Three years ago my husband was coughing, he's always coughed, having had many bouts of bronchitus as a child ,a stroke at 47, and diagnosed with asthma just after that, but this cough was different, sounded different. After 3 courses of anti biotics for a chest infection he was sent for an x ray, which prompted all the usual tests, spirometry ct etc, for suspected lung cancer. When the dr said he did not have lung cancer was so relieved I didnt hear anything else that was said. that was my first mistake. I only started keeping a record last march, but since then he has had 15 courses of anti biotics, had pneumonia 3 times, been in hospital 3 times. Finally we found out he has emphysema and IPF. Over the last 12 months he has gone downhill very fast, he has home oxygen for when he does anything that involves walking, and he could sleep for england. He can seem fine, then be blue and gasping for breath, his lips have a permanent blue tinge, his ear lobes too,and his fingers are clubbed and dark grey on a good day. To come on this site and read about others with the same disease is such a comfort, if that doesn't sound too cruel, because I felt so alone and only google to look things up. Please help, what do I ask the dr?, what can I expect? My husband is 68 and living the life of a 98 yr old.
hello, IPF, why I am here.: Three years... - Lung Conditions C...
hello, IPF, why I am here.
The ability to reply to this post has been turned off.
Hello,
I'm sorry to hear this, as it sounds like it got so severe so quickly.
You mentioned he'd always coughed; it's not clear to me whether or not he was a smoker or has an hereditary case (?).
I will say what I know, which may not be a lot yet sometimes one might think others know all of that when they may not know it.
Still, there are some basics that probably apply to the plethora or wide range of bronchial disorders.
Temperature:
I read most often that 21 centigrade or 69.8 Fahrenheit is a good temperature indoors, so not too warm not cold. I keep my house at about this temp.
Quick changes in temperature are not good for people suffering from problems with their lungs and breathing.
Damp & moisture:
Moisture isn't necessarily bad but dampness is, I think, with the lungs. Damp can be causing mould in the home and that is not good.
If you use central heating with radiators, many people don't realise that each radiator should have a container for water attached to compensate for the effect radiators have of drying up the air.
On the other hand, you don't need to be making your home into a laundry with washing hanging up indoors everywhere all of the time.
Milk or dairy products:
I'd say they are not good because they affect mucous production.
I think it is in a way worse to cut some things out entirely if you happen to really like them but cutting down on them in some way is a possibility; that's what I try to do, I always knew milk is a sticky type of product/substance but if you are producing lots of mucous you don't need to be eating and drinking things that help you to produce even more.
Possible helpful remedies for partial relief:
A good thing, a natural thing, that helps to release mucous is sage.
Sage in boiled water.
Let the boiled water cool down a bit, and then infuse sage in it.
You can use this to gargle.
At the end, if you can it's good to drink a little of it too.
Facial Steam Bath:
For anyone who can handle steam baths for the face, like over a bowel with a towel over your head a little in order to catch the steam, thyme, mint and sage are a good combination to unblock the sinuses.
Aerosols (sprays, etc) & perfumes, and strong smells, especially chemically based ones:
All of these are things, I find, to be avoided. It's hard as people, like in your own family don't seem to understand, or they don't think. People like my mother, seeing a fly grabs her can and sprays (has done in he past) like a lunatic all over the place with no attention being paid to whether or not her spray is even getting in food or whatever. However, the lone fly or two is not the only cause for concern, ironing and spray starch - help....
Then there are those velvety pine tree-shaped hangers for in the cr to make a nice smell. They suffocate me, I told my daughter upset she still uses them so travelling in her car is like hell for me.
All of the above is what I can think of right now that I know from personal experience.
One last unpleasantry, is taking part in something, where you have to gather with other, like on a course or at wok, yeah, nobody is allowed to smoke indoors, right, tha'ts great, but you go to get a breath of fresh air in the break only to be gassed by tobacco smoke pouring in at the entrance where all of the smoking addicts have formed a congregation on the front steps, man sparking up while pushing the doors open. I recall, the one woman on my course looked like a true Muslim woman, she was pleasant, I went out to get my breather and was shocked by all of the addicts missing out on a bite to eat or even a drink as all they wanted was their nicotine fix, but there she was too, when I saw her cigarette, I was taken aback, saying, Huh, not you too. And she knew what meant, all as he said was YES.
For me, all of these things above can form a problem situation, when going to someone else's place or having to be somewhere as an obligation.
thankyou for responding. He smoked from the age of 21 to 47. He stopped the day he had a stroke and hasnt had a cig since, neither myself or any of my family smoke and since his stroke we have not allowed anyone to smoke in our house, nor do we go anywhere where there is likely to be smoke, but the damage must have been already done I suppose. He does eat yoghurt, when he doesn't feel like a big meal, he will eat fresh fruit and yoghurt, which I thought would be good for him, obviously not. Thanks for the sage remedy, I am great believer in natural remedies, especial;ly the use of water, he drinks water and has a steamer, ually he just puts hot water in, but will definitely try the sage. I have no sprays as I use natural products to clean, vinegar, lemon etc. Again, thanks for the advice.
