Patient spotlight: Ron Flewett

Can you tell us a bit about yourself and your background?

I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) in 2014. I was in my fifties and fit and active at the time. My doctors gave me a prognosis of three to five years to live. As the disease progressed, it was clear that my only chance of survival was a transplant. I knew it was a long shot. I had to pass the assessments and then join a waiting list. After a lot of consideration of all the factors involved in a transplant, I decided it was my best option. Following the assessment, I was put on the list in October 2021. Being on the waiting list was a difficult time. I was excited and anxious and often felt despair as time went by and my condition worsened. After almost two years, I finally received the call and last year, in 2023, I received a double lung transplant.

Can you tell us about your transplant and how your recovery is going?

A transplant is a complex operation. I was receiving two lungs. The first one went in without any issues but the second was more complicated and this caused issues with my heart. After 13 hours in surgery, I was moved to intensive care where I spent a further week. After being moved to a ward, I suffered another major complication when my sternum collapsed. This resulted in more surgery and more time spent in intensive care. During this time, I kept my focus on returning home to live a life with my family without the restrictions I had previously faced. This kept me pushing through. I also thought of my donor, and their family, and the wonderful gift they had given me. On several occasions, I struggled to keep going but despite all this, now I can look back, and I know I would do it all again.

Why do you think sharing your story and advocacy work around transplantation is important?

Transplantation remains the only treatment option available to some people living with advanced lung conditions. For me, receiving the prognosis of 3-5 years to live was devastating. Although there are huge considerations and factors to consider with transplantation, it does represent the only treatment option for some people with certain conditions. And for those who experience a successful operation and recovery, it gives them an extra chance at life. Sharing stories about transplantation and raising awareness of the process is hugely important. It is right that people have as much knowledge and information as possible if they are considering transplantation. Peer learning is an important part of this as we can gain first-hand insight into the experience from those who have been through it. There are also huge differences in the availability of transplantation across Europe. By raising awareness of this disparity, we can advocate for change.

Is there anything that you want to highlight regarding transplantation?

It’s a tough journey being on the waiting list, both physically and mentally, with the worry of being taken off at any stage. When you finally get the call, it is a roller coaster of emotions, worry and strength and determination to get through the operation and recovery after.  But keep focussed on the fact that you have been given the gift of life extension.

Anything else you would like to add?

This journey is not one you can do alone; you need the strength and support of your loved ones, as your emotions and recovery impact you both. I believe it is harder for them as they witness it all. Remember, your loved one has gone through it as well but in a different way.