My health hasnt really improved since leaving hospital and may have even got worse due to being ill with a viral infection recently and losing nearly a stone in weight (which im of course trying to get back :-) )
With this in mind i did some research into how I could improve my health and help my chest a bit more.
After many hours and a few phones calls and chats to other sufferers I have found a way i hope to help improve my chest and health and to help clear the mucus building up on my lungs.
Now dont get me wrong im still trying to get fit and i will be going to the gym and swim over the weekend but im also going to try something else at the same time.
Its Called THE VEST
And it is just what the title says.
Its a vest that you put on (its like a bullet proof vest) and it attaches to a pump which pulses air through the vest and that in turn vibrates the vest and that vibrates the chest to help loosen the chest and cause what are called mini coughs in the lungs which loosens mucus and helps move it up and then we are able to cough it up and get rid of it.
Speaking with people who use it its very basic but a huge help with improving lung clearance and hence helping improve your lung capacity and fending off infections and improving your health.
Ive decided to get one and see if it works.
Now here comes the sticking point.
These are not readily available on the NHS unless your cf team has purchased some and is able to loan you one. Unfortunately I know of none that my cf team have so have had to track down the supplier and see how I go about getting one.
The NHS will also not provide me with funding as they cant afford it and most likely say im not ill enough.
So im self funding.
The cost to Buy im told is a MASSIVE £6,000.00 to buy one (Which I dont have unless someone wants to donate me the money?? Anyone no of course not)
So it looks like i have to find another way of getting one of funding this machine I want to use.
I was told by a fellow sufferer on a forum that they rent theirs from the company directly and its the best financial solution for many people.
£100.00 a month Ive been told. Seems reasonable until you realise that
THE NHS ARE NOT PAYING I WILL HAVE TO PAY.
£100 a month out of my own pocket to try and improve my health (and its not gaurenteed to work for me either) people say you cant put a price on your health but i find it sickening
I like many others are starting to pay out of their own pockets to fund keeping themselves healthy keeping themselves alive.
Its Disgraceful
A) That the machine is so expensive to buy or rent considering is basic function and simplicity
B) CF patients are funding their own care
ITs not right but I will be like so many others have decided to paying for it because we need it. ITs not a luxury we are paying for its a necessity.
Its been like this since I can remember.
My first nebuliser I had my mum and dad paid for £500 out of their own pocket because the NHS wouldnt give us one or even lend us one.
Many people with illnesses (not just CF) are in the same boat as me because what price do you put on your life. How many more sacrificies and financial burdens will poorly people have to take on before we all cannot afford it anymore and have to give up care because the NHS wont help.
Something should be done about this.
There are people out there trying to help but they shouldnt have to.
One thing I must mention is how charitable this country and british people are. I mean weve all seen the sums of people the public donate to good causes (Sport relief and children in need to name just a couple) its amazing.
Yesterday I read a story about a lady who has CF and trialled the vest and found a massive improvement using it and her health got better. So did the NHS see it worked and gave her one?? NO
Her friends got together and raised the money between them the whole £6,000.00 and bought the machine for her.
People in this world know no bounds to their generosity and this country and many charities and especially many individuals who self fund, would be lost without peoples willingness to give a few quid and help someone out.
Just a shame the government or NHS dont do more
A friend of mine on twitter tweeted me something very simple but very interesting yesterday
The NHS are willing to fund boob jobs but are not willing to provide someone with life saving care
What more do I need to say??
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