OUR JOURNEYS

Patient story

Marie Garner

"Once diagnosed, I felt as if I was in the eye of the tornado, dead center and spinning. This “thing” was taking over my life."

My name is Marie Garner; I live in Maine. I did have pulmonary hypertension and received a double lung transplant in Feb. 2011. I waited over three years for a match. It was a miracle in itself that I lasted long enough for the transplant. When I got sick and was finally diagnosed with this rare, terminal lung disease in 2007, my husband, Bob, wanted me to keep a record or journal of my thoughts and feelings. He honestly felt it might help me deal with what I was going through. “How do you write on a few pages about what this time is like,” I thought? I decided I would try and through the following three years, I would sit down almost every day and wrote. The journal became pretty lengthy – three years can be a long time. The following is a small portion of my journey.

I’ve been through some pretty tough times, but this disease presented me with a sense that my body had turned on me and so much frustration followed. Once diagnosed, I felt as if I was in the eye of the tornado, dead center and spinning. This “thing” was taking over my life. All I wanted was my life back - to turn back the clock. If only it could be as easy as opening a drawer and finding it again – but no - all I found was the “new” hateful reality that things would never be the same. So here's my story.

"For years, life had been too busy – I had lived on a diet of promises to myself that my time to relax would come when I retired; so I was ready and eager to start my new life. Instead on May 2nd I found myself in the hospital emergency room."

It all began in May, 2007. Retirement came May 1st, 2007. Mentally I was prepared to leave a very demanding job even though it was one I loved. I was looking forward to enjoying my home, my husband, and pursuing my antique business. My life was exactly what I had always dreamed of; had always wanted. I was lucky – I had so many beautiful things in my life. For years, life had been too busy – I had lived on a diet of promises to myself that my time to relax would come when I retired; so I was ready and eager to start my new life. Instead on May 2nd I found myself in the hospital emergency room. After several evaluations, the various doctors concluded this might be the beginning of a pulmonary problem. By June, my husband and I both knew something was terribly wrong with my breathing. I could no longer walk across the yard or up our driveway without considerable struggle – literally gasping for breath. In the past there were times when I felt tired, sometimes winded when climbing stairs, but had shrugged this off and had ignored these symptoms for years thinking it was my age, too many extra pounds or was just plain out of shape. “Get more exercise,” my brain told me. But now this was a lot worse.

"I was terribly worried since I could not breathe if I did anything strenuous - just walking and talking were exhausting. I no longer knew what to think."

Another trip to emergency and the doctors diagnosed me with a very serious and rare case of pneumonia. I recovered fairly well from the pneumonia after a week in the hospital. By August, my breathing was no better, although x-rays indicated my lungs were clearing up nicely. It was frustrating. At every move, I was still gasping for breath. In late August we all knew I had reached a plateau as far as getting better. I was terribly worried since I could not breathe if I did anything strenuous - just walking and talking were exhausting. I no longer knew what to think. Finally in November, after many medical tests, and visits to various specialists, a biopsy and heart catheterization needed to be done. Armed with those results they sent me to Boston to see another specialist. By the end of November, we had a diagnosis – pulmonary hypertension veno-occlusive disease.

When the doctor delivered the news that I had a very serious disease, Bob and I knew I was in real trouble. The shadow of death had arrived. After hearing the diagnosis, my body, physically, felt different – no longer strong - just as if someone had let the air out of my balloon. I felt out of synch with everything and everyone. I can remember crying and leaning on Bob as I sat in that hospital bed. It was quite a day. I think that’s the day I left the world of “small talk.” I was now on another planet – another journey and we both felt very much alone. Once I got home, I was so exhausted – getting up and getting dressed took an enormous effort at this time, let alone trying to smile. I wanted to smile so Bob wouldn’t be worried. The biopsy confirmed the veno-occlusive part of the diagnosis and the catheterization confirmed the pulmonory hypertension.

"We searched the web endlessly hoping to find an answer hidden somewhere that would erase the bad news. Soon we both knew this truly was incurable with the only treatment being a lung transplant. It was a shock. There were days I hoped this was all a big mistake and that soon someone would tell me so."

I’ve tried to look at life as a series of adventures – growing up, school, jobs, marriage – but I couldn’t look at this as another adventure!!! The tornado had hit. It swooped in and destroyed my life as I knew it – I landed somewhere – where? I don’t think I ever knew this feeling before. The cloud descended. We went home and got our things in order. After approximately eight months of tests, doctors and hospital stays, I had finally been diagnosed. I have PPH, primary pulmonary hypertension veno-occlusive Disease (PVOD). It’s terminal. I was told there were no PPH drugs for me – they did not work on this disease. You just wait for the end. Yet, to finally have a diagnosis was a relief. We searched the web endlessly hoping to find an answer hidden somewhere that would erase the bad news. Soon we both knew this truly was incurable with the only treatment being a lung transplant. It was a shock. There were days I hoped this was all a big mistake and that soon someone would tell me so. If there were stages to this disease, the doctor said I was in stage 3 of a stage 4 disease. All my hope was going to be wrapped up in a transplant.

