Life after a lung transplant

published in Reader's Digest,
05 April 2019

link to Reader's Digest article

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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. Here’s her inspirational interview.

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 between 17% and 21% 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 a quiet, small life there were wonderful things, especially the perspective on life and the strength of faith that it gave me.

Tell us about the 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 and started to head back. I phoned my Dad to let him know and suddenly became overwhelmed by the whole thing 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?

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.

I kept asking if I really had new lungs.

What helped most in 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 incision across the whole chest which obviously 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 went up and down between being very well and various things going wrong. Five weeks after 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 which knowledge makes an enormous difference.

Life is now wonderfully ordinary.

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, 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.