Day 1 - Keen sports man
Hi, I’m James and I am currently on a jejunostomy feeding tube into my bowel and I feed overnight and eat what I can during the day.
I was born with Cystic Fibrosis (CF - a genetic disorder which causes the lungs and digestive system to become clogged with mucus) and was relatively well until I was 18 and during my time at university. Towards the end of my time at university my weight started to tail off and gradually I required more and more IV’s and my lung function started to go down as well. When I was around 21 my CF team started to talk about transplant and put me on insulin as my sugars tended to be on the higher side. This was to see if it helped my weight as CF diabetes is a common problem. As my health and weight continued to decline I went on to naso-gastric feeds.
With CF I have a lot of stomach and bowel issues. The doctors tried a naso-jejunal feeding tube into my bowel, which I responded better to, so I went for my first jejunostomy tube and then had a fundoplication for acid reflux on my stomach in preparation for transplant.
After my heath continued to go down-hill I went on the lung transplant list after many tests to see if I was suitable and received new lungs after just seven weeks. However, one month after my transplant my feeding tube broke and was removed. Most people – following a transplant - usually gain weight, as the energy requirements are less because you are not fighting infections and are usually on steroids. This means people have an appetite - but this was not the case with me, and I continued to lose weight after transplant for the next few years and went down to just 47kg.
After telling the doctors I wanted to go back on feeds I had to go through tests for various nose tubes to see what worked best for me. The jejunostomy into my bowel was still the one that worked best for me after having another naso-jejunal tube in for nine months.
So, three years ago I had another jejunostomy put in and have put weight on and am now a healthy weight and can do the sport and activities I want to. If I had not had this it would take months to put on a few hundred grams followed by further stomach problems, which would mean I would lose it all again.
I am very keen on sports and compete regularly at the transplant games (pre-pandemic) at the British Transplant Games, Heart and Lung European Transplant games and the World Transplant Games and have won many medals in a variety of different sports. During all the lockdowns I have kept going out walking, running, and cycling and being as fit as I can be, as that is how I got through the transplant with a reasonably quick recovery and have never been fitter. So, bring on the next sporting challenge whenever that is. I am also always outside in the garden or the allotment growing my veg.
While a transplant and a feeding tube are not cures, as some people think, they enable people to be healthier and to live a fuller life. Although I can do sports, I still have days where my CF stomach and bowels play up and I just have to take them as rest days although these symptoms have improved and are not as severe or as frequent. Managing them with my diabetes can be tricky at times but I have come to realise that I have to do things when I am feeling good.