You're welcome Amagran.
The yoghurt may be okay. Need to look it up for you, it's certainly different to plain milk.
As I said, if a person greatly enjoys a thing it can sometimes be worse or more harmful to drastically cut it out. I saw this for years with my sister who was always overweight, would ever listen to me but would, periodically, go on mad diets, starving her body of all of the things it was used to and craved, and then when having perhaps lost some weight, reverting back to the use of some of those MISSED products like never before and thus regaining al the weigh that had been lost.
I realised well there's not a lot of use hurting yourself like that, many conditions like my sister's overweight had to do not with what she ate as much as why and in which ways.
Greets Am a Gwanddad (tha'ts the way he pronounced granddad)
Good news that your husband quit smoking.
I did too, after one night thinking I was going to die.
I smoked far longer than he did though.
In the early 60s, I recall me being a little kid and we'd know when dad was arriving as we'd hear him coughing coming down the hill, he smoked Senior Service at that point, and before that Woodbines.
I stole my first cigarette when I was about 3, and matches. I tried it once, took one puff and nearly died right then, but later mum was gasping for a smoke as dad was at wok and he wasn't giving her plenty of money, so roasting as she was, I said, I have some. As she wanted it badly, she said, what, where? And so I revealed my stash, disappointed as I was to see my mother's dismay that the cigarette was broken in half, it was comical actually because at first it looked straight, then drooped down and hung on by the skin (paper).
She complaining (it was absurd) at which point she attempted to light it thankful as she was she nevertheless gave me a clout around the head, at the same time interrogating me as to where I got it.. I told the truth immediately having been proud of myself: i nicked it off you, I said. So she was trying to be the responsible mother telling me off for having anything to do with cigarettes and MATCHES, and also reprimand me for having been as naughty as to do the stealing from her.
I was only trying to help.
This was my last escapade into that, until I was about 12 I think, and started smoking.
Instead of paying for school dinners, I'd buy cigarettes.
Back in those days, nobody set a good example, not in my family anyhow, all of the adults smoking right there at the dinner table, even if others were still eating.
oh you made me laugh here. When I was 15 and worked in a mill I bought a packet of 5 senior service to be like the others , but didnt want to smoke my first in public in case I did it wrong. I asked my brother in law to show me how . He said if you are going to smoke, smoke a rightun lass, and gave me a capstan full strength, lit it for me, and put it in my mouth, said, draw it into your mouth, keep it there then swallow it. I nearly fell over, and he caught me, he saved me a lot of moneybecause I never had another cig. He died of lung cancer aged 52.
Hi amagran is your husband on O2 24/7? Does he turn up his O2 when moving around i/e going to the bathroom? I am ok with my oxygen on 2LPM when sitting watching tv but need to increase mine to 5 or 6 when moving.What medication does he take if any?
Those of us who have this horrible disease have to adapt to it or be overcome by it. I try my best to continue as normal a life as possible but I have learned to accept my limitations. Simple things that help me are using a towelling dressing gown when coming out of the shower, standing on a towel to dry the bottom of my feet. I dont have a bath anymore we had that taken out about 3 yrs ago and although i often fancy a bath i know i couldnt manage it. Turning up my O2 when having a meal helps because we use more oxygen when eating and stops the nagging cough.
I havent smoked for 30 yrs and i dont think my smoking had anything to do with me getting IPF. I worked in a building for 35 yrs that has asbestos in the walls and I wonder if that may have contributed. But as we know Idiopathic means they cant find the cause of our illness but nor can they find a cure :-(.
Maureen
hi maureen, no, Richard is just on oxygen for when he goes out, which isnt often or if he does anything that would turn him into a smurf. He takes spiriva, salbutomol, ventolin, plus statins, aspirin, blood pressure tabs,carbocystene and unsurprisingly anti depressant. Years ago he worked in a foundry, not sure if that could be a cause, but his stroke was due to blocked arteries and he had a carotidendarterectomy in 1991. I would saythat was due to the smoking but could also be hereditary as his family has a bad history, his dad and sister died of lung cancer at age 55, his brother had leukemia and died as a toddler, and his mum had a heart attack and died at 60, so he has always considered himself lucky to be here at 68..
Amgran
I'm so sorry to hear about your husband's rapid decline. Is he being looked after by a specialist? Pulmonary fibrosis is quite a closed book to many doctors. There is a new drug Pirfenidone that is being trialled for patients who have IPF, but your husband may be too ill at the moment to benefit from this.
The thing is that IPF is quite different in nature to COPD and often any treatment is rather different. I was diagnosed myself with Pulmonary fibrosis though not ideopathic - mine is caused by an auto immune disease - they now label it ,'Non specific interstitial pneumonitis' -scarring of the lungs makes oxygen transfer difficult. My breathing has become worse of late and now they have found that I have Pulmonary hypertension as well ( a problem with a restricted artery on the right side of the heart.) As your husband has had heart problems previously, could that combining with his lung problem to make breathing more difficult?
As Maureen says, some practical approaches to making daily activities more manageable help - plus the oxygen of course!
