I was recently talking to a parent who's son had CF. I was totally gob smacked at what I was told.
So her son is 3 years old and was diagnosed fairly young. For the last 3 years he was using Hyp Saline and he was given the wrong mouth piece until the nurse told the mother that he wouldn't have been even getting any use out of the Hyp Saline. Only after 3 years did they realise they were giving her the wrong mouth piece.
Hold on...it gets worse!
The nurses in Temple Street said not to do physio or anything else other then blow into this blue pipe 15x3 times a day. Only do the physio if he gets sick!! I have never heard such utter crap in all my life. The whole reason to do the physio is so he doesn't get sick. The old saying goes "prevention is better then a cure" rings true in this instance.
How can a qualified nurse advise a PWCF mother to do this? I'm still shocked at it. Thankfully, because the mother talks to me, and I strongly believe that doing extra work like exercise, and especially running, along with physio and pep mask is the only option. Do everything, and everything 110%!
I'm turning 27 this month. Not a single IV or hospital admission for treatments (I don't count my seizures as an admission as I was out on a run and I was depleted of sugar!!!!!!!!!!!!!).
I feel that some people these days work just because they have to, and not because they love that job. If you don't love it you won't apply yourself to your maximum capability. I'm not saying that that particular nurse doesn't live her job, she's just clueless at home-care advice for CF.
I'd like to let everyone know that a PWCF called Katie Murphy is running the Women's Mini Marathon next month for CF (1 in 1000). She recently went onto Kalydeco and has turned her life around in the last few months. Running 10k with some 50,000 other women is a great achievement and shows what can be done! Beast Mode!!
It is CF Awareness Month this month. If your doing any exercise, and you have CF, then please tweet with #CysticFibrosisAwarenessMonth and let's get it trending.
My own running is going good. I'm running more then I have since the seizure 6 months ago. I'm doing tempo runs now. Tempo runs means running at a certain heart rate for a period of time. Normally your heart rate is between 70-80% of your max heart rate. So I did 20minutes with my heart rate at 170 BPM which got me 3.97 miles. So that's roughly 5 minutes per mile. I didn't think I was in that shape but I'm impressed myself!! Maybe I should start back racing. The last time I raced, I won it, and had a seizure the next day. Hahahaha.
I'm running around 50-60 miles a week with 3 strength and conditioning sessions in that as well. All in all it's going good.