31 Days of Cystic Fibrosis: Part 6 May 26th – 31st

May is Cystic Fibrosis awareness month, and this year I’m doing 31 Days of on Facebook and Instagram. Please feel free to follow me.

May 26th – May 31st

31 Days of Cystic Fibrosis. May 26
Survival is a team effort
My decision to stay at home did not mean I was the sole person responsible for my health. I was surrounded by a team of people that were working together to keep me alive.

On a practical level, Mum was chauffeuring me to multiple appointments each week. Grant was preparing food, in charge of the hygiene requirements to keep my various medical equipment sterile, and in the last few weeks he took on the task of sorting out my IV medications and pre-preparing them for me. (All the while, both of them still had to attend their day jobs.)
Dale, my homecare worker from Cystic Fibrosis WA, came twice a week to take care of light housework and assist with physio treatments. John, my homecare nurse from CFWA, came once a week to change the dressing on my port.Physio staff from both hospitals compiled exercise and muscle strengthening programs for me – which I refer to as “pilates in bed”. In addition, Jamie did my lung function at clinic until it dropped that low that measurement pointless. (My last official measurement indicated that only 10% of my lungs were working.) Also at clinic, Paul the dietician kept an eye on my calorie intake and weight loss while Dr Joey kept an eye on my blood sugar levels.

Sue, or Aunty Sue as she is affectionately known, our Clinical Nurse Specialist, looked after my various scripts (including getting them filled) along with arranging my weekly tub of supplies full of syringes, saline, alcohol wipes etc and had them ready so that each Monday Mum could exchange an empty tub for a fresh one. Sue would also take blood from my port, and collect sputum samples to save me the walk to Path West. (Sue is an incredible woman and has an uncanny ability to read her patients. The less attention she pays to you the better, when she starts doing all of your fetching and carrying you know things are getting serious!)Uncle Gerry saw me in clinic once a week and would then liaise with Dr Mike to keep Royal Perth updated with my status (important for your ranking on the transplant list.)Behind the scenes were people I never saw. The pharmacist checking my various medications to make sure there were no contradictions, pathology staff checking all my various samples and various researchers over the world who developed new medications and technologies that had gotten me to this point (the new improved enzymes, ciprofloxacin, azithromycin and Pulmozyme).

Bonus Fact: During this time, I had one job. All I had to do was keep breathing. It may seem easy, but the effort required to lounge around in bed all day and continue to breathe was causing me to lose ½ kg a week despite my calorie intake being three times the daily recommendation. I was clinging to life by my fingernails.

31 Days of Cystic Fibrosis. May 27
Friday, May 27th 2011 – Transplant
Grant had gone to work, and I was reading in bed, Monkey tucked in my armpit. Our house phone rang. It rarely rings, most people knew to call my mobile. Normally I wouldn’t have worried, but I had a feeling this phone call was important.

By the time I’d unhooked my Bi-Pap, hooked up my oxygen and made my way to the phone it stopped ringing. I shuffled back to bed and sat for a moment staring at my mobile. As I weighed up the effort it would take to unhook my Bi-Pap versus waiting a few more moments to see if my phone would ring, it did.
Lungs had been offered. Lungs that had been matched to me.
When Grant and I got to the hospital, there was a sobering truth to face. In ‘normal’ circumstances, I would be prepared for surgery while under general anaesthetic, then ventilated while the surgeon checked the lungs to confirm he was happy for the surgery to proceed. Dr Mike told me my lung function was at the point that if I were to be ventilated, and the donated lungs did not pass the surgeon’s inspection, I would need to live in ICU while I waited for another offer. The compromise was I would go through and have all the various lines installed and primed, and would only be ventilated if the surgery was to proceed.
It is said that your life flashes through your mind as you’re about to die. When you’re primed for surgery and waiting on your lonesome, your life doesn’t just flash, you have time for reflection. I’d had a good life. I knew I was rolling the dice for a chance to have a future, knowing that I might not be strong enough to survive the surgery. I also knew that these lungs were my only hope.

Bonus Fact: On the 27th May 2011, it was 65 Roses Day, and my Aunty Mary had been planning to take me to have lunch with my Gran. I sent her a text declining her invitation due to having a “better offer”.

Extra Bonus Fact: I wanted to have a Facebook status of “Hi Ho, Hi Ho – it’s off for lungs I go..” posted after the phone call to confirm the surgery was going ahead. “He Who Was in Charge of the Communication Device” vetoed it.

