PHighter Friday Follow-Up: Colleen

On January 2, 2016 I hit my eight-year anniversary since diagnosis. This makes me a long-term survivor, I have officially defied the odds.

It’s a curious milestone to celebrate. Of course, I am deeply grateful to be here. There is so much living left to do. The flip side of the statistic, however, is that half the people diagnosed the same time I was are no longer here. It’s a fact I am acutely aware of far too often… watching others with this disease suffer and pass on is  something that has never ceased to cut through me.

Although incredibly hard some days, I can’t stay in that dark space – I think that knowledge is perhaps the most valuable lesson (and skill) I have learned these last eight years. It’s a balancing act between weathering the really hard parts and then getting back up and focusing on the good. In fact, this lesson has been so deeply ingrained in me, I wrote a book on it.

“Defining the New Normal: A Guide to Becoming More Than Your Diagnosis” is the book I published in November 2014. By 2015 it was on the Amazon bestseller list, a feat that not only shocked (okay, and thrilled) me, but one which left me really humbled. I knew when I set out to write this book, that everyone knew somebody who would need it (it’s for all people rocked by a major diagnosis, not just PH). I just didn’t know how many people would resonate the way they have. It’s just… well, it’s just the best thing knowing that this really crappy PH thing can be turned around for good. I am nothing but grateful for how it has been received, and grateful to the Caring Voice Coalition and PHA for supporting my efforts.  And I absolutely love traveling to speak to other patients about how they too can define a life they love, no matter the diagnosis.

In addition, I’ve been given the opportunity to speak to the FDA, Women in Government and PH related industry several times. I really believe it is the patients who have to take our stories right to the change makers, and the policy makers. They need to hear how their every decision impacts our wellbeing and survival.

A book is fun, but the most significant thing in my world as of late has been the adoption of our daughter this past July. We started with fostering the tiniest sweetest little four-pound bundle in November of 2014 (oh yes, she was placed with us the same week my book launched – no pressure there!). Eight months later, in a little courtroom, a judge ruled her ours. Forever.

That moment was literally a dream come true. I had wanted to adopt ever since I was in college. For a long time it looked like PH was going to derail that dream. Questions about how sick I might get, and how bad the outcome might be, kept my husband and I from moving forward.

Finally though, it seemed I was going to be pretty stable for a good long time. I have a kick-ass team of doctors and each one of them was 100% behind the idea of adoption – which was incredibly reassuring.

She and my nine-year-old son keep me very busy. They get most of my energy these days. Adopting was the best decision, but caring for an active toddler and a boy on the move is no joke! I’m writing a lot, and coaching clients all over the country to better health on their terms. I don’t think this journey is ever going to be an easy one. But in choosing whether I PHight of take Flight… I choose to stand and PHight… or sit down on the couch and PHight from there if I have to – because let’s be honest, PH fatigue is no joke either. Either way, I’m defining this life on my terms and it’s a life I love.

*This entry is a follow up to Colleen's original #PHighterFriday, which can be viewed here.

Partners with PH: Josh and Nicole

So often people spend years searching for that thing that inspires there life and gives them purpose. I am lucky because I found my inspiration early in life and get to reflect on it daily. It is an incredible feeling to have that kind of inspiration day in and day out. I am going to pause here and give you a little background before I go any further…

My name is Josh and my wife’s name is Nicole, and I was asked to share with you a little about our story. Nicole and I met in college and it didn’t take long for us to realize that we were in love and meant for each other. We got married May 13^th, 2006. In a three week period of time I graduated college, got married to the woman of my dreams, and started a new job with a Fortune 500 company that had endless opportunity. Life couldn’t be better. I felt like nothing could slow us down.

About two months after we got married, Nicole started having recurring episodes where she would pass out if she pushed herself to hard physically.  At first, the episodes were not severe and according to her doctor at the time, were something Nicole would just have to sort of “manage” by adjusting our lifestyle and taking medications. 

Prior to us getting married Nicole had some very minor symptoms but nothing like this and doctors never seemed to be worried. One doctor told her the symptoms were all in her head and that nothing was wrong with her. It’s like I knew something was wrong but since the doctors didn’t seem too worried about it, I was hopeful it wouldn’t get to bad. I just knew that I would be there to help her and we would get through it, whatever it was.

