#cflife

[just-breathe-fight-cf]

35 Years!

Today, I’m 35 years old!

When I was only 16 years old, I was told over and over by my doctors that I would be blessed to see my 18th birthday. When I turned 17, my lungs were so badly infected that I thought it might be true...but I fought and always thought to myself: I’m going to live forever!

Well, metaphorically speaking of course!

Nevertheless, age 18 came and went and I realized that no doctor or specialist can tell me when I am going to die.

With the severity of my lung disease, age 25 was my new life expectancy and I saw it as a goal to beat. Then it was age 27 and 30...I just kept going...

Then age 30 did come and I made three good attempts at dying, spent 167 days in the hospital fighting aspergillosis and pneumonia. I was certain I wasn’t going to see 31...but fought on...fought for every breath!

By age 32, I was diagnosed with endstage lung disease and given 2 years to live...well, I’m 35! Still fighting, but for the first time in my life...it is getting harder.

The message is to fight through all odds. If they give you two years, take five! Have something to live for...be resilient!

[normallife7-blog]

Just wow.....I’ve just seen #fivefeetapart and it brings back floods of memories when I was young and was in hospital having IVs and us CFers were allowed to mix as the issue of cross contamination was not understood by science. I have to say you’ve done us justice @fivefeetapartfilm

I’m so grateful my wife doesn’t have Cystic Fibrosis as I couldn’t live without her, and I am so glad we can touch! I know it’s a rare scene CFers falling in love but today it’s also rare for CFers to become friends in real life within the UK as the issue of cross contamination is understood so deeply - giving another individual with CF a hug is impossible for us. Great awareness movie.

And the funniest thing was when I left the cinema I heard from a group of teenage girls “look there’s one”, like they’ve seen a celebrity 😂 but at least they know what we go though

#CysticFibrosis #CFaware

[lifeofacfsurvivor]

My brother in law has pneumonia and he was like I know how you feel now. It's so tiring just breathing all the time. I forgot the other day and ran up the stairs, I nearly died. I was like yep, now you know why I live in my pjs and nap pretty much all the time 👍

[khaleesiofthegreatsasssea]

One of the wildest things about the Cystic Fibrosis experience is the days when you feel horrid and you start fantasizing about a lung transplant because the very thought of fully functioning lungs without four bacterial infections is so exhilarating...but then you remember that you’ve got less than a 50/50 chance of surviving five years after said transplant and you go “Wait, no, no, Please God let me stick it out with these lungs a little longer, I’m not ready for that gamble”

[normallife7-blog]

Going aboard with Cystic Fibrosis is a stressful task especially when remembering to bring all are medication we need, most importantly sodium chloride tablets, as CFers lose more salt in are sweat than the average person and if we forget them......well lets say your not going to have a happy traveller with you, because when we do lose a lot of salt, are body doesn’t recognised the thirst!!! Symptoms CFers get when we lose too much salt is feeling weak, sick and having muscle cramps and joint pains, but amongst all this we turn into a living disco ball as the salt we lose is on the surface of are skin. That’s one reason why we are called salty people 😂 now unfortunately I did forgot my salt tablets when I was in a hot country, so I’ve got a funny story to tell you so watch my NEW video and don’t forget to SUBSCRIBE!

[normallife7-blog]

The one thing I hate about airway clearance, is that I feel so ill afterwards. I feel it makes me more poorly like I’ve catch something. I know it’s just fatigue as my body has had to do a lot of work to get the mucus up but I feel so rotten after that I have no energy to do anything. I don’t know if it’s a sign of something brewing, as I’ve felt tight the pasts few weeks even with increased exercise and improved adherence to treatment........ I don’t know I’m abit like Jon Snow “ I know nothing” and CF plays mysterious games. One day your good the other........ ☹️

[lifeofacfsurvivor]

My body is so tired to the point it hurts to lie still. Lord curses my body.

[just-breathe-fight-cf]

FINALLY GOING TO A CF CLINIC

     It has taken so many years to be seen at a legit CF Clinic and now it is going to happen!

     My diagnosis, being ‘ATYPICAL CYSTIC FIBROSIS’ makes achieving a diagnosis very difficult and typically, nothing happens until your health begins to fail and it is too late. For a long time, I had to advocate for my own self and try to inform my doctors that there was something happening here that was much worse then asthma or even CF alone.

     The problem with CF, you need a diagnosis of CF to have CF...but that statement isn’t correct. It is possible to have CF without a diagnosis, which is called ‘atypical cystic fibrosis’.

     This is why I want to advocate, to show any others who have atypical cystic fibrosis, not to give up! Fight for yourself! Your life is your life...your future depends on what you want for yourself.

     Even though I am being seen by a CF Doctor now...I remain apprehensive.