Stories of Hope

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The Results of my Lung Transplant have been Nothing Short of Spectacular

 

Meet Brendan

My name is Brendan Morrison and I am a 27-year old Lung Transplant Recipient living in Wenatchee, WA.

My name is Brendan Morrison and I am a 27-year old Lung Transplant Recipient living in Wenatchee, WA.

Growing up I was an active kid. Everything from soccer to running to snowboarding and everything in between, I was into it. The whole core of my being was built by spending time outside and pushing myself in various activities.

In the summer of 2015 just after my sophomore year of college, I started to notice my fitness declining despite my active lifestyle. Things that used to be easy, like going out for a run or a hike started to become more and more difficult. It was at this point that my family and I began to seek answers from various lung specialists in Washington and around the country.

Despite meeting with some of the top doctors in the pulmonary field and having multiple different tests and scans done, no one was able to give me a firm diagnosis. My case was like nothing they had seen before. Over the next couple of months, my lung function continued to decline until I required supplemental oxygen to go about my daily activities. Thanks to the help of my family and friends I was able to stay healthy enough to finish school, but my ability to be active in the outdoors was almost nonexistent.

Just after I graduated from college in the winter of 2018, my lung function had declined to the point where my doctors advised me to pursue lung transplant. I applied to a number of different centers around the country, but because of the complexity of my condition and lack of a diagnosis, Duke Medical Center was the only place that accepted me. My family and I relocated to Durham, NC in early 2019 and I received my double lung transplant on May 15, 2019.

The results of my lung transplant have been nothing short of spectacular. Though there have been some bumps along the way, I still could not be more thankful to my donor and my second chance at life. Since leaving the hospital I have not needed any supplemental oxygen and I have been able to return to many of the outdoor hobbies I enjoyed before I got sick.

About 2 years after my lung transplant, my coordinator at Duke reached out to me and asked if I would like to join the Lung Transplant Foundation as a mentor. I could not have said yes fast enough. The opportunity to speak with others going through the transplant process and to be a positive force in their journeys is such an honor. Giving back to the transplant community brings me so much joy and I am so thankful that an organization like the Lung Transplant Foundation exists.

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Are you or someone you know in need of a mentor?

NOW could be the ideal time to request a peer to walk alongside of you on your transplant journey. No matter what stage you are or your role—patient or caregiver—we have mentors trained and experienced, ready to help. Learn more on our Mentorship page. 

Amy Skiba

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Make an impact, share your BOS story

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The backstory on why we need your story 

by Lung Transplant Foundation Executive Director, Amy Skiba

Eighteen months, 3 weeks and two days. That is exactly how long our organization had been urging the FDA to let us hold an Externally-Led Patient-Focused Drug Development (or EL-PFDD) meeting. And finally, on June 22, 2022, it happened and the FDA is all ears! 

Watch the Meeting

Many of you knew and were inspired by our organization’s founder, Jeff Goldstein. I was lucky enough to work with Jeff, if only for a short time. In 2009, he founded The Lung Transplant Foundation (LTF) for one reason—to help others who had undergone a lung transplant as he had—improve their chances of surviving.

When people asked why he founded the Lung Transplant Foundation, I can remember Jeff explaining,

“Since my transplant, I have lost several friends to rejection…I couldn’t wrap my brain around this rejection issue that took my friends so quickly and suddenly…and was quite likely to take me as well.”

His words were prophetic. Chronic rejection issues known as a condition called Bronchiolitis Obliterans Syndrome, or BOS (pronounced boss) ultimately took Jeff’s life in June of 2021.

In September of 2020, when the FDA first announced it would be holding Patient-Focused Drug Development Meetings, Jeff said,

“This is it! This is our chance to make our case!!” 

Jeff knew that by putting names, faces and stories to BOS, we could really start gaining ground on effective therapies to treat it. He also knew that an externally-led PFDD meeting would be our only chance to get in front of the FDA and tell the stories surrounding BOS. He immediately went to work gathering the materials we’d need for our Letter of Intent.

