Daniel is 28 and enjoys spending time with his beautiful fiancé Rikke. Daniel has a passion for computers, and all things electronic.
At what age did you get your transplant?
I had my transplant in 2013 when I was 25.
What sorts of things did they assess you for to get onto the waitlist for transplant?
They assessed to see if I was compliant with visits to the doctors, my treatment and physio. I had Lappa (home care worker from CFWA) come almost daily to help me with my physio. They wanted to make sure I wasn’t drinking too much. By the time they were looking to see if I could go on the waitlist, I had actually stopped drinking so much for over a year because it was making me feel even worse, but Dr Musk wanted to be sure. He made me go to an alcohol recovery clinic. I had to go every week.
What was the decision making process around getting a transplant?
At first I wasn’t going to consider it because I had been in so much pain, everywhere. In my back and chest and I have lower back sciatica. I thought there was not much point going through having a transplant but still being in lots of pain. But then the doctor prescribed a combination of pain killers that made me feel better, I wasn’t in pain all the time. As I was feeling better with the pain side of things I thought it was in my best interests to keep living, by getting a transplant.
What happened when you were on the list for transplant? E.g. did you have to work really hard to go to physio, attend appointments etc.
I had to have vaccinations and go to Royal Perth Hospital to do their physio every morning. I had to work towards getting fit.
Did you have to wait long when you were listed for transplant?
I had to wait about two and a half months.
What sorts of changes happened to your body after transplant?
I had a swollen face which has gone down a bit now. I put on 15 kilos but my weight is going back down now, due to some medication I am on.
About six months after my transplant, I had pimples which lasted for about six weeks and then went away. My hair went curly then back to normal. I do get tendonitis as a side effect to one of the medications I am on. I also still get pleurisy in my lungs.
Some people report weird dreams or other strange experiences e.g. suddenly liking beer did anything like this happen to you?
No I don’t have anything like that.
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 really hungry a day after my lung transplant and I tried to eat something but almost choked because of the tube down my nose. I had to ask them to pull the tube out so I could eat, as I was so hungry. I was in hospital for three weeks. I had to get used to breathing again as I was on oxygen for about 12 to 18 months before I had my transplant.
Where are you now in terms of your health and outlook on life?
Things are still a bit difficult because I don’t always feel so good sometimes after I have taken the mediation I am on. I have to lay down until I feel better. But overall I feel much better than I did before. I got engaged last November in Bali. I met my girlfriend Rikke a year after I had my transplant.
Daniel’s Dad John Di Re: For years before Daniel had his lung transplant he was constantly coughing. I found it very tough watching his health go downhill and had butterflies in my stomach about it. Now after his transplant he hardly coughs at all.
What are your future plans?
I would like to move out from my parents, but somewhere close by to them, so I can still get free dinners.
What words of wisdom can you offer other people considering transplant?
I don’t do words of wisdom, but I guess I would say do it or die.
Interview from our Transplant Positive Profiles book.