I know that so many of you are wondering how I am feeling and if my lungs are any better after my most recent round of drugs. I started the nasties on the day after the Hawaii Ironman and each time I swallowed one, I was so scared of what I might feel like or look like. Ironically, after all of that fear, my side effects were pretty manageable. It was meant to throw my blood sugar into overdrive. They normally cause a moon face, weight gain, and water retention. None of this happened. I am not a big sugar eater to start with and I am sure that my daily consumption of fish oil (Eico Pro) helped moderate all of my levels nicely. But, my energy was threw the roof. I was extremely agitated and very hyper. I could not sleep. And then, I had wild and vivid dreams when I did sleep and I had a constant headache. So after 10 days, I went to St. Michael’s Hospital for my follow up to see if my lung function was back to 100%.
I am not sure if I should have been happy or sad but there was no change to my lung function. They were still at 81% – still down about 750 ml of oxygen – so the drugs did nothing! The good news was that I could stop taking them since they did not work! Hurray!!!! But the bad news was that I wasn’t any better and we were back to trying to figure out why my once healthy lungs – lungs that won 11 Ironman races – were now functioning at an almost recreational level!
So we are back to assuming that I must have pseudomonas growing in my lungs and I will go back to my Tobramycin inhalation – twice per day for 20 minutes by nebulizer. But the silver lining is that I thought that they might admit me to the hospital for IV antibiotics. Instead, I get to inhale the IV antibiotics at home. I am not sure how long we will do this for – I did it for 4 months from February to June earlier this year – so that obviously wasn’t enough. Regardless, I am just so happy to be off those drugs! And the reality is that I have cheated CF for the past 20 years while I ran around the world racing in a bathing suit and winning races! I have been so lucky and so blessed. Do not worry or feel sorry for me – I am still swimming, biking and running – just not as fast and hard as I did a year ago which means that I celebrate the freshly fallen leaves and the sun shining way more than before.
I often look back at Subaru Muskoka Ironman 70.3 and can’t believe that I felt so unwell and wonder why I even started that race. But as I said then and I repeat now – I still had 81% of my lungs working and that is a lot more than most people with CF. And so for those people with CF that struggle to breathe when they climb stairs or take a shower – I got to race – maybe not like a professional but like a human being!
And that brings me to an article that I read in the paper today. There is a woman named Natalie. She has CF and she is very sick. She only has about 18% of her lungs functioning. She is waiting for a lung transplant at St. Michael’s Hospital. If she doesn’t get a new pair of lungs, she will die. This will not happen to me, but it may happen to her. All it takes is for someone to sign their donor card – if one person dies at St. Mike’s and they have signed their donor card, then she might be reborn with a new pair of lungs. Please read her story – it makes me feel so lucky. We are all so lucky.
In the meantime, I am swimming, biking and running for Natalie! Be well.