Anytime I say something about my PFT being down, or that I'm sick, I always get some sort of reply of "you don't know what sick is like. You haven't really been sick". What I always think in my head is firstly, shut up, secondly, why does another person with CF try to bring another PWCF down when they actually live a life outside of hospital. Is it jealously? Is it regret that they now think back at when they were being rebellious and stopped taking their medication, or skipped it for a while because they "forgot"?. Maybe I don't know what really getting sick is like, but that because I work my arse off, and I'm certain, I work it off more then any other CF in the world. I don't want to sound arrogant, or cocky, but it's the way I feel. Actually, can you think of any other person who runs 10 times a week, and does 2 days strength and conditioning work, while doing a physically demanding job?
Finally. Why do you think I run? Because I love it? Yea, that is partially to do with it. But doing something 10 times a week can soon become monotonous. The other part of my reason for running is so I don't have to stick an IV in my arm and get visitors from loved ones while I'm in hospital. It's no surprise that the new CF Unit in Vincent's has a treadmill in every room.
So while the haters are sending me emails, or commenting under my stories from their hospital beds, and I'm lacing my runners up to go on a run. Instead of exercising your fingers on your keyboards, why don't you start exercising your legs on the treadmills beside you. Have a little hope in your life and stop begrudging other PWCF who are actually keeping healthy.
If you feel like you get annoyed or angry about my story then don't read
So here's the part about my PFT (Pulmonary Lung Function)
For the first time since 2006 my lung function went down. My FEV1 is now 74%. It's normally around 86-90%.
The reasoning behind this is from the crazy allergic reaction to Aspragillus that I recently found out about and it's caused havoc with me. I only have one explanation for it, and that is being exposed to it down in a forest in Waterford. I could be wrong but that's the only thing I can think of.
I have been running 50-70 minutes a day. Feel ok, but nothing great. My chest is still annoying me. Check out the mask I got to help me when I run in forests and places that might have mould (aspragillus). Bane from Batman or what??
After the visit. Prof decided to put me on Symbicort. He suggested Seritide, but I honesty didn't think it was great. Ive heard great things about Symbicort so might as well try it out. I'm on it for 3 months and then review my situation.
I'm on it for 2 days now. I feel a difference already but maybe a placebo? Hopefully not.
Next week, I am increasing my weekly mileage and start doing an hour a day running with an 80 minute long run at the weekend!
Adios
Evan same boat as you though you were a bit above me.My LF initially was 85% in Feb last week it was 74%.However if this helps I was told that although the Fev1 is the most important number as you get older other numbers become important for predicting your longevity.This is the Fev C.If you have a good number in this chances are you have a long lifespan even if your FEV 1 is low.However this is what I was told at the Brompton in London (it may pay to get a second opinion )
ReplyDeleteall the best
I would never say anything like that, you have CF whatever your lung function is and therefore a right to be worried then your lung function drops.
ReplyDeleteI think it's your cocky attitude that is sometimes the problem and just like in this blog post, you make sweeping assumptions about people with lower lung functions, your assumptions are insulting. You basically think everyone with a lower lung function does not try hard enough to stay well or didn't in the past. You assume everyone should exercise and can, they are just lazy and that is why you annoy people. If you haven't experienced something how can you make comments on it? I agree that a lot of people with CF don't try hard to stay well, but a lot of people do, it's unfair to put everyone in the same category.
I'm a very understanding person and understand you want to encourage people to exercise and you are convinced it is this and this alone that contributes to your higher lung function. I think it's disgusting people send you hate email however I do find your attitude distasteful and disrespectful, so I won't be reading your blog anymore. I Wish you all the best
Hey Me!
ReplyDeleteI wasn't saying every CF is lazy and is rebellious. My paragraph was more a question rather then a statement. I'm sorry if you read it, or it sounded like I was making a general statement because I know not everyone is the same. However, it's your choice if you want to read it or not.
My son, who is 6 weeks old, has just been diagnosed with CF. He has two copies of the deltaf508 mutation and ive been told by CF specialists that this is generally the most severe mutation.
ReplyDelete3 days after he was born he had an operation to clear a blockage caused by meconiumileus and has now got a stoma and fistula, this is due to be reversed in the not so distant future. He takes creon, abidec, sodium and fluclox amongst other meds. Its all very overwhelming and new to us at the moment and I want to do everything I can to help him stay healthy throughout his life and value our CF team very much but I'd appreciate some input and advice from somebody who has first hand experience of CF. If you feel you can help in any way please email me on leanne.darcy@hotmail.co.uk or add me on facebook @ http://www.facebook.com/leanne.anthony1
thankyou x
Hey Leanne. I will email you now
ReplyDelete