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
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.
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
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?”