Cystic Fibrosis - Breathe Easy (A Birthday Wine!)
Donation protected
Hi Everyone!
Gosh I don’t know where to start with this and it is the first time I’ve ever done a go fund me page! I’m going through quite a period of nostalgia at the moment. It’s been a huge couple of years with lots of highs and many lows! However dwell on negativity we must not! The life train keeps moving and onboard we are getting!
It’s come to that time after 15 months of double lung transplant work up, 2 operations this year, CF treatment day in day out including nebulisers, oxygen machines, counselling support, physio support, diabetic support, infection control, drug allergies, scans, bloods, x-rays and enough medication to run a pharmacy, that I thought it’s time for me to give back to CF !
With my birthday coming up on the 2nd of Feb, I wanted to raise money a little differently! You see I worked out if everyone were (in theory) to come to my birthday drinks and buy me a $10 (£6 UK) Birthday glass of wine but instead donate to my CF ‘go fund me page’ that would be a lot of wine I mean money for CF ! It’s horrible to ask for money but it’s not awful to ask for a glass of wine is it, so I figured it was a good way!!! :)
People often say to me, ‘what is life really like with CF Amy’ and I quite often find myself wondering the best way to explain it! Firstly it’s the most extreme roller-coaster, so many highs and lows with an abundance of loop the loops in between!!
An average day starts with nebulised antibiotics at 5am (Rory loves the sound of the morning tractor!), then breakfast followed by 4 inhalers, 35 pills for the day, exercise, physio session, about 6 cough your lung up sessions, at least one ashtma bout, at least one low blood sugar, 8 hours at the office and an abundance of sleep if I’m lucky! Repeat!! I like to describe it as a suite of meals as follows:
Starter!
Cystic Fibrosis is one of the biggest genetic killing illnesses in the western world. It is a degenerative illness and a very young killing illness. It mainly affects the lungs by causing them to build up with thick sticky mucus. On paper that doesn’t sound that bad ah, until I say to people ‘well remember that time you had a terrible cold where you could not stop coughing, the rubbish was running down the back of your throat, you were spitting rubbish up and you were up all night trying to stabilise it!?! Well it’s like that 365 days per year! Not only this, you also get the lucky bonus ball of not breathing too!! In lung disease the discomfort of this is huge. You wouldn’t believe how much breath it takes to chew food or lift your arms above your head to brush your hair when your lungs are somewhere on in mid twenty % range! Crazy isn’t it and extremely scary! As a result we end up with chest infections for fun. To treat this we go on some serious intravenous antibiotics to kill the amount of bacterial in the mucus, These work amazing but also kill every good bug too! These microorganisms travel like ‘wild fire’ and spread sooooo fast blocking all the bronchial tubes. This in turn reduces the lung capacity every step of the way, eventually leading to respiratory failure and the need for a double lung transplant.
On top of this you have the digestive issues where your body doesn’t digest fat and you can’t put on weight, let me tell you this is great when all is fine because I can eat as much chocolate, wine, crisps and anything else I fancy without putting on much weight! However every up must come down and when we get sick we have no weight to fight with and plummet! Low weight in CF is associated with lower lung function and repeat infections and hospital admission. It’s a costly bonus but I am afraid one I must continue!
Main Course!
So that was starter and now we move onto main course! Diabetes often goes hand in hand with CF because our pancreas doesn’t work. Sometimes you remain type 2 for a long time and then move to type 1 however both are not easy to manage.
Together with this many CF’s develop very weak bones due to malnourishment over the years and their inability to absorb nutrients from food. This results in osteoporosis and can be an issue when going into transplant, due to the amount of steroids you require after transplant to stop rejection, which notoriously weaken bones. Horse riding is probably not the best hobby for this!!
Dessert!
However let’s not forget dessert!! After we are done with starter and main course, we then get the delight of a slice of mental health for pudding!! Living with any type of relentless chronic illness takes it toll at times. You not only have the strain of regular suffering and everything needing that extra bit of planning but you also have to try and accept that life is very likely a lot shorter for a CF person - never an easy pill to swallow. Often there are medication reactions which mess with your head and at times this can cause bouts of depression, trauma and anxiety. These can at times be the most difficult to deal with.
Snacks!
Then last but not least you have snack time and just for good measure the health class threw in a 2 for 1 offer and gave me chronic ashthma! Not linked to CF just pure bad luck! I mean why wouldn’t you!!
Coffee!
Finally if you have any room left for coffee you can enjoy: infertility issues, bowel obstructions and liver disease!!
I may make light of CF above but as many of you have seen this illness is brutal and holds no prisoners, behind closed doors I lead two very different lives, so I want to do what I can whilst I can. So if you’d like to share a glass of wine with me as I find this the best solution to all the above, then I’d be SO UNBELIEVABLY grateful for that glass of wine on my ‘go fund me page’! Xxxx
Gosh I don’t know where to start with this and it is the first time I’ve ever done a go fund me page! I’m going through quite a period of nostalgia at the moment. It’s been a huge couple of years with lots of highs and many lows! However dwell on negativity we must not! The life train keeps moving and onboard we are getting!
