What it's actually like to live with cystic fibrosis on a daily basis

I was at work the other day and someone asked 

"So what's it actually like to live with cystic fibrosis?

Well here goes

When I wake up I start by taking these :-

That's 

Two Lansoprazole

Two vitamins A & D

Two Adcal D3 tablets (because I'm osteopenia)

Two ursodeoxycholic acid

One tocopherol acetate tablets 

Then I do the following antibiotics throughout the day :- 

Two fucidin tablets three times a day

Two doxycycline tablets once a day

I take the two antibiotics mentioned above because I'm currently culturing MRSA in my lung sputum results

And

One Azithromycin tablet once every three days to help with inflammation

Ito help my lungs I do these :-

That's two pulmozyme per day one in the morning and one in the evening to help breakdown the sputum growing in my lungs

And one hypertonic saline per day again to help me remove the sputum from my lungs

These are nebuliser treatments that I do using an ineb. This device helps to transform the liquid into a vapour which I can then inhale into my lungs to help it start its job

Everytime I eat I have to do these :-

These are Creon 25,000 pancreatic enzymes

I have to take between three and twelve everytime I eat and the quantity depends on how much I eat or if I drink a fatty drink like milk etc

On average I take around 40 tablets per day

Oh on top of the Creon I need this. :- 

That is novorapid short term insulin as I have cf related diabetes (cfrd for short)

I have to inject everytime I eat anywhere between 10 - 30 units per snack or meal.

On average I inject about 100 units per day

Twice a day I try to do something called Autogenic drainage

This is a type of breathing technique that helps to loosen and shift the mucus up and out of my lungs

I will admit I'm not great at doing this but I'm always trying to improve and am getting more consistent with it

Throughout the day if I'm struggling to maintain a good weight I drink this :-

That is a scandishake

It is mixed into full fat milk and helps give my body what it needs to either maintain or gain weight

Each shake with full fat milk contains approximately 600 calories

And finally before I go to bed I do this :- 

I know that looks similar to another item mentioned above but it's not

This is levemir. It is a background or long term insulin that I inject once a day approximately 30 - 34 units. It is designed to stop my sugar levels from increasing once the novorapid has worn off and to give my insulin levels a constant help throughout the day

Well that about does it

In summary I take approximately

60 tablets everyday

Inject insulin approximately 4 times a day and approximately 130 units

I do three lots of nebulised antibiotics

Two lots of autogenic breathing exercises

And finally at least one scandishake per day

And I still lead as normal life as possible and do things that anybody else does I.e. Go to work, visit friends, have days and nights out, go on holidays and play sports

How?

That is because to me this daily routine is a normal life 

I know no different in life when this is how I live my life

People say don't you want a normal life?

Well you know what they say

What you've never had you've never missed.

I would also like to add that I'm not the only person in the world who lives there life like this 

Of course I'm not there are others who may do more and others who have to do less in there daily routine.

I just simply wanted to show you what a day in my life is like

Thank you for reading

How CF makes me feel! Just a few things I thought I'd say

Firstly before anyone gets the wrong idea I'd like to say that this is my own opinion but I'm sure others feel the same 

How does CF make me feel?

Well actually it doesn't make me feel any different to anyone else because I've never felt like others have so if I don't know the difference how can I feel different??

I've only lived with what I've got and that to me is what I am and who I am but to me I'm not different. 

Have I ever been treated or scene as a different person?

You will always get someone who sees you as different but in general nothings been different for me or my friends or family

Okay some people do see you different and may treat you different but I've never experienced that in a negative way only in a loving caring way 

For example when I go out with my friends they always watch out for just to make sure I'm okay but they have never stopped me doing anything because they know I will do the same things they do even if I can't I will always try and they know I hate to be seen differently but they just care and there's no harm in that 

In fact I'm very grateful to all my friends who have watched out and care for me over the years and I cannot thank them enough for what they have done for me 

Even though I'm not healthy I still know no different so to me I'm just me I'm a normal person no amount of drugs, needles, tests, mucus or infections have changed me or will change me

I like my life and to me I'm just lucky to have enjoyed it so much as I have I've had my down days like anyone but they make you wise 

Is there anything that I see differently at all?

