What’s the Best Support Program for You

HOLLY SZMUTKO of Valparaiso, Indiana, received a double-lung transplant in May 2021. She shares her transplant journey as she celebrates one year with new lungs.

Breathing Easier With New Lungs

Holly Szmutko celebrates the anniversary of her transplant.

BY HOLLY SZMUTKO

Before my transplant, I physically felt awful. I was on a portable ventilator that was giving me a lot of oxygen. My health was poor, and I found it difficult to do anything. I received my COVID-19 vaccines prior to transplant, and I was anxious to get the call for my new lungs. I wanted to feel better, and I wanted to get rid of the portable ventilator. Recovery from a double-lung transplant is tough. I can’t express how important it is to keep your body as strong as you can. I did a lot of home physical therapy to keep my muscles strong. It helped in the healing process. The first year has been full of ups and downs. I have had several roadblocks, including acute cellular rejection, when cells of the immune system attack the donor lungs. I didn’t have rejection symptoms, but the rejection showed up on the biopsy from the bronchoscopy. For three days, I received high doses of IV steroids. During that time, I was on insulin and had to add another blood pressure pill. I also had a sternal plate inserted to permanently hold my bones together. That was a painful surgery.

I’ve also had gastrointestinal, medication intolerance, esophageal and sickness issues, as well as blood transfusions. My esophagus was severely inflamed and I had to have a hernia repair. I also needed surgery to remove a hematoma, or blood that pools outside the blood vessels, after the transplant. When you’re immunocompromised, surgeries can be hard. I had pneumonia early on, which was tough. I often was in the hospital and emergency room.

POSITIVE OUTLOOK Honestly, I just roll with the punches and do whatever it takes. Despite all the challenges, my spirit remains positive. I have overcome most of the issues, including the rejection.

The best part of having a transplant is breathing with no assistance. I was off oxygen immediately, but it made me nervous. So I stayed on one to two liters for a few days to wean off.

Holly meets with former Rep. Pete Visclosky (D-Ind.). Holly receives her first COVID-19 vaccine before her transplant surgery.

I sometimes feel like I should still have that oxygen, but I don’t need it. My oxygen saturation stays in the upper 90s.

It was weird at first. It took me a day or two getting used to breathing with the new lungs. I often breathe deep because I can. It feels good!

I wish I knew who my donor was. I cannot express the thanks that I feel toward them. I hope to be in contact with their family one day, but I won’t pressure them. I sent a letter and hope to hear back one day. They lost someone they loved for me to be here. I know that they know how thankful I am for my gift of life.

STAYING HEALTHY I adhere to restrictions, medications and overall wellness. I didn’t get this transplant to ruin it; I got this transplant to live life and honor my donor.

Donor Profile:

Supporting Research and Awareness

MIKE LENTZ of Ponte Vedra Beach, Florida, became involved in the Pulmonary Hypertension Association (PHA) after his wife Maureen’s death. He raises money, participates in support groups and serves on the PHA Finance and Development committees.

BY MIKE LENTZ

PHA has become a passion for me. For a long time, I was looking for something to really get involved with. In the past, I had always been busy with work, raising a family, travel, etc.

As I enter the later years in life, I have a little more time on my hands. After watching what my wife Maureen went through for five and a half years, and ultimately losing her, I made my choice to make PHA my primary mission.

Although I have twice survived cancer, it’s different when you lose someone you love to a disease such as PH. I support PHA with my time and money because there are so many unanswered questions about PH. If my children choose to support cancer research in my honor in the future, that is their choice, but I have settled on PHA.

My wife Maureen was diagnosed with idiopathic pulmonary hypertension (PH) in 2012. In hindsight, Maureen had earlier signs of PH; we just didn’t know it. We had several discussions with our medical team to try to determine the root of the issue as there were no known hereditary issues or inherent causes. None were ever identified.

Maureen went from being a high-energy, fun-loving person to someone who had difficulty taking a breath.

When Maureen was eventually put on oxygen, we thought that life was over. We had to get used to having the oxygenator in our room running every night, but it soon became a way of life for us. We loved to travel, so taking eight extra portable oxygenator batteries for overnight flights to Ireland became normal for us.

We were determined to live life as normally as possible while adjusting to the new things we needed to do for her health. We did that, but on December 20, 2017, Maureen passed away. We scattered her ashes along the beach in Ireland we loved so much. PH stole my partner of 36 years and the mother of my two children.

The Pulmonary Hypertension Association (PHA) has helped me in my grief by introducing me to wonderful people, including those with the Jacksonville Support Group. For the past four years, I have been very involved with the group, which supports patients and caregivers.

I also became involved with PHA’s monthly bereavement telephone support group. I offer my perspective and experience as a caregiver. In 2019, I attended a PHA Board of Trustees meeting in Washington, D.C. I met several board members, as well as doctors and nurses who focus on PH, and patients. As a member of PHA’s that I can play a part in the research and development of a cure for PH, as well as raising awareness.

My hope is that perhaps someone in the future will not have to go through what Maureen did. I will never, ever forget Maureen or quit thinking about her. It is my life mission to do what I can, whether it’s through donations, being on boards or being a good support group member.

I want to help others fight this dreadful disease. If we can make some inroads on a cure, or continue the journey of extending lives, and I can play a part in that process, I will consider my involvement with PHA a success.

The Lentz family at Chihully Gardens in Seattle in September 2016. Above: Mike, Conner and McKenzie at the British Open in Portrush, Northern Ireland, in July 2019. Below: Colleen Brunetti, Matt Granato and Mike at PHA 2022.

Finance and Development committees, I work with PHA leadership on budgets, finance and awareness.

My contributions are small compared to the big picture of what is necessary. But my volunteerism and donations give me great pleasure and peace. I know

Help continue PHA’s critical work to provide patient support and services and fund PH research. PHAssociation.org/donate