Turning into my Gran!

[emsy]

Seen the immuno today, so now I have to have daily nebuliser and also physio for my lungs to go with the weekly infusions. I'm turning into my Gran!

[liz2mac]

Tee hee Emma, I hope you've been enrolled into the glamorous Gran's club! I've recently been taken off of my daily nebuliser so it may not be a permanent friend in your life. What type of nebuliser are you using?
Liz

[emsy]

Lol I so wish I was glamorous! Not sure what type of neb i will have yet, waiting for an appointment. Mum is the resp secretary and said that only they can start People on them so I guess I will be waiting for a referral to them. I think he said it was just a saline solution or something to keep my lungs clear as I'm struggling to get rid of chest infections. I wouldn't care, whist packing last week for my house move, I found a portable neb that I inherited from my Gran "just in case". I threw it out thinking "I've had this years and never used it, I may as well chuck it out as I will never need it". Guess I tempted fate!

[liz2mac]

Oh for goodness sake what kind of coincidence is that! I've found that nebulising saline really does help so I hope it doe for you. Different nebulisers are designed to different things. I have one which actually has a function that gets meds or saline into the sinuses as well as being able to use it for the normal stuff of getting meds into the lungs. Not a lot of the Dr's know about it though, so if you have problems with your siuses as we;ll as your lungs I could let you know the details.
How are things going re finding yourselves somewhere to live?
Liz

[emsy]

I don't really seem to have sinus problems as such thank goodness, it's all lungs and gastro for me (although my consultant doesn't seem bothered about the gastro side of things).
Re finding somewhere to live: we have had an offer accepted on a new place so now it's going through all the legal rigmarole again and the guy we are buying off needs to find somewhere. Hope he gets on with it! Meanwhile all 4 of us ave descended on the in-laws!!! I am very stressed and keep bursting into tears for no reason, particularly at work which in't good. Everything that has happened this year has finally got on top of me I'm afraid :-(

[emsy]

So got a letter from physio "your doctor has referred you but we have no appointments available so you are added to waiting list". No sign of nebuliser, I guess that will come from physio as I know for a fact respiratory have had no referral (I have a spy in respiratory dept!). Meanwhile, chest infection is not shifting. Had it weeks, antibiotics couldn't clear it which was why immunologist wants me on a neb and physio. Guess I've got 18 weeks of this whilst on waiting lag :-(

[gilliem]

I'm sorry to hear this is dragging on for you, Emsy. All I can offer is sympathy.
Best wishes,
Gillie.

[slf]

hi emsy
We have a system which i thought was universal now,the GP just gives you a reference and you arrange the referral yourself,thus in theory,offering choice. it does seem that another physio dept even if not terribly convenient would be preferable to waiting for months(absurd).
Just a thought
Hope the housing works out quickly for you,that must be incredibly stressful,normal house purchase is pretty awful!
Steve

[emsy]

Not sure about the self referral. We have choose and book but this still needs a letter to allow you to do this. My referral wasn't from my GP, it was from my immunologist. I have contacted my immunology nurses and hope that they will return my call......hopefully they will be able to explain what is happening. I'm not even convinced the physio will help. I have lost all confidence in anything physio related since they have introduced a consultation over the telephone system at my local hospital! I kid you not!!! It's the neb that I feel I am really needing right now

[liz2mac]

Hi Emma,
Sorry to have been out of touch. The very best physio I ever found was one who worked in the CF clinic. When our chests are bad we have an awful lot in common with people who have Cystic Fibrosis. I would suggest that you ask your immunologist or GP if there is such a clinic anywhere near you and them ask for a referral to it. So sorry that life has been such a pain for you, it always comes togehter doesn't it? Any news on the house move?
Liz