Is this because this type of lung disease is not so common? Or maybe not as serious as other things, so people do not feel the need for support group? I really don't know where it stands in the bigger scheme of things re lung disease.
Anyone have any thoughts?
Pulmonary Fobrosis and other ILDs are not common. There are other sites that specialise in them. It seems to me that a large proportion of members here have COPD. But they are so brilliant and caring that they help us all, regardless of our conditions. So stay with us.
I am genuinely interested in all lung diseases. Mine too, is unusual/rare. So I am curious about anyone's, the rarer the better!
All the best
Kate xx
Yes, Kate your right. I have learned a lot from this site and everyone is so helpful. I too am interested in all aspects of lung disease and am very sorry for anyone that suffers any of these awful diseases. However, personally I am trying to understand my own diagnoses of ILD, which at the moment I haven't been told much . My original consulate only told me I have ILD and is referring me to another lung specialist, but that could take some time.
I have looked on blf site and one other, which I was directed to by someone on here.
What disease do you have kate?
*consultant*
Liked Consulate. Isn't predictive text guesswork great? On my old phone my daughter-in-law's name always came out as Bomb and as she is extremely fiery and volatile it was quite appropriate.
I have chronic thromboembolic disease (now possibly with pulmonary hypertension found on a recent echo) and a small airways obstructive disease which is looking very like Obliterative Bronchiolitis. Not 100% sure on that dx but the only way to be certain is with open lung biopsy that no one wants to do and I don't want done to me. Too high a risk.
All of which was caused by pulmonary emboli, (blood clots in the lungs), after an operation six and a half years ago. Complex, and it has taken for ever to get a dx at all. One of the problems is that no one — no one — has ever come across a patient who has developed OB after PEs. I think I have worked out how it happened and at least one consultant was prepared to accept my theory.
But, oh boy, it has been hard, hard work getting there. I have had to push every inch of the way. Maintaining a calm, rational manner, listening and researching. Never losing my cool. Never giving the doctors the opportunity to go down the psychological route, and — believe me — they have tried, time and again. I now have the lovely Lung Consultant (LLC) who does respect my knowledge and integrity. Makes a world of difference
There are respiratory consultants who specialise in ILD and IPF so you should know much more soon.
The similarity with mine is the OB is a fibrotic disease and so is IPF.
All the best and let me know how you get on. You can PM me via this site if you would find that helpful.
Kate xxx
I have chronic intrinsic allergic alveolitis
I have inhaled spores into both lungs
Can't cure but hope to contain
On steroids, cyclophosamide and warfarin
Because of the drugs I take one of which suppresses my immune system
I now have oral thrush which has entered into my oesophagus
What a bugger. Sounds miserable. Can that be dealt with?
But glad you feel it can be contained, or even stabilised.
K x
Budleigh, that thrush is a menace. In 2014 I had a camera down my throat and the whole oesophagus was covered from top to bottom. I'm not sure if it's still there but I had IV Caspofungin for 14 days and again this year when thrush showed on a sputum test.
Do you have a mouthwash to use after your meds ? I got one and it's helped keep the thrush at bay a little bit. But the consultant told me very casually 'that it's probably in your lungs too.'
It's a constant battle with it.
Hi budleigh4 I have Pulmonary Fibrosis and have a few questions that I think you may be able to answer.
Is it alright if I send you a a Personal Message?
Regards. John
There is a breakdown here from a poll taken 2 years ago.
healthunlocked.com/blf/poll...
mrsmummy, thank you for this, very helpful.
COPD is an umbrella that covers illnesses like empysema and bronchiectasis. Even consultants "lazily" refer to COPD when it culd be more ueful to speak of say, bronchiectasis.
Thak you, Mic
Hi helingmic, the umbrella term covers chronic bronchitis and emphysema. Bronchiectasis is a separate and different condition.
blf.org.uk/support-for-you/...
blf.org.uk/support-for-you/...
Thank you,
I know my consultant speaks of COPD, but I was dx with bronchiectasis at the Royal Brompton and given treatment for this specific illness.
The fact is tht very often bugs like TB and more commonly pseucomonas garft themselbes onto our lungs to make matters more strenuous - to say the least. Yet hope is still here with the many people who speak out, that's the important bit.
