“The words ‘thank you’ don’t feel enough for giving me my life back”
Catherine Makin from Lancashire had a double lung transplant in January 2020, five years after being diagnosed with pulmonary hypertension at the age of 32. Eight months on from her operation, she shared her story to mark Organ Donation Week 2020.
I was assessed for transplant in June 2015, a year after I was diagnosed. It was first mentioned six months earlier, and up until that point I didn’t have a clue that it could be an option, or something that might happen. It was very scary having that conversation. I wondered whether, if I had the operation, I would come out the other side.
I was listed for transplant in late summer 2015 and I had the operation in January 2020, so I waited a long time – but part of that was due to my decision not to accept the lungs of someone who had smoked.
In the months leading up to the transplant I was deteriorating rapidly. The decline began in June 2019, after years of being stable, and by December I was feeling pretty grim. I was breathless, tired, and started throwing up food every time I ate.
It’s hard to describe what Christmas last year was like. I knew I was getting more ill, but there was nothing I could do about it. It was upsetting. I knew then that a transplant would be my last chance.
By January, I was feeling so ill that I was on the verge of changing my mind about smoker’s lungs. But then the call came.
Unbelievably, my phone rang just as I walked through the doors of my specialist centre in Sheffield for a clinic appointment. Straight away, I was taken by ambulance to Wythenshawe Hospital in Manchester. I was panicking and very scared and anxious during the journey, but I knew I had to do it.
There was a nine-hour wait before I went down to theatre. I tried to stay calm, but even though my mum and dad were with me I couldn’t talk to them, or anybody, because I was so upset. I kept thinking that someone had to die for me to have their organs, so that I could live my life.
From what I’ve been told, everything went ok with the operation and it was successful. I was in hospital for five weeks and was discharged straight back home – I think it helped that I lived with my parents so they would be there to help me.
I was given a few things by the occupational therapy team, including a stool for the shower as the muscle wastage from being laid down for so long meant I wasn’t very good on my feet. I couldn’t lift my hands or arms above my head at that point, because of where the incision was on my chest.
I was given exercises to build my strength up and a community physio came out to see me too, but I was only able to have two sessions before lockdown.
That was a rough time and it did scare me. I was two months post-transplant and had only been home for three weeks before lockdown and shielding began.
Now, nine months post-transplant, I’m doing well. I’ve had a few hoops to jump through; my bloods have been a bit wonky, and I started showing signs of rejection at the beginning, but that was brought under control via steroids.
There have been a few medication tweaks, which I expected, but I’ve managed to avoid infections and my incision wound has healed beautifully.
Walking is the biggest change. I can walk for miles now. I’ve always liked walking, but my PH hindered it and that made me angry. Now I can walk in new places, and in July – six months after my transplant – I completed a 100km walking challenge. I ended up doing over 130km in one month and it’s something I am really proud of.
I feel like I can breathe better, and one of the biggest changes is that I can now walk and talk at the same time.
I have a two-year-old niece and I can run round after her and pick her up and give her a cuddle. Before my transplant that wasn’t possible.
I’m looking forward to returning to ballet fitness classes and to starting swimming too. I worked as a nursery nurse until just days before my transplant and I’m hoping to return to my job soon, but there is a lot to consider, especially because of the pandemic.
I don’t know anything about my donor and I don’t feel ready to find out yet. I’ve started to write a letter to the family, but that’s been difficult. The words ‘thank you’ don’t feel enough, not for giving me my life back.