When the lungs were damaged
Over the years, lung damage began — a characteristic and one of the most dangerous manifestations of scleroderma. My lungs began to lose function, shortness of breath intensified, and simple everyday activities became an effort.
My doctors closely monitored the deterioration, and at some point came the moment I had feared: lung transplant was the only way forward. I had no choice — I needed to decide whether to enter the waiting list.
The decision was difficult. I was the mother of a small child, I knew how complex and dangerous the procedure was. But I also knew that without the transplant, I had no future.
"But I had something that held me — my child, my husband, the family that stood by me every moment."
The waiting
The period of waiting for a suitable lung was one of the hardest things I've ever experienced. You don't know when, you don't know if you'll see it. Every day connected to oxygen, every day with absolute uncertainty.
But I had something that held me — my child, my husband, the family that stood by me every moment. They were the reason to get up in the morning, the reason to keep going.
In September 2019 the phone rang. A suitable lung had been found.
The transplant and the new life
The transplant — a single lung — was successful. Recovery was long and challenging, but after weeks of rehabilitation, I did something I hadn't done in years: I took a deep breath.
The first "real" breath after the transplant — it's a moment I'll never forget. Just to breathe, without effort, without pain. In that moment I realized how much I had taken that breath for granted.
Within a short time I returned to normal life — to go out, to walk, to play with my child, to cook. Every small action felt like a gift.
A second child — in a way I didn't plan
After the transplant, I felt the desire to expand our family. But pregnancy after a lung transplant carries high risks. My doctors strongly advised against taking that risk.
So we opened a different path: surrogacy. The process was not easy — neither emotionally nor financially. But in July 2023 my second child was born.
To sit and hold him in my arms — it was the moment when I understood that life had won. That all the battles, all the fears, all the days of waiting — were worth that moment.
Giving back to the community — Transplant Mentors
Today, looking back, I want the people who are where I was — on the waiting list, in fear, in doubt — to know: there is life after transplant. Not just survival — a full life.
That's why I chose to join the "Transplant Mentors" program of the Linshom association — and to be the mentor I wish I had. I talk with transplant candidates, tell them about my experience, answer questions — and most importantly I say: "I'm living proof that this is possible."
This community — people who understand, who have been through it, who can hold your hand — changed my life. Mine and many others'.
"The right to live a family life, to love and be loved, to live many more years — is worth all the hardship along the way!"
— Roni Nir