In a short period of time the symptoms worsened and her passing out turned into violent convulsions. One night she had an episode that was so severe she stopped breathing.  I started to give here CPR and called 911.  I had no clue what I was doing but somehow she came to and started breathing again. I am not sure there is a way to explain the fear I felt at that moment. I thought she was going to die in my arms right there. Lucky for us God was on our side that night.

The paramedics arrived shortly after I got her to start breathing again. We ultimately ended up in a hospital in downtown Kansas City where she was admitted and moved to the critical care unit. Doctor’s ran several tests to try to figure out why she was having these episodes.  She continued to have them in the hospital and actually coded two more times and was revived by the medical staff. I felt like life was falling apart and I was losing the most important thing in the world. After a few days of being admitted she was diagnosed with Primary Pulmonary Hypertension (PH). I remember feeling confused and wondering what that really meant.  Is it treatable? Is she going to be ok? 

The doctor explained the disease was a chronic lung disease that causes the heart to fail and that that the average life expectancy (at the time) after being diagnosed was 3-5 years and with a heart and lung transplant it could extend from there. He also noted there were treatment options but very few patients actually get better after starting treatment. For most patients treatment only slowed the progression of the disease.

Looking back I remember thinking heart and lung transplant… really?  How is this happening?  She is so young and really took care of herself. Why Nicole, why us? Life is not fair. Anger, pain, denial are all feelings that came to me over the next few days. There is no way to describe the experience we went through. This was the bottom.

Well let me explain how things can change.

While life at that moment seemed lost, God had a plan for us. I have never seen anything like it in my life. Nicole was determined to get better so we could live a full life together and it was like God was with her every step of the way.  There is a power in positive thinking because Nicole always finds a way to bring out the positive side of every situation. Each day Nicole seemed to get better. Am I saying it was easy no, there were days of struggle, sickness, and symptoms but somehow we got past it.

Over the next few years, life slowly returned to “normal”.  By “normal” I mean exceptional. Nicole got better and better.  She went from being on constant IV infused medication to an inhaler (nebulizer).  Growing up in Pensacola, Nicole dreamed of the day she could swim in the water again and guess what… she does every summer now! Not only is she physically better, we have grown as a couple and as a family. We have two beautiful children now (both adopted since we couldn’t biologically have children). They are amazing and the light of our life. If you think that PH is the end and you can’t get better, stop and know that it’s not true.  Sure there are days she doesn’t feel the greatest and yes she is still limited by physical activities but in the grand scheme of things, she can do more than she can’t.

We are an example of how being positive will carry you through. Pretty sure it’s evident by now but going back to where I started, Nicole is what inspires my life and fills me with purpose. Sometimes people tell me I am a good person because I have taken care of her but what they don’t know is that it’s the exact opposite.  Without her I would be lost. She is an amazing mother and wife that is the driving force behind our family. 

So for those of you that have someone you love going through this be positive and uplifting.  Your spouse/significant other needs your support and deserves it.  It can be tough but I promise you it means so much to them just for you to be at their side smiling and telling them you love them. Live in the day and know that God’s plan will take you where you need to go. It is so important to enjoy every day of the journey, even the tough ones.  Let the little things life throws at you go as it’s not worth it to stress over. Who knows, you could end up like me with all your hopes and dreams coming true.

**Nicole's previous PHighter Friday story can be found here.

PHighter Friday: Kellie

Life beholds many unforgettable experiences.  One of those cherished moments occurred for me on February 1, 2007 when Paul completely surprised me with his marriage proposal.  I was ecstatic to say the least, and we quickly set to work on planning our August wedding.  In mid-February the wedding planning came to a brief halt as I dealt with a short bout of the flu.  Once I was feeling better I dove back into wedding planning mode! However, something was not right as I became more active.  I was unusually short of breath during my workouts.  After a few weeks of trying to "get back into shape" I decided it was time to schedule a doctor visit.  The results came back fine, so once again I decided to start the workouts and push even harder.  By May my breathing was continuing to get worse.  Paul convinced me to set up another doctor appointment.  By the time I set up this appointment I could barely walk from my car into work without having to stop and rest.  At this second visit my doctor decided it was time to look at my heart.  A few tests were done and an echocardiogram was scheduled for a couple days later. 

