Crossstitch

[Xrossstich]

my husband was diagnosed with Pulmonary Fibrosis about 18 months ago, so far he’s had two breathing tests with the results by a phone call. We get no face to face appointments to ask questions etc, we feel completely isolated, surly he should behaving tests at a clinic or somewhere we could discuss it with someone. The coughing is awfully upsetting & with the phlegm he’s bringing up we’re completely alone & very worried.

[pepparuby1]

I don’t know what to say! I haven’t seen my GP in over two years chest infection I get rescue on line then a nurse called me and said she was concerned with amount of rescue packs I was going through she then sent me for a chest X-ray but the results just said typical of Copd!!! Incredible

[MoyB]

This may sound daft, but have you actually asked for a face to face appointment with your GP to talk things through? A lot of people don't realise how proactive they need to be these days. I kept being given phone appointments until I actually asked to see someone and it was no problem at all to book a face to face appointment, but I had to speak to the GP on the phone first. I appreciate that not all surgeries are the same, but if you haven't already done so, give it a try.

Also, you could ask for your husband to be referred to the Community Respiratory Team if there is one in your area. I find them very helpful when I have questions to ask about my lung condition.

And don't forget there is the helpline at Asthma + Lung UK you can ring.

Meanwhile, other members of this forum may be able to help through sharing their own experiences.

We're a friendly bunch and there will always be someone willing to offer some help or moral support.

The feeling of being abandoned by the medics is not unusual! But that doesn't make it right. Anxiety will do neither of you any good so if I were you, I'd get on the phone asap and tell the GP your husband needs a F toF appointment. Don't take 'no' for an answer.

All the best, xx Moy

[Xrossstich in reply to MoyB]

thank you MoyB, we have an appointment next week with a Doctor, I’m compiling a list of questions to ask her. Cross-stitch.

[MoyB in reply to Xrossstich]

That's good. I hope you find it helpful. Xx Moy

[bwp91]

Have you looked at the Pulmonary Fibrosis Action website? There’s lots of information to help you, a helpline and possibly a support group near you.

[Xrossstich in reply to bwp91]

thank you.

[Xrossstich in reply to bwp91]

there’s no support group near here unfortunately, thank you.

[bwp91]

That’s a shame but they do quite a bit on line e.g. webinars. I’m in Nottingham and you could probably join the FB Page at least. The Action group seem to do a lot e.g. with a newsletter and can sometimes help with equipment.

[JJ_7]

I am sorry to hear of your isolation and the lack of medical support. Some great advice in this group. I would only add that in your meeting you should request a referral to the local hospital pulmonary specialist. Good luck and I look forward to hearing about the outcome of your GP appointment here

[Xrossstich in reply to JJ_7]

He has seen a consultant at the hospital, we’re waiting for a transfer to a local hospital, seeing the Doctor next week and it’s all on my list, will let you all know how we get on, thank you for your concern. Xrossstitch.

[kenbren]

I was diagnosed with IPF 3 years ago. You need a walking test as well as breathing tests x/ray, Scan and speak face to face with a consultant I have also been to a specialist hospital referred by my consultant in my local hospital

I am a widower and have nobody to discuss these situations with so do it myself, try to find out about your situation

Have you been prescribed any medication there are several options also rehab classes with other people in the same situation as yourself

I wish you all the best take care

[Xrossstich in reply to kenbren]

He was referred to a specialist at the hospital and had a breath test & blood test. We’re seeing the Doctor next week so I’m compiling a list of questions etc to ask thank you. Xrosstich