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Transplant

Lung transplantation can be a life-saving treatment option for some people living with pulmonary hypertension.

Transplant gave me back the ordinary things that once felt out of reach, like going up a flight of stairs without mapping out where I’d need to stop and breathe, being able to travel freely without measuring how many oxygen tanks I would need, and spending time with my family being present for moments I once feared I would miss.

Izabelle Nicole Lamarre, diagnosed with PAH in 2017, two-time transplant recipient 2020 & 2024, Ottawa, ON

Transplant cures pulmonary hypertension but comes with significant medical complexities of its own.

Double-lung transplant is the most common type of transplant for pulmonary hypertension patients. A single-lung transplant is less common than a double-lung transplant but may be appropriate for certain PH patients.

Heart-lung transplant is less common and used only when both the heart and lungs are badly damaged and the heart can’t recover on its own.

According to CIHI, in Canada in 2025, there were 51 single-lung transplants, 356 double-lung transplants, and 2 heart-lung transplants. Transplants for pulmonary hypertension are only a fraction of that total.

For many people living with pulmonary hypertension, lung transplant can feel overwhelming. When does it become an option? Who needs it? What does the process involve? Dr. John Granton, Director of the PH Program at Toronto General Hospital and Canadian Pulmonary Hypertension Medical Committee Programs Subcommittee Chair, walks us through the basics.

Does everyone with pulmonary hypertension need a transplant?

“No,” Dr. Granton explains. “We don’t really know the exact number.”

Modern PH therapies have significantly changed the timeline of disease progression, delaying—and sometimes preventing—the need for transplant. However, some patients still require transplant, especially those who do not respond to therapy or who have higher-risk forms of PH.

Not everyone who needs a transplant is eligible for one, and not everyone who is eligible chooses to have a transplant. Severe deconditioning (when someone loses physical strength through being ill, injured, or not active), high body mass index, smoking, substance use, or other medical conditions may make transplant too risky.

When is transplant discussed?

Dr. Granton believes transplant should be discussed earlier rather than later. Earlier conversations should occur (e.g. shortly after diagnosis) in some forms of PH that are less likely to respond to treatment. Conversations should also occur when patients either progress or fail to respond to maximal medical therapies.

Having the conversation does not necessarily mean immediate referral to the transplant assessment team, but it gives patients and families time to process the option and prepare.

It also allows time for people to:

Stop smoking
Address substance use
Lose weight
Improve their physical conditioning
Strengthen their support systems

“If you suddenly, in the final hour, start having that conversation, there’s no way they’re going to be able to lose weight or become conditioned,” he says.

How do patients react?

"It is going to be a difficult conversation for patients" he says candidly.

Some patients are shocked that their doctor is raising transplant as a possibility. Others are relieved to discuss it openly.

Avoiding the conversation, however, can be harmful. “I think you’re doing an injustice if you don’t have that conversation.”

What happens during transplant assessment?

The transplant assessment process is thorough — and can feel exhausting. Patients undergo scans, blood work, heart catheterization, and extensive evaluation, meeting:

A transplant physician and surgeon
Nurse coordinator
Social worker
Psychiatrist or psychologist
Physiotherapist
Nutritionist
Anesthesiologist

The social worker evaluates the patient’s support systems. Transplant isn’t the sort of thing you can go through without help. “It takes a village,” Dr. Granton says.

The physiotherapist assesses strength and prescribes exercise. Nutritionists prepare patients for steroid-related dietary changes.

The assessment timeline can range from a week (for critically ill patients) to several months. Once the patient has finished the evaluations, the transplant team meets to review their case.

Patients may be:

Added to the transplant waiting list
Conditionally listed (pending weight loss or other changes)
Deferred, if they do not need a transplant yet but may need one in future.

What happens if someone is approved?

If someone is listed, their priority for a transplant depends on their illness severity. The time to getting a transplant also depends on their blood type, body size, and antibody status.

The average wait time for a transplant is about six months, (again depending on urgency and other factors) though it varies widely.

What is life on the waiting list like?

Patients must stay ready to come to the hospital at any time. Their ability to travel is limited.

"People often feel like they're being held hostage, putting their lives on hold, for whatever time it takes,” Dr. Granton says.

At the same time, people are encouraged to stay active and improve their physical conditioning. “Prehabilitation” improves transplant outcomes.

What happens during surgery?

Most pulmonary hypertension patients receive a double lung transplant in a surgery lasting 8–12 hours.

Afterward, patients have a breathing tube in their airway and are attached to a ventilator until they are ready to breathe for themselves. Some may require temporary ECMO (heart-lung machine) support. Chest tubes are placed to allow air, fluid, and blood to drain away.

If all goes well, people stay in ICU for about a week and stay in hospital for about a month. Rehabilitation begins early.

What does life look like after transplant?

Transplant requires lifelong follow-up. Patients return to the hospital regularly for breathing tests, CT scans, bronchoscopies, and biopsies.

Immunosuppressive medications, taken to prevent rejection of the new lungs, must be continued for life, but they increase infection and cancer risk.

Chronic rejection—called chronic allograft dysfunction—remains the biggest long-term challenge. After transplant, people survive 7.5 to 8 years on average, though many live longer.

Dr. Granton describes transplant as “trading one disease for another.” PH is replaced with the chronic management of the transplant. For many patients, however, the trade is worth it. They experience less breathlessness and greater independence. Most, he says, would choose to do it again.

Contributed by: Dr. John Granton, Director of the PH program at the Toronto General Hospital, Toronto, ON, as interviewed by Kimberly Brunelle at PHA Canada

Lung Transplant and PH: The Basics

Lung Transplant and Pulmonary Hypertension: The Basics

2026 webinar

Dr. John Granton guides us through the transplant journey from start to finish.

Together, we’ll explore what happens from the very first conversation about transplant, through the assessment process, navigating the waitlist, undergoing surgery, and into recovery. Whether you’re considering a transplant, supporting a loved one, or simply looking to better understand this complex process, this recording provides clear insights and practical information to help you feel more informed and prepared.

Walking the Transplant Path: Voices from the Pulmonary Hypertension Community

2025 Conference presentation

In this session from PHA Canada’s 2025 PH Community Conference – Patient & Family Symposium, you’ll hear both the medical perspective and lived experience of walking the transplant path.

🩺 Dr. John Granton explains when and how transplantation is considered for PH patients.

💜 Crystal Rutherford, a PH patient, shares her personal journey through the transplant process.

Together, they provide both clinical insight and a heartfelt real-life story about the challenges and hope that come with this life-changing treatment option.

Videos

From not being able to walk up stairs on my own, to being able to play hockey, lift weights and maintain an active lifestyle—the power of transplant has not only given me independence but a chance to experience life like a normal person. Without the power of transplant, I would not be here today. Someone’s decision to donate gave me the opportunity to live.

