I met Fawn Rogers quite some time ago at a function on a rooftop venue in Jozi. She was bubbly, kind and I think I noticed her fab shoes before I even looked up at her gorgeous face! Somehow, after chatting for a while, I discovered that Fawn had undergone a double lung transplant. Firstly, A LUNG TRANSPLANT! And secondly, DOUBLE! I was so interested to hear her story of courage, determination and hope that we ended up not concentrating much on the event at hand. She is amazing. Which is exactly why I had to feature her here and share it with you. It makes such perfect sense considering it is Organ Donation Awareness Month this August as well as Women’s Month.
Roxy: When did you discover you had a health problem?
Fawn: When I was born I had chest infections and struggled to put on weight despite my mom feeding me constantly. After insisting to 7 different doctors that there was something wrong with me, my mom finally found a doctor who told her what tests were needed to diagnose the problem. At the age of one I was diagnosed with a genetic condition called Cystic Fibrosis. Back then the prognosis was bleak and it was a very scary time for my parents.
We were living in Zimbabwe so I had to come down to South Africa for regular treatment which became more intense the older I got. My regular treatment plan consisted of taking pills throughout the day, physiotherapy twice a day with inhaled medication and hospital admissions every 3 months for 2 weeks of IV antibiotics and various in hospital treatment.
I eventually needed oxygen 24/7, a permanent feeding tube to help me gain weight and an insulin pump. My lungs were failing me and everything was immensely difficult to do. My mom became my full time carer and had to help me with simple things like getting dressed. It was a very painful time both physically and mentally. My only hope was having a double lung transplant!
Fawn with her mom
Roxy: This must have been so incredibly daunting to say the least. How did you first feel when you got the news that you would need a lung transplant?
Fawn: When I was around 16 my doctor told me I would need a lung transplant in the next few years. I was horrified! I didn’t know anything about transplants and it all sounded like very ‘unpleasant’ business. I wanted to put it off for as long as possible and I did – I managed to live my life with a very poor lung function for as long as possible. Eventually, breathing became so difficult and my quality of life was so poor that having a transplant no longer scared me – it was what kept me going. New lungs were all I wanted and the hope of finding a donor kept me alive!
Roxy: During this time, what were up to and how did this news affect your daily life?
Fawn: When I was listed for a transplant I had no life. I only left my flat to go to the hospital and I spent my days in bed or when I could manage, on the couch. I slept, took pills, did physio and ate – my entire days were dedicated to keeping myself alive and my spirits high. It was a dark and difficult time.
Roxy: How did you feel when you first heard you had a donor?
Fawn: On the 5th of March 2013, at the age of 25, I received my new lungs. I was in hospital at the time a donor was found and my doctor came into my room late at night to tell me the news. I was in such shock – even though you are waiting and you try to prepare yourself, nothing really prepares you for something like that. They give you a 50% chance of surviving the surgery so along with excitement of finally getting lungs comes a great deal of fear.
Roxy: Did you ever doubt that you would find a donor? Did you think about your death? Or even prepare for it?
Fawn: In South Africa there are so few donors that as someone waiting for an organ you do need to prepare yourself for the possibility that you will die before a donor is found. I don’t know why or how but I knew I’d get a donor in time. I knew I had so much still to do in this world and I WANTED TO LIVE. Giving up would have been easy but because I had hope, I never gave up and knew that it was merely a painful waiting game.
Roxy: Tell me about your transplant and the complexities of the surgery.
Fawn: Everyone has a different experience when it comes to transplant. No two journeys are the same so you never quite know what to expect. I got through the 8 hour surgery and spent a week recovering in ICU. I suffered from ICU psychosis which was very scary but otherwise my body responded well and I began gaining back my strength. There are of course a lot of tubes, medications, tests and exercises that need to be done on a daily basis to help you recover and help your body learn how to use the new lungs.
Fawn: I struggled with not needing my oxygen anymore – I had spent years relying on it to keep me alive so when I didn’t need it anymore I had a tough time adjusting and trusting my new lungs. It’s quite a bizarre transition. About a month after my transplant I had to have some liquid drained off of my lungs, a common side effect from the drugs, but the Doctor on duty ended up puncturing both my brand new lungs! I had to spend another 2 months in hospital recovering from the holes in my lungs which was just heart breaking.
Roxy: What was your recovery like?
