Friday, 27 February 2009


Okey doke, as I'm a total sucker for being 'tagged' for certain posts *cough* Piper *cough* I'll let you in on some stats on me. Although if truth be told, half of what I'm about to say I've already repeated like 5 times. But who cares?!

1. My first name is Megan, my initials are M.A.C (Shut up).

2. I was diagnosed at 3 months old. Before I was diagnosed, I would apparently cry all the time and barely eat, which was probably because I wasn't getting enzymes, and everyone knows it ain't fun when you miss enzymes with a meal. Now imagine that for 3 months.

3. My birthday is in August, and this year I'll be 18 (and yet still refusing to act like an adult)

4. I've had 3 port-a-caths, all in my chest. My first one was when I was 11.

5. I have 6 lovely (!) CF related scars. I'm a human doodle.

6. I'm 5'1 and one of the smallest in my school year (but not THE smallest)

7. My parents noticed my hearing was decreasing when I was 9, but the Drs refused to acknowledge it until I was 10, when at clinic, when one of the Drs left the room and said 'bye' to me, I didn't respond, even though I normally would (Aka, I wasn't that much of a sod when I was a kid).

8. Since moving the the adult chest clinic from the children's outpatients last year, I'm SO much happier and actually have a choice in my treatment, which at first, completely threw me. Since then, I've seen one nurse from the children's and I wasn't cheeky, but I did say 'I'm much more happier here then I ever was at the children's' I don't know what her reaction was on that as they rarely spoke to me, and she kept this up and spoke to my Dad instead. This is mainly the reason why having a choice in treatment threw me - the fact that the (awesome) Drs and nurses spoke to me and let me decide if IVs were a good idea or whatever, was so strange.

9. I have pseudomonas (although any CFer who doesn't have it at this point is taking the piss)

10. I have no CFRD and I'm hoping against anything I won't get it either.

11. When I was 1 1/2 days old, I got the meconeum illieus surgery, and at the same time they took out my appendix. I don't know whether they did this to save me getting appendicitis when I'm older, or just because they felt like it, but either way, I've basically never had an appendix.

12. When explaining CF to friends, I'm totally frank about it and end up digressing into basically every other area of CF too, even if they just ask something on one thing. Aka, I ramble.

13. I use an acapella for CF. Well, I say 'use' but I don't much. Mainly I just cough a lot and see what happens. Before I got the acapella, I had the PEP mask, and before that, I did CPT.

14. Loads of CFers say that when they use TOBI it gets on their nerves, and yet I find it loads more helpful than any other neb.

15. I tried the salty water solution thing (may have been salbuterol) years ago in my neb, and it had no positive effects. In fact, it made me worse.

16. My lung function jumps between high 60s and low 80s depending on how I am at the time.

17. I've never really had the chance to be a CF 'poster child'. Possibly as when I was younger I was fairly healthy and no one would even believe that I was ill. Once, when I was in year 5 or 6, a woman came in to assembly to talk about CF. I whispered to my friend, who knew I had CF 'That's what I've got!' and she replied in a really annoying voice 'Yeah, but shes obviously talking about kids more ill than you who probably faint every day.' (Yeah, when you're 9/10, you consider being ill as in fainting all the time or something).

18. My Mum and I found out that I'm eligible for make-a-wish, so we've applied as my 18th is in 6 months. I have no idea whether or not I'll get one, even though CFers much younger than me have had one and I'm not as healthy as I used to be. Knowing this, I feel slightly guilty and I don't know why.

19. Like everyone with CF, I eat like a pig and yet it just doesn't seem that way.

20. I take approx 30 tablets a day, but it depends on whether I'm taking anything extra (Aka, evil Cipro), nebuliser once a day (there is majorily no time in the morning, unless I fancy missing the bus) and Physio once a day (again, I really need more time, but unless I fancy waking up at 6.30, no ta) Obviously exercise will count as physio when I start going to the gym, but I haven't yet as I'm really pissed at those gym prices.

21. To take my enzymes when I was younger, I would have them mixed in a small youghurt port, and it hasn't affected my likeness for yoghurt at all. I learnt how to swallow them, one at a time, when I was 6, and gradually learnt how to take them more and more. For an average meal I take 5 enzymes, but take around 7 for big meals like X-mas dinner, and have no problem doing that (aside from the first time I tried 7 a few years back, and promptly choked).

22. My nebuliser is an E-flow. Its small so its easy to travel with and it only takes 5 minutes for a treatment.

23. I'm the only person in my family, that I'm aware of, that has CF.

24. I haven't had any sinus surgeries yet, but I think my Doc may have suggested one as I have stupid polyp things. Urgh.

25. My mutations are double F508.

26. My first IVs were when I was a kid, maybe 5 years old, and only lasted two days. It was in my arm and I had a special arm board thing to make sure I never bent my arm. Since then, whenever I got IVs in my arm I refused to bend my arm even though I was told I could. When I was 9 I got my IVs in my wrist from then on, as my arm veins were frankly shot to shit.

27. I weighed around 3-4 stone when I was 11, so the Drs finally said I had to have a G-tube. After a week with a nose tube, I went down to surgery for the first g-tube op, and three months later they changed it to the PEG (which is when I got my first port.)

26. I think the main reason why I was so healthy when I was younger is cause I took dance classes once a week and swimming classes once a week, and swam with school once a week. I started karate when I was 10. I was also a hefty little runner and did well at sports days.

27. In middle school, they decided that I should keep my enzymes in the office to make sure that I didn't loose them. I would often get in trouble if I went in the office at lunch or break for enzymes and there was no-one in the office. Apparently I had to be supervised to take them, to be sure I had taken them, even though both me and my parents knew that I knew how to take them, and the secretaries just loved the control.

I've officially ran out of things to say. This happens A LOT to me, and I usually always forget something on my way to school. I hate it when you get a person or a thing stuck in your head and you cannot, for the life of you, remember the name of them/it. Like I said, it happens a lot and it drives me mad. I have the attention span of a fish!


Shannon said...

I'm 5'2" too, and usually i was the smallest or next to the smallest all through school.

Amy said...

LOL I can grab some of yours and add them to mine since I forgot all about them haha!!

I used to have to go to the nurse for my enzymes in Middle School too and I would take them a good 30-45 minutes before eating, which I found out made them not work since you have to eat with in 20 minutes of taking wonder I never gained weight LOL!!

I find TOBI helps get the gunk out too but for me I just can't tolerate it anymore :(

Heidi said...

Thanks for the awesome post!! I learned so much about you. I like this trend of "my CF facts post" really allows the other CYSTERS to see what everyone experienced.

Long year? Long post

This year has been weird. I haven't done anything. Haven't achieved anything. Some time at the beginning of the year these days, I w...