Today’s #TransplantTuesday feature is our very own Fawn Kruger, co-founder and Marketing Director of TELL. Fawn, 34 from Johannesburg shares her journey of a double lung transplant.
1. Which organ did you receive, and in what year?
Double Lung Transplant 2013.
2. How long were you on the waiting list for your organ?
I had become too sick to be listed for a transplant and so I needed a feeding tube surgically inserted so that I could reach a weight where I would be considered for transplant. After a few months I reached my goal weight and was listed but by this time I had become critical and was listed as a priority in the country. I waited 8 months before a suitable pair of lungs was found.
3. What was life like before the transplant? How did you spend your days?
I was born with Cystic Fibrosis and spent my entire life ill. My parents were told it was a childhood disease and I would be lucky to reach 13. At around the age of 13 my health became even worse and I had to start routine treatments of being admitted into hospital every 3 months for 2 weeks of IV treatments. I was living in Zimbabwe and would have to fly up to South Africa every month to get medication and a have check up with my team. This was hugely inconvenient, expensive, emotionally and physically challenging. When I wasn’t in hospital my daily routine consisted of taking pills daily, doing nebulisers and physio twice daily. I did not participate in any school sport as I didn’t have the physical strength and as I got older I started to miss out on more in life. I was unable to go to university as by that stage I had to be put on oxygen 24/7 and walking became so difficult that I often needed wheelchair assistance. I started on an insulin pump which helped control my diabetes, my tube feeding took place at night and I also had a portacath inserted as my veins had all collapsed from the years of IVs but they still needed access for these to continue. At this point every day was torture. I would wake up after a long night of coughing (I actually had a 6 pack from the amount of coughing I did daily), I would get daily nose bleeds, which made wearing oxygen difficult and I just had no energy in general. My mom would help dress me and on a good day I would walk to the lounge to watch TV. On bad days I would stay in bed and be throwing up most of the day. Every breath was painful and all I could focus on was getting through each day and hoping that they would find a donor in time.
4. Describe the emotions experienced when you received “The Call” for your transplant? .
I was in hospital at the time, I had just suffered from hemoptysis (coughing up blood) and was recovering. I had seen my doctor earlier that evening and then I went to sleep. He came back in around midnight and I was very confused. He told me they had a match and the following morning I would get my lungs. I called my mom who had moved down to Joburg to look after me as I wasn’t able to leave my flat and look after myself. She and my aunt drove straight to the hospital along with my brother. We tried to call my dad who was still in Zimbabwe but we couldn’t get through. A message was sent to him and he flew up the following morning but I didn’t get to see him before I was wheeled into surgery. I was excited but also very scared as I had lost a few friends who had died just after their lung transplant due to complications. I knew in my heart I would survive the 50/50 odds they gave me, but I was scared for the recovery because I had seen how hard it can be.
5. What is life like now, after the transplant?
My surgery was 8 hours long and I had a few complications afterwards, one of which was radiology puncturing both my new lungs ‘by accident’. I needed a procedure to drain fluid off my lungs and during this procedure the doctor punctured not 1 but both of my lungs. My team was furious and it took an additional 2 months (I was in hospital for 3 months in total) to recover as the surgeon had never had to deal with such a negligent mistake. I had 13 drains in total to try and fix the holes and had to go through many painful procedures to recover. Luckily the holes healed and I was discharged. Not without having a few close calls and my spirit being totally broken.
Now, 9 years later, I have done things that I never thought were possible. Most girls dream of their wedding dress and having identity docs but for me those weren’t realistic goals as my odds of getting to an age where that is possible was low. I, instead had simple dreams – of being able to walk around and not stress about how far I could go without needing to sit down. I have all those luxuries now with being able to take deep breaths with my new lungs. I met the love of my life and got married last year. We bought a house and I run my own marketing agency. I also cofounded TELL (Transplant Education for Living Legacies) as a way to give back and help others awaiting transplant. I have been given a first chance at life, having gone from being bed ridden and completely focused on staying alive to now being able to experience life at its fullest, with all the challenges and beauty that goes with being a ‘normal person’.
6. What advice would you give patients on the waiting list?
If all you have is hope, then that’s enough. It doesn’t matter how sick or how dire the situation seems, hold on to hope, be strong and wait for the better days to come. They always seem to come just after you’ve nearly given up!
7. Why do you think there is a shortage of donors in South Africa?
People don’t think of organ donation until it’s too late. I spent over 700 days in hospital and during that time I made a lot of CF friends. Some of these friends were also waiting for a donor but didn’t receive one in time. If people knew that there are people literally dying to get something they don’t even need anymore, perhaps they would reconsider.
8. If you could describe transplant in one word, what would it be?