Bread & Butter is a monthly dinner and storytelling event designed to make you think deeply about social issues. A new storyteller every month shares a personal story with 40 guests in the dining room at the Centre for Stories.
Sandi Parsons considers her guardianship of gifted lungs one of her many victories in her ongoing battle with Cystic Fibrosis. She was 38 when she underwent a double lung transplant. On 28 June 2018, Sandi shared her story at Bread & Butter.
Copyright © 2018 Sandi Parsons.
This story and corresponding images have been licensed to the Centre for Stories by the Storyteller. For reproduction and distribution of this story/image please contact the Centre for Stories.
This story was originally published on November 19, 2018.
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After months of being told she was just a nervous new mum, my mother finally got a diagnosis for the symptoms I presented with. It was a diagnosis that came with an expiry date. In the ‘70s, people who were born with Cystic Fibrosis had an average life expectancy of 7. The doctors told her that there was a 50% chance that I would live to be 13.
Cystic Fibrosis is a progressive genetic disorder that results in frequent lung infections that ends in respiratory failure. We have a defective gene that results in a sticky build-up of mucus in our organs. In particular, the lungs and the pancreas. I grew up believing I didn’t have a future. I would go to camps and see other people with C.F and I knew what the future held, and I knew that it wasn’t good. But at the same time, I was a little bit stubborn. So, as I grew up, I always tried to do things my own way. And my mum ended up handing over my medical treatment to me very early. I was 8 when I took over taking my own tablets. I was 10 when I took over my own physio. And at 14, the doctors said: “What we might do now, is we will have Sandi come in first, and she can tell us what’s been going on over the last 3 months, and then you can come in and confirm and we’ll do that for a while.” So, mum went along with that and she sent me in first, and then she came in after and said the doctors said: “This is what Sandi said”, and she said: “Yeah, that’s about right”. And then the next clinic visit, she sent me on the bus. And the doctors, they had the clinic visit and then they said: “Can we have your mum in now?” and I went: “Well, she didn’t come with me, I came on the bus”. And they were gobsmacked, so they rang my mum and my mum explained to them that this was my disease–it wasn’t her disease, and I had to learn to manage it.
I’m not going to say that I was the perfect child and I always did everything right. I remember in the times that people would see everyone on low-fat diets, not liking the powdered milk and waiting until everyone was out so I could have the full-cream milk with my breakfast. Which I wasn’t smart enough to have the correct enzymes with, so I ended up with a bellyache. I also remember not doing my physio and saying that I had. And those sort of things resulted in my first few admissions. So up until I was 14, most of my treatment had been proactive. As in: we did physio twice a day, every day; we did NEBS twice a day, every day; I exercised. And it was so that we kept my lungs in good shape so that when I had an infection, I would be in a better position to deal with it. But at 14 I had my first IV admission, and that means: we go into hospital and they put a line in (like an IV except it’s called a PICC line) and it starts at your elbow and goes all the way to your heart. And usually it’s a 2-week course in hospital. At this time, everyone around me at the CF camps that I was growing up with, were either a lot sicker than I was, or they weren’t much older. The adults were on the disability pension, and a few of them were studying. There didn’t appear to be a future at all. When I was 15, a stranger came to camp and his name was Tom. And he was 30 and he had a job and this, for us was just gobsmacking, because we had never seen someone that old with CF before. And so, for the first time, I thought well…maybe I could get a job too. Except it’s all very well wanting a job, but people who are willing to hire you when you’re disabled is a completely different story. I couldn’t get a job anywhere. I couldn’t work in the library, which I wanted to, because I was told: ‘The books were too dusty, and I would cough.’ Another doctor told me: “Well you know, you’re still standing here but it’s a childhood disease–you don’t have much time left.” But nevertheless, eventually, I did manage to get a job at Cole’s.
There was another point at a CF camp when another lady who was older appeared and her name was Jan and she was pregnant. And this was absolutely mind-blowing because we had always been told that those of us females with CF, we were infertile. And that produced another desire to have something else that I’d been told I couldn’t have.