Braden Gendron, diagnosed with PAH in 2003, double lung transplant recipient 2009, Hampton, NB

PHighting for Time: Why I’m Not Ready for New Lungs Just Yet

Jane Sernoskie, living with PAH since 2016, Ottawa, ON

2026 Connections feature article

Hearing the words “It is time to discuss having a double lung transplant (DLT)” gets a person’s attention. When I was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) in 2016, I knew that a DLT might be an option, but I thought I had many more good years ahead with my own lungs. My doctor explained I would need a “workup,” a battery of tests by the transplant team at Toronto General Hospital (TGH) to determine my candidacy and priority level. He urged me to start the process now so my condition wouldn’t progress to the point where I risked being ineligible. I decided to go ahead, considering it a "safety net" in case my condition declined. The workup took months, as I was also recovering from two strokes and already had a packed medical calendar. The tests were extensive: bone density scans, an echocardiogram, a right heart catheterization, a transesophageal echocardiogram, pulmonary function tests, and more. Finally, I travelled five hours to TGH to sign the listing papers. Making that trip made the safety net real. I wasn’t excited or scared; I just felt I had to do it. I have a little guy at home who needs his Mommy, and I will do anything in my power to make that happen. Until that point, I had pushed the beach ball that was my emotions underwater. That changed during the meeting with the thoracic surgeon. Hearing about the operation—the physical harm of cutting the body open—was difficult, even knowing it could save my life. But the biggest shock was the possible timing. I went to Toronto to set a safety net in place, not to take immediate action. When the surgeon said I could be transplanted in a few months, the beach ball of emotions I had been submerging broke loose, dampening my eyes. I wanted to try the new PAH treatment, sotatercept, and hopefully buy time before living with someone else’s lungs. My case manager called to tell me I was listed as Priority 2. I was expecting to be listed at Priority 1, the lowest urgency. At a physio session, a lady had asked when my husband had been transplanted, assuming he was the patient. When I walked at a good speed on the treadmill, it had shocked the patients around me and added to my disbelief about the urgency of the transplant. Being considered a more urgent case was an unwanted surprise. Thankfully, after advocacy from doctors, family, friends, politicians, Merck, and PHA Canada, I accessed sotatercept early, and it began helping me live better and longer with my own lungs. I pray that continues for me and my "PHellow PHighters." I am so grateful to have this chance. While I know I will one day need donor lungs, for now I am going to "PHight" my hardest with my own lungs

Choosing Life Through Transplant, Twice

Lindsay Forsyth Brochu, double lung transplant recipient 2020 & 2025, Ottawa, ON

2026 Connections feature article

Transplant is a word I never thought I would hear in my lifetime—especially at such a young age. For patients with pulmonary hypertension, transplant is the last option, reserved for when oral medications, pumps, and IV therapies are no longer enough. In 2018, I was diagnosed with Pulmonary Veno-Occlusive Disease. No medications could slow its progression, and in June 2020—during the height of the COVID-19 pandemic—I underwent a double lung transplant. Just one year later, I was re-listed due to chronic rejection. Learning that I would need a double lung transplant not once, but twice, was something I could never have prepared for. After waiting four and a half years, on November 27, 2025, I received a Christmas miracle: a new set of lungs—and a second chance at life. They often say that a transplant trades one disease for another, and in many ways, that’s true. I take multiple immunosuppressant medications and vitamins every day to prevent my body from rejecting my lungs. Exercise is no longer optional—it’s essential to keeping my lungs strong and healthy. Masking, avoiding germs, and being vigilant during cold and flu season are now a part of everyday life, especially when spending time in public or with loved ones. Transplant is a life-altering decision—but even so, it is one I have never regretted. Before being re-listed for my second double lung transplant, I was terrified. I had already been through one transplant and didn’t have the best outcome. What would a second transplant bring? Would it be worth it? Would I endure all of that again only to face the same struggles? Ultimately, I chose quality of life over quantity, and that decision brought me peace. I knew what kind of life I wanted, and I knew a transplant was the only way to get there. The transplant journey is long and demanding. From extensive pre-testing to being listed to waiting by the phone for that life-changing call, it requires patience, perseverance, and an incredible amount of trust. Having a strong support system—family, friends, or both—makes all the difference, especially on hard days. Recovery takes time, but each day gets easier. This time, my recovery has been remarkable. I spent only three weeks in the hospital, compared to six weeks after my first transplant. My body has accepted these lungs beautifully, and for the first time in years, I feel hopeful about the future. I hope to return to work after eight years on disability—a milestone I once thought impossible. My dreams about hiking, skating, downhill skiing, and travelling will finally become a reality. I look forward to returning home to my husband and our puppies and truly living the life we’ve waited so long to have. Transplant has given me my life back. If I ever had to make the same decision again, I would—without hesitation— because this time, the possibilities truly are endless.

The Morning Everything Changed: Sophia’s Transplant Journey

Sophia Ricci, living with PAH since 2009, lung transplant recipient 2023, Edmonton, AB

2026 Connections feature article

Before transplant, how did pulmonary hypertension affect you? “I missed a lot of school because of Remodulin,” Sophia says. “Every site change was 10 days of absolute torture. I wouldn’t be able to move my arms for like two weeks.” Friendships required extra effort. “I have one friend with asthma who would get notes for me, and we would just talk and text all the time while I was in hospital.” Her parents shielded her from earlier conversations about transplant. She says, “I prefer that my parents were protecting me because I don’t think an eight-year-old can handle that.” What was it like when you finally got the call? “I waited a little under four years for my call for lungs. So it was a really long wait.” When the call came, “It was probably the funniest call ever,” she laughed. “I was asleep and my brother barged into my room holding his phone up like it’s a weapon, saying ‘You have lungs, you need to get up and get ready.’ I was annoyed because I wanted to sleep in. Then I heard my mom and I’m like, ‘Oh my God.’ I told a couple of friends, ‘Hey, I’m not gonna be talking for a little while. I’m getting lungs.’ It was surreal.” What do you remember about waking up after transplant? “The first thing I remember was probably the breathing tube. It’s the worst feeling ever.” She spent five weeks in hospital. “The hospital food is absolutely disgusting.” Her dad stocked her room with snacks. “Goldfish mostly. Some things I could snack on.” What changed after transplant? “The first couple of weeks were just filled with appointments,” but after about three months, she returned to school. “I’ve never been able to do phys ed before. I passed with a 90 my first year, which was insane to me. I’ve learned how to run. I’ve been swimming a lot more and I’ve picked up snowboarding.” She’s still coaching basketball and can do more with her siblings. “I can actually play with my little sister.” She doesn’t miss Remodulin. “No Remodulin. That’s the best part.” Has anything been different than you expected after transplant? Before transplant, eating was a struggle. “I always felt sick,” Sophia explains. “My doctors said, ‘Feed her whatever as long as she’s eating.’” After transplant, that changed dramatically. Now, she jokes, “My parents like to say I’ll bite your hand off if you come near my food — which is probably true.” What would you say to another young pulmonary hypertension patient facing transplant? “There are risks, but you can’t really avoid it. It’s going to improve your life by a long shot. It’s gonna suck for a while, but it does get easier.” She adds, “In the end, it’s always worth it.” Sophia is thoughtful about her donor. “I’m thankful for them. It sucked, but it’s changed me for the better. I’m happy that they signed up to be an organ donor.”

