Alena’s journey transcends ordinary resilience. After battling pulmonary hypertension for a decade, surviving two double lung transplants, and undergoing over 200 photopheresis sessions, she now embraces life with just 34% lung function—yet lives it fully. Her story bridges cultures, identities, and the profound gift of donated organs. As she marks 11 years since her first transplant, Alena shares not just a medical journey, but a testament to possibility and gratitude that speaks to anyone facing uncertainty. “Knowing you have possibilities is a luxury,” she reminds us, offering wisdom earned through extraordinary challenges.
What follows is a text she wrote recently on her LinkedIn page for her 11th second lung transplant anniversary. Check out Alena’s talk for our PEP (Patients Empowering Patients) program at this link
11 Years. 2 Double Lung Transplants. 200+ photopheresis Sessions. 10 Years with Pulmonary Hypertension.
Yesterday marked my 11 th year since my first double lung transplant ..
Still breathing. Still grateful…
I often describe myself like this:
Not of one place, not of one body
A witness to the quiet miracle of existence..
And it’s true, my body is a blend of recycled beautiful lungs from other precious donors.
Born into both Arabic and European cultures totally proud of, my life has always been a blend of identities, of conditions, of unexpected chances.
My motto is Knowing you have possibilities is a luxury.
After a decade with pulmonary hypertension and right heart failure, I had my first double lung transplant in Vienna in 2014, and my second in 2017.
What followed: Bronchiolitis Obliterans (BOS), Chronic Lung Allograft Dysfunction (CLAD), and now, life with 30–34% lung function.
Low lung function yes but yet FULL life function…
Photopheresis, a therapy few know, became my sanctuary. Over 200 cycles later, it still carries me gently, giving me time, balance, and breath.
To those who made this journey possible:
To my donor families thank you for this breath.
To my husband and daughter and my family you are my anchor and my why I’m still around ..
To AKH Vienna, especially Prof. Clemens Aigner, Prof. Peter Jaksch and the devoted nurses and doctors, your care shaped my survival.. thank you from my heart ..
To my pulmonary hypertension team in Giessen, Prof. Werner Seeger and Prof. Ardeschir Ghofrani, thank you for walking beside me from the start at a time I thought I had only six months to live.
To my medical support in Abu Dhabi , your care continues to hold me steady when I’m there..
To the Alliance for Pulmonary Hypertension and dear Pisana Ferrari, thank you for giving me voice, purpose, and a lovely community rooted in advocacy for pulmonary hypertension..
And to every lonely moment, I thank you because you held me beautifully. You made me know myself and the precious gifts inside my body..
The warmth of my doctors and nurses, you made even the most clinical settings and the machines feel like home, my sanctuary ..
To anyone navigating illness, uncertainty, or recovery: you are not alone. There is breath after fear. There is life beyond survival.
The advice I give with full heart is to embrace whatever comes your way,even pain… let it be.
With all my heart,
Alena