At 17, I transferred from the PMH over to the adult clinic and I remember one of my first sessions with Uncle Gerry. I didn’t really know what to call him because he said I could call him Gerard or Gerry or Dr Ryan, whatever I was comfortable with, so I chose to call him nothing. But to everyone else, I referred to him as Uncle Gerry. And he found out much later and he was quite amused by it. But I said to him: I don’t want to take antibiotics all the time as a proactive thing, I’d rather save them for when I need them. And because I was honest that’s how our relationship started out, and it was quite a good one.
At 22, I fell pregnant, naturally, which was a bit of a surprise to everyone. I was referred over to King Edward Hospital and my not-so-special-specialist there decided that women with CF couldn’t carry to term and we certainly couldn’t go through labour. So, he put me in hospital when I was 33 weeks to try and talk me into having a C-section because that was going to be my best option. It was under the pretence of having additional physio to help me get ready for the birth, but it quickly became apparent that that wasn’t the case because the only physio who could actually do percussion could only give me 20 minutes a day. And the normal CF session was an hour a day at that time. She also wasn’t available at the weekends, so they wanted me to stay in all weekend with no physio. So, I discharged myself. On the Monday after that, Jarren, my son, decided that he was actually going to come early; women in my family tended to go early. And so, I went back to King Edward. I remember my gran driving me in and her driving was a bit erratic, as it was normally. I didn’t dare tell her that my contractions were then 4 minutes apart. I was a bit worried that she was going to get lost, so we drove to the carpark and I walked back and the stupidest thing I can remember is, they said: “Do you want a wheelchair to go up to labour?” and I thought, my waters have broken, I’m going to make a mess on the wheelchair. But that was just life to me as normal– you had to be strong to survive.
After Jarren was born, I’d managed to do that whole pregnancy without any IVs and things were going very well and it continued to go well, until he was 3. And when Jarren turned 3, I got a really bad sinus infection. And I couldn’t shake it myself. I was really fortunate by that time, they had what was called the ‘hospital in the home program’. And ideally, what was supposed to happen was that I was supposed to go into hospital for 3 days, they would put the line in, they would watch me give myself my own IV medications for a while, and then they’d send me home to do the rest of the treatment at home. But, as I explained, I had a 3-year-old–so put the line and send me home. Which is what my clinical nurse specialist ended up doing. And after that first argument (which she lost) we managed to avoid hospital for quite a long time, and I would just do the IVs at home.
I started studying when Jarren was little too, because I wanted to be a librarian and I didn’t think books being dusty was a good enough excuse. So, I was doing Librarian School, Jarren was little. And then, when he was 6…no, he was in year 3, so he was probably 7…I’m exaggerating a little, I went to bed feeling perfectly fine and I woke up and in my dreamlike state, I felt as if someone was squirting the back of my throat with a water pistol. And I couldn’t quite figure this out so eventually, I did get up and turn on the light and I was coughing pure blood. I ended up coughing, at that point, half a litre of blood. I turned the hot water booster on because I wanted to have a shower before I went to the hospital and I stayed awake for most the night while Jarren was in bed next to me. I fell asleep at 5:30 and woke up with the dreaded CF ‘morning cough’. And I then coughed up another 200mls of blood. I didn’t want to worry Jarren, because you know, small children tend to freak out a little. So, I got him off to school, I drove him to school and then I drove myself to the hospital. And they were doing ward-rounds when I arrived and they said: “Is it an emergency, Sandi?” and I said “Yeah, I think it might be,” and they said “What’s up?” and I said “Well, I coughed up half a litre of blood”. And then they all just flew into action and I got yelled at, for driving myself to hospital. And that was the first time I actually couldn’t go home, they made me stay in the hospital for the entire admission, which was a bit sad because I’d been used to my independence and doing things my way.
