Successful Tournament at Piscataquis Golf Course

Charity Golf Tournament Swings fore a PH Cure

Piscataquis Golf Course hosted its 4th Annual Pulmonary Hypertension “Swinging Fore a Cure” Golf Tournament on Saturday, July 13.

All proceeds from this charity golf tournament will go to UPHill Journeys (UJ), a program of Maine Medical Center, which supports Pulmonary Hypertension (PH) patients in Maine and New Hampshire. 

The simplest way to explain Pulmonary Hypertension is to say, “high blood pressure in the lungs.” It is often misdiagnosed, and unfortunately in many cases by the time it is diagnosed, it is too late for treatments to be effective.  There are about 30,000 people in the United States that have been diagnosed with this disease. There are many more that have not been diagnosed.  Unfortunately a person was diagnosed with PH in our local community. However, unlike prior PH experiences, in which an accurate diagnosis is not made, this person was diagnosed properly. Through your efforts and support UJ is able to accomplish its mission statement.  Please know that this is a real world application, with a real face that is a member of our local, rural community.

Symptoms of  PH are shortness of breath, especially with activity, feeling tired all the time, lightheadness, especially when climbing stairs or upon standing up, swollen ankles, legs, or abdomen, chest pain, especially during physical activity, and fainting.

Forty golfers turned out for this event on a beautiful day. Over $1400 was raised. 

First place team was Bill Kirby, Mike Wasilewski, Steve Hall, and Rob Sawyer. 


Winning Team

Second place team was Dave Garland, Wayne Clukey, Gene Dami, and Glenn Sakahara.

Second Place Team

 One of the highlights of the day was a chance for Dave Garland to win $2500.  He  attempted a 40’ putt and came very close to putting it in the cup.

Dave Garland attempting a 40 foot putt for $2,500.

Dave Garland attempting a 40 foot putt for $2,500.

 

UPHill Journeys members Jeannette Morrill and Ian Morrill with two golfer friends supporting the tournament, Bryan Kimball and Greg Jordan.

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Falmouth Country Club will be hosting the 7th Annual Pulmonary Hypertension “Swinging Fore a Cure” Golf Tournament and Auction on Oct. 5, 2013. For information on this tournament please contact Jeannette Morrill at
jmmorrill15@gmail.com.

UJ wishes to thank everyone who played in the tournament and supported this event.


                 

                                            

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SUPPORT GROUP MEETINGS

Portland/Bangor Meetings in 2013

The Portland Support Group meetings will be held on March 21, May 16, July 18, August (date not set) is our Annual picnic at Two Lights State Park in Cape Elizabeth), October 17, and our Christmas Party at a restaurant on December 12. All regular meetings will be held at Brighton Campus (335 Brighton Ave., Portland, ME). Meetings are from 4:00 – 6:00 and food is provided.

Please RSVP one week ahead of the scheduled meeting by contacting Jeannette @ 695-3042 or  jmmorrill15@gmail.com   if planning to attend. (We need an accurate count for food.)

The Bangor Support Group Meetings will be held on February 25th, April 29th, June 24th, October 28th, and a December Party at a restaurant (tba). The meetings are held at 294 Center Street in the St. Francis Board Room (not in the main hospital) from 1:00 – 2:30.

Please RSVP one week before each meeting by contacting Jeannette @ 695-3042 or jmmorrill15@gmail.com   if planning to attend.

The support groups are for anyone interested in learning about or is affected by pulmonary hypertension.  It is for patients, caregivers, family and friends of patients who have pulmonary hypertension.    

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UPCOMING EVENTS

Pulmonary Hypertension Awareness Day

UPHill Journeys & PHA

Tuesday, November 20th from 8-1 at Maine Medical Center on the ground floor by the courtyard.

Pulmonary Hypertension Awareness Day will be held as part of awareness month which is the month of November. Information about PH will be available. Come and be a part of this effort to raise awareness!