Fawn: Once I got out of hospital recovery was slow but constant. Every day I had the strength to walk a little further and the confidence to do a little more. I was not only recovering from surgery but also from years of being stuck at home. My muscles were weak, my confidence was low and it took about a year to transform myself it a fully functional human.
Roxy: Has your outlook on life changed since your surgery and all the adversities you have faced?
Fawn: I am a very happy person and I believe I owe this to the hardships I have faced. When I have a bad day at work, I know that the fact that I dressed myself that day and drove to work still makes it a better day than most people are having. I know not to take health and life for granted – life really is short so don’t waste it being unhappy. And whilst you can’t always choose your circumstances you can ALWAYS choose how you feel about them. I choose happiness.
Fawn with two of her organ recipient friends
Roxy: Would you encourage people to become organ donors?
Fawn: Absolutely. My donor, who I know nothing about, is my hero! I don’t know what they did with their life or what sort of achievements they accomplished but I do know that they died a hero and I think if you are going to do one good thing in your life/death it should be to save a life… or 7! There are so many people waiting for donors and many of them die because of the shortage. I have lost so many friends because of it. When you die your organs can either be buried/cremated or they can be used to save 7 lives.
Roxy: How do you feel when you think about him/her?
Fawn: Thankful. Even though I received lungs from someone, they were a gift and like all gifts, they now belong to you. I am so thankful to my donor but I also see the lungs I have now as the lungs I was always meant to have.
Roxy: Any advice for those who are needing organ donations and are in waiting?
Fawn: Anything worth having is worth fighting for. Transplant isn’t easy and waiting for a donor isn’t easy but it is all worth it in the end. It may feel like they’re never going to come in time, or you aren’t strong enough but life has a way of giving you what you need at just the right time. Keep fighting for the life you want!
Roxy: I love your blog! Why did you start one?
Fawn: After my transplant I was a little lost in terms of what I wanted to do. I hadn’t studied anything and I was struggling to find a job. So I decided to start blogging to keep myself busy. My blog evolved from talking about random things, to telling my transplant story and finally when I had built a following I started getting invited to different events that I would then share too. I’m now very busy with work so sadly the blogging has taken a side seat but it opened so many doors for me and I’ve met such lovely people through it.
Roxy: How can people learn more about organ donation?
Fawn: Myself and 3 lung transplant recipient friends have started this organisation to raise awareness of organ donation in SA by sharing stories of people that have received a life saving organ. It is a cause close to our hearts and we are passionate about making a difference! Here is some info:
“Love Life; Gift Life (LLGL) was founded in April 2016 by four friends who have all been fortunate enough to receive lung transplants. Shaylene Perry, Alice Vogt, Fawn Rogers and Siobhan Scallan are all passionate about organ donation and want to heighten the level of organ donor awareness among the general South African population. LLGL aims to share the stories of real people, putting a face to organ donation in South Africa. This includes the stories of transplant recipients and those waiting for a transplant, the stories of donors and their families, as well as the stories of the incredible team of medical practitioners who are making transplant possible in this country. By attaching faces to the stories, LLGL hopes to add a personal element to transplant, which will resonate with the public. In particular, the hope is to connect with potential donors and their families, by giving them a chance to see how important and life-changing saying YES to organ donation can be.
To show YOUR support please follow the link HERE and add a green ribbon to your profile.”
Here are some facts about organ donation:
- Two independent doctors have to sign off that you are brain stem dead before you can be considered as a potential organ donor.
- Your body is not mutilated, only viable organs are used, and it is still possible to have an open casket funeral.
- There is no age limit on becoming an organ donor.
- You can save 7 lives by signing up to be an organ donor.
- Your family still need to give consent before your organs are donated, even if you have registered, so be sure to let your family know of your intentions.
- In addition to saving 7 lives, your skin can be used to help burn victims and your corneas can be used for cornea transplants to restore a person’s sight.
- There are no tests required when signing up to be a donor, all tests are done at the time of your death, once your family has given consent for your organs to be donated.
- Your treating physician is not the same person who does the organ recovery therefore saving your life remains top priority over donating your organs.
- The 7 life saving organs are: 2 lungs, 2 kidneys, heart, liver and pancreas.
I myself am an organ donor and signed up with The Organ Donor Foundation. It’s super quick and simple and less than 2 weeks after signing up I received my stickers to show that I would like to save seven lives. They advise that you stick them on your medical aid card, your drivers license and in your wallet. Also let your loved ones know of your wishes to donate your organs. We are all going to die – it’s the only guarantee in this life – and if you can help someone in need… why not? For more info, click here.