Apologies if this sounds like a moaning e-mail but I'm at my wits end.
I've had a fungal infection now for over 18 months and due to tolerance problems and the bug becoming resistant to the normal treatment, I need IV drugs for 6 months. The specialist team looking after me has applied to my pct for the funding for the treatment but all it seems I can do is wait for an answer. They have already come back asking for more info which was supplied with the intial application so at the moment I'm in the position of waiting for a response to the additional info we supplied.
The drug is expensive and I know the infection isn't life threatening but it is life limiting. I currently not working but my husband is just waiting to hear if he is going to be made redundant so one of needs to be working.
Does anyone know how you would go about getting hold of a drug your specialist recommended and getting it administered? I'm so fed up with waiting we are trying to find other ways to get the drug quicker as I stand a better chance of getting a job than my husband( works in financial sector!). I need to be clear of the fungal infection as I normally work in pharmaceutical manufacture, not to mention the worry I have of not being able to get close to people because I worried my breath smells. I'm also getting sicker as time goes on and keep on getting admitted to hospital because I'm being sick & can't keep my steroids down. If I'm lucky depending on which hospital I go to I can sometimes get a one off course of treatment which makes me better for about 5 weeks. I've spent 36 nights in hospital this year due to this problem and not my asthma for a change!.
We asked if we could pay towards the drug and were told you either pay for all the treatment or none of it. I know others on here have had trouble getting Xolair and the like and wondered if there was anyone who had any advice on how I might get my treatment sooner.
Hope everyone else is doing OK and enjoying the extra day off this week.