IPF - Feel as though I’m not supported

[Lindeelou52]

I was diagnosed with IPF 5 months ago. I don’t feel as though I am receiving any support. I am trying to learn as much as I can about this condition and what I can do to help myself. I’ve asked my gp and the hospital I was referred to if I can attend a certain hospital that has a specific IPF unit - no. I’ve asked about trying the drugs - no. I’ve asked for an appointment, as I’ve only had a preliminary assessment - was told no appointments available. I thought the way in which I found out about my condition was disgusting. GP called, “Good news. You don’t have cancer. You have fibrosis of the lungs. If it’s ok with you, I’ll refer you to clinic”. “Great, I thought. I don’t have anything serious.” I didn’t have a clue what IPF was. Thought I had fibroids. Until I googled it, that is. I’m feeling frustrated, angry and lonely with all of this. What can I do? How do other suffers get appointments at centres of their choice? Any suggestions would be greatly appreciated. Thank you.

[sassy59]

Hello Lindeelou, sorry to hear of your IPF diagnosis and your appalling treatment. You are amongst friends here and I’m sure you’ll get other replies soon.

I just want to welcome you. Xxxx

[Lindeelou52 in reply to sassy59]

Thank you! xx

[AngieB72]

Hi

I have PF. There are support groups all over the country, you may want to find your local one to go to to help you find out more. There are two charities that are worth looking up to. Pulmonary fibrosis trust and Action for pulmonary fibrosis. Good luck and try not to use Dr Google.

[Lindeelou52 in reply to AngieB72]

Thanks! I’ve found a support group near me and I’ll look into the charities. I wish I COULD stay away from Google - easier said than done ha, ha

[Hacienda]

Hi Hun & Welcome. I am sure you will get lots of Replies to your IPF, I can't help you, although we do all have different Lung Conditions. Stay Strong. xxxx

[Lindeelou52 in reply to Hacienda]

Thanks for the welcome! xxx