At this point I was using a walker to get around, on oxygen full time and was too exhausted to think clearly. Bob jumped on the job of getting the insurance company committed and Cleveland Clinic was chosen - their transplant program was to be my future. Finally, in January, 2008 Bob and I headed to Cleveland Clinic for my evaluation. Cleveland Clinic is a place of miracles. Would they have one for me, I wondered. Months passed and I improved. I went to rehabilitation three times a week. The good news came in March, 2008. I made the transplant list. That was a happy time. Bob and I were both convinced that new lungs were just around the corner. Little did we know that waiting – waiting for the phone to ring with the news that lungs were available was going to be so hard. Their best advice was to go home and “live your life” – every day from then on was a precious gift from God to be spent carefully with those I loved.

"Bob and I slowly adjusted. Everything had been tried from our end – there was nowhere else to go – this journey to new lungs we found, was slow. Somehow I knew things would be all right. I had hope. We had reached the acceptance phase – it really wasn’t a bad place to be."

Bob and I slowly adjusted. Everything had been tried from our end – there was nowhere else to go – this journey to new lungs we found, was slow. Somehow I knew things would be all right. I had hope. We had reached the acceptance phase – it really wasn’t a bad place to be. Our attitudes were good and maybe that’s what helped us cope. We discovered there was life after diagnosis. This acceptance does not mean we liked it. We can dislike something and still accept it. My prognosis wasn’t good in December 2007, but from January 2008 to October 2009 there was no big change. I had hit a plateau and stayed there which surprised everyone. I wasn’t getting worse as expected. How could that be? No one could explain it. Fortunately no pain accompanies this disease and maybe that is what made the difference in my quality of life.

"After a while, I noticed that we no longer jumped or waited for the phone to ring thinking that every call might be Cleveland Clinic with news of my transplant. We moved on and accepted the waiting. We tried to live again as normally as we could. It was a relief to reach this stage."

After a while, I noticed that we no longer jumped or waited for the phone to ring thinking that every call might be Cleveland Clinic with news of my transplant. We moved on and accepted the waiting. We tried to live again as normally as we could. It was a relief to reach this stage. No one knew how hard it was to climb the stairs or do anything; it was very hard for me to accomplish the smallest tasks. The tests showed I was doing pretty well. I often felt the doctors weren’t really seeing me or how hard it was to breathe – how sick I really was.

"And of course the good news was that I could breathe. The operation had been a success."

As 2010 wore on, my tests indicated the disease was on the move - I was deteriorating quickly and needed the transplant now. The scoring for transplant was not friendly to my case and so my position on the “list” was not going up fast enough to guarantee a transplant any time soon. It could happen but the percentages weren’t with me. By January 2011, as I was worsening by the day, my score was finally in the top 10% of the “list” and the folks at Cleveland were confident a set of gently used lungs would turn up for me. Hope was very much alive. Living in Maine, there are many snow storms and every time it snowed, I thought will the plane to pick us up get through if I should get a call? It seemed like this was the snowiest winter ever. Storm after storm rolled through. The call came about 2:30 am Saturday February 26 telling us there were lungs available and we should be at the airport by 7 am. There had been a snow storm the day before and they were plowing parking spots when we arrived at the airport. Of course we got stuck in the parking lot. The jet with Cleveland Clinic markings arrived about ½ hour later with two pilots and a medic and off we went. I had no idea how I would walk up the stairs to the plane – it took a while but I made it.

"Yes, the threat of rejection and catching something because of my compromised immune system are with me every day and present some pretty big challenges but I’m up to it. A wonderful family made the ultimate gift to me and my family. To the best of my ability, I intend to take good care of these "new" lungs."

Two hours later we were landing in Cleveland. The hospital security/police met us and drove us to the hospital. I don’t really remember much from this point on. I woke up in intensive care unit (ICU), very scared and confused. And of course the good news was that I could breathe. The operation had been a success. The doctors and nurses were spectacular - So professional and nice all the time. Never did I feel like just a number in such a big place. I was in ICU for about a week and spent two weeks in a private room. Then I was released to go home – home was a hotel suite. We were there six weeks and each day I went to rehabilitation, some days to the hospital for blood work, and others for appointments with the doctor and more tests. Finally they released “us” to go home to Maine. On our way home they called to say my biopsies were showing signs of rejection. Wow, what a word to hear after all of this. On we came to Maine and to tell the truth, it was marvelous to be home, like a tonic for me. I was doing well in Cleveland, but being home was so much more encouraging regardless of the “rejection” news. They increased my medications and at my next visit to the Clinic “no rejection” appeared. How happy that made me – you’ll just never know. Every day gets better and better. And now I believe this is the end to this particular saga and the start of a new one – the new lungs have allowed us to regain our lives.

I still go to the gym four times a week on average, have regular blood tests and follow up visits to Cleveland, my second home. My husband has decided to retire. We have taken several trips south this winter to the Carolinas and Florida and enjoyed every minute. Life is so good. Yes, the threat of rejection and catching something because of my compromised immune system are with me every day and present some pretty big challenges but I’m up to it. A wonderful family made the ultimate gift to me and my family. To the best of my ability, I intend to take good care of these "new" lungs.

 

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