Coughing up the blood was a little bit of a reminder that, even though my CF had been relatively well-contained to that point, I’d progressed from being mild into a moderate stage of the disease. So, I decided it was time to do a few of the things that I’d always wanted to do. I started to write my first book which was called ‘The Mystery of the 65 Roses’, a play on words, and it was to be an educational book for Cystic Fibrosis; I had my eyes corrected with laser surgery; and my husband and I decided to do our first overseas trip. Having recently coughed up half a litre of blood, no one wanted to insure me. So, I had a bottle of Tranexamic acid which will stop excessive bleeding as my insurance policy in my carry-on luggage and strict instructions that, if I did start bleeding again, not to get on the plane for 24 hours until after it had stopped. But the trip went fine and there were no hassles. So, after that, we went to Bali, we went to Singapore and we went back to Thailand again.
In 2009, it was the year of the Swine Flu. And I got three separate flus. Back-to-back, there was no break between them. And, coincidentally, none of them was the Swine Flu. I know, because the health department rang me every time to confirm: “Yes, you do have the flu, we can confirm it’s not the Swine Flu”. Home IVs didn’t work, I ended up having to go into hospital, where they weren’t too sure what was going on. My lung function had dropped, and was sitting at 50%, which is quite a drastic drop. They did a CT scan and it looked normal. So, they thought, at that point, maybe it was just those 3 flus and that with time, I would recover. I probably never worked harder to get my health back than I did in 2009 because we were going on a family trip to Malaysia. It’s a trip that both my husband and I remember as ‘the one where Jarren bitched and moaned the whole way through’ because it was hot, there was strange food and he had to walk everywhere. And the one he now tells us that he remembers quite fondly!
And then in the January of 2010, we went to Egypt. It had been on my bucket list for years. It was probably on my bucket list before I knew what a bucket list was, as a child. But it was something that I never, ever thought that I would do. And Grant thought, because I’d had such a scare the year before perhaps it was time to do it, just in case.
When I was climbing inside the great pyramid (because I was determined to go everywhere that they were going to let me, and they weren’t going to let me climb the outside, so I had to climb the inside), I had a litre and a half of lung function at the time and that tunnel is very, very narrow and very, very hard to breathe in. So, it probably took me three times as long as everyone else to climb there, but I did it. And it took me a long time to catch my breath at the top so that I could attempt the climb back down which was just as physically hard. So, I’m really pleased that that’s something I did.
I was really thinking that I was starting to recover, that things were going to be ok. And winter hit, winter of 2010. And my lung function dropped to 30% with the first infection that came with winter. At that point, home IVs were no longer an option–they put me in the hospital. There was some protest. I’d tried 6 weeks of IVs before I agreed to go into the hospital. And for some reason, this admission, Uncle Gerry didn’t come to visit me at all. I’d hear him outside my door, I’d know that he was looking after my treatment. And I was joking with the staff, and I said, “Maybe I have to go down to the clinic on Mondays, if I want to see Uncle Gerry.” And on the last day, the ward-rounds came and went, still no Uncle Gerry. And in the afternoon, he popped in unexpectedly and the first words he said were: “This is a conversation I never thought I was going to have with you”, and my heart stopped because it’s the conversation you never want to have with your specialist. It’s the one where they tell you you’re out of options, there is nothing left they can do for you. And that it was time for me to start thinking about having a lung transplant. Regardless, I was still determined that my lungs could recover. I’d always recovered in the past. I’d always bounced back. And so, I walked, I did physio, I did nebuliser treatments. And I believed I was just going along with the transplant workup to humour them. Keep everybody happy, I’d go along with the transplant workup and when my body recovered, as it always did, it was just a few medical tests–it didn’t have to be wasted time. Halfway through the workup, my husband and I decided to go to Thailand. At this point, I was sleeping on oxygen at night. And my CF team, by this time, knew me and they knew there was no talking me out of it, so they were quite supportive of it. The transplant team on the other hand, had a slight hissy fit. But I wasn’t actively listed, so off I went. I dragged an oxygen concentrator on the plane with me and then when we got to Thailand, it didn’t actually work on Thai power, so I slept on this great big mound of pillows to try to breathe over the night. Koh Samui was flooded, and I’ve always joked that it was just as well it was flooded because I could only walk up and down one street. But it was a truth that was a little bit close to home. On Grant’s 40th birthday, we were walking along the beach towards a restaurant that we decided to have lunch at. And at this point, I could no longer walk and talk at the same time, I hadn’t been able to for a few months. Grant was carrying my handbag because, again, I was starting to not be able to carry things if I was walking. I’d only stopped to rest 3 or 4 times. And I thought I was doing so well. And then, an elderly couple, one with a Zimmer frame, one with a walking stick, overtook me like I was a snail. And it was there that I realised that I was out of options. The lung transplant that everyone had been telling me that I needed was actually going to be my only hope.
