Gavin is a family man, with a lovely wife and three children. He is also highly motivated and a keen swimmer, having swum the Rottnest Channel Swim three times and done several triathlons.
At what age did you get your transplant?
I was 40. While waiting for transplant my wife and mum thought it would be funny to put 40 candles on my cake. I had trouble blowing out 1.
I eventually rejected after 5 years. I was in hospital and not particularly well when the transplant coordinator came in and said happy birthday we’ve got lungs for you. Presents don’t get much better. Happy 46.
What sorts of things did they assess you for to get onto the waitlist for transplant?
The main criteria for selection is height and blood type, so tests around that. There were many others involving breathing, on board infections etc.
What was the decision making process around getting a transplant?
This was tough. I was torn between going too early and being too sick too survive the waiting time for new lungs. I had run out of criteria to assess that. I eventually decided to take 3 months off work and commit 100% to health and fitness. It was a dramatic failure but gave me total clarity about needing a transplant.
What happened when you were on the list for transplant?
My first transplant was in Melbourne, so no distractions with total focus on surviving and being prepared for transplant. It was quite convenient as we lived a couple of blocks from the hospital. I spent a lot of time as an inpatient in hospital. I was there with my wife and 2-year-old son.
My second transplant was in Perth. Very different as I could be around friends and family! I used to go to my local gym but with lots of visits to the hospital. I was the first person in WA to have a second lung transplant so the Transplant team were pretty intense about making everything go right.
Did you have to wait long when you were listed for transplant?
My first transplant I waited 9 months. It seemed like I would never get one, and an incredibly long time. While my focus was all on transplant I tried to enjoy Melbourne as much as I was able to, to take my mind off it.
My second transplant I waited 6 months. My breathing was heading south at 3% a week. After 3 months I stopped doing breathing tests as it was pretty much accepted my breathing was screwed at 18%. I spent most of my time in bed and on oxygen, not a great existence.
What sorts of changes happened to your body after transplant?
There is nothing more to say other than I could breath. No more chest clearance physio, I suddenly had 5 hours of my day back. Very odd transition to deal with! I turned pink from a dull grey, my appetite improved and I gained weight. Generally, state of wellbeing improved dramatically.
Some people report weird dreams or other strange experiences e.g. suddenly liking beer did anything like this happen to you?
There was no sudden change about liking beer, this was a well-established habit already. However, my favourite colour was always green, but it changed to yellow. Very weird.
There is some evidence that people experience some trauma after coming out of ICU after the transplant, do you remember anything about this?
I was very nervous about leaving the security of ICU, but the post-transplant staff are amazingly diligent and switched on. I was very well looked after.
In Melbourne I had a lot of pain from infection, so I was looked after by the pain team. I gave them a case of wine on departure, so on subsequent admissions I was the best looked after guy in hospital. Just to add I had absolutely no pain on my second transplant here in Perth.
Where are you now in terms of your health and outlook on life?
I continually keep my health and fitness on a fairly short leash. Balancing CF, transplant, Type 1 diabetes and life can be difficult to navigate at times, but one of my mottos is “plan for the worst expect the best”. Keeping a baseline level of fitness is crucial as the medication can deteriorate muscle mass.
Daily training bores me silly so I need goals to motivate myself, which involve sporting events. 6 months after my first transplant I started doing triathlons. I ended up doing 3 seasons, I loved it.
After my second transplant I had I “why not” moment which led to having done the Rottnest Channel swim 3 times.
What are your future plans?
I’ll keep doing these events as long as I can. Exercise, while great for physical improvement does amazing things for the mental state. My career plan is to retire from “dollars for hours’ style work’’ and replace it with investment returns. I want to lie on a beach in Thailand drinking a cocktail and looking at my balance sheet on my laptop.
What words of wisdom can you offer other people considering transplant?
Strike that balance between waiting too long and being fit enough to do well after the transplant.
Always have a goal. Times will be tough. To get through and absorb the lumps and bumps, you need a strong clear goal about where you’re heading. Do lots of sit-to-stand exercise while waiting for Transplant You have to be able to get out of bed after the op.
I’ve had two double lung transplants, with very different experiences. The last one I virtually had no pain with a very quick recovery…no physio……….Onwards……
Interview from our Transplant Positive Profiles book.