Life is Truly Amazing After Transplant
Every person has a different journey, including people living with CF. Some people may find the contents of this article confronting. If this story raises any concerns for you, please get in touch with our team at firstname.lastname@example.org or on 08 6457 7333.
Caz is a vibrant and iconic woman in the world of CF, having spent several years on the board of Cystic Fibrosis WA and now serving as our president.
She has been involved in several campaigns such as Kalydeco, travelling to Canberra to meet with politicians. Caz has also presented numerous, very moving speeches to continue to raise awareness about CF to the broader community. She has a true sense of glamour, often wearing a touch of red, a wicked sense of humour and tons of resilience. If you can’t find Caz in Perth, guaranteed you will find her in her beloved Bali, sipping cocktails and enjoying a massage.
What sorts of things did they assess you for to get onto the waiting list for transplant?
I had to go to St. Vincent’s in Sydney as lung transplants were not being performed here in Perth, however, they started the assessment here at Sir Charles Gairdner Hospital (SCGH) when the Sydney team visited. They advised me that if I didn’t have the transplant, I would be dead in two years. When I arrived in Sydney, I had to undergo the same assessment which was a bit stressful. I believe I am the longest surviving female lung recipient in WA.
What was the decision-making process around getting a transplant?
I was in hospital for a tune-up when my specialist mentioned to me that the Sydney transplant team were coming over and that I should see them. I didn’t think I was that unwell to need a transplant. I was working, albeit part-time, and had a great social life. My FVC was 0.8, I am not sure what that is as a percentage. I knew of people who had gone to Melbourne and not survived because transplant was still fairly new back then. It was such a different time; success rates were not so good, and I didn’t really have any mentors. I only knew of one person who had a successful transplant. I guess I was in denial, so I spoke to a friend who helped me to decide. She said to me, “If I were given a second chance, I would take it.” Retrospectively, it would have been better to have gone across a lot sooner, before getting so sick. Recovery is so much better if you are healthier.
What happened when you were on the list for transplant?
I went over to Sydney in October 1993; the transplant was in November 1994. I was given a pager as mobile phones were relatively new and the size of a brick. I had to attend both Royal Prince Alfred (RPA) for the CF clinic and St Vincent’s for my transplant. I had to attend the gym twice a week at St Vinnies which I really enjoyed as it was very social.
Did you have to wait long when you were listed for transplant?
I was listed for nearly 18 months before I got my transplant. The last three to four months were the hardest. I was on oxygen 24/7, so much seemed impossible. Ten days prior to my transplant, I was admitted to RPA with palpitations, shortness of breath and haemoptysis. My body was shutting down. I was given IV antibiotics but was not responding to these. I couldn’t shower myself without the help of my mother. I couldn’t even make it to the toilet without soiling my pants. Here I was, 27-years old and all my dignity was being viciously stripped from me. Even the simple task of brushing my teeth would render me breathless. I barely had the energy to breathe. I would simply sleep all day scared that this time I wouldn’t wake up. I suffered excruciating headaches as my carbon dioxide level was getting dangerously high day-by-day. A few days later I was put on a respirator. My physician spoke to mum, unbeknown to me, and said that “We’ve pulled out all the stops for Carolyn, there’s not much more we can do. I just want you to know that she probably won’t make it to transplant.”
Finally, just 12 hours prior to my predicted demise, I received the call. I was in the theatre at RPA waiting for the anesthetist to put a PICC line in me as my port had decided it had enough. The nurse and I were chatting, and she asked me what I was having the line for. I told her I was waiting for a lung transplant and that I needed to have it before the end of November so I could go home and be a bridesmaid for my best friend, when the phone rang. The nurse said “Yes, yes, OMG yes!”, She then turned to me and said, “We’ve got some lungs for you.” I was then taken by ambulance to St Vinnies for the operation. I was so weary by this stage my CO2 levels were dangerously high, I had the worst headache. They only just managed to get this all under control to operate. A few days after the transplant, I saw the anesthetist who was present during my transplant and he said to me, “Wow! Look at you; and to think I thought you would be a waste of organs”.
What sorts of changes happened to your body after transplant?
The usual puffy face. I already had chubby cheeks, but after the transplant I looked like Burt Newman’s love child. Taste was different. I think mostly because I had such a long history of coughing and wariness about regurgitation and just wanted easy food. Oh! I love food now. Having so much more energy, that was amazing. I had an extra two hours a day – no physio!!! My first breath was amazing too. I had pink nails, pink lips. I could feel my toes. I still have a phobia about blue lips, I always like to wear a little lipstick. My best experience was when I took my first shower. I asked the nurse if I could close the door and shower in private. I was able to inhale steam without coughing; it was so good even though I was still very weak. Before this, I always had to shower with the door and windows open because any steam made me cough. I also got constipated which, strangely enough, also felt great because it was something I had never experienced before. You have to love the CF bowel. Pre-transplant, my energy requirements were so high everything just went straight through me. I took a lot of drink supplements.
Some people report weird dreams or other strange experiences. Did anything like this happen to you?
I think that has a lot to do with, and the fact that, when you feel healthy, you’re more willing to try different foods. I had highs and lows mentally from prednisolone.
There is some evidence that people experience some trauma after coming out of ICU after the transplant. Do you remember anything about this?
I recall being moved from recovery to ICU after the transplant and spitting out the tracheal tube. I was woken up pretty soon after the operation to the nurses scrubbing me to take all the betadine off. I thought “geez, give a girl some rest. I have had a major operation.” During my first bronchoscopy, they discovered I also had some fluid on my new lungs, so they had to drain four litres of fluid. But I still felt good, there wasn’t too much pain. The pain was more when I got home, a bit like muscle pain after a full-on gym session.
Where are you now in terms of your health and outlook on life?
I have very good health and, yes, I need to get back to the gym. I have a lot of sinus issues, but my lungs are great. I get check-ups as needed at SCGH. My outlook is very good; I have lots of normal plans such as travel and retirement, normal getting old stuff. I didn’t really make plans when I was young such as superannuation, life and health insurance.
What words of wisdom can you offer other people considering transplant?
Don’t think you’re immortal, don’t wait until you’re too weak and unwell, don’t leave it until it’s too late. Life is truly amazing after transplant, you have so much more energy. Listen to your body, pace yourself if necessary. Take advantage of your medical team, ask questions and listen to them. Make plans and set goals for after transplant. Most of all, remember you have been given a second chance, take it and enjoy your new-found life.
Did you know there are around 1,400 Australians currently on the wait list for a life-saving transplant?
It takes less than a minute to join the Australia Organ Donor register. For more information and to register visit donatelife.gov.au
CFWA Transplant Services
Cystic Fibrosis WA offers a range of support services, available to individuals and their carers, both before and after transplant. Visit our Transplant page for more information.