So, we came back home. I did my dental, which was my last clearance. And I got listed on the transplant list. The holiday for me, was my emotional readiness and it’s just as well that I went, because we found out when I got back that my lungs were beyond redemption. 38 years of harsh coughing had destroyed the muscle at the top of my stomach, and I was silently aspirating into my lungs every night. So, my lungs were getting attacked both from stomach acid and from my CF bugs. They didn’t stand a chance. Everyone agreed I would survive the operation to fix the problem. I had 0% chance of recovery. Around this time, Jarren and I had to have a chat. He was 14 at this stage. He was doing a lot of work caring for me, in that he would carry the shopping, he would go to the library and bring back all his books as well as all my books to read. Treated him a little like a pack horse, but that’s ok…called him my bag boy. His dad had offered to take him, but his dad lived in Sydney. It was always understood that in year 11 and 12 that Jarren would go to Sydney to live with his dad but this was at the end of year 9, and Jarren didn’t know what to do. And so, our conversation revolved around the fact that regardless of Jarren’s physical location, it wasn’t going to change the outcome. Either lungs would come, or they wouldn’t. And probably, if we’re being truly honest, what my mother said about this being my disease–it was. It was my disease; it wasn’t his job to be my carer. He was a 14-year-old boy and he didn’t need to watch his mum die. Because if lungs didn’t come, it wasn’t going to be pretty. I’ve watched my friends die before me; we all die the same way. It is not pleasant. And so, at the end of the conversation, he agreed that he would go and live in Sydney. As we were packing up his room, my lungs packed up again and I ended up in hospital. I had to go the airport to say goodbye to him, dragging my oxygen behind me. I got swabbed very thoroughly by the security guys because I couldn’t take the oxygen bottle through the x-ray–so they were on the ball, which was really good.
When I came out of hospital, I was on permanent oxygen at that stage. So, we got a portable oxygen concentrator and I tried to go to work. It lasted just over a week before I ended up in the emergency department, which is the only time I’ve ever had to go in through emergency. And there it was decided that maybe I should consider leaving work until after the transplant. I was in the hospital for a month that time. It was probably my longest admission. And the CF team offered that I could stay in the hospital if I wanted to wait for lungs. But I knew that it was very easy to stay in hospital: people bring you meals, the shower and the toilet are 2 steps away and that if I didn’t go home, I would probably die in the hospital. So, we went home. I had a 20-metre oxygen cord. My dog, Monkey, was 17 at this point and she was suffering some bad health as well. In the beginning it was ok because I’d start off on my 20-metre cord and she’d just follow me, but then she started getting a little bit tired in the legs so she’d sit on my oxygen cord if I started going too fast, to make me come back. As time went on, she’d also start sleeping on it with her paws wrapped around it, so she’d know if I moved. And so, my days followed a very similar pattern: I would have BiPap which is called non-invasive ventilation. But Monkey found it very invasive because it sounded like Darth Vader with a head cold. And there was this steady stream of air that emitted from it. So during the night, she’d snuggle up under my armpit, with her backside in my armpit so she didn’t have to have this airflow on her. In the morning, we would sit in bed like that, Grant would prepare all my IVs for me so I didn’t have to get out of bed to do them. Around lunchtime, we would go and have a shower, and then we would lie on the lounge, reading, until Grant got home. I lived like that for 4 months. I was literally hanging on by my fingernails. In my last few weeks at home, it took me 5 minutes to walk that 20 metres on my oxygen cord to go to the bathroom. I had 2 chairs in the house where I could sit and rest.
