Stacey is 31 and has a 13 year old son, Jack. She enjoys watching her son play sport, going with her family to the movies or out for dinner or shopping with friends.
At what age did you get your transplant?
I had my transplant at the age of 27. My son Jack was 9 at the time. It’s the biggest thing I have done in my life and was more full on than having a baby.
What sorts of things did they assess you for to get on to the waitlist for transplant?
When I was being assessed to be put on the waiting list, they looked at my oxygen saturation levels, how often I was needing antibiotics, how often I got admitted into hospital or needed IV’s at home. They checked how quickly I was de and I had to do the 6 minute beep test to check my fitness levels.
What was the decision making process around getting a transplant?
The doctors came to a decision that I should be put on the transplant list due to the deterioration of my lungs and the antibiotics were no longer doing their job. My body was becoming immune to them and I was getting sicker and sicker. I decided to also do it for my son.
What happened when you were on the list for transplant?
When I was on the list there was one main thing I had to concentrate on and that was my weight. I had to put on more weight before I got my new lungs. I also had to attend heaps of appointments and physio sessions. I didn’t have to go on oxygen, as my oxygen saturation was still at 95%, and the transplant team were amazed.
Did you have to wait long when you were listed for transplant?
When I was on the list, it took me about two and a bit years for me to get a call.
What sorts of changes happened to your body after transplant?
Not much really happened besides more scars and developing a lazy eye, which is more noticeable when I’m tired. They checked to see if I had had a stroke, which I hadn’t. They don’t know why, maybe it’s to do with a nerve. For a while my laugh changed, which my mum and husband both noticed. It might have been because I was sore and didn’t want to hurt myself.
I had the typical round face that you get due to the steroids, which people call “moon face”. But that’s gone now as I am not on as many steroids. I have got Cystic Fibrosis Related Diabetes now as a result of the steroids, which is tricky because I really like sweet things.
Some people report weird dreams or other strange experiences e.g. suddenly liking beer did anything like this happen to you?
Yes, I had weird dreams that were not nice. I also woke up suddenly due to jumping a lot in my sleep. This was because of some of the tablets I was on, it didn’t last for too long.
There is some evidence that people experience some trauma after coming out of ICU after the transplant, do you remember anything about this?
No I do not have any trauma that I know of after coming out of ICU. I was ready to come home a week later but had to stay in the hospital for the minimum time of two weeks.
Where are you now in terms of your health and outlook on life?
I am doing really well; my health is better than ever. I have had no problems as of yet with my new lungs. My outlook on life is that I’m happy to be here, knowing that I will be around for a lot longer to see my boy Jack grow into a young man.
Throughout the time when I was waiting and then having the transplant, my husband Michael and son Jack were really good. Jack had days where he was worried but he doesn’t talk much, but he knew what was going on and he knew it was very serious. After I had my transplant Jack was amazed. He said he was looking forward to running a race with me once I was better. He is champion boy at his school in running. Well anyway a couple of weeks ago we had a race and I beat him!!
What are your future plans?
My future plans are to become a grandmother and to be the longest living transplant recipient and make history – ha ha!
What words of wisdom can you offer other people considering transplant?
My words of wisdom are to be positive and never give up because everything works out in the end. A very wise man said “Your health is your wealth and you never know how strong you really are until being strong is the only choice you have”.
Interview from our Transplant Positive Profiles book.