It’s come to that time after 15 months of double lung transplant work up, 2 operations this year, CF treatment day in day out including nebulisers, oxygen machines, counselling support, physio support, diabetic support, infection control, drug allergies, scans, bloods, x-rays and enough medication to run a pharmacy, that I thought it’s time for me to give back to CF !
With my birthday coming up on the 2nd of Feb, I wanted to raise money a little differently! You see I worked out if everyone were (in theory) to come to my birthday drinks and buy me a $10 (£6 UK) Birthday glass of wine but instead donate to my CF ‘go fund me page’ that would be a lot of wine I mean money for CF ! It’s horrible to ask for money but it’s not awful to ask for a glass of wine is it, so I figured it was a good way!!! :)
People often say to me, ‘what is life really like with CF Amy’ and I quite often find myself wondering the best way to explain it! Firstly it’s the most extreme roller-coaster, so many highs and lows with an abundance of loop the loops in between!!
An average day starts with nebulised antibiotics at 5am (Rory loves the sound of the morning tractor!), then breakfast followed by 4 inhalers, 35 pills for the day, exercise, physio session, about 6 cough your lung up sessions, at least one ashtma bout, at least one low blood sugar, 8 hours at the office and an abundance of sleep if I’m lucky! Repeat!! I like to describe it as a suite of meals as follows:
Starter!
Cystic Fibrosis is one of the biggest genetic killing illnesses in the western world. It is a degenerative illness and a very young killing illness. It mainly affects the lungs by causing them to build up with thick sticky mucus. On paper that doesn’t sound that bad ah, until I say to people ‘well remember that time you had a terrible cold where you could not stop coughing, the rubbish was running down the back of your throat, you were spitting rubbish up and you were up all night trying to stabilise it!?! Well it’s like that 365 days per year! Not only this, you also get the lucky bonus ball of not breathing too!! In lung disease the discomfort of this is huge. You wouldn’t believe how much breath it takes to chew food or lift your arms above your head to brush your hair when your lungs are somewhere on in mid twenty % range! Crazy isn’t it and extremely scary! As a result we end up with chest infections for fun. To treat this we go on some serious intravenous antibiotics to kill the amount of bacterial in the mucus, These work amazing but also kill every good bug too! These microorganisms travel like ‘wild fire’ and spread sooooo fast blocking all the bronchial tubes. This in turn reduces the lung capacity every step of the way, eventually leading to respiratory failure and the need for a double lung transplant.
On top of this you have the digestive issues where your body doesn’t digest fat and you can’t put on weight, let me tell you this is great when all is fine because I can eat as much chocolate, wine, crisps and anything else I fancy without putting on much weight! However every up must come down and when we get sick we have no weight to fight with and plummet! Low weight in CF is associated with lower lung function and repeat infections and hospital admission. It’s a costly bonus but I am afraid one I must continue!
Main Course!
So that was starter and now we move onto main course! Diabetes often goes hand in hand with CF because our pancreas doesn’t work. Sometimes you remain type 2 for a long time and then move to type 1 however both are not easy to manage.
Together with this many CF’s develop very weak bones due to malnourishment over the years and their inability to absorb nutrients from food. This results in osteoporosis and can be an issue when going into transplant, due to the amount of steroids you require after transplant to stop rejection, which notoriously weaken bones. Horse riding is probably not the best hobby for this!!
Dessert!
However let’s not forget dessert!! After we are done with starter and main course, we then get the delight of a slice of mental health for pudding!! Living with any type of relentless chronic illness takes it toll at times. You not only have the strain of regular suffering and everything needing that extra bit of planning but you also have to try and accept that life is very likely a lot shorter for a CF person - never an easy pill to swallow. Often there are medication reactions which mess with your head and at times this can cause bouts of depression, trauma and anxiety. These can at times be the most difficult to deal with.
Snacks!
Then last but not least you have snack time and just for good measure the health class threw in a 2 for 1 offer and gave me chronic ashthma! Not linked to CF just pure bad luck! I mean why wouldn’t you!!
Coffee!
Finally if you have any room left for coffee you can enjoy: infertility issues, bowel obstructions and liver disease!!
I may make light of CF above but as many of you have seen this illness is brutal and holds no prisoners, behind closed doors I lead two very different lives, so I want to do what I can whilst I can. So if you’d like to share a glass of wine with me as I find this the best solution to all the above, then I’d be SO UNBELIEVABLY grateful for that glass of wine on my ‘go fund me page’! Xxxx
Organizer
Amy Collins
Organizer
Applecross WA
