Sandi Parsons is a mother, author, librarian and a passionate advocator for Cystic Fibrosis and Organ Donation. Sandi lives in Western Australia with her husband, a disgracefully behaved blue heeler called Pepsi, and a ‘To Be Read’ pile of books so high that they frequently threaten to cause a book-a-launch.
At what age did you get your transplant?
Thirty-Seven
What sorts of things did they assess you for to get onto the waitlist for transplant?
There was a barrage of medical tests to assess the rest of my body and make sure that all my other organs could handle the stress of a transplant. Numerous blood tests which included my immunity history, followed by updating of required vaccinations. A psychological exam and finally a dental clearance.
What was the decision making process around getting a transplant?
My work-up for transplant took over six months. This was mostly me dragging my heels, because I wasn’t emotionally ready for a transplant. After I’d done most of the tests / appointments and just prior to obtaining my dental clearance, my husband and I went to Thailand for 10 days. There was moment on the beach when I thought I was coping well, then two elderly people with walking sticks passed me as if I was standing still. That, for me, was the realisation that this time, things were different. Until that point, because I experienced a massive drop in lung function in a relatively short period of time (from 80% down to 25% in under twelve months) I was still fooling myself with the belief that this was just a nasty infection that needed a bit of extra help to recover from. That was the moment for me when I realised that this time my body wasn’t going to get better and I was out of options. I got my dental clearance as soon as we returned and went on the list.
What happened when you were on the list for transplant? E.g. did you have to work really hard to go to physio, attend appointments etc.
Initially I was sleeping on oxygen, so I carried on with things as normal. I was on summer school holidays, but as my fifteen-year-old son was in the process of moving interstate to live with his dad, it was still a very busy time. By the time I went back to work, I was on oxygen full-time. After only one week back at school I was admitted to Charlies via the emergency department and I began sleeping with Bi-pap at night.
I had enough sick leave and long service leave to take extended time off, so I made the decision that this would be best for my health. I ended up doing a repetitive cycle of home IV’s three weeks on with one or two weeks off until transplant.
Initially I drove myself to my appointments at Charlies and twice a week to the gym at Royal Perth, but eventually my Mum had to become my chauffeur.
Did you have to wait long when you were listed for transplant?
Five months and one week after being officially listed for transplant that all-important phone call came.
What sorts of changes happened to your body after transplant?
Lots of changes, but for me, the most significant would be the disorientation. I went from someone who was in-tune with my body, understanding its strengths and weaknesses and understanding my drug regimen to being absolutely disorientated. Part of that is the pain relief and massive doses of immune suppressants which can initially affect your memory. The other part is learning a different set of symptoms to look out for along with new medications. In terms of both memory and understanding life as post-transplant patient, I had a good grip on things by six months, but to return to the previous point where I was totally in-tune with myself again – that was closer to ten months.
Some people report weird dreams or other strange experiences e.g. suddenly liking beer did anything like this happen to you?
My son describes my changes succinctly. I am, he says, who I was always meant to be. I think of the changes as falling into three categories.
- How my thinking process / priorities have changed due to being in respiratory failure?
- The difference in my energy levels post-transplant. I spent most of my adult life with an 80% lung function and I have a similar lung function now – but the change in my energy levels is huge.
- Unexplained changes that can only be attributed to cellular memory. I am now rather fond of Lindt dark-mint chocolate (I was a white chocolate girl before transplant, and still am, but I did not like dark chocolate at all. I also have an intense desire to draw and create arty things.
There is some evidence that people experience some trauma after coming out of ICU after the transplant, do you remember anything about this?
I don’t recall any trauma at all or dreams. However, while I was in ICU, whenever I closed my eyes I would see kaleidoscope images that would mesh and merge, which were hallucinogenic.
Where are you now in terms of your health and outlook on life?
There have been some ups and downs in the last five years. I knew that a transplant would be trading one set of health problems for another. A transplant is not a cure and it’s really important to keep that in mind.
But it’s a pretty wonderful trade. I’ve done some amazing things in the last five years:
- Published my first book, written my second.
- Travelled to Vietnam, Rome, Scotland, Wales, London, Paris and Hong Kong.
- Married my best friend and watched my teenage son grow up.
- In my professional life I’ve won two industry awards.
I could keep listing things, but the truth is nothing beats the feeling of waking up each morning to take a deep sweet breath without it being followed by the dreaded morning cough. To breath in without gasping or pain and the knowledge that all day long each sweet breath will be followed by another and another.
As for my outlook, I believe that as a transplant recipient I have three responsibilities.
- Guardianship of something which was once part of another person. I have a responsibility to make informed health care choices.
- I have a responsibility to live my life well and to the full. I wasn’t given a second chance to sit around in a bubble.
- To share my story in the hope that hearing how successful transplants can be that it will encourage people to join the Organ Donation register in the hopes of paying it forward someday.
What are your future plans?
In the immediate future I plan to fly to Sydney to celebrate my son’s 21st birthday.
Professionally I’m very happy in my chosen career and have no plans to make significant changes.
In my writing life I have a piece in an upcoming anthology titled, Writing the Dream, which details my writing journey, including the publication of The Mystery of the Sixty-Five Roses. I’m writing the first in a series of chapter books which feature the continuing adventures of Jeremy and Darcy – where Darcy plays a significant role in helping Jeremy solve mysteries. I’m still looking for a publisher for my first chapter book which features the disgraceful, but sweet-natured antics of my dog Pepsi Parsons and a publisher has expressed interest in my (as yet unwritten) autobiography.
What words of wisdom can you offer other people considering transplant?
Be realistic about your expectations, in particular you need to understand that a transplant is a trade not a cure. Push yourself to do some form of exercise each day, even if it’s only walking around the house. Ask for help if you need it.
Ask CFWA to put you in contact with someone who is post-transplant so you can ask questions.
Join the post-transplant groups on Facebook – they are not exclusive, people on the wait list or those considering transplant are also welcome. You’ll find that many people in these groups are happy to share and they have a range of tips / things they wish they’d done that can make your life easier while you wait. It’s also nice to be able to connect to people who understand what you’re going through.
Interview from our Transplant Positive Profiles book.