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Maine’s Bangor Daily News Talks Up Uphill Journeys

On September 4, Uphill Journeys – and our upcoming Patient Forum and Benefit Golf Tournament – were written up in the Bangor Daily News. Click the link below to read how of our founder, Jeannette Morrill, raises awareness of pulmonary arterial hypertension (PAH) and raises funds to fight it – and how she was recently recognized for these efforts by the national Pulmonary Hypertension Association:

Golf Tournament to Benefit Pulmonary Hypertension Association

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Braden’s Uphill Journey

Catching My Breath

Me, with my son, the weekend before I was hospitalized.

It started with stairs. Several months after the birth of my son, I carried a laundry basket up from our basement.  When I reached the nursery I was gasping for breath.  I sat down. Then I had to lie down—sides heaving, head swimming, heart pounding. Eventually my breathing slowed and I sat up, bewildered. I’m out of shape, I thought. I’m working too hard. I never get any sleep. Still, I called my doctor’s office.

The emergency care doctor was solicitous and kind. He gave me an EKG. He asked questions. Everything seems normal, he said. He talked about panic attacks. Babies are hard, he told me. I know, I said. He said to not feel silly for calling and he meant it … but I did.

Months passed. My son grew bigger and harder to carry. Every few weeks—then every week, then every few days—I would have another spell. I watched my boy draw deep, exaggerated breaths while we played together. He was imitating me. I called the doctor’s office again.

Bloodwork, EKG, everything seemed fine. I felt silly again. We should ultrasound your heart, my physician said. Maybe, I said, if these spells don’t stop.

They didn’t. I was slowing down—asking my husband to carry things, letting my son climb the stairs while I trudged up behind him. And then, while playing with my boy very early in the morning in October 2010, I fainted.

This time my doctor didn’t give me a choice about the ECHO. We have to find out what is going on, she said. I went in for the test. My cell phone started ringing before I finished the drive home. The right ventricle of your heart is significantly dilated, my doctor told me. The cardiologist needs to see you tomorrow. 

Braden, she said. I don’t want to scare you. But this is significant. We have to find out what is going on.

With my toddler climbing all over his office, the cardiologist told us I needed to check into Maine Medical Center immediately. We were stunned. It was our wedding anniversary! We called our families, who live out of state, on the drive to the hospital.  I told my mother, Mama, I’m so scared. When I said goodbye to my husband and son I wondered if I would ever see them again. I was covered in electrodes and wires and IV locks held down with tape. I crawled into my hospital bed and started to cry.

They starting running tests overnight. So many tests. I ran on treadmills, I breathed into tubes.  I spent two hours in a closed MRI. Images of my lungs were pressed like fingerprints on black screens in dim rooms. I watched saline bubbles foam like popped champagne through my swollen heart. My cardiologist sat at the foot of my bed and explained that the tests showed I didn’t have a hole in my heart, or blood clots in my lungs, or anything they had expected to find.

I have a hunch, he said. I think we need to explore pulmonary hypertension. When I told the nurses at shift change that night, they said they would pray he was wrong. Why? I wondered. So I Googled it.

The first few Google hits landed more like punches. Chronic high blood pressure in the lungs that puts untenable pressure on the heart, leading to right heart failure. No cause and no cure. Rare. Progressive. Fatal. Two years. Maybe five years. Lung transplants. Heart and lung transplants. Symptoms I recognized. Treatments that seemed they would invade my life but not save my life. I closed my laptop with shaking hands.

My son. My gorgeous, mischievous, sweet and sturdy son. Until my hospitalization we had never spent a night apart. Death would lock me alone in a dark room where I would hear him cry for me, but I would not be able to reach him. I sobbed. Margie, my night nurse, brought me a sleeping pill and held my hand. Those websites know nothing about you, she whispered.

I was given a right heart catheterization the next afternoon to confirm the diagnosis. Normal pulmonary artery pressure is 15 to 20 psi. The doctor performing the procedure measured mine at over 80. I’m sorry, he said, so sincerely, as I lay on the table with a probe still searching out the dark truths about my heart. You have pulmonary hypertension, and you can’t go home just yet. 