Extra Extra Bonus Fact: My expert updo (pictured below) was skillfully arranged by my ICU nurse who used a rubber glove because we had no hair lacky available.

Extra Extra Extra Bonus Fact: Dr Mike had I had a conversation about what to expect in the ICU, and he asked if there was anything in particular I was worried about.
“Yes,” I said, “I’m going to need that ventilator tube out ASAP.”
“Why the tube phobia?” he asked.
“No phobia, but I think it’d be easier to complain without it.”
He didn’t look amused.

31 Days of Cystic Fibrosis. May 28
Monkey
At home, Monkey was slowly deteriorating. Grant asked my team when I would be allowed to see her, as he was worried she wouldn’t make it to see me come home. The clearance, he was told, would be given when I had all tubes and drains removed to minimise the infection risk. It was a goal to work towards.

8 days after my transplant, I had my final chest drain removed and on the 9th day I was cleared to leave my room. On the 10th day, Grant took me down to the carpark in a wheelchair where Monkey was waiting.
My beautiful girl, who had stuck with me through thick and thin, who over the years had spent many nights in the bathroom sitting next to me when my enzymes hadn’t worked quite how they should, who had stayed up late to sit with me while I injected my last dose of IVs’ for the evening, and who had been my constant companion ‘looking after’ me while I’d been waiting for the call that would change my life, was now too weak to jump out of the car yet at the same time was practically jumping out of her skin with pleasure to see me.
So, I gingerly climbed in the back seat and sat with her. My Monkey, who had never ever liked anybody to breathe near her, sat thumping her tail and sniffing my breath. Because my breath was carrying a message, it told her I was no longer dying, and because of this, she knew that she didn’t have to hang on to look after me any longer.
Bonus Fact: My oxygen cord had a limit of 20 metres. In the beginning, I could walk a little faster than Monkey could, so she’d sit on my oxygen cord to make me wait for her. Towards the end, as she was sleeping more and more, she started sleeping with my oxygen cord wrapped around her paws, so she could wake up if I moved.

31 Days of Cystic Fibrosis. May 29
Life Post Transplant

On the 9th day post-transplant, I had my first shower standing up in seven months. Afterwards, I remember looking at my battered body in the mirror. I was covered in scars, dressings and bruises and all I could think about was how great life was. Because I could breathe.
I was filled with a simplistic pleasure in knowing the enjoyment of something that most people take for granted. I could breathe, walk, and talk, all at the same time again.

These lungs are magnificent. They do what lungs are supposed to do, and they do it naturally and without effort.

That’s not to say that my recovery wasn’t without effort. I put in hours at the gym, followed by hours of walking. On the 3 month anniversary of my transplant, I walked 4kms in the City to Surf. It took me 56 minutes, which may not seem like much, but before my transplant, I couldn’t walk the full 20 metres on my oxygen cord without stopping.

Full recovery including adjusting to life post-transplant and the various side-effects of my new medications took 12 months. But every second of that recovery was worth it because even now there is still so much joy in simply breathing.

Bonus Fact: I have done so much in the last seven years, I’ve travelled, received industry awards for my library work, published two books and seen Jarryn turn 21. All of this possible because a family said yes to organ donation.

31 Days of Cystic Fibrosis. May 30
A Transplant is a Trade Not a Cure

On the surface, it looks like my transplant provided a cure, but that’s not the case. 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. Essentially 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 my lymph nodes on the left side of my body had enlarged. However, it turned out I had 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.

Bonus Fact: As far as my team are aware, I am the first person in Australia to contract this fungi after a lung transplant. There is no data on surviving this fungi on a long-term basis. Because of this, they don’t know if my funky fungi has been eradicated or if it’s dormant and may resurface again. The guys in the white lab coats were all very excited to have an opportunity to study something they had never seen before and nerded out over the results of my bloodwork, establishing that I contracted the airborne version of the funky fungi, and it then migrated to my blood, and not the other way around.

Extra Bonus Fact: Post-transplant lymphoma is caused by the very medications that keep transplant patients alive. Everything is a trade, always.

31 Days of Cystic Fibrosis. May 31
The Future

I hope that by sharing my story, I’ve raised a little awareness about what it’s like to live with Cystic Fibrosis. Now’s the part where I ask for a little help.