I never looked at my time on the transplant list as that I was waiting for someone to die. I was waiting for a family that would say yes. And, towards the end, I was getting really desperate, hoping that maybe, hopefully, someone would say yes soon because I didn’t know how much longer I had.
One morning, I woke up and the phone was ringing. That was unusual because no one ever rang my house phone, they all knew to ring my mobile. By the time I unhooked my BiPap, got my oxygen on and made my way to the phone, it had stopped ringing–as phones always do. And for some reason, I grabbed my mobile and I went back and I sat on the bed with Monkey and I can remember trying to decide…do I put the BiPap back on or do I wait another minute or two on the oxygen, just to see if my mobile’s going to ring? And my mobile rang. And it was Sharon, from the hospital, from Royal Perth and she said: “We’ve had an offer of lungs that match to you.”
It was what was called an emergency transplant, which I know sounds really strange. But it meant that the lungs that were offered came from a different hospital, so we were working on the hospital’s timeline. When the transplant happens at your hospital and the organs are retrieved at the same hospital, I would have gone in overnight and stayed overnight and waited. This is you need to come, and you need to come now. It was 9:30 and I needed to get there as soon as possible. So, Grant drove me in. I didn’t let many people know that I’d had the call. I left a message for my mum on the phone, I told Aunty Sue who was my clinical nurse specialist over at Charlie’s and I sent my Aunty Mary a text saying that I was sorry but I’d had a better offer and I wasn’t coming to lunch. And then I had to ring Jarren. It’s not easy to say goodbye to your child when you’re not sure whether or not you’re going to speak to him, but it was a conversation that needed to be had. He was really fortunate in that his teachers at his new school had said that he could carry his mobile with him. He knew that he was only allowed to answer if it was me, but unfortunately it was a relief teacher that day who then had a little bit of a minor hissy fit because his phone had started ringing and his step-brother had to run some interference with him so that he could take the call.
After they did all the tests, Sharon, my nurse actually had to wash me–I didn’t have enough energy at that point to wash myself in the shower, so she had to do the surgical wash for me. And then, Dr Mike came to see me and Dr Mike told me that I was actually that sick that in normal circumstances, they would ventilate me while the surgeon checked the lungs before they gave the go-ahead for the operation but I was too sick to be ventilated because if the lungs were no good, I was going to have to stay on the ventilator in ICU to wait for another offer. So the compromise that he made with me and the surgeons is that they would prep me for a surgery as far as they could, they would leave me, they would go and check the lungs and then they would come back and only ventilate me if we were going ahead. It’s often said that your life flashes before your eyes when you’re about to die, but when you’re lying prepped on a table, you don’t just flash–you’ve got a lot of time for reflection. The reality was, at best I maybe had 3 weeks left. This was the only shot I had. It was a gamble that wasn’t not work taking. The alternative was 3 weeks of pain, suffering and an inevitable outcome. For someone with CF, I was 38. The median age of survival at that time was 37. I’d had such a good life. I’d been to Egypt. I’d travelled. I had a child. I was a librarian and my book that I had written was far enough along that it was going to be published, regardless. I might not live to see my name on the cover, but my book was going to be published. And that was the actual bucket list item. The reality was, Jarren was 14 and I had given him 14 good years and he had good grounding and I knew he would be ok. I also knew that if I died, Grant was young enough that he could have found someone else and he could have had is own children too. So, if I took this gamble (which I decided to do) and I died on the table, I was ok with that. Because it had been a pretty phenomenal life. On the other hand, these lungs were my only chance, my only chance of having a future. If I woke up and I had these new lungs, it was going to be game on.