At 30, Shannon has worked as a radio producer and presenter, as a DJ around Perth, managed a band, written music reviews and coordinated communications for music festivals. For the last few years, Shannon has worked on creating her own business, Eclectic Ladyland, which is a boutique in Albany as well as an online store.
At what age did you get your transplant?
It was 2 days after Christmas in 2014, I was 28
What sorts of things did they assess you for to get onto the waitlist for transplant?
The work up was all encompassing. I had to do intense breathing tests, sleep tests, see the dentist, the gynaecologist, a psych… Not to mention blood tests and x-rays and bone scans, and basically everything you can imagine, nuclear dyes, CT scans, and ultrasounds. They basically check for anything and everything!
What was the decision making process around getting a transplant?
Once I found out I was eligible, I had to decide whether I wanted one. And I didn’t! I was feeling too tired and sick, not to mention my brother hadn’t survived his, and I was about to go through a divorce. I was exhausted and prepared to die. But then my family, particularly my niece and nephew, inspired me not to give up. They didn’t want me to leave them! And I figured, I either die in a few months or I die trying… or perhaps I’ll even live! It’s a really hard decision to make, the mental anguish that comes with transplant is huge.
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.
I had to move back to Perth from the country, which was a huge financial hit as I’d been running a business for less than a year and had to hire full time staff. It felt like I was at the hospital all the time, it was constant, and I wasn’t used to being there that often. Not to mention going from Charlies to RPH (before they moved to Fiona Stanley) was hard. It’s such an old hospital, I hated it. I was supposed to go to physio, but rarely got there.
Did you have to wait long when you were listed for transplant?
I only waited six weeks! Which is pretty unusual, but I have a common blood type and am quite tall. But it was an agonising six weeks. I didn’t sleep that well, waiting for my beeper to go off.
What sorts of changes happened to your body after transplant?
Weight gain has been a big one! I’m so hungry all the time, with the steroids, but they also give you more muscle. (My booty is so big now haha!) It can be a bit hard to deal with, going from deathly skinny to podgy in such a short amount of time. Unfortunately, although I should have been grateful to my amazing body for getting through such a trauma, I got pretty down about my appearance. My hair fell out and became thin and frizzy, I had to cut it off. My skin also became blotchy and itchy and dry. And I had chipmunk face! Plus the scars are something to get used to, especially in new relationships. I also developed diabetes, which I’d had very mildly before, but after transplant it went nuts!
Some people report weird dreams or other strange experiences e.g. suddenly liking beer did anything like this happen to you?
I had loads of hallucinations and dreams in hospital. I actually find a lot of them hard to talk about still as some were really awful. But I do remember thinking my nurse was a kangaroo! I’ve also gone off meat since my transplant and developed and insane sweet tooth!
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 remember any trauma after ICU, but I do remember the whole recovery period being quite traumatic at times. The mental wall you hit is really intense, and the pain killers make life a bit hard.
Where are you now in terms of your health and outlook on life?
My health is so amazing! I LOVE BREATHING! I have had no issues with my lungs. My FEV1 now is 4.3 instead of 0.8. I can laugh, sing, dance – it’s the best. The diabetes is a pain, but I’m getting it under control. Otherwise, the side effects have calmed down now for the most part. The biggest thing recently has been my mental health. I have been on anti-depressants for a while, but I have struggled a lot. I saw a psych for a while, and basically am still grieving for myself and what I went through. It’s hard to explain, but apparently very common. You need to give yourself time to process and recover, and I don’t think I did! My outlook is positive! I have been working hard and can’t wait to have adventures and travel.
What are your future plans?
I have just moved back to the country and am working hard on my business. Next step, I have made myself a bucket list and am taking it really seriously! I want to tick off loads of adventures.
What words of wisdom can you offer other people considering transplant?
Try not to leave it too late. The better you are, the easier you will find recovery.
Interview from our Transplant Positive Profiles book.