Surviving the Storm: My Journey with Pulmonary Hypertension and Transplantation

Use photo of Ella from the blog post Ella MacLeod, living with PH since 2015, transplant recipient 2022

2023 blog post

In July 2015, I came down with what I thought was a chest cold that never seemed to get better. I spent the next three months going to my family doctor and several walk-in clinics, trying to figure out what was happening. I was short of breath, often saw stars, and my heart would race. I passed out on October 31, 2015, and my 6-year-old daughter called 911. I ended up in the ER, where I had an excellent Doctor. Within 2 hours, he thought I had pulmonary hypertension (PH) but wasn't sure which type. I spent the following two weeks in the hospital receiving scans, breathing tests, blood work and a right heart catheterization. This hospital was a teaching hospital, so I also answered questions from resident doctors, interns, and respirologists. Finally, I was diagnosed with Idiopathic pulmonary arterial hypertension (iPAH) and transferred to a PH specialist for care. In March 2020, I joined the waitlist for a transplant. My husband and doctor felt it was the right time, but it was still difficult for me. I wanted to live and be there for my family. I understood, however, that it was only possible when I received my transplant because another family would be experiencing a terrible loss. I would be lying if I said my PH journey has been easy for my family. My husband took six months off work when I was diagnosed, attending all my appointments and becoming a strong advocate for my care. My oldest daughter became a mom to her younger sister. My son and his wife are also caregivers, picking up the slack when needed. I received my transplant in August of 2022 and have learned that having a strong support system is very important. In addition to my friends and family, I have a great transplant nurse who is a phone call away, and I have a friend who had a double lung transplant who has helped guide me through my PH and transplant journey. I am so grateful for everyone who has helped me through my journey, and I have learned that sometimes, you need to ask for help when you need it.

My Journey to Chronic Illness

Nancy Lewis, living with PH since 2007, transplant recipient 2022

2022 blog post

My journey to chronic illness has been a long one. My official diagnosis came in 2007, but I’d had signs and symptoms for quite a long while before that. I don’t remember the order in which they occurred, but I know that one day my fingers started turning white in the cold. They looked dead, like they belonged to a wax figurine. I began to feel that I couldn’t breathe deeply, even though I was healthy and fit, exercising regularly and eating well. I developed reflux and had a bronchoscopy. The gastroenterologist found no apparent reason and prescribed dietary and behavioural changes if I wanted to avoid medications, which I did. I took a dim view of conventional western medicine in those days. I developed sore, swollen joints on one finger that my primary care provider attributed to normal wear and tear due to age. But when I returned a few months later with symmetrical sore joints on my other hand, and a sudden, inexplicable 20 lb weight loss, she became alarmed and referred me to a rheumatologist. After a bewildering variety of tests and lots of time spent waiting for consultations, the rheumatologist gave me a diagnosis - rheumatoid arthritis (RA), scleroderma and pulmonary fibrosis (PF). It was a relief to have a diagnosis, but very stressful as well, especially as there were 3, all unfamiliar to me. Could they be treated? I was only 47. Is this how my life was going to be from now on? For the first while—6 months? a year? I don’t remember—I resisted the medications my rheumatologist recommended and continued with the naturopath I’d seen for several years. He’d helped me with other things, but sadly not this. I just kept deteriorating. Eventually, I was so debilitated and in pain that I decided to try the medications my rheumatologist had been recommending. I tried several treatments that needed to be taken for three months to see if they worked for me, but none did, and my condition worsened. Finally, I was approved to try a biologic. It felt like my life changed overnight. I no longer woke up every half hour groaning in pain. I stopped shuffling like an old woman. I started gaining weight. My fatigue abated. What a renewal! And after 7-8 years, my rheumatoid arthritis went into remission, and I could stop taking the biologic altogether. Yippee! Of course, I still had scleroderma and pulmonary fibrosis. New drugs were coming online that couldn’t cure but could slow the progression of these conditions, so I added some to my regimen. Fast forward to 2018, when I started to get markedly weaker and more short of breath. Like before, it came on slowly and gradually. Like before, I resisted my respirologist’s recommendation to start supplementary oxygen. By February 2019, though, I couldn’t avoid it any longer. I said yes to oxygen. The respiratory therapist who came the next day to set up my equipment noticed that my heart rate was high. Hearing that, my primary care provider insisted I go to the ER, though I didn’t want to. She was worried I might have pulmonary embolisms, and I did. I went home on blood thinners, and although the clots dissolved, I did not improve; quite the opposite. I was finally referred to the pulmonary hypertension (PH) clinic. My first appointment was in August 2019. The doctor flatly said that he wanted me hospitalized right then and there. I had finally learned to listen to the experts and was admitted immediately. After two weeks on strong diuretics, I went home 20 lbs lighter and on two medications for PH. A 3rd drug was added a few months later, and though the combination was helpful, it wasn’t enough. I still had severe right-sided heart failure. In December 2019, I heard the words I’d hoped never to hear: “I want to refer you to the lung transplant program.” I’d known early on that it might come to this but resolutely put the possibility out of my mind. I was terrified. But I decided I’d at least meet with them and hear what they had to say. After the meeting, I agreed to undergo an assessment to determine if I was eligible. I haven’t cried often along this journey, I just soldiered on, but I broke down when I got home. I was in the place I’d never hoped to reach, yet here I was facing it head-on. The assessment took a while to complete because of COVID. By October 2020, I was deemed eligible and listed for transplant. I had made my peace with the decision to pursue a transplant and looked forward with clear-eyed optimism. I focused on what I could control—diet, exercise, attitude—and put everything I couldn’t control out of my mind. After 18 months on the list and no calls, I finally got one, but the lungs weren’t suitable for me. Another two calls followed quickly but had the same outcome until finally, after the 4th call, I received my beautiful new lungs on July 6, 2022. The first few weeks post-transplant were rough, and I spent two months in the hospital in total, including a month in rehab. But I’ve been doing really well, slowly but surely coming back to life after years of illness. I’m so grateful to do things I hadn’t done in years: breathe deeply, walk more than a block without stopping and resting, cook a meal from scratch, and just live! I no longer have pulmonary fibrosis or PH, but I still have scleroderma, and I will need to monitor my condition closely for the rest of my life. Lots of medications, lots of tests, lots of doctors. I’m ok with that. Chronic illness is a long and winding road, often scary and always unexpected, but I’m thrilled to be where I am now and prepared to face the future, whatever it brings.

