Pulmonary Rehabilitation

[ProudYorky]

Hi all not been on for a while I have ILD diagnosed since March last year ,since Xmas I have had chest infections that I could not get rid of no matter what they threw at it ,biotics and steroids mainly Doctors last Fri gave me all clear but I'm left with this anoying cough and chest pain on my right side when I breathe my question is should I leave it for now or should I go back to Drs I really don't want to go to be honest as I feel I'm never away and it's embarrassing plus there's not a lot they can do as there knowledge on ILD is very limited and they always say they would prefer me to discuss things with my consultant but don't see him while March does anyone else feel same

Cheers everyone

[sassy59]

Hi Kakariki, never be embarrassed about going to your GP, they’re there to help when needed.

It’s such a nuisance though when you just want to feel a bit better. Is there anyway you can bring the consultant appointment forward? I know that’s not always possible but worth a try.

Wishing you better days ahead. Xxxxx

[ProudYorky in reply to sassy59]

Thanks I've tried that but there like gold dust I've been told to ring back everyday to see if any cancellations but no luck so far and it depends who answers phone how helpful they are to be honest I'm a bit fed up as when I see consultants all they can say is there's not a lot they can do apart from steroids which I'm trying to leave well alone for as long as I can and because my oxygen levels are ok they seem happy .I'm really not in a good place at momment and on top of all this I've been waiting nearly 12 month for a court date because I'm fighting for a pip award at tribunal thanks for your advice appreciated x

[sassy59 in reply to ProudYorky]

Hope things improve soon, we’re here for you so please stay in touch. No need to cope alone. Xxx

[Oshgosh]

Know what you mean about lack of information about ILDs I have a diagnosis of NSIP,have had the diagnosis about 15 months agoAt first I drove myself crazy looking for information.

There isn’t any.it took me. While to come to terms with this.

My GPS don’t know much about it,although they have been as helpful as possible.

Also have rheumatoid athritisand lupus.

I wondered if you have any helpline numbers.

I have a helpline number fortherheuatologynurses,also a number for theILD nurses.ifanswerphone is on they do-get back to me which is helpful.

If you haven’t got ahelpine number,perhaps you could ring the consultants secretary and ask if there is anyone you could speak to.

Re the ILD I get random chest pain.

I don’t cough as muchas I used to.

Now my medication is sorted i dontcaughas much.but then again i need to cough toclear my chest.

I know it’s hard togotote GP as they don’ t really know whattodowith you,this is speaking from experience.

It’s not easy having a raredisease

[ProudYorky in reply to Oshgosh]

Many thanks no I haven't any numbers to ring I start a pulmonary rehab course on monday so maybe I might get somewhere . I know what my problem is I'm not dealing too well with it I'm only 64 and always been able to sort things out being an x decorator always on the go this has been a shock to my system .I don't want to go round moaning hate going to Drs hospital ect and I tend to blank things out and deny there's owt wrong silly I know but can't help it hate being so useless .I have never had to ask for help in the past it's always been me that's helped others and been glad to do it .I don't want to ask for help from my family and try to keep things to my self that's why this site helps because I'm annonimous on here .It had helped me you telling me about your chest pain as when I broached this with my specialist he said there was no reason for pain so I'm then thinking it's in my head .My Drs are really caring and helpful as yours are but they've admitted there's not a lot they know all I constantly hear is it's a rare disease and they will know more in time .Thankyou for your reply as you definitely know where I'm coming from .Sorry for going on but your the 1st who knows the situation as it is .

Cheers you take care

Kakariki

[Oshgosh in reply to ProudYorky]

Make a list of what you want to ask the consultant.take a pen and write it down. or else you’ll forget!

I had chest pain over my right lung when i was sickening something.

As my disease has progressed,i get chest pain and pain over my lungs at the back,,drives me daft.

Drs just looked at me.as they do.

Someone said some of the pain was over the base of my lungs.

I’d rung the helpline,they got sick of me and fitted me in for an appointment.

A nurse at a group I go tosuggested I ask for morphine.

Thedrsaidterewas no reason for my lungs to-hurt,he then said no one should be in pain.!

He wrote to my GP,asking him to prescribe morphine

Its now on my repeat prescription.

Just be aware,they told me to take 2.5 mls 4 times-daily

OMG ,it knocked me out.

Then I found out that for breathlessness and pain 1 mgmis more effective.

I take 1 mgm when I get up.

If I’m going out I take another Mgm.it took a while to get used to taking it.it does help with the pain adbreathessness.

Steroids do help your lungs.

They reduce the inflammation in your lungs. Hi know how you feel about ididntlikethe ideaof takig steroids.

When i was admittedas an emergency,( unable to breathe)I had to take steroids.

I can appreciate how you feel,aboutILd

I worked until iwas 67,put all my symptoms down. To age. and decrepitude!they were treated on treated on apiece .meal basis.

Looafteryourself

[RoadRunner44]

Did your doctor ask you to provide a sample of your sputum? If the antibiotics are broadbased and are not working perhaps a more specialized antibiotic to fight the bacteria would be better.

[ProudYorky in reply to RoadRunner44]

No they didn't but I've been back and they say it's cleared up and the coughing is just part of the lung Disease and there's not a lot they can do about that

Cheers

[RoadRunner44 in reply to ProudYorky]

Insist on providing a sputum sample. It will put your mind at rest. Tell your doctor that.