I do hope you can find some help for you both.
Maggie
Most patients who have IPF take NAC ( n-acetylcysteine ) it helps loosen the mucous and enable us to get it up easier. Its strange that not all Drs know about it or prescribe it. I started it myself when I read about the benefits of it and mentioned it to my consultant who promptly prescribed it. I often think the Drs humour us because they dont know what to do for us. Perhaps i should ask for a 2 week holiday on prescription of course :-).I've learned more about this disease from fellow sufferers than I have from any Dr.
Mo
Hello, So sorry to hear that your husband has declined so quickly. I just wondered if he had a consultant or a specialist that could help or if you had been referred to the specialist respiratory team. This is such a miserable disease, you need all the help you can get! Good luck and remember to look after yourself. Auntymary xx
yes Auntymary he sees a chest specialist and the respiratory nurses, but I know what you mean, every time I ask im how he is he says he's ok. I keep telling him, I know how you look, but you have to tell me how you feel.
It has been really good for me to read all the blogs - at least you don't feel so isolated. I think that is one of the worse things and some days I just want to tell myself just get on with it! I hope you can get some support from this community. Good luck. Auntymary xx
I totally agree with you, this community is such a help, to say its a comfort that others are suffering the same disease sounds a bit naff, but it is, it is as if like minds are chatting in a room. It's a support group without having to go out.
what a great place mum.. somewhere you can ask all those awkard questions none of us want to ask. and it's on line- so you can play scrabble at the same time ..bonus LOL 
xx
Hello, my dad is 65 and has IPF. Our GP said it wasn't caused by his smoking and I believe it is either environmental (he worked in an asbestos environment) and/or hereditary because he hast lost many brothers over the years to illnesses including lukaemia, cancer, asbestosis, heart attack and heart disease.
We have an appointment with a private Specialist next week as I have made an official complaint about the care or lack of throughout the past 4 years. It is paramount that EVERY person diagosed with this dreadful disease is spoken to about a lung transplant as soon as they are diagnosed. No-one ever spoke to my dad or even advised him that prognosis for this is 3-5 years. Now it may be too late but I have to try.
You can only get pirfenidine on a clinical trial, there are no other treatments effective enough to stop its decline. some steroids and immunosuppressants can help keep it stable but once the decline starts there is nothing that can be done except to keep the person as comfortable as possible.
Things that have been mentioned already like, using a towelling robe and allowing yourself to dry naturally is helpful. My dad finds that when he bends over to dry himself or put shoes on etc he coughs terrible and is in pain. So anything you can do to stop that bending really. He wears slip on shoes where possible now, that he can do himself whereas my mum or I help him otherwise but he needs to be independent as much as possible so by changing the way things are done can have a marvelous effect. I've not read anywhere that certain dairy foods make mucus worse. My dad had changed to using the mucodyne syrup instead of the tablets combined with codeine linctus for the pain when coughing. Even tho it is a suppressant and you dont want to suppress the cough, it is not powerful enough to stop the cough and mucus being produced. The GP advised this and my dad said he dos feel somewhat better for it.
High energy drinks and any foods high in energy are good i.e bananas, and basically because you lose weight through lack of appetite, if you fancy it, eat it! Life is there to enjoy and wether that be 10 years or 1 year, I believe in making the most of what we have left. My mum and dad would often row when shopping.........my dad would put a nice juicy steak in the trolley and maybe some cakes and mum would then say.....wot do you want that for!..............then dad.....keeping mum happy.........would put it back lol! Now if he wants it, he has it.
Thinking of you xx
good luck tanyamarie, your mum and dad sound a lot like us, specially the arguing in the supermarket, that made me laugh. We have not been told about any time limit, the consultant told us he had ipf, then put him on an open appt, he was admitted to hosp a week ;later and he saw him again then. since then he has been seen by the respiratory nurse. I do feel that he is sidelined in favour of people that they can actually treat, maybe if there was anything they could do, especially in this experimental area, we could feel more positive. Meanwhile we try to keep things as normal as possible given the circumstances.
All the medical sites i have read state 3-5 years prognosis but my fathers' specialist (who I am complaining about) told us 2 weeks ago that his life expectancy is 2 years from diagnosis-knowing he was diagnosed in 2007/2008.
No one ever told my dad the seriousness of the illness and to be told that 2 weeks ago and with the wave of the hand as he was dismissing us he said "i'll arrange palliative care for you". you can imagine our reaction, we were devastated.
However, lets see what next week brings. I agree that no-one seems to want to know because there is nothing that can be done and I find that un acceptable and I will do all i can to challenge that. My father will not go through this for nothing positive to come out of it!
The ability to reply to this post has been turned off.
Not what you're looking for?
You may also like...
Why I bought a Scooter
Dad recently diagnosed with IPF
Why am I losing my voice
Aspergillosis and Hyperinflated lungs.
I am new here - Extreme Anxiety over my various health conditions and managing them
So Yet Another Follow Up - Starting I think 2020 - Bizzar,
New and Saying Hello after COVID
Am I insane?
My dad graduated from ICU today! Severe Pneumonia 