Recently, the first medication to treat the cause of CF was developed. It was unique in that every prior medical advancement had only treated the symptoms of CF. Getting Kalydeco on the PBS was a mammoth effort, but Kalydeco only treated a specific mutation of the CF gene. Orkambi is the latest medication. It treats the most common mutation of CF, identified as Delta-F508. It’s my mutation. I have a double Delta-F508 mutation.

As a person with Cystic Fibrosis who is post-transplant, Orkambi can’t help me – but there ARE people it can help, if only it were listed on the PBS. I can’t imagine how heartbreaking it must be to know that there is a treatment that doesn’t merely improve the quality of life but extends it, and not being able to access it.

To help those who can be helped by Orkambi, please consider adding your name and comments to the Pharmaceutical Benefits Advisory Committee
You’ll find Orkambi listed under LUMACAFTOR

http://www.health.gov.au/…/Cont…/PBAC_online_submission_form

Cystic Fibrosis Western Australia has played an important part in my life. As the end of the financial year looms closer, if you haven’t chosen a charity to donate to, I hope you’ll consider CFWA – they’re doing important work. Their mission is “Lives Unaffected by CF” Without their help, my life would have been significantly harder.

https://donate.cfwa.org.au/

And finally, 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 huge part in families consenting to organ donation. It’s a hard conversation to have, but having that chat can save lives. It saved mine.

Bonus Fact: I have been extremely fortunate to arrive at May 31st 2018, aged 45, with the opportunity for more great years ahead. Many children born with CF are not so fortunate as the average life expectancy remains at 38 years.

Thank you to all the wonderful people who have helped me on my journey and without whom I would not be here to share this story. Thanks also to all of you who have taken the time to read my daily posts and share my trip down memory lane.

Finally, and most importantly, to my donor family, as always my eternal thanks and love for saying yes to organ donation in your time of loss.

XXX
Sandi

Missed the start of this?

Part 1 starts here

31 Days of Cystic Fibrosis: Part 5 May 21st – 25th

May is Cystic Fibrosis awareness month, and this year I’m doing 31 Days of on Facebook and Instagram. Please feel free to follow me.

May 21st – May 25th

31 Days of Cystic Fibrosis. May 21
Setting Off on the Road to Acceptance

I went home from hospital with an oxygen concentrator and a referral to the transplant team at Royal Perth. At that moment, an official sleep study hadn’t been done to meet the requirements for state-provided oxygen therapy, so the hospital provided me with a concentrator so I could continue to sleep with supplemental oxygen.

Although I had worked hard to maintain my health before, I never worked harder than I did in the second half of 2010. Because with time and effort I had ALWAYS bounced back and this time would be no different. After work I walked around the block, initially taking a stroll with Monkey. Monkey was 16 and her health failing, all too soon I had to walk alone because even my slow pace was too fast for her.

I did mini bouts of physio up to six times a day and nebulisers galore, trying to clear the gunk that was clogging my lungs. This extra airway clearance seemed to be working, as my sputum production decreased, but still, my lungs could not breathe.

All the while, I continued working, attending clinics at both Charlies and Royal Perth as well as transplant workup appointments.

Bonus Fact: The transplant team at Royal Perth (now Fiona Stanley) has the official name of Advanced Lung Disease Clinic. I like to joke that this meant that the team themselves were ‘advanced’ in treating Lung Disease, because the alternative wasn’t worth contemplating.

31 Days of Cystic Fibrosis. May 22
Koh Samui

In the midst of my transplant workup, Grant and I decided to take a quick
trip to Koh Samui. Once I was officially listed for transplant, I would be limited to the Perth Metro area, so this was a last chance getaway.

It turned out to be the trip I needed to prepare myself emotionally for transplant. Koh Samui experienced heavy flooding right before our arrival, and it meant there was only one street we could walk. I’ve often joked that it was lucky because I was only capable of walking one street. But it’s a truth that hit close to home.

Out of my own environment, it was an eye-opener to realise how much I was struggling to do everyday tasks. Then, on Grant’s 40th birthday, we walking up Chaweng Beach heading for a restaurant to have lunch and not only did I have to stop and rest regularly, but I was also overtaken by two elderly people with walking sticks.

It was the moment that I realised I was out of options. This wasn’t a nasty infection that had lingered way too long. This was my body losing the war against Cystic Fibrosis.

