lives. Right after my diagnosis, I told my older brother about having “pulmonary hypertension” and ending the conversation with “it is not going to take my life or anything like that”. I know I didn’t believe that. The statement came from deep within. And the years keep moving along. When I turned 30; I thought that was a miracle. I turned 62 in August! I call that a precious gift.
The one thing I feared most after diagnosis was that I would not be able to accomplish anything in the time span given me. What was I going to be able to do in maybe two years that would be beneficial to anyone? I did not want to look back over the time I had left and have to kick myself in the butt for not doing anything. I think this was a great motivator for me to set a goal of doing something, anything each day. I learned to live with Pulmonary Hypertension, accepting and adjusting, but still trying to live a productive life, not knowing the outcome.
I asked Dr.Wise if he would share some of his thoughts about my case so I could include them in my book. An excerpt of what he wrote follows: “When I met Jeannette she was 23 years old. She had what everyone agreed was terminal right heart failure, the result of severe primary pulmonary hypertension. She required hospitalization on a regular basis for removal of edema fluid – symptomatic treatment at best – for, in spite of extensive consultation, there was no known treatment for the underlying condition. Between hospitalizations she was essentially bedfast. I learned two important things from her. One, it is very difficult to know, with any confidence, how long someone might live or whether a disease is too far advanced for cure. And two, it is very nearly impossible to extinguish strong hope.”
My early years of isolation, loneliness, no one really understands my disease, to hear, “You look so good”, when you are feeling so poorly; is tough to deal with alone. You and I don’t have to; there are so many who have the desire to help. I encourage you to reach out and find the support that will help you stay strong as you continue on your journey.
I learned something a few years ago from Mr. Carl Hicks, whom I love, respect and admire, when I heard him say, “Hope is a verb”. We cannot let fear paralyze us, or remove hope on our individual journey.
Thank you for allowing me to share my story! Please feel free to contact me at firstname.lastname@example.org.