Hi everyone, I'm waving from Gloucester UK

[Coolcat6103]

I've recently been diagnosed with scarring on my lungs. It's been an extremely rough 4 months with, what seems like a total lack of concern from my GPs it's taken four telephone spots to actually get a lung x-ray, I even had to call for the results l....scarring on lung no further treatment...bsee asthma nurse!! I'm looking to start a coffee morning or a support group for others who are struggling to get apps/treatment and give reassurance to what is, I've found to be a very lonely path. I'd love to hear other people's experiences of their journey. Also any helpful organisations. I'm a fifty year old woman.

[PaulineHM]

ooooh Coolcat, that is tough. primary care is so overwhelmed at the moment making it difficult for anything much to be done. It seems to be a matter of being assertive and pushing for our results etc.

In early February I had a Dexa scan and only this week have I had a treatment plan from GP.

Just to give you the heads up, if you are a patient in the Rosebank group Surgery, Glos then they have an Acute Respiratory Infection hub ( as a pilot scheme) running. Helpful in case of exacerbation ! Your own surgery can refer you to be seen the same day.

Keep well and infection free.

Pauline

[Hidden in reply to PaulineHM]

Acute Respiratory Infection hub is just what we need here in Bucks, too! What a great idea. Hope it works well in pilot version. Good luck.

[Katinka46]

Hello Coolcat, and welcome to this forum. It is friendly, funny, informative and massively supportive. Yup… I can identify with your concerns. In shedloads. Long crazy odyssey. Are you happy to continue on private messages? I have written up my story and several members gave read it. I have also written it up in a full memoir version.

All the best

Kate xx

[watergazer]

hi and welcome to the forum x

[sassy59]

Welcome to you Coolcat. I’m carer for my husband Pete who was diagnosed with sarcoidosis in 1991 and COPD in 2010. We’ve been pretty lucky in getting good treatment but have to chase things up sometimes.

👋🏻 from West Sussex. Xxx

[Hidden]

Hi Coolcat,

Look up Action for pulmonary fibrosis

They have a helpline who will put you in touch with your nearest support group.

They are full of information and will give you support.

All the best Deborah

[CDPO16]

Hi and welcome Coolcat.

[JPC2]

Hi Coolcat, I had a very similar experience a few years ago before covid. I was diagnosed with copd at the age of 40 and still have no treatment plan and struggle to get any help from my GP. I try and keep healthy by eating well and exercising, oh and I don’t smoke. I’m in Rochdale and a lot of people here are struggling to get any sort of appointment with their GP. This group is very informative and helpful. Take care

[Izb1]

Hi Coolcat and welcome to the site x

[Ern007]

Hi from Lancashire and welcome. I have lung scarring also but my GP does help. There is a massive problem though, Primary care is stretched and and getting an early appointment is not as easy as it used to be.

BTW I forgive Gloucester FC for dumping my football team out of the play offs Take care,

[Misty456]

morning I had “exacerbation” 1.5 years ago very scary ,went off for X-ray and GP said all ok but send you for spirometry January this year had severe chest infection for 3 months…still waiting for spirometry tests……finally this week had the spirometry tests to find out X-ray showed scarring on lung and I have COPD…..only took 1.5 years!hopefully now with inhalers I should be in the system …so keep pushing x

[PaulineHM]

Hello Mons, did you mean to reply to Coolcat rather than me I wonder?

Just wondering as I am ok thanks.

Enjoy your day.

[Mons in reply to PaulineHM]

thank you Pauline, yes it was an error! Glad that you are ok - we all need to stick together! x

[Mons]

I have scarring at the bottom of my lungs due to covid 2020 (was in ICU). I have an amazing respiratory nurse at the hospital that I see and feel lucky to have her expertise. I am on my 3rd or 4th different inhalers to try and sort out the breathlessness. At the moment Fostair 200/6 twice a day, plus Ventolin when required, is working well plus a Montelukast tablet of a night. It has taken a while to find the right inhalers and the Montelukast really helps. Took about 6 weeks for the Fostair to properly kick in. I have recently had CT scan and echocardiogram to check for heart problems (nothing found phew). Please continue to keep contacting your GP if you need any help. This forum is a really great way of realising you are not on your own. Good luck x

[Alberta56]

Good for you for starting a support group to help others in the same boat as you. Many of us on this forum have had trouble accessing the help we need. Persisting, making a nuisance of oneself seems to be the only way. My previous surgery was excellent at shilly-shallying, and we were glad of a chance to leave them.

[Buzzytruk]

Sounds as if you need a chest consultant .......ask your GP politely if he would consider a referral. Add on the hospital name and possible medic name. I did and it worked.. I recently was called into see the COPD nurse for an annual checkup. All was well till I said I don't have COPD. She was miffed to say the least , and told me I didn't need to see her again as there was nothing she could do for me , that included getting me rescue packs. ...... I do have a chest condition by the way.......

So I have to try and get in to see a doctor. Have been at this surgery four &half months

and think it's time I saw someone . Someone who might just be interested enough to help me.......I have been Floxed. A particularly nasty antibiotic with so many side effects it's

quite unbelievable. Good luck , and don't give up. .....

Jo. ☺️