Hi

[Keeefy]

I have been diagnosed with Interstitial Lung Disease, but awaiting scan results to determine if my consultants 'working diagnosis' of Ideopathic Pulmonary Fibrosis is correct.

If it's confirmed, what can I expect?

Thanks.

[Hidden]

G'day Keeefy

I am a carer for my wife, diagnosed in 2014 with IPF.

I would wait until it is confirmed,then seek advice from a lung Dr.

Symptoms vary,usually SOB is the first indicator that there is a restriction in the lungs, but what the cause is needs to be confirmed by a Pulmonologist.

Please do not use Dr Google to find answers.

Will (Australia)

[Keeefy in reply to Hidden]

Hi Will,

Thanks for your advice, good advice! I hope your wife is doing ok!

I will take your advice, thanks.

Never did get to Aussie, although did try once

Keith.

[Hidden in reply to Keeefy]

You are most welcome Keith.

I would suggest you get a small notebook and start recording any changes you notice, SOB, runny nose, coughing, and what you were doing when they occurred?

Saves trying to remember, when asked, during a visit to the Dr.

Above all Try not to concern your self too much, pre- guessing is not a really good idea.

Will

[Keeefy in reply to Hidden]

Morning Will,

Thanks for your excellent advice, I think I'll start a journal of some sort, have a good day!

[Hidden in reply to Keeefy]

Great Keith,

You will find it very useful in days to come.

We have started a photo album of Susan's journey (Not my idea) but my lady wants this so she can reflect after transplantation.

Take care

Will

[Keeefy in reply to Hidden]

Morning Will,

Just want to say, 'Good to 'meet' you, wish it could have been under better circumstances!

Not sure about a photo album for myself though, the camera doesn't like me, it tells lies, it always shows me as slightly overweight and OLD

Thanks, stay good!

Keith

[Hidden in reply to Keeefy]

You should try looking in a mirror Keith, I can't believe the poor quality in the workmanship.

Some days the old bloke i see in there worries me.

I think he needs to be put out to pasture.

Night time here

Stay happy

Will

[PastMeBest]

Hi Keeefy, I was diagnosed in November 2015 with Ideopathic Pulmonary Fibrosis. If you are diagnosed with it it will depend how advanced it is as to the effect it has on you. I find a positive attitude helps a great deal. I concentrate on the things I can do and not the things I can't.

I am at the stage where I need oxygen if I exert myself physically but I am still very independent and I do as much as I can, just a bit slower. One of the most annoying things I get with having IPF is a cough. When I was first diagnosed with IPF I was coughing most of the time. I was told that a low level of painkiller would help to suppress the cough but if you take too much painkiller it had the opposite effect and aggravates it. I seem to have found a happy medium and I don't cough very much.

Hopefully you won't be diagnosed with IPF but if you are there are plenty of people on here who are more knowledgable than myself who will be willing to help you.

Best Wishes. John

[Hidden in reply to PastMeBest]

Well chosen and wise words John

Will

[PastMeBest in reply to Hidden]

Hi Will, I was just on my way to bed when I saw Keeefy's post. With being so late I didn't want to leave him without a reply. I was forgetting that there are people on the other side of the world where it is early morning.

I hope that you and your wife are keeping as well as you can.

Regards.  John

[Hidden in reply to PastMeBest]

Thanks John, hope you get a good nights rest.

We have just had 2 nights in a row of perfect sleep.

Forgotten how good it feels

Will

[Keeefy in reply to PastMeBest]

Hi John,

Thanks for your reply, I'm sorry to hear that you have this dreadful disease, I'd never heard of it until three weeks ago! I must admit, it does come as a shock to learn that I may have it.

I hope you are keeping as well as you can and that you keep in good spirits, I guess that can be a problem area! Glad to hear that you keep a positive outlook!

Where are you from, I'm a Lancastrian.

[Keeefy in reply to Keeefy]

It's now one minute into Thursday, I had better grab some sleep, good night, God bless.

[PastMeBest in reply to Keeefy]

Hi Keeefy, I'm a Yorkshireman but you wouldn't have guessed that from my picture as I aren't wearing my flat cap and haven't got my pigeon with me. Lol.

Will (BurraboyEasty) has given you some very good advise. You may be worrying yourself needlessly. Before I was diagnosed with IPF I thought wrongly I had Asbestosis. Shows just how wrong you can be.

What bothered me more than anything is that my wife has COPD, Asthma and other problems and I was worried that I wouldn't be able to look after her. We just help each other like we always have and manage OK.

Try and keep positive and remember there is always someone worse off than yourself.

Regards.  John

[Keeefy in reply to PastMeBest]

Hi John,

Thanks for your good advice, strange as it may sound, although the news did come as a shock, I'm not worried for myself, it's just concern over family that fills my thoughts, your situation I sounds very difficult, you are blessed to have each other, to care for.

Cheers

Keith.

[Hidden in reply to PastMeBest]

John

Have you tried using Fishermans friend.

Just pop one under your tongue when the coughing starts.

Saves taking drugs.

We use a vaporiser in the bedroom at night, topped with a drop on eucalyptus oil,  works wonders.