Bonus Fact: I returned from Koh Samui emotionally ready to get listed for transplant. It was fortunate timing, my workup tests for transplant had revealed why my lungs had declined so dramatically and also that recovery was out of the question. I had a chronic case of silent aspiration, meaning stomach acid entering my lungs was the cause of the inflammation that was making it so hard for me to breathe. Both the transplant team and Uncle Gerry agreed, I may survive the actual surgery to correct the silent aspiration, but my chances of making it through the first three weeks post op, sat squarely on 0%.

Extra Bonus Fact: I returned to Chaweng Beach in April 2017, and repeated that walk with new lungs. This time I didn’t need to stop and rest, and I talked while I walked. Simple things have far more meaning post-transplant.

31 Days of Cystic Fibrosis. May 23
Working Towards Transplant

An official placement on the transplant list also meant the acquisition of a shiny new pager that I had to carry everywhere. Working days were a blur of treatments, followed by work, dropping Jarryn at Soccer practice, home for treatments, then back to collect Jarryn before bed. There wasn’t time for anything else.

My hair grew progressively shorter. I struggled to breathe in the shower, and shorter hair was easier to care for. In amongst my daily work routines, I tried to write detailed instructions for my replacement, but these were limited to policy, procedures and standards because I didn’t know how long I could keep working, or when a call might come.

As 2010 came to an end, I started using oxygen full-time. It meant that I was officially smack bang in the middle of Respiratory Failure Stage 1. I wanted to keep working as long as possible because I knew that being active would be a key component if I was to survive. Despite my willpower, in 2011 after only being back at school for just over a week I ended up in hospital.

My stint in Respiratory Failure Stage 1 was short. At night, supplemental oxygen was no longer enough as my lungs could no longer rid themselves of carbon monoxide. I started to sleep on BiPap. Clinically my diagnosis was Respiratory Failure Stage 2, and my medical team told me that if I wanted, I could stay in hospital while I waited for the call.

Bonus Fact: During this time Jarryn had to make a decision. Did he want to stay here in Perth with me, or move to Sydney to live with his Dad? A word from me would have seen him stay. Perhaps a bit of my mother’s parenting rubbed off on me because I reminded him that this was my disease and it was not his job to be my carer. There was nothing he could do to change the outcome, and an offer of donated lungs was not dependant on his physical location. Maybe, just maybe there was more than a touch of selfishness in my words. I knew how this was going to end if an offer for lungs did not eventuate in time, and it wasn’t going to be pretty. I didn’t want Jarryn to have to watch me die.

31 Days of Cystic Fibrosis. May 24
Staying at Home

After four weeks in hospital, I went home. Physically, it would have been easier to stay in hospital, but I knew if I didn’t keep challenging myself, I would go downhill quicker.

The days merged into weeks, then months as I waited for the call that would change everything. I spent my mornings in bed, Bi-pap assisting me to breathe, as I read with Monkey at my side. At mid-day, I’d switch over to the oxygen concentrator with its 20-meter cord, and we’d slowly make our way to the kitchen for brunch. Next, Monkey would stretch out on the bathroom tiles while I showered. After that, we’d head to the lounge-room. Either we’d share the couch, or she’d lay on the floor beside me. This routine was punctuated by attending various medical appointments and visits from Dale, my Cystic Fibrosis WA homecare worker. Each day was physically harder than the last until it was no longer safe for me to drive any distance and my Mum had to chauffeur me to my clinic appointments and the gym.

Bonus Fact: Although the technical term for Bi-Pap is non-invasive ventilation, Monkey found this treatment rather invasive. Even under the best of circumstances, she didn’t like me to breathe near her face. Now, with my ragged breathing sounding not dissimilar to Darth Vader with a head cold, she’d found something she could not tolerate. But it was her duty to ‘look after’ me and she refused to let this get in her way. Her solution, as I lay in bed reading was to snuggle her backside under my armpit, so the steady stream of air emitting from the Bi-Pap mask was well away from her face.

31 Days of Cystic Fibrosis. May 25 (It’s 65 Roses Day today!)
The Mystery of the Sixty-Five Roses

In my days as Library Manager for the Swan Education Resource Centre, inclusivity became a topical buzzword. As I gathered books and other resources for a special section to house together, it quickly became apparent that Cystic Fibrosis was woefully underrepresented in the collection. Next, I searched high and low for books that both explained CF and could be used in an education setting that were available to purchase. Resources were either outdated or Americanised, So I decided to write my own.