Mic
There are several members here with IPF. I don't want to mention there names without their permission but the do post regularly. Maybe not so much on their conditions, but their everyday lives, ups, downs, etc. but all of us who have serious lung disease, can learn much from this forum. Maybe there's a specific IPF/ILD support site, you could mention.
Hi Catwoman, I have IPF and your guess that this is less common than many other lung conditions such as COPD, is correct. Generally, the prognosis for IPF (life expectancy) is worse than for many lung conditions and there are not many treatment options. Lung transplant is the only option really and you have to meet the criteria to be considered for this. There are 2 new drugs (prednisolone and Nintedanib) which are aimed at slowing the progress of the disease but, once again, you have to meet strict criteria (e. g. Lung capacity within certain limits). There are less posts about IPF as there are fewer of us with this condition and many of the posts relate to inhalers and medication which don't apply to IPF. As others have said, members of this site support one another whatever lung condition you have and there are things that we all have in common. I think the other site you have visited was probably actionpulmonaryfibrosis.org This is useful for finding out about research into IPF but is different to this site. Personally, I visit both sites. I believe there is also an IPF group on Facebook. Try not to worry too much about what you read about life expectancy and IPF as there are many of us living well past expectations and still relatively healthy.
Take Care,
Helen
Hi I agree. As copd is much more common it does tend to be discussed more than other lung diseases. There is a smattering of lots of other lung diseases here so there is always someone who can help. x
My dad has ipf and up until the last few weeks has led a normal life. It has been hard since he has become 'ill' trying to find out further information about symptom control but there are many similarities in coping strategies across the different conditions. The importance in early diagnosis is to keep as fit and active as you can...it's certainly helped my Dad who is now 6 years post diagnosis (and had symptoms for years before this). Stay positive, there is lots of research and new treatments under development. I wish you all the best x
Hi Catwoman,
There are a few IPF sufferers on here, but, as has been said by many, people on the site will be very supportive what ever your lung condition. There are a few people on the site that will always raise a smile, then there are words of hope and others that have told of heart break.
My own story is that I have IPF. It was diagnosed last August, after a lung biopsy, which after the results were discussed by a Multidisciplined Medical Committee, decided that it was IPF. I have been very lucky in as much as the first person I saw in respiratory clinc is an IPF specialist. I was prescribed Oxygen Therapy and Pirfenidone. after reaching the full dose of Pirfenidone, after 2 weeks, my body was aching, streaming mucus and I was coughing constantly. It was stopped and a day later I was back to normal. I just failed to get on the Nintedanib trial, so had to wait until it was approved by NICE. I have been taking Nintedanib for 2 weeks, with only slight loosening, side effects.
Unfortunately, I have developed a shunt in my blood stream to add to the problems of the IPF. A shunt is where the blood that has gone around the body, is sent around the body again without having oxygen replaced from the lungs. This is currently being investigated.
I will try to give information from my own experiences when I can, although spending the past month in hospital has curtailed my activities.
Regards tenter
I have had pulmonary sarcoidosis, which is similar to pulmonary fibrosis, for 37 years. I have been on 5mg prednisolone each day for 12 years, but no side affects. I am now 72 and still going strong!
My husband was diagnosed with IPF last year, but later found to have NSIP - which is another fibrosis disease but more rare apparently! However, by that time we'd already joined our local IPF support group which we've found very helpful and supportive.
There is a page on the British Lung Foundation where if you enter your postcode you can find out what groups are in your area. Hopefully I've added the link below.
Thanks you all so much, for sharing your stories, for giving me pointers to get further information, and most of all for the kindness and compassion in all your posts.
I am concentrating on eating well, trying to keep busy and feel positive and hope I can keep as cheerful as all you lovely people on this board.
Thank you everyone.
Lynne
G'day Catwoman
I have put much thought into my reply, and apologise for the "Long winded" version, but if any small segment assists you then it will be well worth it
Lung Fibrosis is one nasty "beast" of a disease. There are around 38,000 recorded cases in the UK at present.
Yes, thank GOD it is in the minority compared to COPD, but the numbers are rising at an alarming rate. There are too many cases involving family members coming down with it. A university in the USA has been calling for blood samples from family members of a Fibrosis sufferer, and there are numerous posts of mothers, siblings, even aunts/uncles who have been afflicted. The common denominator with lung fibrosis is the unknown factor.
The medical scientists are working, hoping to find a cure.