Will

Will

[PastMeBest in reply to Hidden]

Hi Will, sorry for the delay in getting back to you. Regarding the cough, I have tried Fisherman's Friend but unfortunately they tend to give me a burning feeling in my mouth. I tend to use Broncho Stop Cough Pastilles which are made from Thyme herb extract. I don't know if they are available where you are Will but I find them useful and being made from herb extract they don't interfere with my other medication.

While in bed I also use a few drops of Olbas Oil on the bed sheet (just in front of my nose) which helps keep the airways clear.

Regards John

[Hidden in reply to PastMeBest]

G'day John

Thank you for your reply.

Susan uses a pharmacy supplied tablet  Panedene Forte, containing Codeine, apparently quite a few sufferers are using codeine based meds to try and help with the coughing.

I will look into the Broncho meds today.

Many thanks for the info

Will

[PastMeBest in reply to Hidden]

Hi Will, to try and suppress the cough I am on Codeine Linctus 15mg/5ml and take two 5ml spoonfuls up to three times a day. I also take Paracetamol 2x 500mg capsules four times a day. I was informed that a low level of painkiller helps to suppress the cough but if you take too much it has the opposite effect and aggravates it. 

Broncho Stop (Pastilles) can be bought over the counter at most supermarkets/pharmacists without a prescription. I mainly use one if I am out and about as the constant coughing can draw unwanted attention.

Managing the cough can be a bit of a juggling job but what I have mentioned above usually manages my cough most of the time. 

I also have Codine Phosphate 30mg painkillers but only use them if the pain from my arthritis gets too much.

Hope you and your wife are as well as can be.

Regards John

[Hidden in reply to PastMeBest]

Thanks John

I have ordered the Pastilles from the UK today.

Nothing to lose have we??.

Kind regards

Will

[Northernfi]

Hi Keefy, my husband was diagnosed with IPF last year and one of the first things we did was contact the local IPF support group. They provided us with an excellent information pack and lots of info, but the best thing they did was show us that they were living good, positive lives while having this disease. We've been to some excellent talks and presentations as well as social outings and been invited to take part in trying out new support materials. Hopefully it won't be IPF but if it is, I'd definitely recommend checking on the British Lung Foundation website to see if there's a support group near you.  Fiona

[craftyone in reply to Northernfi]

Hi keefy I have interstitial lung disease, I was diagnosed with it 5 yrs ago. It is a very cruel disease and the majority of the time they do not know the cause. I am at the stage of very high dose steroids and oxygen 24/7. If you get the correct diagnosis insist on seeing a specialist straight away and do not take any nonsense there are specialist in this field around the country, ask questions, write down the answers so that you can digest things afterwards. The BLF have some very good information booklets which you can order on line , which are free. I hope you get your answers soon. Stay positive and keep smiling. Jenny

[Keeefy in reply to craftyone]

Morning Jenny,

Thanks for replying, I'm sorry to hear of your diagnosis and obvious discomfort, I hope that somehow the symptoms will be lessened!

You are right about writing down information given, I came out of my one consultation, thinking "well that's not too bad", he didn't fill in any of the gaps. It wasn't until I got home and checked out what IPF was, that the light came on.

Thanks for your very good advice, if you can stay smiling, so can I

Thanks Keith.

[Keeefy in reply to Northernfi]

Morning Fiona,

Thanks for taking the time to reply, I'm seeing the consultant on 15th April, till then......

I certainly will check out support groups, I'm still working at age 65, my plan was to continue till 66, then likely go part time, the plans of men eh?

I do intend to fill life as much as possible, in fact I'm off to Zambia at the end of the month (church), hopefully all will be well.

I hope your husband is doing ok.

Keith

[Ambiman]

Keeefy I have ipf diagnosed almost two years now, initially I found the British lung foundation site and organisation a great help to help understand what the future holds. After you have a confirmation of you diagnosis join a support group who from their posts will fill in some of the gaps, finally always remain positive.

[Keeefy in reply to Ambiman]

Hi Ambiman,

Thanks for your reply, I certainly will continue to seek help and advice from BLF, even if IPF is not diagnosed, ILD has been diagnosed, so all support is welcome.

If I can be of help to others also, all the better.

Thanks for your encouragement, stay well!!!

Keith.

[Keeefy]

Hi, 

Well just a quick update, I have had the scan results, much as expected, IPF...moderate?

No treatment offered, just recommendation to have follow up meetings every 4 months.

Some good advice to defend against this disease, is to excecise to my ability, so been to the gym today #motivated

Keith

[Mendy in reply to Keeefy]

Hi Keith, did you see the CT scan results? What did they say? Maybe u ll try to get second opinion? There are some treatments for ipf, so you should ask your doctor about them.

[Keeefy]

Hi Mendy,

No, I didn't see them! I'm not aware of any treatments, not until the lungs have deteriorated to -80%, or so I'm led to believe!

God Bless,

Keith

[Mendy in reply to Keeefy]

Keith, i read the posts here from people with ipf, some of them take  pirfenidone or nintedanib, antifibrotic treatment and it helps to slow the progression of disease.