Bad patch

[dianesistern]

sorry but just need a little moan my treatment has been reduced and spaced further apart and ever since i have been ill firstly shingles then sinus and chest infections plus numb ears and now a massive big cold sore to top it all ime getting fed up with it all and its nearly as bad as before diagnosis, i also feel that my reflux and gastro problems are flaring up all this is taking place during a change over of hospitals so i dont know who to go to my next clinic appt is not until september urrrrgh moan over. Diane

[mali42]

Hi Diane

I don't think i could stand going back to how i felt before treatment,

If it was me I would be phoning my immunologist every time I had another infection or shingles etc, if you keep on they might get the message,they say those who shout loudest get heard, i know its easier said than done when your feeling rotten.

Sorry I'm not much help and hope you get your proper treatment soon.
Malcolm

[liz2mac]

Hi Diane,
This is horrid for you and very difficult for you to deal with. I am more than willing to act as an advocate for you and talk to the hospital on your behalf, but I need you to say that this is what you'd like me to do in writing. If you'd like me to help, just email me at 'A PID Organisations Email' You really shouldn't be having to cope with all of this after diagnosis and treatment. I have written to Papworth asking for an appointment to go to visit them to discuss all of this. I am still waiting for a reply. If I have not heard by the end of this working day I will have to escalate my response to this extremly serious matter.
Liz.

[dianesistern]

hi thanks Malcom i know i need to stamp my feet a little but you are right it is so hard to do when you really need too, and thankyou Liz i have been to my GP today and she has put me on antivirals and extra antibiotics but only for a week ime thinking that maybe i should call papworth and ask if they can see me before september i feel a bit guilty asking for their advice as ime having my treatment locallly now its left me in a no mans land a bit as although treatment is ok locally they dont have the expertise to treat everything else and as we all know cvid manifests its self in so many ways but there is not one specialist who can deal with them all only an immunologist and they are very few and far between i will send you an email liz giving you permission to speak to them i feel a bit guilty because the care i have always had from papworth has been excellant Diane

[liz2mac]

Hi Diane,
Don't feel guilty, you've only been trying to sort out the best way for you to get your treatment. I've had a conversation with Papworth about my going to see them and I hope to have an appointment soon.
Papworth has such a good reputation and I'm sure we can sort this out. Hope the meds start to work soon.
I've emailed you Diane.
Liz