Even toward the end of his life, when he was ailing, Jeff was laser-focused on persuading the FDA to agree to hold this meeting about BOS. Jeff and I finished up our Letter of Intent to the FDA on June 20, 2021. He passed away two weeks later. In July, we got the green light to have the June 2022 PFDD meeting. 

You can imagine how bittersweet this happy news was for everyone who had known Jeff and worked with The Lung Transplant Foundation. The first step toward his primary goal had been accomplished but he lost his battle with chronic rejection before seeing it happen. Please help us carry on Jeff’s legacy by ensuring this pivotal meeting is well-attended.

Martha and Jeff

I’m so happy that Jeff’s wife Martha will be speaking at the June 22 meeting to remind us about Jeff’s life, his wishes, and his goal for BOS to be vanquished.

So you see, not only is this June 22 meeting a dream realized, it is also a tribute to Jeff’s life. Participating in the meeting in any way you can is an action we can take to honor all those who have been sidelined or lost to this poorly understood condition.

If you have been touched by BOS, we want to hear from you. We want the FDA staff in attendance to hear directly from patients, their families, caregivers and patient advocates.

By doing so you will help us achieve Jeff’s vision, to help create a world where all lung transplant patients can live long, healthy lives.

Thank you in advance for anything you can do to help us make the most of this meeting.

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Jen and Pete Eisenmann

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My role as caregiver started before the transplant

Hi! I’ve been asked to share some of my experiences as someone who has been a caregiver to a lung transplant recipient.

My name is Pete and I live in Durham, NC, with my wife of just over 18 years, Jen. During this time I have been personally involved in her medical care as she has cystic fibrosis (CF), which is a genetic disorder that affects the lungs, pancreas, and other organs, causing a build-up of mucus. In the lungs, this is particularly problematic as it clogs airways and leads to repeated infections, inflammation, and ultimately respiratory failure. There is presently no cure for CF, although recently there are new and promising genetic therapies that can greatly improve the health of those with CF.

Double lung transplant

As Jen’s health and lungs deteriorated we moved to Durham in anticipation of, and in preparation for her to be evaluated for a double lung transplant at UNC. Jen moved in January 2015 and I followed her in April 2015 (I needed to transition out of a business and sell our home in Aiken, SC). Jen continued to decline in health and she was listed for transplant in July 2016. Following 3 “dry runs” – where you get the call that there is a possible match for lungs, go to the hospital, and prepare for transplant only to be told that it wasn’t a match – Jen received her new lungs on December 14, 2016.

My role as a caregiver

My role as caregiver started before the transplant as Jen was in need of help due to the dire condition of her lungs – while in Durham she was on oxygen 24/7 and went through hospitalizations for infections and/or viral illnesses. Shortly prior to transplant, Jen was so weak that she had to crawl up the stairs in our home to get to the bedroom.

Following the transplant, the caregiving role kicked into full gear. In addition to the obvious, recovery from major surgery there is an entirely new pharmaceutical regimen, physical and occupational therapy, dietary demands for weight and strength – there is also an overwhelming amount of attention to detail required due to the danger of infection and sickness due to the immunosuppression drugs. What is preventing your body from rejecting the new lungs is also lessening the body’s ability to fight the myriad of bacteria and viruses that surround us every day.

There is simply no way to adequately describe and convey the journey of caregiving in a few paragraphs. Let me summarize my experience as a primary caregiver by saying that it was as demanding, and on some level rewarding, of a responsibility that I have shouldered, so far, in my life.

Now, nearly three years out from transplant, Jen and I are able to turn our attention to getting our lives back on course as a couple, not caregiver and patient. When asked how Jen is doing, one of our standard responses is, “so thankful to be alive, so very, very appreciative for the donor family, and working hard to stay healthy.”

Part of that work is supporting the Lung Transplant Foundation. Jen presently serves on the national board and is the executive director of the NC chapter. There is a great need to support and fund research so that the outcomes for those who have gone through a lung transplant can improve and survival rates can be extended beyond what we have at the present time. Jen and I are thankful for the work that the Lung Transplant Foundation is doing.