The things I have learned about PF or ILD as it is now more commonly known is that within the disease parameters there are numerous types, some more common than others. To simplify Fibrosis it has been either PF or IPF (IPF no known origin, hence Idiopathic).
My wife was diagnosed in May 2014, Identified with IPF and 3 weeks later told "You do not have IPF). After one week in hospital undergoing tests "You do have IPF"
Of the 6 lung Dr's who examined Susan 3 were of the opinion that my wife was positive and the other 3 were not.
The most important thing we did find out was, not one of the Dr's recommended a biopsy, but strongly advised us NOT to have one as it was too dangerous. They explained that with hardened scarred lungs the possibility of non healing was significant.
As far as I can see after researching this disease, (the following is an opinion only)
There are no "stages" of Fibrosis. There can be a rise or decline in your lung function and this can depend on many factors, having a spirometry test when you are having a "Bad Day" seems to be the main one. The only criteria I am aware of is if your DLCO drops to 40% then you are considered to be at a level where lung transplantation may be considered.
An example Susan's spirometry Nov 2014 DLCO 40% (My wife's lung capacity was dropping 10% every month) Feb 15 20% May 2015 40%
Is it terminal Yes. How Long? How long is a piece of string ? Some sufferers have been diagnosed over 10 years ago and are still with us.
Susan was in real trouble and not expected to be here much after X'mas 2014, so I started to put things into place for when the obvious was drawing near. Then the best news, her % decrease had stopped and was much better in the May 2015 test.
The "beast" reared its ugly head again in Feb this year, with Susan's DLCO at 20% and dropping. We had been on the Tx (Transplant) list for 14 months, when on the 15th July we received the call. We are 16 days post transplant, and hopefully my wife will be coming home tomorrow.
My intent is to give you an example of our journey, bearing in mind that every case is different. My only advice I can give you is DO NOT search Dr Google for answers. and if you are concerned over your treatment PLEASE get another opinion. On your journey the most important thing you MUST do is exercise. This has to be conducted in a group (not in a gym) and under the control of a qualified lung physiotherapist.
I have, or should say, had a friend, he never smoked, and always kept himself fit, exercised
and ate healthy food.
He dropped dead from a brain aneurism. So I guess what I am trying to say is
None of us has a use by date stamped on our body, only the good LORD knows this date.
May GOD bless us all............... Sufferers and carers
Will (Australia)
Catwoman50, IMO, the best thing is to talk more about it so people get to know.
After all, this is why this forum exists.
You can talk about symptoms, but also what you have done to cope with the illness. Have you found you could improve your condition?
What sort of medicine has helped you; anything like vitamins you took that made a difference? Do you do any exercises? Any particular diet?
Is there a special hospital that deals with this?
Have you enrolled with a pulmonary nurse? All this would be immensely helpful to some people who perhaps could comment but because nobody talks about it, dare not.
So up to you to start the ball rolling. What is IPF? What is ILD? Good for you to raise the conditions to our awareness.
Mic
Hello burraboyeasty
Thank you for taking the time to compose such an interesting, thoughtful and helpful post. There is a lot of information there for me to digest. I am afraid of having a lung biopsy to be honest, but the one doctor I saw did indicate that may be the case. That's all I know at the moment,
You and susan take care, and thank you.
Hello helinmic
Thanks for your reply. I don't have any information to share. I am at the beginning of my diagnosis. No nurse, no meds. That's why I posted. My CT and spirometry tests show ILD. That's all I know. Diagnosed 6 Weeks ago by lung specialist, but he is reffering to a more specialised specialist, if you know what I mean.
I agree it's helpful to share, and the lovely people on here are helping each other. However, my point is that it appears the people are not actually out there to post information on IPF/ILD because it is (thankfully ) quite rare.
So while I agree with you about posting to help others, my personal situation is I am reaching out in the dark at the moment and wont know my full situation until the next appointment, which will be....who knows. And there isn't the anywhere as much help/information as there is for copd, cancer etc because it's less understood and rarer.
Hi I'm in the same boat I have just been told I have ILD but that's all also been referred to lung doctor I don't know anything about this condition?
Wondering about Bronchiectasis 
Good sats - so why so breathless?
ILD now classed as IPF
Wondering about FEV 1 counts....
Supporting my husband, ILD - So afraid 