Not Just Another Bump in the Road: From Being Diagnosed with CTEPH to Receiving New Lungs

Tina Giroux-Proulx, diagnosed with PH in 2003, transplant recipient 2015, Ottawa, ON

2016 Connections feature article

I was first diagnosed with pulmonary hypertension in September of 2003; I was twenty years old at the time. However, the process of getting to that diagnosis started a year before that when I noticed that my 15-minute walk to school was getting more and more difficult to do. My husband, Joel, trying to be an optimist, thought that I must just have been out of shape and so he suggested I go for a jog. I didn’t even make it out of the parking lot of our building, when I had to stop because I could not breathe. This was my tipping point and I questioned whether there was something seriously wrong with me, so I made an appointment to see my family physician. After an X-ray was done, he diagnosed me with a mild case of asthma and sent me away with puffers to treat it. Unfortunately, after several weeks had gone by, it was clear to me that the medicine was not helping. And so, when I had what I thought was an asthma attack while working outside and my Ventolin® inhaler didn’t give me any kind of relief, I knew there was more to my symptoms. I mentioned my concerns to my family doctor, who advised me to stop taking the medication, but did not do any further investigations. This was surprising to me and I now know I should have questioned him on that, but I was a young adult still learning the ways of adulthood and didn’t feel comfortable doing so. In the weeks following this episode, I started experiencing a lot of chest pains. One night, the pain was so terribly unbearable that anytime I tried to lie down to sleep, it felt like a sharp knife was being stabbed into my chest. My husband and I decided it was time to go to emergency. There, the doctors discovered that I had an overinflated lung. This meant that my lungs were being irritated by something; they just had no idea what. They immediately referred me to a respirologist for a consultation on the matter who, after several tests, discovered that I had pulmonary hypertension. However, Dr. Born was convinced that my PH was secondary to another disease and his bets were on a cancer called mesothelioma—commonly referred to as the “asbestos cancer.” This seemed strange to me as I had never been in contact with asbestos, but stranger things had happened. An appointment for a biopsy was made to confirm this, but the surgeon had some doubts about the diagnosis and wanted to explore a theory of his own. He decided to send me for one more test before doing an invasive surgery: a CT scan with dye. This test revealed what he had suspected; I had multiple micro blood clots sitting in my lungs. Alas, this gave me a final diagnosis of chronic thromboembolic pulmonary hypertension (CTEPH). All in all, it took over a year to reach this diagnosis. At the time, I didn’t know how severe PH was. I was not educated on the matter and felt mostly like it was just another bump in the road that I would soon adapt to and move on from. I was immediately put on blood thinners to control the clotting so I felt like everything was under control. It is not until I was finally referred to Dr. John Granton at the Toronto General Hospital PH Program that I started to understand what PH was all about. Although my new reality was difficult to swallow, I’ve never been one to look at the glass half empty and so I thought: “life has thrown this awful disease your way, you can either allow it to get the best of you or you can show it who’s boss.” And I am always the boss in my life! I completely understood that there would be some adjustments to make and that I wouldn’t be able to do everything, but I intended to at least try. When I lived with PH, physically demanding activities were obviously a challenge, but I always tried to adapt certain activities to my situation. For example, pulling up a chair on the dance floor at a wedding so that I may have a seat while friends and family danced around me, or being the drummer on a work-related dragon boat team instead of a paddler. I always tried to find ways to join in on the fun somehow, but not all activities were as adaptable and it sometimes was difficult to pass on certain things. But if you had to ask me what the most challenging aspect of living with PH really was, it was facing the reality of not being able to have children. Growing up, I was never truly sure where my place was in the world. I didn’t know what kind of career I wanted or what city I should live in, but if there was one thing I was sure of, it was that I was going to be a mother one day. So when the doctors told me that it wasn’t the best idea, I was heartbroken. Joel and I considered adoption, but we both knew that I was not healthy enough to take care of children. Not having children was the right choice, but I still feel at times like there is something missing in my life, a feeling that I am sure will stay forever in my heart. The years following my diagnosis were a rollercoaster ride of ups and downs, but I did the best I could to live a fairly normal life for more than 10 years with CTEPH. Unfortunately, the unpredictability of the disease caught up with me and by June 2014, my health started to take a turn for the worse. It was discovered that my pulmonary pressures had gone up. My PH doctor decided to try me on a new medicine called Adempas®,the only medication approved to treat CTEPH. I was also re-evaluated for pulmonary thromboendarterectomy (PEA) surgery, but as was the case in the past, I did not qualify because my blood clots were too small and too far to reach. And so by September 2014, my journey towards a double-lung transplant began. I received my double-lung transplant on December 2, 2015, but that’s not where the story of my transplant starts. The very first chapter was a meeting with a respirologist from the lung transplant program in Toronto. During this discussion, my family and I were informed on the program itself and we talked about what it meant to get a transplant. The doctor gave us all the details of what it is like to be on the wait list, their expectations of me as a patient and of my husband as a support person, and the grueling facts of the surgery along with the recovery that follows. Basically, we received an overwhelming amount of facts and information, but when I was asked if I still wanted to pursue transplant, my answer was a resounding “yes.” From there, my health team started making arrangements for the next step: the week of assessment. A week filled with tests, consultations, and evaluations all to determine if I qualified for transplant. It took around 8 weeks before I was notified that my team was ready to move forward and I was finally accepted into the program. After a few complications related to the blood thinners I was taking, I was officially put on the transplant list on June 22, 2015. As my husband and I lived in Ottawa, this meant we had to relocate to Toronto to be closer to the Toronto General Hospital. Although we had previously lived in Toronto for our college years, moving was still quite a stressful ordeal. As Joel and I both had to take unpaid leaves from work, finding an apartment without any income was quite the challenge. But we managed with the help of a real estate agent. However, actually living there without any income was a whole other ball game and was probably the biggest challenge of all. With no money coming in and not a whole lot of help from the government, Joel and I were in what felt like an impossible situation. How were we supposed to pay for rent and daily living without jobs? How were we supposed to keep our brains sane and ready for transplant when all we could think about was whether or not we would have a home next month or enough money to buy food? This is the unfortunate reality of most transplant patients. Lucky for us, we received an amazing amount of support from friends, family, and even strangers who collected funds through events and online. It made all the difference in the world! But still, not knowing how long we were going to stay in Toronto meant that we were constantly worrying about having enough money to make it through. Waiting was actually a lot different than what I was expecting. I had imagined that my life would be suddenly filled with all this spare time, but the truth is the hospital keeps you on a pretty tight schedule and you’re actually quite busy. Between tests, bloodwork, clinic appointments, and physiotherapy, I was at the hospital an average of four days a week. Truthfully, my husband and I felt like this was a blessing in disguise as it got us out of the house and kept our minds busy. While on the list, your thoughts can sometimes drift towards the fear of what is to come or whether or not you will even make it to that point, and so having a full schedule helped with that. Although I was terrified at times, I generally tried to keep a positive attitude. I believe that this is what has gotten me through not only the transplant chapter of my life, but my entire PH journey. By November of 2015, my PH had unfortunately progressed to an unmanageable stage and I was hospitalized and put on extracorporeal membrane oxygenation (ECMO), a sort of life-support that gave my heart the well-deserved break that it needed. I was on this machine for six days when the surgeon walked into my hospital room with the best news: that they may have found a matching set of lungs for me. From that point forward, they started the process required to see if the lungs and I were compatible. It took a full 12 hours of testing and waiting before I was told that surgery was a go and I was finally going to get my double lung transplant. Recovering from transplant was one of the hardest things I have ever had to do. It is a very slow process that takes time, patience, and determination. I was definitely determined, but unfortunately I have never been a very patient person so I got frustrated often, especially when it came to learning how to walk again. I also ran into a few complications, which slowed down my progress, but in the end I got through it. Once released from the hospital, my recovery gradually picked up speed and it felt amazing! Each and every day got better. Since then, the plan has been to lead a “normal life” as best as I can. Of course, I will always have to take a lot of medications and I am certainly required to be more germ-aware as I am now immunosuppressed, but I have a much better quality of life. There will always be challenges and I have had to adapt my life slightly, but in the end it is well worth it. And so you ask, how has transplant changed my life? Transplant is the reason why I have a life today and so it has changed everything including my perspective on life. Although I was grateful for the things that I had before, I am much more grateful now. I cherish every waking moment with friends and family because I know how close I came to losing that. I appreciate the small things in life like going for walks or dancing in the middle of my house while singing at the top my lungs. Most importantly, I am determined to work harder on my passions and my dreams, and less on the things that don’t matter. I want to do all of this in honor of my hero: my donor. Life is unpredictable and way too short to take for granted. I know this more than ever now because of transplant.