Support Lung Transplant Foundation

A lung transplant transforms lives affected by diseases such as cystic fibrosis, pulmonary fibrosis, and COPD. These diseases affect more than 15 million Americans and are the fourth leading cause of death in the United States. Rejection rates for lung transplant recipients are worse than that of any transplanted organ. We want to change that through funding research to stop all lung transplant rejection. We can’t do it alone. We invite you to help people like Jen and Pete. Make a donation or learn more about how you can be involved.

Donate to Lung Transplant Foundation

 

Wills Family

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A Promise Kept – A Caregiver story

by Nelson Wills

“Take care of Nicole.” 

Those are the last words my father in law, Gene Parris, said to me before he passed away at age 57 from a four-month losing battle with Pulmonary Fibrosis. Traumatic and sudden. Gene’s symptoms were an unproductive cough and shortness of breath.  

His final words were not a surprise to me. Nicole had recently started showing the same symptoms: coughing and shortness of breath. Her health situation was put on hold as we dealt with Gene’s illness. But I made that promise to him. 

Your lungs are not happy

We got to know Gene’s ICU Pulmonologist and set up an appointment for Nicole as soon as we celebrated Gene’s excellent life.  Next thing we know, we’re told, “Nicole, your lungs are not happy.” 

That was in July of 2014. In June of 2016, Nicole received her sparkling new lungs.

Nicole is now 44 years old.  She is as beautiful as ever, a mother to our 13-year-old young man, my wife and a good friend to many.  Her smile is infectious. Her faith is impenetrable. We thank her donor for giving her the gift of life all of the time. This gift of “bonus time,” as I call it, is invaluable. 

How we got here is another story.

When the train went off the tracks, Nicole and I went to work. We had no margin for error. You know your wife is sick, but you have no plan on how to fight it. What do we do? 

Tests. Procedures. Incorrect diagnosis. Clinic visits. More tests. Should we get our affairs in order? 

Eventually, Nicole was diagnosed with Idiopathic Pulmonary Fibrosis. What will the disease process be? Inflammation. Scar tissue. Surgery. More bad news. Transplant evaluation. 

In reality, everything kept getting worse from the outside, but Nicole and I remained positive that we would find a way out, one way or another. How much time do we have together as a family?

Living in an ICU room with a machine keeping your wife alive. Our 10-year-old son staying with relatives. Our daily deal was for him to have fun and be good. I would take care of Mommy. 

A life-saving transplant

A last resort lung transplant at Duke University Medical Center saved Nicole’s life. My emotions were mixed.  Someone had to pass for my wife to live.

As a caregiver, you need to have time to decompress.  CaringBridge was a godsend for me. It allowed me to focus on Nicole and send updates as time allowed. The little blog that I started became a good emotional outlet for me and the responses gave Nicole hope and comfort with all of the encouragement and prayers we received.

Now the post double lung transplant caregiver phase begins…

Caregiving isn’t for the faint of heart

Post-transplant was the toughest phase for me. Nicole was in a lot of pain, which is to be expected after having your lungs exchanged.  With eight chest tubes, she looked like an octopus. During recovery, complications happen. Rejection happens. We battled and made it through each setback. In the moment, you do what you have to do. Looking back, it was a lot.

Nicole was a trooper.  I was the cheerleader and the coach. A positive attitude was everything.  She started getting her feet back under her with the help of the physical therapy team.  

After 3 weeks, Nicole was discharged to outpatient status. We lived in a hotel for the next two and a half months. Close quarters took their toll on our relationship on multiple levels.  

It was one thing after another during the recovery phase. As a caregiver, I improvised to best support her as she recovered. At the same time, I worked remotely to maintain my job adding to the complexity of the situation.   

