Monday Special – The Life of a Cystic Fibrosis Patient

Mondays aren’t a regular posting day for us but, when we do post on our blog on a Monday, it’s for a ‘Mega Monday Announcement’ and signals some amazing news for The Write Romantics such as a signing with an agent, a publishing deal, or a book release. Today is not a Mega Monday Announcement. It’s something very different and very moving.

As regular followers will know, we launched our debut anthology of short stories – Winter Tales: Stories to Warm Your Heart – last month. We’re incredibly proud of this anthology because, not only is it the first time in print for most of us, it’s raising money for two amazing charities – Teenage Cancer Trust and Cystic Fibrosis Trust.

We’ve been really touched by the support of our guests and many of their friends and contacts. A couple of weeks back, Jane Turley who runs the humorous blog ‘The Witty Ways of a Wayward Wife’ posted a more serious blog post introducing us to Derrick LoRusso, a Canadian teenager. It moved us all so much that we had to get in touch with him and invite him onto our blog. Thank you, Derrick, for sharing your courageous story with us.

The Life of a Cystic Fibrosis patient

Derrick in Paris
This is a photo taken of me a few years back. I was in Paris, notably at the base of Arc du Triumph while vacationing with my parents.

The first thing I ate there was a Nutella stuffed crepe. My dream of eating one in the middle of Paris came true. I can’t argue with French logic of loving chocolate and Nutella!

On the outside it would appear I can do anything. You wouldn’t guess I was diagnosed with Cystic Fibrosis, Crohn’s disease and even cancer.

This is a photo of my lungs taken only three months ago.

Derrick lungsOn the bottom left is a big white blob. This blob is a virus slowly taking over my airwaves. Which makes it extremely difficult for any CF patient to breathe normally. It is a constant battle of survival. According to my doctor, the only solution is to perform a bronchoscopy and have aggressive treatment of antibiotics to kill a virus that should of died back in 2008.

For me this CT scan image said more to me than any doctor or therapist could say. It was only a year ago I was hospitalized due to a scare of a virus threatening to take my life, and the complete accident of finding a tumour on my pancreas and having half of it removed.

My day starts with a fit of coughing. Only is this quelled when I use one of the three inhalers I take daily. Beginning with Ventolin, which helps opens up the airwaves. After an hour of letting it work, Pulmicort aids mucus to work it’s way up. The third, Symbicort, does the work of both when real emergencies arise. This being when I feel as if I’m being strangled on the inside, and am unable to even grasp for air without coughing or wheezing heavily.

Come meals I have to take enzymes. Cystic Fibrosis has killed any chance of my body absorbing nutrients and helping digest properly. Enzymes absorb every nutrient from the food I eat. Along with lactose aid, multiple vitamins of various types finish off breakfast alone. In total I will take over 300 pills in just a month for breakfast alone. By year end I will have taken more than a 1200 pills total. Not as hard to swallow for me as you think.

Once I have eaten, therapy takes up most of my morning. There are exercises we do to not only aid in breathing even a little better, but force stubborn phlegm out. These exercises have recently taken so much wind out of me, it’s become impossible to even do them properly. When that’s complete, on to the actual therapy of inhaled medicine called Tobramycin. The medicine is in liquid form, and must be evaporated into a mist and inhaled via a compressor attached to a nebulizer. This alone can also be painful, sometimes I don’t even finish the therapy due to extreme uncomfortable irritations in my chest and plenty coughing up of sputum. I do this twice a day, everyday. It is not the medicine at work doing this, it is my body trying hard to exhume the virus constantly, and slowly, drowning me.

I currently have three viruses that will forever grow within me. Pseudonymous can be killed off and can stay at bay for awhile. Microbacterium is permanently within me, however lies dormant unless triggered. The third, called Allergic bronchopulmonary aspergillosis (ABPA,) presumed gone in 2008, has returned. The problem lies within the Microbacterium and ABPA. Were the doctors to treat one, the other will be triggered, and cause unseen consequences and possibly even worse ill health. It seems the only way to combat the virus is to literally vacuum out the upper airwaves and have three days of therapy on intervenes medicine.

Even with all these problems, and more to surely come, I do not let these get the better of me. I finished college and became a freelance journalist, and am planning on a vacation in October to return to beautiful Paris, and even see London. To me nothing says victory over impossible odds than to fly halfway across the world, and see France, a country my ancestors came from. That is the only cure I need; the freedom to enjoy life.

Derrick

Anthology coverThe Write Romantics send their thoughts to Derrick and his family and wish him well with his travels next year. We’re delighted that we’ve chosen Cystic Fibrosis Trust as one of the charities to receive funds from the sale of Winter Tales to help individuals like Derrick and Alys’s three-year-old nephew. Thank you, Derrick, for sharing your experiences with us and helping bring to life this disease that we knew very little about until now.

Winter Tales is available via Amazon now in paperback and e-book formats.

Jessica and Alys on behalf of The Write Romantics

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7 thoughts on “Monday Special – The Life of a Cystic Fibrosis Patient

  1. Thank you for coming onto the blog, Derrick, and for sharing such a personal story.
    ‘The freedom to enjoy life’ is something that we often take for granted, so it was humbling to read your account of what it is like to live with Cystic Fibrosis. I’m so happy you made it to Paris and that you hope to go again…not sure about the Nutella pancakes, although my daughters would love them!
    Have a wonderful Chrsitmas and a very Happy New Year,
    Helen R 🙂

  2. Thank you for such an informative post Derrick and I wish you well in your travels. I also hope that Winter Tales goes some way to helping you and other sufferers.
    Happy Christmas to you and your family.

  3. That is such a moving post Derrick, I never really knew exactly what managing CF meant, but I can see what a challenge it is for you and your medical team. Its lovely that you’ve been able to work with it so well and even been to Paris. I hope the anthology brings in enough to help research even more. Have a lovely Christmas, lynne

  4. As the others have said, Derrick, this is a truly inspirational post and I hope you get to eat Nutella filled crepes in Paris enough times that you are bored rigid with them and visit all the places you dream of seeing. If the anthology can make a tiny jot of difference to the bigger picture, then I think we’ll all be over the moon.

  5. You sound very determined to try to live a normal life, Derrick, just as my grandsons do. Luckily they keep reasonably well thanks to their drugs, though Morgan often has a spell in hospital and continuous treatment at home. I wish you well for the future.

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