Rhianna Johnson interview with Larine Statham-Blair
Rhianna Johnson has Cystic Fibrosis and received a double lung transplant. She loves baking and playing with her French bulldog.
Larine (L): Thanks for meeting with me Rhianna, can we maybe start at the beginning? Tell me about cystic fibrosis (CF), and what life was like before organ donation?
Rhianna (R): Well cystic fibrosis is a genetic disease and it can affect almost every organ in your body, primarily your lungs and digestive system, and that is what most people have the biggest issue with. When we eat, we need to take medication because our body doesn’t process the fat in the food and we can end up with blockages and numerous other issues. The medication is called ‘Creon’, it replaces the enzymes my pancreas doesn’t produce. Not everyone is pancreatic insufficient, some are sufficient. There’s so many different mutations and genes of CF that affect everyone in different ways. Some people have lung issues but no tummy issues, and vice versa. And lucky me, I got both! Growing up, I was super healthy until I was around 9. My parents had me in every sport known to man. It was around this time when it was decided for me to go to hospital twice a year, for two weeks at a time for what we call ‘tune ups’. This is where I would receive antibiotics and physiotherapy. This all took place in Bundaberg, I was lucky never to be sick enough to need to go to Brisbane when I was young. If there is one thing I would tell kids born with CF, is to exercise. Be active, play sport, get your lungs working, because it’s essentially what kept me so well for so long. When I finished high school I started working full time, so exercise gets put onto the backburner, and that’s when everything went on a downward slope. When I was 17 I caught swine flu, and then in 2016 when I was 23 I caught Influenza A. When you get a virus and you have CF, the damage that it does is irreversible. I had to have a bronchoscopy after Influenza A, and my body didn’t react well to that.
L: You had the bronchoscopy at age 23. What happened after that?
R: That was when I was first sent over to the Prince Charles Hospital team to organise a transplant. My lung function dropped down to 23 per cent, I was lucky enough to recover back up to 45 per cent, where it remained steady up until transplant. However, the reason I was transplanted with that level of lung function, was that I was coughing up a lot of blood. They performed something called an embolization, where they go through an artery in your groin, to attempt to block off blood vessels in your lungs. I had two of those and unfortunately it didn’t work. I then had another embolization in April 2020 that resulted in a stroke, and a stay in rehab. They attempted a fourth embolization after my stroke at Prince Charles and something went wrong when they tried to extubate me, which resulted in an overnight stay in ICU and a 16hour sedation. So come August 2020, I was officially put on the donor list.
And then early one morning in October, I received the phone call. I thought ‘this is it’. It was from a staff member at Prince Charles and they said ‘we have an offer of lungs, would you like to accept?’. Obviously, I said yes, so we packed the car and flew down to Brisbane. By 3pm that afternoon, I was cleared and wheeled into theatre. I don’t remember much post-transplant in ICU except getting up to walk. I was given a lot of pain relief obviously, and there were tubes everywhere, out of my neck and stomach. After five days, I was moved to the ward and I in total I was in hospital for about three weeks. It was rough to begin, I had a lot of stomach issues. Before my transplant I was coughing to the point of vomiting multiple times a day, I was so tired that hanging out the washing was a chore. Now, the energy I save not coughing and feeling run down, allows me to play with my niece and nephew. I’m only 11 months post-transplant, but those little things are huge. I already feel a big difference doing basic tasks that most people take for granted.
L: Tell me what your internal dialogue was when they said to you, we’ve got an offer of lungs? You seem to manage things with humour.
R: Definitely. I’ve got a lot of friends in the CF community, and we are all the same. I believe that when you’ve had something since birth, it is easier to handle than being diagnosed with cancer at 40-something, where you’ve lived a normal life and all of a sudden you’re sick. I’ve never known any different. Which I think makes it easier to have a sense of humour about it. Also, my positivity and outlook on life, a lot of that has to do with my Mum and Dad. Growing up, I wasn’t made to feel like I was different from anyone else.
L: That’s a great tribute to your parents and how you were raised. I guess for people that have had no connection with organ donation or haven’t suffered from a lifelong chronic illness, the idea of having another person’s body part inside might seem daunting. Do you ever think about that?
R: When I was first referred to the transplant team it was incredibly hard to think that someone has to die for me to live. It wasn’t so much the fact of someone else’s organs in my body, it was them losing their lives, and thinking about their family. I believe after 12 months, I can write an anonymous letter and Donate Life or the hospital will send it on to the family, and they can choose whether to make contact with me or not.
L: Do you think you will write a letter?
R: I haven’t decided, I think I will. I don’t know what I’d say. They might not even accept my letter.
L: What other factors go into a successful transplant?
R: When you’re getting matched for a transplant, your body size really matters. You can’t have the lungs of a sumo wrestler in a tiny little body. The obvious ones are your blood type and tissue type, however body type and size is also very important. Also, antibodies are vital. It’s really important the donor had certain viruses and you’ve had the same viruses, that will really help. You’ve also got to make sure you have skin checks, and dental works up to date. Anything major needs to be done pre-transplant, because post-transplant you’re on rejection meds which kill your immune system. If you have infections during this time, it’s difficult for your body to fight them off.
L: So what are your plans for the future? What do you want to do moving forward?
R: First, I would like to travel once COVID goes away. Also, buy or build a house. Watch my niece and nephews grow up. Those things are first on the list.
L: Rhianna, is there anything you would want people reading this to know about organ donation?
R: You could be a smoker, you could be a drinker. You can still be an organ donor. Yes, your overall health and health of your organs is important, but there are several different organs people can donate. There is so much more donors can give than most people realise. One person can save up to eight lives with their donation. People need to talk about their wishes with their family members, because in the end, the decision is theirs.
Read the full Gift of Life photo essay story The gift of life
Special thanks to local organ donation specialist nurse, Karen Jenner.