Two Transplants Strong: Adam Kingz’s New “New Set of Lungs”

Adam Kingz, transplant recipient 1999 & 2014, Beamsville, ON

2016 Connections feature article

I was diagnosed with pulmonary arterial hypertension (PAH), which was then called primary pulmonary hypertension, when I was about twelve years old. One of the main reasons I initially went to see a doctor was because I was passing out in gym class all the time. From there, the process of receiving my diagnosis was long and doctors had no idea what I had. They later said they thought I had had PH for about two years before I received my diagnosis. The day I was diagnosed, I was sent to Sick Kids Hospital in Toronto. I pretty much lived in the hospital after that. It was hard being twelve and having PH. As my friends played, I sat. They continued in school, but even that was too much for me. I was in a wheelchair and on oxygen; the oxygen was a pain to carry with me and being stuck in a wheelchair was difficult. The doctors put me on Flolan®. I was the first child in Ontario to be put on the medication so it was a little nerve-raking. The fact that the medicine had to stay cold and be changed daily was quite taxing on my family. To add to the challenge, I developed an allergy to all tapes so they could only use gauze on me. My health continued to decline and I was able to do less and less. I got the call for my transplant August 23, 1999. I was now thirteen. I was home (one of the few times!), it was 3:00 in the morning, and I was whisked away to Sick Kids. After my surgery things became amazing! I could breathe, run, play! It was truly wonderful! My life was no longer on pause and this allowed me to grow up! I got to meet my beautiful wife and become a father to her daughter. At the time, I was only taking anti-rejection medication, which wasn’t too bad (besides my face being swollen from prednisone!). After thirteen amazing years post-transplant, I developed a cough. After a few tests, the doctors found out that I suffered chronic rejection. This was heart-breaking and terrifying! I was so happy and my life was going to slip away right through my fingers. But then the doctor gave me a glimmer of hope as I was told they could do a re-transplantation. This thought was scary, but it was something. I would be able to keep my family; my life wasn’t over. Shortly after, my wife and I decided to try and have a child. I was already a father to a little girl that may not have been mine by blood, but she was, and still is, a huge light in my life. So why stop living? A few months later, we were blessed with a son! Throughout my wife’s pregnancy however, I got worse. Every day it was getting harder and harder for me to breathe, but when I saw my son, I forgot about it all. He was perfect, and just one more reason I had to survive! My wife and I also got married during this time. To see how beautiful she was walking down the aisle was incredible! She truly is my other half. While my life was moving forward, my health was getting incredibly bad. While you wait for your transplant, you have to do physiotherapy to stay as strong as possible and be able to recover fast after transplant. The exercise routine consists of lifting some light weights, stretching, and walking on a treadmill. By the end, I was barely doing five minutes on the treadmill and had difficulty walking up two or three steps. I used a walker and refused to use a wheelchair; I never wanted to go back in one again. My breathing was so bad that I was burning too many calories and was down from about 210 lb to 105 lb. Every breath I took reminded me of having PH again. It hurt so bad. Every minute of every day it hurt. After one false alarm, the day finally came and I got my new new lungs on September 22, 2014! Twelve days in the hospital and I got to go home. I pushed hard and recovered fast. I am now healthy and able to breathe once again and I will never forget how lucky I am. I love my life! I am extremely thankful to both my donors. Organ donation is incredible! I get to be a dad, husband, son, and friend. What I would tell other PH patients is that it will get better. Transplant is a frustrating thing, but it is so worth it! Listen to your body.

Living Life Without Regrets: Lessons Learned from Transplant

Jamie Kretzschmar, living with PH since 2009, transplant recipient 2012, Ottawa, ON

2016 Connections feature article

I was diagnosed with pulmonary hypertension around 2009, when I was twenty-three years old and living in Oshawa, Ontario. I was diagnosed very late and, as a result, I was diagnosed with stage IV PH associated with left-sided heart disease. As with most individuals diagnosed with PH, the four years that I had the disease were riddled with complications. I started on Tracleer®, which I took for the first six months after diagnosis, but unfortunately it did not work for me, so doctors switched me over to Remodulin®. Remodulin® was not covered by the government of Ontario for patients whose pulmonary hypertension is caused by a heart murmur, and United Therapeutics provided the medication on a compassionate basis—their the Executive Director became one of my heroes. I was on the subcutaneous version for about a year, but unfortunately as my illness progressed, my body began to reject that form of medication delivery. As a result, I was always in pain, I could never find a proper site for the medication, and my skin hardened so it was impossible to have a site last for longer than a day or two. For these reasons I started receiving Remodulin® intravenously. Intravenous Remodulin® is a wonderful and dangerous drug. Within two days of switching over I felt immediately better, but within three weeks, a clot broke off my Hickman line, which caused a heart attack. This occurred one month before I moved to Ottawa, Ontario, and caused no small amount of grief for my family. After moving to Ottawa, my symptoms continued to worsen, but my ability to deny the severity of my illness knew no bounds. After just six months of living in Ottawa, while waiting to get my Hickman line replaced, I started to get major chest pains and ended up texting Ottawa PH Clinic nurse Carolyn Pugliese, who urgently told me to go to the emergency room. After running a few errands and stopping by my school, I checked into the hospital. I was almost immediately flown to Toronto General Hospital, where I was told I had 48 hours to live if I didn’t get a transplant. Amazingly, I was transplanted shortly after, on January 26, 2012. Being so sick when I made it to Toronto General Hospital and not having time on my side, doctors feared that I would crash, so I was heavily sedated and not allowed to move. I wasn’t completely aware of what was going on because of the sedation so my spouse ended up signing my transplant consent form. When I became lucid again, I felt incredibly guilty and started attending transplant support meetings. I had been denying how sick I was for so long, that when I finally did get listed, I was listed at the very top, whereas many others had waited years to get their transplant. On the 25th of January, I vaguely remember a lot of buzzing around the hospital, which seemed odd to me. Eventually a nurse came in and told me that they possibly had lungs available for me. I was obviously quite excited and asked her to inform my spouse and my parents. The hospital called them around 10 p.m. and they all came rushing over from the hotel next door. I was also told throughout the night by many different staff members to not get my hopes up because they often had “dry runs.” Amazingly however, the lungs were perfect for me and, after what felt like the longest wait of my life, I went into the operating room and was put under. The recovery process in the actual hospital was brutal. It was the hardest and most surreal time of my life. I hallucinated badly for the first three weeks. I was allergic to the medication that is generally used to calm a person’s hallucinations, and was paralyzed for three days. I was so out of sorts that the nurse who was on duty called my wife at 11 p.m. and asked her to come the hospital to calm me down because she thought I was going to hurt myself. Amy sang to me, which was the only way I became semi-normal again. It also took me a very long time to be able to breathe on my own and, as a result, I was diagnosed with ventilator-induced pneumonia. While in the hospital, I coded because secretion was stuck in my ventilator. I actually pulled out the ventilator while I was sleeping because it was bothering me so much and, when I finally started breathing through a tracheostomy, I was unable to eat or talk, and remained that way for almost the entire six weeks I was in the hospital. After leaving the hospital I soared in terms of health. I had forgotten what it was like to be able to breathe and spent the first six months walking, biking, and living life. I got a bit too brash unfortunately and thought I could do anything without getting sick. I was wrong on this point and ended up getting pneumonia again, which catapulted me going into chronic rejection and losing 40 % of my lung function. I learned quickly that the way to live with a transplant is to aim for everything to be as sterile as possible. I started working from home and learned to have fun and keep it simple. I can live an almost completely normal life without sacrificing anything as long as I make sure to adapt to my new normal. Transplant has changed my life in so many positive and amazing ways. The fact that I wasn’t supposed to live past 2012 is reason enough to be thankful. I have adapted to my new “sterile” life and am currently working and going to school from home. My wife and I adopted a dog named Wally and he and our other animals are the light of our existence. I keep up my exercise by walking him in the forest five kilometers every day. I really can’t overstate the importance of watching out for germs because every time someone near me gets a cold, I end up in the emergency room. I would tell a person considering being listed for transplant that they have to do what is right for them. I personally had a great experience with my transplant, but I have also had two friends pass away from complications after transplant. The most important thing to do is listen to your PH team and, when they think it is time for surgery, you have to really listen and decide if it is a journey you would like to embark on. The individual should learn the pros and cons of the surgery, the medications, and the lifestyle they will live post-transplant. Again, I was really lucky with my transplant, and personally would encourage anyone to safely go through the process, but it is an individual decision that should be made on a case-by-case basis.