That same weekend, before we knew anything was truly wrong.

I Know Why You’re Here

My father flew across the country looking for any way to help. The news began to spread from family to friends to clients, but I didn’t want to see anyone until I could stop crying. Everyone wanted me to stop crying. The cardiologist let me wear my own clothes, take showers, take off the electrodes. My doctors came to see me, called my specialists for updates, told me funny stories about their kids. My wonderful husband brought treats from my favorite bakery on every visit. Together we walked our son around and around the ward, showing him the aquarium in the waiting room, pointing out the emergency helicopter landing on the roof outside my window.  

The nurses. Oh, the nurses. They were my best friends, my big sisters, my angels. 

Margie came running down the hallway in the early evening. Braden, she said, so excited. There’s somebody here you have to meet. Jeannette Morrill is here.

Who, I asked, is Jeannette Morrill?

Jeannette Morrill is one of the longest-lived survivors of pulmonary hypertension in the nation. Diagnosed at age 23 over 35 years ago, she was told she had two years to live. But against all odds and every expectation, she is still here. She travels from her home in northern Maine all over the country to advocate for PH awareness and a cure, and she has just written a book about her experiences called Living with Pulmonary Hypertension: 34 Years and Counting. She was having a painful flare up of rheumatoid arthritis, but she told Margie of course she would talk to me.

I have always been a visual learner. Until I met Jeannette, so strong and so warm and so alive, I could not see a future for myself with this disease. After I met her, that future was all I saw. I sat by her bed and she grasped my hand. Tell me, she said. And I did. The words just tumbled out until I was breathless all over again … but from excitement. From hope. She told me about her journey, a journey that began before there were treatments and support groups and conferences, when there was only sympathy.

She told me how she survived because she was a true responder—a very small percentage of PH patients who react to calcium channel blockers, basic blood pressure medications, years ago when that was all there was to take. True responders often see their symptoms reversed and their survival improve dramatically by taking just a few pills a day. These drugs had allowed Jeannette to adopt and raise two boys with her husband, David, and to adopt pulmonary hypertension as her cause. Eventually their efficacy waned and she moved on to more intense treatments, but she always persevered. Jeannette has been living a rich life with PH for as long as I’ve been alive.

“I don’t know why I’m still here,” she told me. I do, I thought, selfishly, but so gratefully. I do. I needed you to be here.  

I met my new pulmonary hypertension specialist, Dr. Wirth, the next day. He said we needed more tests to determine if I had primary PH or secondary PH (brought on by another so far undetected condition, like lupus, or sclerodoma). We needed to know if my PH had a cause, or if it was one of the truly rare cases called idiopathic, that strike out of nowhere for no known reason. He ordered another right heart catheterization to garner better measurements and to test my response to CCBs. I felt he was marshaling facts like soldiers, that we were laying in provisions for a good fight. He was very soft-spoken and he radiated calm. When I talked to him, I felt safe.

Buoyed up by knowing Jeannette was just down the hallway, that my husband was in my room waiting for me and that everyone I loved was praying I would be well, I almost refused the Valium before my second right heart cath. I had been told it was probably the last test I needed before I could go home and begin my treatment as an outpatient. That is what I focused on, lying on the gurney and then on the table, swaddled in heated blankets, pinned by the radiation shields. Home.

This cath was more complex than the first. I knew Dr. Wirth was watching from the observation deck, and that Dr. Ryan, the cardiologist, would be using two probes and taking more detailed measurements. I knew when the measurements were complete they would ask me to breathe nitric oxide through a mask for five minutes—a vasodilator challenge. If the blood vessels in my lungs opened and the pressures in my pulmonary artery decreased, I would be a true responder and able to take CCBs.

I had no expectations. I had only one thought: after this, you can go home.

Into the Night of My Very Own Room

This isn’t like going to the dentist, the anesthesiologist explained. You won’t smell anything or taste anything or start feeling funny. Just take deep breaths into this mask for five minutes. Okay?