I don't think I see anything differently but I think I maybe appreciate things more than some others may be do. Why? Well I think and may be I'm wrong but with any serious life long illness or a near death experience it can change you and you learn to love things more and for me CF has made me love and appreciate more things than most people would and I'm open to trying and falling in love with any new things I've done

For example my grandad Tony used to love his classical music and when I was younger I never really understood classical music and opera music but I always loved hearing it when I walked in to my nan and grandads and seeing my grandad sing it and make it fun and for me my grandad gave me a gift from a young age and that was to teach me what it was and it meant. For me it's something I hold special to me as I've got older I've fallen more in love with this type of music and it holds some amazing stories and love and romance. A lot of people don't know about my certain types of music choices and some may laugh but answer me this

I bet you know the words to this song called

O sole mio from 1898 what is it?? Well someone eventually re wrote it to become the cornetto song and I bet we can all sing that aye

And I still listen to classic music to relax too there's just something I love about it

Oh and by the way my favourite songs are many but to pick a few I love

Ava Maria

O sole mio

Experience by ludovico einuadi

 And my big favourite

Con te partire by Andrea bocelli

Do I worry about the future?

Yes of course I do who doesn't, except I'm not worried about what the future holds for me as such I'm more worried about how people will cope with my future as my health inevitably gets worse and how they haven't excepted it as much as I already have or don't understand it yet which isn't there fault learn sing about cf and how to live with it takes time it always will and some people are just to young to even begin to understand it yet. I'm more worried about who I will leave behind

What about my future plans with cf?

Well you can never plan with cf as such but I have my future work plans prepared, my paperwork is done but most of all I am really hoping to become more involved with cf charity work and cf research like I want to take part in more trials because it's been great fun being on gene therapy trials I've learnt a lot about it and more importantly I've learnt a lot about myself. And I've always been willing to risk myself to help out 

Just think they may find out something that doesn't help me but they learn from it and that helps someone else I don't see it as giving something up I see it as giving something to use for the good no matter what it does to me

Final thought

Am I scared??

I'd be lying if I said I wasn't scared of cf. Not because I'm living scared of it I'm just scared of the things I haven't learn about CF yet and what it holds for me for the future not as in what will happen I just don't like pain haha 

And Death?

Do you know what I'm not going to answer that it wouldn't be fair but I will say that I like to live my life by this saying

The Brightest Star Lives Half as Long

And that's how I like to live by taking in everything because I intend to do and see more in half the time and enjoy every opportunity I get life is for living after all

Why am I writing this blog entry

I just simply wanted to share some thoughts with you 

I hope you enjoyed it

It's January 2014 and it's also my final month of Gene Therapy trials dosing

So firstly happy new year to all that read this blog.

Well where do I start??

Well the last couple months have been a challenge mentally and physically. CF has been trying its best to give me a rough Christmas period but I've kept my head above water JUST but I think I've come out in 2014 okay. I hope my lung function has stayed consistent I hope but I will know more later today as I'm having lung function tests this afternoon I'm excited but nervous and exhausted. Last nights sleep didn't exactly happen, I think I may have nodded off around 4:30am well that's the last time I checked the clock!! 

And I'm noticing changes with my body not related to my lungs or stomach but definitely as a consequence of suffering with cf. My left ankle now constantly locks up and my right knee is always on fire. I'm now depending on ibprofen gel 24/7 and I need the hospital to work out if it's cf directly causing issues or if it's my tablets causing an issue. Either way the pain is becoming worse and my Ankle is a real worry as I've had problems with it previously and it's been operated on twice and still not fixed it. It's worrying me a lot as it feels like it may collapse or break at any moment. This morning it felt like I hit a nerve and my leg collapsed on me resulting on me falling up the stairs, a skill in itself I tell you haha

I've also noticed that I'm always feeling exhausted despite sleeping loads and chest pains are becoming a regular thing. Oh and I've also had the odd heart flutter.

I thought my diabetes could be causing a problem but I've really been nailing that lately and can rule that out as causing a problem

All of this I will have to discuss with my cf team and no doubt have to have tests and scans to see what's wrong and if they can help. My priorities are sort the exhaustion out and get my ankle figured out.

Chest wise it's been a struggle but lots of autogenic drainage pulmozyme and antibiotics have cleared something nasty that I had over Christmas and during December, I'm not sure it's killed it yet but it's doing something positive.

Like I mentioned earlier I have been having another go at getting more understanding of my body and diabetes and in short I think I've got a better plan to cope with it and control it better which I know is very important to help keep my chest healthier. 

And last but very much not least.

Next week I will be inhaling my final dose on the gene therapy trials. I still don't know what is going on in terms of what I'm inhaling but it's been a privilege to have been apart of the trials.

