Life after a lung transplant

Helen Cowan

We talk to one patient about their experience adjusting to life after a lung transplant

In 2017, Helen Cowan interviewed Ruth van den Broek, living with cystic fibrosis and waiting for a lung transplant. In 2018, she underwent lung transplant. 

Ruth van den Broek

 

How was life before the transplant?

Life before transplant was incredibly hard work. I was on supplemental oxygen all the time and my lungs functioned at just 17-21 per cent compared to that of a healthy person's lungs. Doing anything was a struggle, even walking across a room. Breathing was so difficult that it used part of my conscious mind all the time. When I stopped thinking about breathing, it would become shallower and my oxygen levels would drop. Because of that, I found anything that required concentration hard. My life was very dependent on others.

However, in my years of illness and living a quiet, small life there were wonderful things; especially my renewed perspective and the strength of faith that it gave me.

 

Tell us about the life-changing call

I got the call at 11.06am on Monday 10th September 2018. I was in our living room, using my phone when a number I recognised as being from Harefield Hospital flashed up. My first thought was along the lines of, “Oh, no, I really don't want this today!” I answered and I heard the voice of Colette, one of the transplant coordinators, telling me that they had lungs for me and asking when I could get to the hospital. David, my husband, works in various locations so I didn't know exactly where he was and how quickly he could get back. I called him and, thankfully, he was fairly close.

I phoned my Dad to let him know and suddenly became overwhelmed and burst into tears. Colette phoned again asking if I now knew where David was and therefore our ETA. I told her we would be there within two hours. 

 

How did you feel when you woke up from surgery?

Waking up in ICU is a vague memory. I remember being in quite a lot of pain and wanting David with me. Various members of my family came in and out of the room and I felt an incredible amount of love for them all. With regards to my lungs, I couldn't actually breathe very well and felt terrified that they would just stop working. They felt so foreign to my body, heavy and out of control. I kept asking if I really had new lungs. 

 

What helped most with your recovery? 

I had been on an antibiotic drip for a couple of weeks before the transplant and so was relatively well which helped enormously with recovery. I had an excellent surgeon, Fabio, who had performed the operation with two fairly small incisions rather than one large one across the whole chest—which meant there was less to heal.

The nurses and registrars were utterly amazing, offering a vast amount of support. My family were completely wonderful. They dropped everything to be with me and at least one of them was with me all the time. David, in particular, was unbelievably superb. He was with me the most, holding my hand, reading to me, helping me wash, helping me eat and take my medications and much more. The nurses kept telling me that they had rarely seen someone as devoted and loving as David. 

I had a fairly complicated recovery as I wavered between doing really well and various things going wrong. Five weeks after the transplant, I became very unwell and went onto palliative care. After a few days on palliative care, I made an astonishing recovery. I’m a Christian and I believe that God has been with me throughout it all—the knowledge of that makes an enormous difference. 

 

How is life now?

Life is now wonderfully ordinary. I'm living an almost ‘normal’ life. I still have medications to take and will do for the rest of my life but they are minimal compared to pre transplant. I can take our dog for a walk, run upstairs, be active for hours without stopping, have days out with friends and do all kinds of things I haven’t been able to do for 15 years. David and I recently went on our first holiday in four years. 

Even though I can do much more, I frequently take time to be still, reflect and just breathe. I don't want to lose the perspective on life or the quietness of soul which was such a gift during my illness.