Sandi Parsons, reader, writer and storyteller.

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Instagram : Puppies, Books and CF Life

31 Days of Cystic Fibrosis. May 31 2020 On Hold ‘till Jan 2021 I had a particular post reserved for today — because before COVID-19, Growing Up Disabled in Australia was due to be released in a few days. It's the story behind the piece published in Growing Up Disabled in Australia. It's a story that I spent years writing to make sure I got it right — the longest time I have ever taken to write a piece. Of everything I have ever written, this story is the one that means the most to me, because it fulfils a promise I made. Now, Growing Up Disabled in Australia is due to be released in February – so in late January 2021, there will be a bonus "31 Days of Cystic Fibrosis" post. For now, I'm going to sign off with "Let's talk about THAT word tacked on the end" which is a text version of a piece first performed as an oral story through Centre for Stories as part of Stories From Home. https://medium.com/@sandiparsons/lets-talk-about-that-word-tacked-on-the-end-c7dff4d4858f And one last thought before 31 Days of Cystic Fibrosis wraps up for 2020. If you've never had a chat about organ donation, talk to your family today. Let them know your wishes. Knowing their loved one's wishes plays a massive part in families consenting to organ donation. It's a hard conversation to have, but having that chat can save lives — it saved mine. #31DaysofCysticFibrosis2020 Image by Elias Sch. from Pixabay [Image Description: Figure rolling a stone uphill. The figure, hill and stone are black; the background is blue.]
31 Days of Cystic Fibrosis. May 30 2020 A Transplant is a Trade Not a Cure One of the common misconceptions about a transplant is that it a cure. I will always be a person who has chronic health issues; I traded one set of health problems for another, the bonus being I am still breathing, still alive and ready to continue the fight. My first complication had minor symptoms, my left hip ached, something that is seemingly innocuous. Investigations revealed I had avascular necrosis in my hip. The medication keeping me alive was also strangulating the small vessel that supplies blood to the head of my femur, causing that bone to start cracking. My team managed to stabilise the problem, but eventually, I will need a hip replacement. Towards the end of 2013, I was displaying all the symptoms of post-transplant lymphoma. All the lymph nodes on the left side of my body had enlarged. However, it turned out to be a funky-fungi instead, one that has a reputation not only for mimicking lymphoma but also for being fatal. It saw me embark on two years of antifungals — a treatment that caused massive damage to my skin and both precancerous and cancerous growths develop on my face, chest, arms and hands. Last October I picked up up a respiratory infection that is known in lung transplant recipients to cause either rejection or secondary infection. I was lucky; I came out with the secondary infection — another fungus, but a more common one this time — which my team is still actively treating. And then there are the numerous side effects caused by the antirejection medication. But I can breathe — so while a transplant may not be a cure, it's still the better option. Bonus Fact: As far as my team are aware, I am the first person in Australia to contract the original fungi after a lung transplant. There is no data on surviving this fungus on a long-term basis. The treatment may have eradicated the funki-fungi — it also could be sitting dormant waiting to strike again. The guys in the white lab coats were super excited to have an opportunity to study something they had never seen before. ... continued in comments

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