Okay.

I closed my eyes and drew that first deep breath. Then another. And another. It was so calming to just breathe. I could feel each breath coming from a deep place, and then an even deeper place. Another breath. And another. It was so simple to breathe. I hadn’t realized. I had been doing it wrong for so long.

I heard Dr. Ryan’s voice. Did it really go down that much? He asked. I kept breathing. Each breath drawn up, fresh and cool, from a new well. Again. And again.

Wow, someone said. Wow. I kept breathing, but I was doing something else, now—I was hoping.

The anesthesiologist pulled the mask away from my face and I realized that it wasn’t just me—the entire energy in the room had changed. One of the women on the team beamed at me. Good job! she said, her eyes wet with tears. You did such a good job!

Dr. Wirth came down from the observation deck. He was smiling, too. Did it work? I asked him. Did I do a good job?

 Your pressures went down to a normal range, he said. Yes, Braden, it worked.

The easy breathing was leaving me, the effects of the nitric were fading. But something bright was blooming in my chest. People were squeezing my shoulders, stroking my hair. I thought—you are all in this moment I will never, ever forget. Some part of me will always be in this room, on this table and under these lights, measuring the life I thought I’d lost against the life you just returned to me.

Thank you, I kept saying. Thank you.

They wheeled me into an adjoining room to begin the process of applying pressure to the cath site and start my four hours of post-procedure bed rest. When we rolled through the swinging doors I saw one of the members of my initial cath team—a young woman who had asked me, after my diagnosis had first been confirmed, if I wanted any extra Valium. There was something so sweet and pragmatic and right about that question at just that moment that I had felt better instantly. I smiled at her. I was so glad to see her. She reached out to me as they wheeled me past.

You are going to live a long and happy life, she told me. And that’s when I started to cry.

The summer after my diagnosis, after testing showed my pressures back in normal range.

The first night I was home, after my son’s bath, the three of us sat cuddled together in a pool of lamplight in the nursery and read his bedtime story. He chose, as he almost always does, Where The Wild Things Are. My son turned the pages, my husband roared whenever a Wild Thing appeared and I read the book. But my voice kept getting caught at the end, on the description of Max’s return journey from where the Wild Things are, when he “sailed back over a year, and in and out of weeks, and through a day, and into the night of his very own room.”

Reading the book as a child it seemed ridiculous that anyone could have such an extraordinary experience and return to find their normal, everyday life at the exact place they left it. But I know better, now. We kissed our son good night and went downstairs to the kitchen, where my supper was waiting for me, and it was still hot.

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Living with PAH

May 2, 2012

After being diagnosed with PH in 1976, today is the day I am going to start writing about my experiences in the hopes of sharing what I know about living with this incurable and rare disease.

This past weekend I attended “a celebration of life service” for a young woman who was diagnosed with PH in 2010. She had received a lung transplant about a year ago. She was an amazing young woman, 26 years old, at the time of her death. In December we were in the hospital together and I got to spend some time with her and her Mom. I knew she was in a serious battle for her life. She was such a fighter.

How can I honor her? As hard as it is to not wonder “why” her and not me, I know that I must not go there because it takes too much energy away from what is truly important: to keep fighting this battle against PH. That is what I must to do honor this young woman and her fight.

It is so upsetting to hear of another losing the battle, but at the same time it tells me that the work is not done. We, the patients, and caregivers, friends, family, doctors, nurses, everyone who is affected by PH must work hard to raise awareness and help in any way we can to find a cure for this incurable disease.

In the new year, after returning home from a 19 day stay at MMC, I began to regain my strength, and look once again to how I would get back in the fight against PH. A couple of opportunities came to me and I was headed to San Diego, where I took part in a 2-day conference. This event sponsored by Gilead, a pharmaceutical company which has PH medications, was very enlightening. I reconnected with several other patients who I had met from past conferences. I made some new connections, as well. There is much going on to help patients.