The obvious organisation to approach was CFWA. Despite the fact that CFWA wasn’t a publishing house and that I was an unknown and unproven writer who didn’t have an idea let alone a single word written on paper, I walked away from a meeting with an agreement that CFWA would publish my book. It was a journey that would take six years and a new set of lungs to complete.

In May 2011 I didn’t know if I’d live long enough to see this book in print, but I knew that if I died, the project was advanced enough to continue without me.

Bonus Fact: The dedication in The Mystery of the Sixty-Five Roses reads as follows: “Dedicated to Dr Gerard Ryan, MB BS, RRACP (Uncle Gerry) and Sue Morey, OAM, FRCNA (Aunty Sue) for over twenty years of outstanding health care, even when faced with a (sometimes) difficult patient.”

I know they’d both say they were just doing their job, but when “just doing your job” means the difference between people living and dying, a book dedication does not even come close to an adequate way to say thank you.

 

31 Days of Cystic Fibrosis: Part 6 May 26th – 31st

31 Days of Cystic Fibrosis: Part 4 May 16th – 20th

May is Cystic Fibrosis awareness month, and this year I’m doing 31 Days of on Facebook and Instagram. Please feel free to follow me.

May 16th – May 20th

31 Days of Cystic Fibrosis. May 16
Hemoptysis

Years ago, I had watched Julie cough mouthfuls of blood and casually spit into the sink as if it was no big deal. So when I first saw bloody streaks in my sputum, I wasn’t overly concerned. At times there was more than streaks, and sometimes those episodes lingered longer than I would have liked.

One night I went to bed feeling fine. I woke from a deep sleep in a coughing fit. In my dream, someone was spraying the back of my throat with a water pistol (everyone else has strange dreams too, right?). Eventually, I woke up enough to realise that there was no water pistol and that I had become a bleeder.

In the morning, I took Jarryn to school and drove myself to the hospital. Once there it appeared I was out of options and HITH was off the table. Hospitals are very particular about measurements, preferring the use of plastic cups over tissues. My first bleed was over a thirty hours period, and included six separate incidents. Luckily my Mum took care of Jarryn while my fabulous neighbours, Wim & Lisa looked after my dogs.

I was a bleeder for the next three years. When awake, the commencement of a bleed was easy to identify. There is a particular sensation, hard to describe, but a hybrid feeling that manages to both push and pull at the same time. After that, you can both feel and hear the crackle of blood pooling in your lungs. So I call it, ‘snap, crackle and pop’, It would strike without warning, seemingly when I was feeling fine, however, an infection had been bubbling away in the background. Once, Jarryn had to pass me tissues to spit into after ‘snap, crackle and pop’ struck while I was driving.

Three years after my bleeds started, they stopped.

Bonus Fact: As it turns out, it’s possible to cough up over 800ml of blood in thirty hours, and like the energiser bunny, keep on going.

31 Days of Cystic Fibrosis. May 17
Travelling with CF

My first bleed was a trigger to change some things in my life. A reminder that the reasonably good health I had enjoyed up to this point would not continue forever. It was during this period I had my vision corrected with laser surgery, I began to write ‘The Mystery of the Sixty-Five Roses’, and I started to travel overseas.

Although I’d love to be able to be a spontaneous traveller and go on a holiday at the drop of a hat, as with everything else when it comes to CF, travelling requires careful planning. Letters from my doctor need to be organised (The first contains a list of all the medications I’m carrying for customs, and the second details my medical history for any doctors that may need to treat me while I am overseas). In addition to my regular medications, I always carried strong oral antibiotics and tranexamic acid (used to stop excessive bleeding). My small pharmacy always travelled with me as carry on luggage.

Between 2005 and 2008 I visited Thailand twice, Bali and Singapore. The difference in environment and pollution levels always saw my lungs struggle for the first few days as they adjusted. Ventolin was my best friend on these trips.

Bonus Fact: Travel Insurance companies have strange ideas regarding CF and travel. They place a lot of weight on hospitalisations or the administration of IV antibiotics in the last 12 months. A tick in this box is highly likely to result in a rejection for cover of CF as a pre-existing condition. Ironically, right after a course of IV antibiotics is when a person with CF is most fit to travel.

 

31 Days of Cystic Fibrosis. May 18
2009. The Year of Swine Flu

I started 2009 with a lung function that was 75%. During winter I dropped to 30%, and by the end of the year, I managed to raise it to 45%. (Predicted lung function is determined by your height and age and helps your medical team assess what percentage of your lungs are working.)