I'm excited to finish it but will be sad to finish and know that I will soon have to say goodbye to the trial team. They are an amazing bunch of people and it's been great getting to work with them and know them I will be sad to leave for the final time.

Mind you it's not all completely over just yet

I have 3 more visits after final dose to finalise the research and the most important bit of all??? 

Well my final visit for my last bronchoscopy. I'm not looking forward to that bit mainly because I know how awful I will feel after and it takes a few days to get over the effects of it but more worrying is the day after the bronchoscopy I'm due to jet off for a stag do. 

Hhhmmm,, scared??? yes

Stupid???? I always am

Determined??? Of course I am

I will of course keep you updated

I will also write a final trial blog when I know everything that happened and will let you all know what really happened ;-)

I'm off now time to get poked and stabbed by nurses and doctors 

oh and finally and the best news of all.

id like to announce that I asked my girlfriend to marry me over the christmas period and she said YES :-) 

and now we must plan the whole thing :-) 

Thanks for reading

Is my body changing? Getting fed up and what the changes might mean for me

Well I'm not well (I know I know same old story aye) 

It's getting very annoying. I've coughed up blood had chest pains (which is rare for me) been sick in general, aching all over and generally feeling very tired and fed up with everything health wise and life in general.

I am starting to wonder if my body is starting to change??? I mean it's put up with a lot in the last 28 years with the bad leg cystic fibrosis and diabetes.

I feel like I'm getting Sick more often maybe it's just a spell. It doesn't feel like it though.

I'm fed up with feeling like this

So much to do in so little time but I feel like my body isn't wanting to do anything and by trying to push it I may be pissing it off more

I'm still trying to work and get on with things but it's hard when you feel run down and feel like sometimes people don't understand maybe people don't appreciate how I feel inside but that's no ones fault.

I've only been out of hospital 4 weeks and already I have a bad irritable cough. I just don't get it I don't get this sick this quick normally.

It is really pissing me off.

So much so ill or not I decided to go running again and through being sick and pure determination I managed to run a mile in 13 minutes. That might not sound a lot but to me its a step in the right direction and I felt better for it.

I'm going to keep running and pushing but I need to figure out what's wrong with me. I hope by pushing I'm not making things worse but I feel so down and ill and angry that I refuse to sit and take what's coming to me.

I just feel like venting my anger. Do you ever feel like no one gets you? Not because they don't want to but because it's so hard to explain for someone to understand???

I feel like I need time off just a shame cf will never afford me that time.

 

I know there's always someone worse off but even me being so positive I don't always feel like that.

I'm sorry to moan and whin but I like to use this blog to do so.

I want to get better because recently I felt like I'm not doing enough like I'm lazy but first I need to get better.

What's that famous saying, first you must help yourself before others can help you.

Well actually I want to help myself so I can help others.

In 2014 I want to do three things for charity

Climb mount snowdonia

Jump out of an airplane 

Run a half marathon climb run walk or crawl over that finish line.

So I have set myself challenges 

Now I just need to get better.

I have always had it in my mind that I won't live much past 30 years of age so time is of the essence.

My body either needs to let me get better or I do my challenges poorly. I'm not stopping

Right now though I need to go away study myself and figure out what's wrong

Then let the challenges begin

I've had enough this is my hardest blog

This May sound awful as I know there's people more worse off than me but I've had enough.

Right now I've had enough of everything 

I want to lock myself away and be done with this all.

I have to say this because people around me really have no bloody clue how bad I've become mentally so here it is.

The last couple months I've just thought fuck it

Why bother anymore? 

And everything is beginning to annoy me

I have seriously thought I just want out.

For nearly 28 years I've put up with all the s**t CF has thrown at me and dealt with it as best I can 

Well it's worn me out, wiped me out, worn me down. CF can kill in more ways than one

Three months ago my health was better than it's been in years then within a month of that great feeling cf has chucked everything at me 

And it's proved its point.

3 months on I'm back to bad health and a hospital bed

Like the doctor once told me 

"My job is not to make you better but to delay the obvious!"

I cannot see past THE OBVIOUS anymore

Don't get me wrong I'm not saying I'm suicidal far from it but I'm just lost

Lost to fight

Lost to reason why I do all this

Lost to see why I keep repeating my life day in day out

Lost to see why it's the same old routine 

Lost to see past average

How can someone say this is the average this is what we expect?

