Monday, April 23, 2012

CF Check-up

As promised. Here is how my tri-monthly check up went.

Lost 4kg (which I'm happy about)
Iron (16.4)and bloods is at a steady state.
Sputum came back with only traces of pseudomonas and staph in it. Nothing has really changed there.
My FEV1 went up by 1% (82%) but that's without Ventolin. Im normally 81% with Ventolin. So that's brilliant. My other test, where you take a deep breath in and they pump some crap (hydrogen is what they told me)and then you blow out...what ever that is, it went up by 6%.
The bleeding issue. Well that's still unresolved. Iv to get my Vit K levels checked. It's not that, as I explained yesterday, I would bleed more if I cut myself if I had a deficiency in it. Time will tell.
I am now on Singulair. He is treating more like an Asthmatic rather then a CF, which is good. The level of activity I'm at means im not productive. I find it hard to get anything up (CF impedency). What I do find is that i have a dry cough which is irritated by running hard, and certain weathers. Like really cold weather. This is my exercised enduced asthma reacting, and not my CF. So it was a clever move on his behalf.

NOW....for the all important question. I asked Prof this question.
Q. Do I have a mild or severe case of CF
A. "ohhh you have the most severe case of CF there is"
I know it seems like I have a mild case, but you don't understand how much I train,and keep on top of every fine detail, and if you do, then you will know what I'm talking about. You just see me "going on the odd trot" to stay well.
I had a conversation with Prof about this. By this I mean doing things like exercise and physio, at an early age, and obsessively (I say obsessive in a light term, so don't start with your crap!!!). Heh totally agrees with me that exercise is a huge part of a CF early life, and needs to be done, everyday.

He gave a good formula;

If you have a BMI over 20, are over the age of 24, a FEV1 of 52 or greater, and more then a certain amount of exsasserbations in a year (I think he said 2-3), then you will be ok for the next 4 years.
Likewise, if you have everything opposite, then you most certainly will either be dead, or need a transplant within 4 years.

I will leave you with this quote "you don't want to be ok, you want to be the best and win" - Prof, speaking about my CF.



  1. glad your appointment went well, sounds like everything is very stable, which is great!

  2. Yea I was happy with it. I thought it was going to be a bad news visit. Not sure why, but it was good.

  3. Try Googling "What are CF Modifier Genes." Some of the top links may explain why people with the same basic CF Genetype (e.g. DF508) can have different degrees of severity. Did the prof explain this?