Shoot to Score: Braden’s Transplant Story

Jennifer Gendron, PH caregiver, Hampton, NB

2016 Connections feature article

I have been involved with the PH community since 2003 when my oldest son, Braden, who was five years old at the time, was diagnosed with idiopathic pulmonary arterial hypertension, after years of unexplained health problems. Looking back, Braden exhibited symptoms of PH early on; however, they were so subtle that diagnosis took several years. He was initially diagnosed with asthma but his health continued to decline to the point where he experienced some heart failure, which led to his diagnosis of PH in September of 2003. He struggled with the disease for a number of years after that time and went through a variety of treatments, beginning with sildenafil, followed by the addition of Tracleer®, and then eventually Flolan® in January of 2008. After a bout with pneumonia later that year, his health deteriorated to the point that transplant assessment became necessary. We travelled to Toronto in June of 2009 for the assessment and it was determined that he would be a good candidate for the surgery. At that point, since we lived in New Brunswick, we were required to relocate to Toronto before he could be listed for transplant. In August of 2009, we packed up our entire family, including our two younger boys and our two dogs, and made the temporary move. We were incredibly lucky with the waiting process, as Braden had been listed for barely a month when we received the call. It was a shock to all of us to get the call that quickly and we were all very scared and nervous, and wondered if we had made the right decision. This was the hardest decision we have ever had to make and we were all terrified of what would happen next. We were actually at a Leafs game in downtown Toronto when we got the call! We had been brought there by a local union who had heard of Braden’s story. They were very good to us and helped us get to the hospital. My husband Dan had family in the area and they looked after our two younger boys while we rushed to the hospital to await the surgery. It took several hours after the call came in to find out if the lungs were suitable and it was the wee hours of the morning before we got final confirmation that the surgery would take place. Braden’s life has been completely transformed since the surgery. He has been able to do things we would never have dreamed possible for him. Within a few weeks of surgery, Braden was rollerblading with his brothers! Within just a few months of the surgery, he was playing hockey (which terrified me but he had been begging the doctors to let him play from the day he could stand!), and he has just continued on from there! He has continued to try new things and live life to the fullest from the day he came out of surgery. His first words to me when they took out his tubes were “I told you I could do it!”... and boy was he right! There have been many challenging moments along the way. Making the decision of whether or not to go ahead and list him for transplant was the hardest one of all. It was the scariest decision we have ever had to make because, knowing that there was so much risk involved with the surgery, we knew we were taking a gamble. From a purely logistical standpoint, we faced challenges specific to the pediatric transplant process, such as determining how much involvement to give a child in making the decision. There were also difficulties associated with the actual listing and in our case, being forced to move away from our home because we did not have access to the required services while having two other children was particularly challenging. I would like to tell parents of a child with PH being assessed for transplant that this experience was definitely a positive one for our family and I would encourage them to investigate it fully. Transplant is certainly not for everyone however. The process of evaluation is very thorough from both a physical and mental health standpoint and, by the end, you will know if it is a good fit for your family. Trust your instincts and watch for signals from your child. In our case, Braden’s response to the whole process showed us we were making the right decision so we trusted it and took the step forward. When Braden was initially diagnosed with PH back in 2003, there were little to no resources available in our area. We were given an extremely poor prognosis and found little help or support, so I went searching for it and found the Pulmonary Hypertension Association (PHA) in the U.S. and attended a conference in Miami, Florida the summer following Braden’s diagnosis. From there, I found an entire community of support and so much hope for Braden’s future. I connected with Liz McCall who had founded the British Columbia Pulmonary Hypertension Society (BCPHS) on the opposite side of the country and with Liz’s help I went on to found the New Brunswick Pulmonary Hypertension Society (NBPHS) to connect with others from our area and create a support network. We worked with Liz and many others throughout Canada to bring together a strong group from across the country and eventually went on to found PHA Canada. I have remained involved since that time in many different roles: sitting on the Board of Directors, working briefly as Regional Coordinator, and now once again sitting on the Board as a Founding Director. In recent years, I have also become very actively involved with the Canadian Transplant Association (CTA) and in raising awareness about the importance of organ donation. I have recently taken a seat on the Board of Directors of the Atlantic Chapter of the CTA and am actively involved in organizing events, such as the “Transplant Trot,” which promote organ and tissue donation awareness.

What do pulmonary hypertension patients have to say about transplant?