My lung function has somehow in 3 months dropped from 2.9 fev1 to just touching 2, I've never experienced something like that drop so quick before.

I'm doing as I'm told, 5 IV treatments everyday 3 nebulisers and 2 sessions of physio but I'm struggling to see what for but I won't stop

I'm at a mental crossroads

Yes I know I'm being selfish but it's my right to be but I also understand this May anger people

Everything in my life is good I have good people around me, money has no meaning and I'm loved I think that's how life should be I couldn't ask for more in that respect

BUT

That still don't make all these things in my body stop attacking me

Maybe I should let it and dull my tones?

I'm going to see a councillor soon it's something I think I really need. Someone outside the box to look at me tell me I'm complete crackers then try sticking me back together.

I will admit I don't not wish to hurt anyone especially those close to me as I cannot live without them 

I want my family and the people close to me to know I'm sorry

Sorry for being a bit of a let down right now in writing this

But sorry most of all for these feelings.

But I cannot see why I should have to live with CF that's how made mentally I feel.

I never used to question cf just got on with it, lately it's all I've done

Question question question

This blog is not a cry for help 

Not at all 

I'm sorting out what I need to do I've contacted who I need to for help

It is my first admission that finally I need serious correction.

My first admission that I'm at breaking point or more to the point my health has pushed me to breaking point

I'm sorry that I have written this but people who don't see it need to understand because I have not mentioned any of this to anyone I've felt like I had to hide it. Act normal enought thought in reality I realise I have been rude to some people and maybe it's been noticeable that something isn't right

I'm doing things my way 

That doesn't mean I'm going to stop being me. Or change towards people or anything like that 

I'm not happy in my cf life side of thing I'm just not happy with me for being how I feel right now

I've seriously thought about giving up work going bankrupt and acting like I've started life all again.

Because I feel like starting with nothing means I have nothing to lose (I don't mean throwing everything away it's metaphorically speaking)

Then and only then do I have everything to gain to try a new lease of life

This is proberly the hardest thing I've written

But I'm glad it will now be out in the open

I'm sorry for this blog

CF & How it can affect your growth in younger years

I thought id write about something that I have not known many people to talk about but that I know can affect alot of people with CF

Why dont you hear many people talk about it?

Well Maybe im a one off?
Maybe it doesnt affect that many people
OR
MAYBE some people are to shy or embarrassed to talk about it?

But why when there will be others out there affected by the same thing who will be looking for guidance or other peoples stories but too afraid to ask as they are worried someone may laugh at the them or be bullied
Or simply that they just havent spoke to someone whos been through it themselves

Im talking about

CF and how it can affect growth in a person with cf.

Here I thought id write about it and say YES CF AFFECTED MY GROWTH

So for people reading this blog thinking "is that me" or "Am I the only one out there who has noticed this" "Is there someone out there who can help?"


Your not alone

I will be the first to admit that as I reached my early to mid teens I noticed something wasnt right and althought I never told me friends about it at first I decided that I would seek help.

And before you ask

I was only about 13-14 when I started to think stuff it im going to ask.

At 13-15 I was still a what some people might call a puny teenager.
I was about no more than 4ft tall at least a foot or more shorter than anyone else, my voice was showing no signs of breaking and I was sure I wasnt developing like my friends especially in the Genetals area.

It started to affect me quite bad as I was at an age where girls were starting to become a real interest to me and I was starting to convince myself i was not going to catch up with everyone else physically and would have to ignore girls and hide from my friends until things started to happen.

Some People used to jokingly think I might be gay as I wasnt showing the usual interests in girls (Infact some people still think I am now but thats another joke entirely)

Mentally i was feeling left behind like I should stick to a quiet corner so I didnt get noticed and physically I knew I had no chance.

Well after about a year of worrying about it I think near my 15th birthday I decided to tell my parents about my worries and after my dad joking about saying I was destined to be short like my mother (He was correctly slapped by my moher im sure although he was right now im taller than my mum I can say my mum is just short but no doubt my mum would reply "The best things come in small packages" You keep thinking that mum) My mum and dad spoke with my paediatric CF team who booked me in to see a growth specialist.

The CF Team were brilliant and his all happened within a matter of weeks of me voicing my worries to my parents and to my cf doctors.

