....Pete is not a carrier of the cf gene, there is now less than 1% chance he is a carrier, hurrah! Like I said before, they only test for the most common genes. This means if we have a child there is less than 0.5% chance it will have cf, which is good news! Although clearly people with cf are the best looking around so I guess I would have to put up with an average looking child....hehe.
I did quite alot on Monday and as a result my whole body was aching in the evening, I swear I'm falling apart! I did some cleaning, took Alfie for a short walk, went to see the flower lady about my wedding flowers and went swimming. I really don't like swimming but I know it's good for me so I push myself to go. Its always busy and your constantly dodging people, although when I cough alot people tend to stay away from me which is handy, this is also a technique I use when out shopping to get people out of the way, works a treat :o)
Today I did my voluntary work, I haven't been for ages so it's nice to get back into the swing of it. I then went for my hair cutting as it needed a trim, I can't have my roots done. Apparently I get it done too often and my hair will fall out!
I got a letter form the hospital today, they send my GP and I a summary after each appointment, so this one is from the end of my iv's. It says my lung function was 46%, I couldn't remember what is was as I was too busy picking my arm at the time. I wish my stupid lung function would decide to settle in the 50%'s!!! My CRP levels are 27 which according to the letter is slightly elevated, I think CRP levels are infection levels, I assume you want it to be 0? But I guess mine are never going to be that since I always have infections! I read on the cf forum somewhere that anything below 10 is good. In my 'other notes section' I also have cf liver disease (non cirrosis) and I have osteopenia, this means my bone density is lower than normal but I don't have full blown osteoporosis (I hope!). Just abit of extra information there for you anyway! Always nice to have an update of how rubbish my body is...! :o)
I have also received our units newsletter and there was an article in there about oxygen on flights, so I have called them to book a flight test for my honeymoon in September. It said in the article that they can limit how many people have oxygen on a flight or can make you pay for it, so I want to know early if I will need it or not. I have never needed it before but you never know, especially since it's a long haul flight! I have never needed oxygen my whole life so I'd be pretty freaked out if I did need it.
Subscribe to:
Post Comments (Atom)
.JPG)
5 comments:
really happy for you and pete - what good news! If you do need oxygen, seriously don't be worried, I need it even though my sats are fairly high on air, but i see it as a good thing, because i get my own air supply thus avoiding all the nasty bugs and i have energy even after a long flight x
I've only had oxygen on a plane once and it wasn't the nicest of experiences, people really do like to stare. I spent te whole flight turned so no one could see me but I'm a bit vain like that. It's one of the reasons I'm avoiding 24 hour oxygen as long as I can :)
ahhh hun I am so pleased that Pete isnt carrier!!!
Does it mean that we are carriers though- that bit confuses me?
With regards to CRP I think you can never really have a low CRP last time i was on iv's whn they finishd I was 17.
Hope u dont have to have 02, Vic I know what u mean i get so embarressed about things like that and I'd be exactly the same as u if I needed 02.
Fantasic news about Pete. One less thing to worry about. Glad your doing the flight test early so you could sort it well before the flight, but like Jen says it may just be of benefit for you on a long haul flight. xxx luv you lots
very good news for you both.
Post a Comment