Side by Side in Hardship: Transplantation is a Journey for Two

Valérie Plouffe, PH caregiver, Gatineau, QC

2016 Connections feature article

My partner, Francisco, was diagnosed with pulmonary hypertension in 2010. He began experiencing symptoms of this degenerative disease in 2009 and it took a year before he received a proper diagnosis. Everything changed in our life at that moment. At the time, he was treated for right-heart failure and, after several hospitalizations at the Hull Hospital, he was finally transferred to the Jewish General Hospital in Montreal for more advanced tests. This is where we learned the bad news. Initially, when the doctor told me that my partner was suffering from PH, I did not know what it was. This disease is so rare that few people know about it. However, when I learned of all the implications of the disease, my world collapsed and I was devastated. The doctor explained to me that even with the drugs, the disease would continue to progress and as a last resort, Francisco would need a lung transplant. His life expectancy then was between four and six years. Learning to live with PH was difficult, both for him and for me. Our lifestyle changed completely. Physical activities and family walks, those were over for us. The disease was about to take away what is most essential to Francisco’s life: breathing. Seeing my partner always sick and losing his breath at the slightest effort made me feel helpless. It was a difficult reality to live with and I often had to hide so he wouldn’t see me cry in front of him. He often had to be hospitalized and the idea that I could lose him at any moment was very stressful. I was overcome by fear. The children asked me a lot of questions because they saw that their father was not in very good condition. In order not to worry them, I simply told them that he was suffering from a nasty flu. During my experience as a caregiver, there was a particularly touching moment. It was December 2015, and Francisco was then hospitalized at the Ottawa General Hospital. When I went to see him, he was very ill and the doctors told me that he had reached the last stage of the disease and could leave us at any time. He took my hand and said: “Do not worry, everything will be fine. I’ll get through it. I will stay strong for the kids and for you. I refuse to let myself go.” These words touched me deeply. It was a hard and very painful moment. But on the other hand, it was wonderful to see his strength and his will to fight in order to survive. The best part is that he was right. Francisco received a lung transplant on January 5, 2016. Before receiving his transplant, he was connected to an ECMO machine, which provides oxygenation through an extracorporeal membrane. This machine kept him alive because the oxygen level in his blood was very low and he had trouble breathing by himself. Transplant became his only option to survive and we had to fill out consent forms to start the process. We are residents of Gatineau, where there is no lung transplantation program, so my partner had to be relocated to Toronto to wait, receive, and recover from his lung transplant. We were separated for three months, during which I had to learn to live differently and manage my loneliness because normally we are inseparable. However, the most difficult thing was to see my children, who were eight and five at the time, suffer from his absence. Even though we talked to him every day via teleconference, they asked me regularly when Daddy would come back home. At their age, they had no sense of time and three months for them could seem like only a few days. I was very moved when I learned that lungs were available for Francisco. I was surprised and happy, and I jumped around like a child. My partner was admitted to Toronto General Hospital on December 28, 2015 and I got the news the morning of January 5th. For me, it was a miracle; he finally had two good lungs in perfect health! A precious gift of life. Throughout this ordeal, I was surrounded by my family and friends, this is what helped me get through it. I must particularly thank my sister-in-law, Tanya, and my brother-in-law, Roberto, who greatly helped and supported us. I was lucky to receive a lot of moral support and encouragement from them. Without their help, it would have been much more painful. Talking to my partner every day and learning of his progress also gave me the strength to move forward and smile along this journey. To a family in a situation similar to ours, I would say to not get discouraged and stay strong! We must never lose hope. I also believe that it is important to educate people to sign their card for organ donation, because life is the biggest gift we can give. It is thanks to Francisco’s transplant that a new life began for us. His health now allows him to live a normal life. We resumed a few of our activities such as taking walks and doing other exercises. He can finally be active without suffering from breathing difficulties. What a change! We are enjoying life to the fullest and are making plans for the future. This ordeal has brought us closer than ever and we want to get married. My partner will resume his studies and eventually return to work. We would like to travel and enjoy all the beautiful moments of life. It is so important.

It Takes a Village: A Community Coming Together to Support a PHighter in Need

Carson King, supporter and community leader, Grand Falls-Windsor, NL

2016 Connections feature article

Wendy King, a PH patient from Grand Falls-Windsor, Newfoundland, received a double lung transplant on July 20, 2016 in Toronto, where she had to relocate to be listed for the surgery. The relocation put financial strain on Wendy’s family as she and her husband had to move close to two-thousand kilometers away from home to be within reach of one of the few hospitals in Canada where lung transplants are done. Thankfully, they have benefitted from incredible support from their community, which has taken on the challenge of ensuring the King family is able to get through these difficult times. Wendy’s father-in-law, Carson King, shares insight into the community fundraising efforts he has spearheaded. I knew Wendy long before she was diagnosed. She was very active and seemed to never run out of energy, both in her teaching career and lifestyle. She worked many hours beyond what was required of her at school, was active bicycling, walking, and swimming, and had lots of energy to take care of her son Kenneth. When she was first diagnosed, I didn’t know enough about the disease to understand how serious it was. I knew she was having issues and had to alter her routine to go to doctor appointments, but I didn’t realize how ill she was. It is only after I researched the disease that I understood how serious it is and realized that not many people know of PH, including medical professionals. I became involved in raising funds to support Wendy’s relocation because I knew that it would be a financial burden on her and my son Stephen. They couldn’t possibly finance the move with the resources they had. By the time we learned they would be going to Toronto, Wendy had already given up her job due to her illness. Stephen then also had to give up his work to be her primary caregiver and support person in Toronto. This meant that, in addition to their regular financial obligations, including a mortgage and care of their seven-year-old son, they also had to face extra costs associated with moving to Toronto without the safety net of their salaries. I had heard of a number of individuals and groups wanting to hold fundraisers to help Wendy and Stephen, among them many of their friends and past co-workers. I decided to invite a number of those interested individuals to form a committee to discuss fundraising activities and to pool our efforts to make sure everyone was on the same page and events would not conflict. The committee held its first meeting early in February of 2016 and has since actively initiated or approved multiple fundraising events. From the beginning, we set out to get media exposure, raise awareness of the disease, and start raising money for the cause, which we named “Wendy’s PH Journey.” Acting as the committee chair, my role has mainly been to provide support to the many individuals and groups who have come together for Wendy and Stephen. The community has been amazing and my job has been made easier by the fantastic support of the communities of Grand Falls-Windsor and the Exploits Valley Region. To date, many fundraisers have been held and through our collective efforts we have raised over $40,000 to support Wendy and Stephen’s transplant journey. We held our first major fundraiser one month after the committee was formed and the success of this “dinner and dance event” went beyond our expectations! The support was phenomenal and tickets sold out fast—there was even a wait list! It was an amazing night. The venue was decorated using different shades of purple, several local bands volunteered their time and talent to provide music for the dance, a local photographer offered his services for individual or group photos during the evening, raffles were organized, and PH and transplant awareness information was distributed. This was a great example of how community efforts can come together to raise over $12,000 in one night! Other fundraisers that took place in the last months include: a “Trek to Toronto” stationary bike-o-thon held at a fitness centre, which Stephen and Wendy were members of; an Easter egg hunt that families in Grand Falls-Windsor took part in; another “dinner and dance” event organized in a neighbouring community during Organ Donation Awareness Week; a live auction; a zumba fundraiser; and a talent show at the school where Wendy taught. The committee has also taken the initiative of placing donation jars in local businesses and selling purple t-shirts designed by Wendy and purple bracelets. There is no magic formula for fundraising, but the tips I can give are: use a variety of sources, never turn down a kind offer, pull from local resources (including service organizations and people who can donate their time and talent), and start with a positive approach from the very beginning. It’s also important to acknowledge and be thankful of people’s generosity and to get the local media involved in promotion. While raising awareness for the cause and the condition, it’s important to make sure people understand both the medical and financial implications because many people don’t realize the enormous costs of relocating for medical reasons. Most of all, good organization and public relations are key. Letting people know how successful an event was is a good way to thank people for their efforts. It’s also important to keep the community aware of the patient’s progress. When Wendy finally moved to Toronto, the community didn’t give up. People know that she and Stephen are still waiting for the next stage in their journey so we try to keep them informed. It can be devastating for families to find themselves in a situation like Wendy and Stephen’s. Giving up your employment, your home, and the things you worked for can reduce your will to fight and make things seem hopeless. I am sure that, at times, they felt that way, but the support of friends and hope for a return to a more normal life can also create the will to combat all odds. Wendy bravely set out on this journey because she wanted to be able to ride her bicycle again. She might even dare to hope to return to her teaching job, which she loved. She has faced adversity with the positive ambition that she could return to a “normal life” and my advice to anyone in a similar situation is to have that same outlook. Be an advocate for your health and seek whatever help you can—in Wendy’s case a double lung transplant—and look to your family and friends to help make it happen. My hope is that Wendy recovers well from her double lung transplant. Like many in the community, I am looking forward to her return to Grand Falls-Windsor and to the family being able to settle back into “normal life.” Wendy and Stephen are so well-loved by friends and colleagues and it is my hope that they will soon be home, close to their family and friends, and that we can help them start over.

