My Sanctuary: A Story of 400 Sessions and Still Breathing
Today, I stand here not just to talk about a therapy, but about a journey. A quiet, and a life-affirming journey. A therapy that has become my rhythm, my ritual… my sanctuary. Photopheresis (or Extracorporeal Photopheresis – ECP). It’s a word many people haven’t heard before. It’s not loud. It doesn’t come with flashing lights or instant results as the name may imply. But for people like me, who live with CLAD, Chronic Lung Allograft Dysfunction class 3, it turned out to be a lifeline.
My name is Alena Adarbehova, 44 years old. I am a two-time double lung transplant recipient—first in 2014 and again in 2017. And a former primary pulmonary hypertension patient. A wife and a mother to lovely 21 old Yasmine. I began photopheresis treatment before my second lung transplant in 2017 due to end-stage Bronchiolitis Obliterans Syndrome (BOS) and humoral rejection.
Following the second lung transplant, my medical team at Vienna General Hospital (AKH), decided to restart photopheresis as a preventive measure, initially administering it once per month. However, after a significant decline in my lung function later diagnosed as Chronic Lung Allograft Dysfunction, the frequency was increased to twice monthly. At first, I didn’t know it would become such a companion. But today, I can say: I’ve completed over 200 cycles. That’s more than 400 sessions. And still counting (each cycle is 2 sessions in a row).
Each one of those sessions is a small ceremony to me. I go to the hospital, to the red station at the AKH. There, the nurses know me. They greet me with warmth. We smile, we chat, we share quiet nods — the kind that say: “we are here for you and for every patient” and that’s what makes the most clinical places warm and feels like home. Photopheresis is a medical treatment that modifies the immune response, used to treat certain immune-mediated conditions or complications after organ transplants (like lung rejection) in my case.
When the process begins my blood flows out usually through an IV to the machine. The white cells (lymphocytes) are gently filtered from the rest of the blood components, treated with a light-sensitive medication, exposed to UVA light, and then returned to my body. It’s like a soft message to my immune system: don’t fight, just live in harmony. I often joke that the cells are “brainwashed” in the most peaceful way :)) actually that is what immunomodulation looks like.
The process last around 3-4 hours, during which I don’t feel any pain, sometimes I read, sometimes I sleep or reflect … sometimes both hands are used. Photopheresis is considered safe and non toxic, one might face temporary fatigue, light sensitivity, or slight dizziness due to changes in blood pressure, but my body got used to it so usually I can leave the hospital and resume my daily life normally. It’s usually advised to drink plenty of fluids the day ahead, and avoid fatty meals. As for myself I treat myself with soup afterwards.
There’s science behind it, yes, but to me, photopheresis is more than that. It’s time and stillness. And a chance to breathe, to reflect, to feel gratitude for this body that has carried me through my journey. I live with chronic lung allograft dysfunction that started since 2019. And yet, physically, I’m doing great. I’ve stabilized. I walk. I move. I feel strong. And while the numbers may say I have low lung function I say, I have full life function. I wake up filled with gratitude for each second.
Photopheresis doesn’t promise miracles and isn’t a cure. But it’s a definitely a bridge and a support. A quiet protector. My lung function has been surprisingly stable since 5 years And even recently, I’ve seen some unexpected baby improvements, my FEV 1 varies between 30-34%. And after all these sessions, I can say something with confidence: this therapy works not just in numbers, but in how it makes me feel. It’s part of my life now. It’s part of my strength. Part of my story and in every session, I’m reminded that I’m still here. That something and someone is watching over me, that even in the most clinical spaces, there can be grace presented by the team and the nurses and the doctors.
To anyone going through uncertainty, anyone navigating transplant life, rejection, or rare therapies: you are not alone. There are treatments out there that may not be well-known, but they can make all the difference. Just like photopheresis did for me. And to my lungs, my recycled, beautiful lungs, I say thank you.
I’m deeply grateful to the Alliance for Pulmonary Hypertension for the opportunity to share my experience with photopheresis during this PEP Talk. Your platform amplifies voices like mine, and I hope it brings more light on this treatment.
A special thank you to my incredible medical team at the AKH in Vienna: your expertise, dedication, and relentless care made my journey through two lung transplants and photopheresis possible. You’ve given me not just time, but life. And to this therapy and sanctuary I say: I’ll see you again soon. Because every session just as every breath… is a gift.