On Friday, May 25, 2007 I arrived for my echo a bit apprehensive, but hoping I would receive a simple explanation for my shortness of breath.  It wasn't long before I sensed something "wasn't right" during the echo, but the technician wasn't about to reveal what it was to me.  I will never forget the look on my doctor's face when he came in to break the news to me that my pulmonary pressures were extremely high, there was major concern about my heart, they were going to do a few more tests, and then I would probably have to be admitted to the hospital that day (which I was). 

After being admitted to the hospital the panic really set in.  As I was being wheeled away for a right-heart catheterization, I remember looking into Paul's eyes and both of our eyes immediately pooled with tears...tears of fear and the unknown. After the catheterization I was sick, chilled and scared.  Whatever I was given at that point knocked me out for the night.  The next eight days I slowly learned more about my disease and the aggressive treatment regime I would be starting to try halt this progressive illness.  It was decided that triple-therapy was in my best interest, so I began sub-q Remodulin, Tracleer and Revatio.

I spent the next three months focusing on healing and learning how to manage my medications so I would be ready to walk down the aisle.  It was a summer filled with much pain and suffering, but I was determined to move on and live life to the fullest.  By the grace of God, I had the most fabulous wedding day.  On August 11, 2007 I was able to marry my best friend and companion for life.  The challenges of the previous three months had only brought us closer together and made me all the more sure that God was taking care of me in a special way through the gift of my husband. 

One of the most difficult realities of my illness was the loss of being able to bear children. Although my heart ached, I was blessed with an adorable nephew and a beautiful niece, as well as a classroom full of first grade students to enrich my life. I was thankful to be alive and thankful to be back working full-time with children. I was gifted a notepad with the saying, “keep a dream in your pocket and faith in your heart.” This immediately became my motto, as it deeply resonated with the way I wanted to live my life. So I kept on dreaming and had faith in God’s plans for my life. I trusted that my life would continue to be filled with blessings, many greater than I could imagine.

In 2011, my husband and I felt fortunate with my improved and stable health condition and felt it was time to pursue adoption. Just as we finished the paperwork to be listed as a “waiting family,” PH was brought to the forefront in our lives when my mother was unexpectedly diagnosed with PH. That’s a whole other story in itself, but it was a magnificent reminder that anything is possible with God. We witnessed a true miracle in my mother’s recovery and are blessed to have her here with us today.

In 2012 the greatest blessing of our lives came into the world. My heart sings that we were chosen to be the parents of a beautiful baby girl. I will never forget the day she was born and the love that swelled inside of me as I took my first look at her. God had a plan, and it was even better than I could have imagined. My heart that once ached with loss is now bursting with love and I feel at peace. As I watch her play, learn and grow, I am reminded everyday how beautiful and precious life truly is. I am blessed to be a mom.

Since my diagnosis, I was determined to thrive, not just survive. I have taken an active role in doing my best to lead a healthy lifestyle that has allowed me to thrive. I immediately began a low-sodium diet. It was a difficult change in the beginning, but I could sure tell a difference. Prior to my diagnosis I was active in sports that my body no longer tolerates. I have since found new activities that I enjoy and are a benefit to my health. I enjoy yoga and mediation. I love going for walks and recently got a Fitbit so I can track my daily steps and activity. I have also delved into the world of Young Living Essential Oils and am so excited to have something that helps me as I manage the side effects of all my medications and has given me a boost in my overall feeling of wellness. 

I am thrilled to be involved in the study with the implantable pump for Remodulin. It is such a delight to swim and shower without worrying about an external line and pump. It’s amazing to think of all the advancements in therapy that have come about since my diagnosis 7 years ago and I trust that even better things are coming.

I am thankful for the continued support of wonderful family, friends and medical professionals. I am grateful for the Pulmonary Hypertension Association and all that has been accomplished thus far. I will continue to PHight and give my support until a cure is found!

Although the path can be bumpy at times, I am confident that God is with me every step of the way.  I am keeping a dream in my pocket and faith in my heart because anything is possible with God!

http://phight4wellness.wordpress.com/

PHighter Friday: Jeannette

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 5^th 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 30^th, 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 10^th 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 15^th. 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 13^th, 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 jmmorrill15@gmail.com.