Nicole lost 20% of her body weight. A month out, she is losing a pound per day.  A new and big complication is now in front of us: the prospect of being readmitted as an inpatient and having a feeding tube inserted to provide critical nutrition. I petitioned her docs to prescribe medical THC. Thankfully, they did and it worked like a charm to boost her appetite. Another crisis averted.

Nicole was discharged as an outpatient right before Labor Day and we made it home just in time for our son’s first day of sixth grade.  

Recovery is full of peaks and valleys

The recovery at home was no joke. All of the regimented sterile stuff, medications, not being close to our transplant center.  I ran interference on the challenges and supported her as best as I could, as we restarted our new post-transplant lives.

There have been big peaks along the way, but also some dark scary valleys. There is no way to fully prepare yourself…as a caregiver or as a patient. Expect the unexpected but keep pushing and believing.

A miracle received

Nicole has received a miracle. Our son and I have received a miracle of more time with her. Everyone who knows her has received a miracle. She is an inspiration to all of us who are lucky to know her.  

I did my best to take care of Nicole.

I kept my promise to her father. 

Staying positive is the biggest piece of advice I can offer. Our deepest condolences and eternal gratitude to our organ donor and the family for sharing the ultimate gift of life. Please make sure everyone you know is registered a tissue donor.

Support Lung Transplant Foundation

Not everyone gets new lungs in time. And sometimes chronic rejection makes it impossible to survive a lung transplant. The Lung Transplant Foundation is working every day to improve the lives of lung transplant patients and their families like Wills family.
With your support, we can impact the lung transplant community in a lasting way. We invite you to help people like the Wills family. Make a donation or learn more about how you can be involved.

Donate to Lung Transplant Foundation

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What does it mean to celebrate my first year of breathing on my own

We asked one of our Facebook followers, Lisa, what it meant to celebrate her first year of breathing on her own after a double lung transplant on June 11, 2018. 

Lisa says, “I’m loving life again. I am so grateful for the donor and the donor’s family; they will forever be in my prayers.” Reflecting back on her journey, she says, “It means the world to be able to take a deep breath.” This is her story.

“At around age 30, I was diagnosed with pulmonary fibrosis. I was on oxygen for 16 years, wondering what day would be my last day. We never think that we would have to struggle to take a breath. I’ve learned not to take life for granted anymore.

What does it mean to celebrate my first year of breathing on my own? It is hard for me to put it into words. I am truly blessed to be able to run, to ride on an airplane without having to have a special oxygen tank, and getting to know my grandbabies without wearing oxygen. What it means to walk down the street, and be able to swing your arms back and forth, to be able to jump up and down, to wake up and get dressed, and to not have to worry about having enough oxygen tanks with oxygen.

I am so grateful to be hands-free, and no matter the different challenges I may face today, it means the world to be able to take a deep breath and to just hang out with my family and my friends, and to know that God is not finished with me yet. I give God all the glory and praise to celebrate this first year breathing on my own.”

Do you have a story to share? We’d love to hear more stories like this from lung transplant recipients and their caregivers. Please send us an email to info@lungtransplantfoundation.org. You, too, can be an inspiration to others.

Support Lung Transplant Foundation

A lung transplant transforms lives affected by diseases such as cystic fibrosis, pulmonary fibrosis, and COPD. These diseases affect more than 15 million Americans and are the fourth leading cause of death in the United States. Rejection rates for lung transplant recipients are worse than that of any transplanted organ. We want to change that through funding research to stop all lung transplant rejection. We can’t do it alone. We invite you to help people like Lisa. Make a donation or learn more about how you can be involved.

Donate to Lung Transplant Foundation

grateful lung transplant recipient

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This is a story of deep gratitude.

This is a story of deep gratitude. A story of a relationship with a donor’s family.

“I am Jerry, and I received the gift of life with double lung transplant at IU Health Methodist Hospital in Indianapolis on June 2, 2015.  

In 2008 during a routine examination, scarring was noted on my lungs. A follow-up exam with a Pulmonologist confirmed that scarring was Idiopathic Pulmonary Fibrosis.  