Jeannette in San Diego

I was invited to speak at a Forum in Hartford, CT in April.Jeannette in CT Once again I was able to reconnect with patients that I had met and put names to some people I had only talked with and never met. While I was delivering my talk I noticed that two people in the audience had tears filling their eyes and dripping down their cheeks. I knew that I would have to contact them and talk with them before the meeting ended. The first woman was in her late 50’s, and had been diagnosed this past November. As we talked I learned she was one of five sisters. One of her older sisters had passed away with PH in 1976, “the year you were diagnosed”, she noted. Her younger sister passed away with the disease just two years before. She had many feelings about what she would face and what her outcome would be. She told me she had gained some hope from my talk and my longevity with PH. The second woman I talked with was only in her early 30’s, had a husband, and a little boy. Again my story gave her hope for a future she was not sure she would have.

I was very unsure when I started telling and sharing my story to others. How would it be perceived? Would people question my motives? After my first talk at the 2004 Conference in Miami, I started feeling more comfortable and not worried about what people may or may not be thinking. The response and one-on-one talks with those in the audience after speaking gave me the confidence to begin to believe that what I was doing was helping other patients and their family members to see that there is a life with PH; one that has to be adapted and adjustments made to accommodate all the changes that PH exerts on our lives.

Attitudes make such a difference in our lives. We know that we will have good days and bad days. The hard part is learning that we have to accept them for what they are; a nuisance and a bump in the road, but one that we can overcome and move on.

I am preparing for several new adventures in the next few weeks and with summer coming, golf we be a nearly daily ritual for me.Golfing

I am starting this blog now in the hopes that I will be able to connect with many other patients and make an impact on the hold that PH has on each affected by this disease.  More to come…

 

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The Story of Uphill Journeys

Uphill Journeys Founder Jeannette Morrill was inspired to start this organization, and continue her advocacy and fundraising work under its umbrella, by her first meeting with a newly diagnosed patient at Maine Medical Center in 2010. A long-time PH/PAH advocate with the Pulmonary Hypertension Association (PHA), Jeannette realized she could also raise awareness of symptoms, diagnosis protocols, treatments and community building right in her own backyard. Jeannette shared her memories of this epiphany on the PHA website. 10% of all donations to Uphill Journeys support the worldwide efforts of PHA.

Déjà vu

I woke up on October 9, 2010, and had to go straight back to bed. I just didn’t feel right. I was sweating, and had developed chest pain. My son, Ian, told me I was flushed and said, “We’re going to the hospital.” I was frustrated. I hadn’t been admitted to the hospital in more than 10 months. But I was scared, and I knew Ian was right.

The Emergency Room doctor felt I should go to a larger hospital, where physicians would know more about dealing with pulmonary hypertension and my treprostinil (Remodulin™) intravenous pump. I wanted to go to Maine Medical Center, several hours away in Portland, to see my PH specialist. The nurse agreed — and when my husband David arrived, he was adamant. So off I went.

I was seen by a cardiologist, who ordered a cardiac catheterization for Monday. I would be in the hospital over the weekend. Why was this happening to me now? I had support group and physician meetings and a trip to Rochester, N.Y., scheduled in just days. I did not have time to be sick! But I would soon find out why my life had taken this turn at just this time.

On Sunday, one of the nurses asked if I would see a young woman on the floor who had just been diagnosed with PH the day before. Even though my pain had become more intense, I told her absolutely. I could not even get up from bed, so I asked if she could come to me. And so I met Braden Buehler.

I saw myself in Braden — young, vibrant, full of life, a beautiful person. Seeing her troubled face, I remembered just how I had felt 35 years ago when I was first told I had PH and had only two years to live. Like me, Braden had become increasingly short of breath when doing simple tasks. She had just had her first baby. She told herself she needed to get back in shape, not work as hard, get more sleep. Then she fainted, was given an ECHO, and was sent straight to the hospital. I remembered making the same excuses, and how terrible it was at first to discover what was wrong.

Read the rest of the story at phassociation.org

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