Celebrating 5 Years of Living After Heart and Double-Lung Transplant

Celebrating 5 Years of Living After Heart and Double-Lung Transplant

My son is celebrating a big transplant anniversary! Five years ago, on Aug. 7, 2014, he received a heart and double-lung transplant. This very rare surgery was completed within seven hours, and from what I was told, he was surviving on borrowed time.

The gift of organ donation had come not a moment too soon. The most miraculous words I have heard spoken are, “Surgery went well, with no complications, and the new heart and lungs are functioning beautifully!”

What was difficult but not surprising to hear was confirmation from the surgeon that pulmonary hypertension (PH) had severely ravaged my son’s old heart and lungs. In fact, his heart was barely functioning. As each transplant anniversary approaches, this is at the forefront of our thoughts. There are no words powerful enough to express the love and gratitude we feel toward his donor.

When I approached my son’s bedside after his surgery, I gasped at the sight of him. Surprisingly, I found myself oblivious to the many tubes, machines, and sounds, and instead was focused on his coloring. He had a long road of recovery ahead of him, but my first impression was that he looked healthier already.

Heavily sedated and still intubated five hours after transplant, my son did the unexpected — he woke up! Waking was not expected for a day or more, so even his nurse was startled. He touched his chest gently, and I knew, having experienced a “dry run” the month prior, that he was checking for proof that the transplant had happened.

“Yes,” I told him, “you received your new heart and lungs, and you are doing very well.” Despite the breathing tube, he smiled, lifted his arm into the air, and mouthed the word, “Yes!” As I comforted him, he received more sedation and drifted back to sleep.

The past five years of living without PH have been all that I had hoped for my son. Gone are the days of him gasping for air, clutching his chest in pain, and feeling constantly fatigued. Gone are the central line in his chest and the backpack that carried his IV Flolan and pump, the oxygen tanks and the days of mixing Flolan cartridges. Gone are the long hospital stays and scary emergencies.

But most importantly, he is not gone. My son is still with us, and there’s no greater blessing than that!

However, transplant recovery is not an easy road to travel, requiring a lot of self-care and responsibility on the part of the patient. Compliance is important. Currently, my son is taking 20 medications and following a strict regimen. Every month, he has important lab draws and appointments with several doctors.

He is cautious and wears a mask in public to prevent exposure to the elements, infection, and disease. He stays aware of how he feels, and vigilantly reports any changes to his medical team.

Recovery was challenging, and it took at least a year for us to appreciate fully the benefits of transplant. The first four months were especially painful. My son explains that it felt like his ribs had been cracked open — because, well, they had been.

He made sacrifices. The most emotional one was missing out on his freshman year of high school and having only the option of catching up through online classes. He was disappointed because he’d had the impression that, after four months of recovery, he would immediately start living the life he always wanted to have. In fact, the first year post-transplant is occupied with physical and mental healing, ongoing extensive medical care, and efforts to stave off rejection.

Organ recipients commonly experience some form of rejection, and my son was no exception. Thankfully, aggressive treatments have halted the progression, and for the most part, he is healthy and feeling great.

He also experienced unexpected challenges such as posterior reversible encephalopathy syndrome, a rare but serious side effect from an anti-rejection medication, which caused months of excruciating migraines and seizures. He had a cancer scare and was treated for a possible parasitic infection from the donor. We were relieved when extensive tests proved both to be false alarms.

The most painful experience has been watching three of his closest PH friends pass away after their transplants. Transplant is a gift of life, but there’s no guarantee of how long the recipient will have to enjoy this precious gift.

Knowing this, my son was incredibly grateful to receive his high school diploma in June. He’s had ups and downs in the past five years, but moments like that have made his transplant worth the fight. My son gives credit to his donor and the amazing surgeons, doctors, and nurses who have brought him this far — and, he emphasizes, “If I’m lucky, even further!”

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

6 comments

  1. Lois Tiernan says:

    Oh my gosh. Miracles do happen.
    But even though it’s been a miracle, the hard work, the suffering, the sacrifices you’ve made both for yourself and those coming after you is incredible. I am so in awe. Congratulations to Cullen and his wonderful family who have certainly traveled the road with him. Love admiration and prayers will continue to flow from my home to yours.
    Sincerely
    Lois

    • Colleen Steele says:

      Thank you so much, Lois! I know that you have continued to keep Cullen in your prayers and that means a lot to us. It is good friends and faith that have helped get us this far.

      • Ally says:

        Oh that’s such a great story and such a young fellow. This disease is horrible and I am usually the youngest person in the waiting room. They want me to have a double lung and possibly heart transplant but I just don’t think I can go through it. Brave little man you have there ❤️

        • Colleen Steele says:

          Thank you, Ally! He was 6 when he became symptomatic and 8 when diagnosed. At 14 he received his transplant and now as a 19 year old young man, may his story give people hope. I feel for you because this disease is rare, but even more so in young people and children. You are brave too! Keep PHighting!

  2. Aisha says:

    Celebrate! This is wonderful. I am just beginning my journey. I am at 4 months post surgery for my double lung and heart transplant. So much of your son’s story is familiar to me. I had 21 years with PH but wasn’t going to have any more years ahead of me without this transplant. You have no idea how much hope this gives me. I enjoy following your story and will forever pray for your son to continue with his new life and health. Blessings to you and the whole family because I know he isn’t doing it alone. None of us are, it’s not possible. I am grateful for everyday I have post surgery.

    • Colleen Steele says:

      Congratulations Aisha! May your recovery continue to go well! 4 months post-transplant is great progress and I hope you are starting to feel a difference in yourself now that you have a new heart and lungs. Thank you so much for leaving a comment. It makes me feel good when I hear that my son’s experiences are helping other people. I will keep you in my prayers as well!

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