Despite having had the flu vaccination, I contracted the flu three separate times that winter. One on top of the other, with no break in between. They gave my lungs a beating.

I spent nearly the entire winter on IV antibiotics and ended up spending two weeks as an inpatient so that the team could do additional testing. Nothing conclusive came of these tests, although my CAT scan showed significant inflammation in my lungs. As there were no additional areas with scarring to indicate the damage to my lungs was permanent, this was good news. Both my team and I chalked it up as a bad winter that with time and effort I should be able to recover from.

In the November we took a family trip to Malaysia, this time I found it more difficult to cope with the air quality, but I still managed to enjoy the holiday.

Bonus Fact: The Swine Flu was rampant that winter, but as it turned out, none of the three flus I contracted turned out to be the Swine Flu.

Extra Bonus Fact: This is the holiday that Grant and I remember as the one that Jarryn bitched and moaned the whole way through. Apparently, it was hot, there was strange food and he had to walk everywhere (truly tragic stuff!) Jarryn, however, recalls this trip ‘fondly’.

 

31 Days of Cystic Fibrosis. May 19
Egypt

I kicked off 2010 with a holiday in Egypt. It was something that had been on my bucket list since I had been little. Given my scare the previous year, Grant had decided it was time to make this a reality instead of an item on a wish list.
I was determined to go everywhere and do everything that was ‘allowed’ and since climbing the outside of the pyramid was off limits; I joined the queue to use the Robber’s Tunnel and to climb inside the Great Pyramid of Giza to see the King’s Chamber. The tunnel was small, hot and crowded. The air quality was virtually nonexistent, making that climb was hard, but there was no way I was giving up. I couldn’t catch my breath the entire way and had to stop to try to gasp more air into my lungs every few metres. But I made it.

My second challenge was the at the Valley of the Kings, once again hot and crowded, and as most of the tombs had fans whirling to increase the air circulation, it was also dusty. Not being prepared for all the dust whirling around in an enclosed space, I had to explore the tombs with my nose and mouth covered, making it even harder to breathe.

Bonus Fact: It took me a few minutes a regain my breath when I finally reached the King’s Chamber in the Great Pyramid. When I wandered over to have a look in the sarcophagus, a man who had been laying down inside it unexpectedly popped up and yelled “Boo”, making me jump, which in turn, made all his friends laugh.

 

 

31 Days of Cystic Fibrosis. May 20
The chat you never want to have with your doctor

After my Egypt trip, I managed to raise my lung function to 50% and then winter arrived, bringing with it another bout of infections. The hard work I had done was wiped away, and my lung function dropped right back to 30%. This time HITH didn’t work at all, and after four weeks, I was admitted to Charlies. I spend the first few days on oxygen, then only required oxygen at night as I slept. For the first time, the team got me to try prednisone which proved extremely effective in reducing the inflammation in my lungs. My veins would no longer cope with a PICC line, so it was time for a more permanent solution and get a port-a-cath inserted near my left clavicle.

Nearly the whole admission past without me seeing my specialist (affectionately known as Uncle Gerry). I knew he’d been making the decisions for my treatment plan, but I hadn’t laid eyes on him myself. I joked with the staff that perhaps I should head on down to the clinic and make an appointment time.

The day before I was discharged, ward rounds came and went as usual, then that afternoon Uncle Gerry popped in unexpectedly to have a chat with me. It was, he said, the chat he never thought he would have to have with me. He thought he’d retire before I reached this point. And my heart stopped beating for a moment. Because it was the chat you never want to have with your doctor. The one where he tells you that there’s nothing more he can do. There are no other treatment options to try. That’s it time to make a decision and be referred to the transplant team.

Bonus Fact: When Jarryn was two there were rumours going around clinic that Uncle Gerry was about to retire. I asked him if they were true, and he replied he hadn’t decided yet. So I said, “I’ll make you a deal. If you promise not to retire, I promise not to die on your watch.” He just laughed at me and didn’t commit to anything.
Six weeks after my transplant I went back to say goodbye to my old medical team, I was planning to remind Uncle Gerry that I’d kept my promise (by the skin of my teeth perhaps) and hadn’t died on his watch. But he beat me to it. The first thing he asked was, “Can I retire now?”

31 Days of Cystic Fibrosis: Part 5 May 21st – 25th