I have organ donors who allowed me to be alive today #Cystic Fibrosis By Alice Vogt


I was born with a genetic disease called #CysticFibrosis. CF is an inherited disorder that causes severe damage to the lungs, digestive system an other organs in the body. Cystic fibrosis affects the cells that produce mucus, sweat and digestive juices. These secreted fluids are normally thin and slippery. But in people with cystic fibrosis, a defective gene causes the secretions to become sticky and thick.

Long-term issues include difficulty breathing and coughing up mucus as a result of frequent lung infections. There is no cure for #CF and most individuals with CF die young many in their 20’s and 30’s from lung failure. According to SACFA there are about 700 individuals in SA suffering from CF. The last treatment option is usually lung transplantation. My childhood felt relatively normal. The only things that felt different was that I had to nebulize, do chest physiotherapy and had to have a drip for 2 weeks every 2 years or so.


Other than that, I could do almost everything the other kids did. My health deteriorated rather drastically at the age of 21. I was placed on the waiting list for a bi-lateral lung transplant at the age of 22 and received my new lungs 8 months later at 23 years of age. I had a really smooth recovery and was given the most amazing chance at life. Calling it a second chance would not be doing it justice, as it was so much better than the first chance.


It was the first time ever that my life was as normal as it was in those first years after my transplant. I started working and became financially independent, I met my

husband and got married, we bought a house, we got pets. I also represented South Africa at the World Transplant Games three times, in Australia, Sweden and Durban in squash an racewalking. Unfortunately, after 5 years my body slowly started rejecting the lungs. I was relatively stable and functioning for another three years thereafter, but for the last two years it became clear that another transplant would be the only way out, even though a successful second bi-lateral lung transplant has never been done in South Africa.

After almost 10 years with my transplanted lungs, I became the first person in SA to have a successful redo bi-lateral lung transplant just over three months ago. My recovery has AGAIN been really amazing, with no major setbacks or complications

thus far. I feel extremely fortunate and blessed and it is amazing to be able to breath properly again! I will always remember my first donor for giving me just short of a decade of life. Now I have two organ donors who have allowed me to be alive today, and who are in my thoughts every single day.


One good thing to come out of my rejection and deteriorating health was Love Life; Gift Life. It’s a NPO started by 3 fellow lung transplant recipients (two of which are/were also C patients) and I, aiming to transform organ donation in SA. I started a blog in 2007, while waiting for my first transplant, and have been blogging ever since, so feel free to follow my journey. http://livinglifebreathlessly.blogspot.co.za/

http://www.lovelifegiftlife.co.za/

#cysticfibrosis #CF #65roses #cyster #lungtransplant #lungtransplantsurvivor #secondtransplant #transplant

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