Hi jglow, and welcome to healing well!
Wow, this sounds bad!
When you are in hospital there is always an increased risk of infection. To reduce this risk, our team make sure we always get our own room, and our own shower and toilet, if possible.
These are pretty much the CF Trust guidelines for the rest of the UK aswell.
So we eat more when were in hospital, were also given free reign in the canteen. We also have our own CF kitchen on the ward were usually put on (This is a health and safety risk, as staff won't keep it sterile. But it helps with eating, and we can make our own shakes up, when we want them.It also gives us something too do when board, nothing as fun as cleaning the kitchen, then shoving black paper towels under cleaners noses.)
As I say, this is all thanks to the CF Trust, and pretty much all hospitals across the UK that have a CF center have the same things.
Now, I'm not sure on whether you can actually demand things where you live. We can basically demand anything that might help us heal quicker. Been in a bay, especialy on a chest ward, will not benefit your health.
There is no real excuse for them not putting you in a seperate room, as it's not as if they haven't got enough time to place you. It's only short notice, when they have to admit you straight away at our hospital, that they even consider putting you in a bay.
We can always opt whether we want treatment at home or in hospital (although it takes a bit more persuading for the hospital route). If you're already feeling tired, and worn out from infection, sometimes you need that bit of extra help to make sure you get all your doses on time.
You can always do exactly the same stuff at home though. You can make sure you use your vest and nebs, whenever you need them.
If you think you have the energy to really be rigorous with your treaments, and your IV scheduale, ask the doctor, he can only say no. If he does sayno, ask him why not. Soemtimes you have to be real assertive with doctor's.
Even my CF consultant, I have to shout at a bit to get him in gear.
Don't feel bad about
asking for things, as at the end of the day, it's your health, and you have the right to demand everything to look after it.
Hope it gets sorted soon, and keep us posted
Co-moderator in the: Cystic Fibrosis Forums
Woe to the child which when kissed on the forehead tastes salty. She is bewitched and soon must die.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Tobi nebuliser, Serevent, Salbutamol, Sertraline, Odansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Omeprazole.
Had a Port-a-cath fitted on chest wall since 11th Nov 05