Well sure enough after a few tests with the growth specialist who was a very nice person and helped me feel better about my situation and even more confident, that yes I would catch up with my growth

PHEW

Well it wasnt all plain sailing from there I wont lie

I started on growth hormone tablets but after six weeks not a sign of growth or any movement for that matter

So back to the growth specialist who decided that tablets were not going to work so I went on to Growth hormone injections.

This was done 1 injection every 6 weeks for about 6 months.

Well what I can tell you is that I didnt grow to the height of peter crouch but I did notice growth changes within a week or two of my first injection.

I think when I started I was 4ft or even shorter and size 4 in shoes and after the six months of treatment everything moved on

Physically I had grown to over 5 feet (Im not 5 foot 6)
And my shoe size had shot up to nearly an 8 in six months. Im now 8 and half to 9 in shoe size

Oh and when I say growth hormone injections they were no more than what you receive when you have a flu jab. Over and done in seconds.

So by the age of 15 and a half I was back on track with all my friends and I never had to receive anymore treatment and mentally I was so positive and open I was able to start to enjoy the things I had become interested in without thinking I was behind everyone else

At the time when I first was worried about my growth i really thought it was going to be really hard to overcome.

But I found by being open and honest it was sorted out quickly and help arrived and the results were just what I thought id never see.


So what im trying to tell people who may be having the same troubles or have noticed their children may be going through the same thing

TALK TO SOMEONE

When I voiced my worries my CF Doctors couldnt be more helpful

The growth doctor was brilliant and swift in helping me

And all in all my whole worries of the previous year were starting to go away by doing one simply thing

Asking for Help.

Dont be shy

You will be amazed how many cfers are affected by this and I hope the help others receive now is just as good as it was if not better then when I first asked for help over 12 years ago


Thanks for Reading


I hope this helps others.

And if you have any questions please ask i will be more than happy to help

Learning something new everyday with cf

Well where do I start with this subject

Recently and rather unfortunately I've learnt alot about how ruthless cf can be

Over the last couple months and even more recently the last week I have seen how quickly cf can turn very painful and unfortunately deadly without warning

When I recently went to hospital I had been fighting a bad chest for a few months but within a few days it turned the screw on me and from one Friday to the following Monday I went from ok to even struggling with walking up stairs being out of breath and feeling really rough and by the Tuesday I was arranging to go in hospital for IV treatment. It hit me so hard and so quick I couldn't even really take note of how bad I had got in a very short space of time

I had learnt a valuable lesson and it was something I had never experienced before 

Then my friend told me she had got ill in a similar space of time but worse even worse 

In short 

On one Thursday she had a cold which turned into a bad chest and sore throat within the same day and then on Friday she was rushed to hospital and then an ambulance drove her to kings for immediate treatment when it was discovered she had flu and pneumonia. all this happened within less than 48 hours

I never knew or realised things could turn so quickly but I'm learning quickly as it will serve me well in the future

Then even worse I have discovered that cf can take a life just as quickly

A lady I was following on twitter called Emma Kingston and had had a few chats with via the social network seemed like a lady who interested so many people who followed her, why? Not because she had cf but because of the person she was and how she went about living her life and that showed right up until the very last minute that cf was not going to stop her enjoying life 

Her life turned for the worse unfortunately within a short space of time and it seemed from what she was saying that it was never expected so quickly

 

I am sorry that you didn't get what you needed in time Emma and to the others that ran out of time but still believed and seemed to live to the full right to the end. It was a pleasure to follow u and hear your stories your tweets and stories were hilarious and showed so many valuable lessons in life

RIP and breathe easy.

I have learnt a very valuable lesson from what has happened and I will do my best to keep fighting, will try my best to pay attention to early signs when my health is going wrong despite my mental state not being great at the moment 

One thing I have learnt is that leaving things to the last minute with cf can only make it worse like I used to do when I was younger and I cannot afford to do that anymore if I want to live into my forties 

Last time I went to hospital for ivs a few weeks ago I went in quickly to try and get a good grip on the chest infection and try and clear my chest before the chest infection had a chance to settle in and it seemed to work as my lung function was the best it had been in nearly ten years.

But I'm not taking anything for granted

Im going to start back at the gym this week and try and eat healthier. I want to give this body the best chance it has in life

Like I said on Facebook the other day

Sometimes I feel like the luckiest man in the world, other days I feel like the luckiest man stuck in the most unlucky body and with how I've been feeling that's exactly how I feel

Right now though its not my physical health that needs to change drastically its my mental health and that is one thing that I'm struggling with the most. But that is what my next blog will be about

More to follow shortly