I got diagnosed at age 21 (now 29) after a long battle of chest and sinus infections, i've undergone sinus surgery and battled with pneumonia constantly over the last 2 years. I have a specialist in City Hospital however trying to see them is getting to be hard work. Im meant to see her every 6 weeks, however had my first appt in 2 years in Sept, she told me ' definitely will see you every 6 weeks' only to have 4 appts now cancelled 2 in oct, 1 nov and the final at end of Dec & told i have been put back onto the waiting list.
She referred me to Southampton for genetic testing and has told me she can do nothing for me until i go to this, however the issue being you cant attend if you have been sick 4 week prior to the appt, as i seem to be constantly trapped in a cycle of being unwell, i am unable to make the appt and scared to pre book flights to attend incase i cant make it due to illness.
Im at a loss, i get no treatment plan and it is solely reactive instead of proactive, i have been given acappella for physio at home which i am doing and inhalers for daily use which do nothing for me.
I'm trying to find other patients with this condition in Northern Ireland to find out their treatment plan, how they are being attended & if they are able to give me advice on how i can get the help i need.