What do caregivers have to say about transplant?

Pulmonary Rehabilitation in Lung Transplant Candidates with PAH

2026 Connections research update article

Contributed by: Robyn Kalda, Manager, Research & Policy

Reviewed by: Dr. Rhea Varughese, University of Alberta Pulmonary Hypertension Program, Edmonton, AB

Maha Munawar, Lisa Wickerson, Chaya Gottesman, Aislinn Braun, Sahar Nourouzpour, Marc de Perrot, Lianne G. Singer, Shaf Keshavjee, John Granton, and Dmitry Rozenberg. Pulmonary rehabilitation in lung transplant candidates with pulmonary arterial hypertension. Respiratory Medicine 2024, 234:107816. Background. We know supervised exercise training is safe and effective for people with mild or moderate pulmonary arterial hypertension (PAH), and we know that pre-transplant exercise capacity is associated with better outcomes and shorter hospital stays after lung transplants. But is pulmonary rehabilitation safe and effective for lung transplant candidates who have severe PAH? This study looked at how pulmonary rehabilitation affected people with severe PAH who were listed for lung transplants. Findings. Researchers studied 40 lung transplant candidates with PAH who attended a mandatory supervised outpatient pulmonary rehabilitation program three times per week for 90 minutes while awaiting transplants. These exercise sessions involved aerobic exercise on a treadmill or stationary bike and weight training for both upper body and lower body muscles. Participants increased their six-minute walk distance (6MWD) by an average of 18 metres while they were waiting (half waited more than 225 days, half for fewer) for a transplant. Measures of oxygen uptake, muscle volume, and the amount of oxygen people were able to use when exercising compared to the oxygen they used when sitting still all showed small but significant improvements. Measures for shortness of breath and leg fatigue did not change. Most participants’ hearts remained unable to fully compensate for exercise and participants were unable to increase their heart rates enough with exercise. There were no major safety incidents related to the exercise training. Implications. This study established that participants listed for lung transplant and who participated in pulmonary rehabilitation safely maintained or improved their exercise capacity despite the significant symptoms associated with severe pulmonary arterial hypertension. A 6MWD increase of 18 metres was not statistically relevant. However, other studies found decreases in 6MWD in similar participants over shorter time periods, so researchers in this study felt that participants ability to maintain their 6MWD while awaiting transplant was positive. Future studies should look at post-transplant outcomes. They should also examine at-home and hybrid exercise programs as well as in-person programs and should look at the best ways for participants to resume pulmonary rehabilitation after a hospitalization.

Lung Transplant Outcomes in Patients with Groups 2 & 3 Pulmonary Hypertension

2026 Connections research update

Contributed by: Robyn Kalda, Manager, Research & Policy

Reviewed by: Dr. Rhea Varughese, University of Alberta Pulmonary Hypertension Program, Edmonton, Alberta

Mora-Cuesta, V. M., Martínez-Meñaca, A., Iturbe-Fernández, D., Tello-Mena, S., Izquierdo-Cuervo, S., García-Camarero, T., Gil-Ongay, A., Alonso-Lecue, P., Cifrián-Martínez, J. M., Rodríguez-Chiaradia, D. A., Escribano-Subías, P., & Barreiro, E. (2025). Lung transplant outcomes in patients with preoperative catheterization indicating Group 2 pulmonary hypertension. Pulmonary circulation, 15(2), e70107. https:// doi.org/10.1002/pul2.70107 Background. In recent years, better survival after lung transplantation has led to more flexible transplant criteria. Transplant patients are now older and more likely to have conditions such as pulmonary hypertension (PH). This study looked at 412 transplant patients from one hospital in Spain to see how many had Group 2 PH (pulmonary hypertension associated with left-sided heart disease), Group 3 PH, (pulmonary hypertension associated with lung disease) or no PH, and to compare how the various groups did during and after their lung transplants. Findings. About one in ten of the transplant patients had Group 2 PH. About six in ten had Group 3 PH, about a quarter did not have pulmonary hypertension, and a few were excluded from the study because they had other conditions (including pulmonary arterial hypertension). There were no significant differences in outcomes among the Group 2 PH, Group 3 PH, and no-PH groups. During the transplant surgeries, patients in the three different groups had similar complication rates. After their transplants, they had similar rejection rates, needed additional surgery, diuretics, or other interventions in similar proportions; and spent about the same length of time on ventilation, in ICU, and in the hospital in total. Most importantly, there were no significant difference in long-term survival after transplant. Because this study looked at patients who had already had lung transplants, the researchers noted that many patients who might have done poorly after transplant were already excluded. They also noted that it is possible that Group 2 PH patients who also show signs of Group 3 PH might not do as well. Implications. Previously, there was little information about Group 2 PH and lung transplantation, but it was thought that Group 2 PH patients had worse outcomes after transplant. This study’s patients are highly selected as they received lung transplants; it is uncertain how these results would reflect on those with more severe Group 2 PH and Group 3 PH. This study’s results might help guide future research. More practically, it provides useful information for assessing potential transplant patients with Group 2 PH: mild Group 2 PH may not need to be a contraindication for lung transplant.

Research on pulmonary hypertension and transplant

Supports

TGH Lung Transplant Support Group

https://www.facebook.com/groups/Support4LungTXatToronto

For more general pulmonary hypertension supports, including supports for caregivers, see our Support List
https://www.phacanada.ca/support

Transplant

Does everyone with pulmonary hypertension need a transplant?

When is transplant discussed?

How do patients react?

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What happens during transplant assessment?

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What happens if someone is approved?

What is life on the waiting list like?

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What happens during surgery?

What does life look like after transplant?

Lung Transplant and PH: The Basics

Videos

PHighting for Time: Why I’m Not Ready for New Lungs Just Yet

What do pulmonary hypertension patients have to say about transplant?

Side by Side in Hardship: Transplantation is a Journey for Two

What do caregivers have to say about transplant?

Pulmonary Rehabilitation in Lung Transplant Candidates with PAH

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Research on pulmonary hypertension and transplant

Supports