I was advised the disease contains a rather bleak prognosis, of death likely within 5 years of diagnosis.  Fortunately, the disease remained somewhat dormant for several years.  

In January 2014 I ended up hospitalized with Pneumonia, which was precipitated by several increased bouts of shortness of breath.  I was then advised of the need for continuous oxygen, and the need to proceed with lung transplant inquiry.  

My Pulmonologist referred me initially to Cleveland Clinic.  I was approved there in November 2014, and subsequently approved as well at IU Methodist in January 2015.

After having a dry run in March 2015, I received the gift of life on June 2, 2015, from my donor angel Tristan Hackman. 

I have been blessed with a renewed opportunity to live. I made contact with my donor’s family, including her son, mother, father, brother, sister, niece, and nephews.  They have received me with open arms, and I too have reciprocated. We have met several times, and routinely stay in touch.  

This gift of life has allowed me to enjoy my family and friends, that strongly supported me during my 1 1/2 years of preparation and oxygen dependency.  I have been able to spend quality time with my wife of 38 years (Tina), as well as enjoy the lives of my children and families. I have two children, and two grandchildren ages 6 and 2.

I am thankful for my gift of life, and forever grateful to my donor Tristan Hackman” 

PHOTO: Jerry and wife Tina and I enjoying their 38th anniversary in downtown Indianapolis.

Jerry – Transplanted: June 2, 2015

Support Lung Transplant Foundation

A lung transplant transforms lives affected by diseases such as cystic fibrosis, pulmonary fibrosis, and COPD. These diseases affect more than 15 million Americans and are the fourth leading cause of death in the United States. Rejection rates for lung transplant recipients are worse than that of any transplanted organ. We want to change that through funding research to stop all lung transplant rejection. We can’t do it alone. We invite you to help people like Jerry. Make a donation or learn more about how you can be involved.

Donate to Lung Transplant Foundation

lung transplant recipient

More hope for more adventures, more tomorrows…

Laura – Transplanted 2014

Having a lung transplant allowed me to travel and see the places I love. The Lung Transplant Foundation gives me more hope for more adventures, more tomorrows. 

Support Lung Transplant Foundation

A lung transplant transforms lives affected by diseases such as cystic fibrosis, pulmonary fibrosis, and COPD. These diseases affect more than 15 million Americans and are the fourth leading cause of death in the United States. Rejection rates for lung transplant recipients are worse than that of any transplanted organ. We want to change that through funding research to stop all lung transplant rejection. We can’t do it alone. We invite you to help people like Laura. Make a donation or learn more about how you can be involved.

Donate to Lung Transplant Foundation

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I have been gifted nine years of wonderful life

 “All you have to decide is what to do with the time that is given to you.” -Gandalf

 Because of my donor, I have been gifted nine years of wonderful life. 

Jess – Transplanted April 18, 2010

Support Lung Transplant Foundation

A lung transplant transforms lives affected by diseases such as cystic fibrosis, pulmonary fibrosis, and COPD. These diseases affect more than 15 million Americans and are the fourth leading cause of death in the United States. Rejection rates for lung transplant recipients are worse than that of any transplanted organ. We want to change that through funding research to stop all lung transplant rejection. We can’t do it alone. We invite you to help people like Jess. Make a donation or learn more about how you can be involved.

Donate to Lung Transplant Foundation

The gift of life

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The gift of life…

The gift of life has given me my life back.

Deepest gratitude to my donor family forever & ever…. 2 years & 9 months post double lung transplant at UCLA!
Maqsuda – Transplant date: 2016

Support Lung Transplant Foundation

A lung transplant transforms lives affected by diseases such as cystic fibrosis, pulmonary fibrosis and COPD. These diseases affect more than 15 million Americans and are the fourth leading cause of death in the United States. Rejection rates for lung transplant recipients are worse than that of any transplanted organ. We want to change that through funding research to stop all lung transplant rejection. We can’t do it alone. We invite you to help people like Maqsuda. Make a donation or learn more about how you can be involved.

Donate to Lung Transplant Foundation

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