Well what ever it is the Symbicort 200/6, Ipratropium, Ventolin seems to be controling it ok and Doxycycline plus Prednisolne gets me out of trouble when it gets out of hand. My steamer and Aerosure shifts all the grunge from out of there when it builds up, so I don't see that it matters much what they call it. I do get side effects that are not usually associated with COPD which made me wonder.
Well Don that must have come as a bit of a shock. I'm sure they will put a name to it soon and as you say the meds won't be much different.
Take care xxx
Err um. Bronchiolitis is inflammation caused by a virus, usually only found in babies and small children and is temporary. After years of being treated for copd I think it would be a good idea to check this nurse’s conclusions with your GP. As you say, meds will probably be the same because you need them.
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Well some people tellme I'mgoing through my second childhood, but I've had it too long for it to me be 'temporary'. I made an appointment with my GP but I decided when I wrote my profile here that I don't wanted to spend my remaining years being poked and prodded around for a consultant to put a name to something that is being managed well enough. More by good luck than good management it would seem.
Errr.... obliterative bronchiolitis is an adult thing. And there are six of us here with it. Generally not responsive to COPD meds. But it would have shown up in the FEF 25%-75% bit. Not entirely or exclusively an inflammation disease, which is why no bronchodilators or steroids work for me.
Hmmm....
Interesting....
Back to the GP for a bit of joint head scratching?
This is me just guessing but does the pattern show a restrictive lung disease rather than obstructive? Intrigued by the slightly lower FVC and the bonkers ratio between FEV1/FVC. Sorry, shouldn’t speculate. Stone will be down on me like a ton of bricks.
I did say that bronchiolitis is an inflammation caused by a virus usually in children and that obliterative bronchiolitis is a different more serious condition which needs a biopsy to diagnose. The nurse said bronchiolitis not obliterative bronchiolitis which is why I suggested Don see his GP. I really think that you and I are saying the same thing.
Yes. Mainly that Don needs to have the results looked at by a doctor and not a COPD nurse. If it is a restrictive disease then he should be seen by a consultant. And COPD meds are not appropriate.
I think the answer is there in the Spirometry numbers. Surely previous tests have come up with the same pattern? if it is restrictive then you need different meds. Only saying...
This last test is the only one that i’ve looked at closely mainly to see how much worse I had become. I was astounded to be told it showed an improvement. I started feeling worse the day that I visited you. If you remember I had planned to stay a few days but cancelled my booking at the campsite and came home. That is the last time I used the camper. 😟 They changed my inhaler to the Symbicort shortly after and been slowly improving since then.
Honestly Don you need to see a proper respiratory specialist if you have the energy to ask for referral again etc..taking all those meds for the wrong disease..makes you wonder alright..
An asthma nurse is supposed to monitor, she isn’t qualified to make a diagnosis even if she meant well.
Well it happened to me too, probably to many of us. Doesn’t make it right though.
Take care our dear poet x
Fran
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The nurse didn’t diagnosis, she just remarked that the test which she had been told to do, showed a slightly better result than last year. That quite shuck me because I’ve had such a bad year that I haven’t been able go away in my campervan as I usually do. Very strange.
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Ahhh Ok I’ll forgive the nurse then 😉
If you didn’t feel so well it may be because you have developed bronchiolitis as you mentioned? the small bronchi get affected, they are more fragile, my bronchi have thickened with years so I feel more breathless. I put my hand on my chest under my throat and I can feel it there.
One of the reasons I have to do all this nasal washing is that I feel my nose gets congested easily at night and first thing in the morning I am all croaking. Although I sleep propped up.
The nebuliser helps me to clear my chest and dilates the bronchi so I breathe better. It is tedious but it does a better job than the inhaler. A much better job. I would ask for one.
Tedious because you need your machine and have to set it up, clean the mouth piece put the monodose of Salbutamol in or what they give you but it does take 5 mn, I am just lazy. Then sit comfortably, switch it in on use your mouth piece and inhale deeply. I like it better than the mask that also comes with it. It affected my skin and eyes.
If you haven’t got one I would definitely give it a try. It has improved my daily life.
I understand what you mean Don. If tomorrow they told me I didn't have COPD but something with another name I'd probably shrug and think well whatever I've got it's a b nuisance. I don't think I'd be asking to see the consultant in a hurry. Sheila xx
That’s reassuring, thank you Sheila. If I was a younger man I would be chasing it up, but at my age what’s the point. I’ve learnt to manage it over the years and the chances of finding some medication that would stop the production of the sticky stuff in my lungs and bronchial tubes is somewhat remote. My GP will probably send me for an X-ray just to show willing.
Very intrigued by your results. I’m flying a kite here, but my understanding of your results looks more like a restrictive disease than an obstructive one. ??????
Well i haven't got a clue what you have young man,but with an fev1 like that i am just plain jealous,share the love dear don and send me some lung in the post please,as you say if the meds are working for you and you can clear the gunge does it really matter what handle they want to put on it.well done young man.
Ski's with a known condition and a cat that just smells x
My lungs do seem to be in pretty good nick and I wish I could send you some. My problem seems to be getting air in and out of them past a load of sticky stuff being produced somewhere down there.
Bit like the camper van Don.you probably need a bit of redex but nothing as drastic as a rebore.i am sure they can check out the gunge and maybe adjust your medication accordingly,,
Interesting (and good poetry as usual). I had my Spirometry done today as well, but the technician could not tell me the results as they had to go to the Consultant who will explain them to me Monday afternoon. Not sure what they will show, bit nervous really...
That’s what gets me about consultants, why couldn’t they have given you a copy. They tend to treat us like children. You could at least have got used to they layout of the form to better understand it when it’s flashed across your eyes on Monday afternoon. Is it better or slightly worse would relieve the tension.
If I knew you better, and if there was tone of voice in a post, I would reply that you’ve been faking it all these years for the attention. There’s the proof there’s nothing wrong with you 👍 But my sense of humour can puzzle people at the best of times, and humour can definitely get lost in translation on the internet, so suffice it to say I hope they do figure out what’s going on and what it means. Take care. Thanks for another great rhyme.
Seriously, I am well aware that people that must now be thinking that, but then I wouldn’t have published my spirometry result would I? However it is bizarre that I have written over two hundred rhymes about a condition that I apparently I don’t even have. I suppose as a politician would say ‘I must consider my position’. 🤔
Seriously, I’m glad you didn’t take offence at my reply (I hope?) and I really do hope you get the whole mystery sorted out. Please keep writing the brilliant rhymes, whatever anyone wants to call your condition.
Funny to see this as I went to my nurse she said you on the wrong inhaler she said this one will be known good it’s for hasma been put on another and it’s a lot better for me you just don’t know
Last year the nurse who did my spirometry said I didn't have COPD, probably asthma, and could carry on with the same meds. But having been diagnosed by a scan, and not having asthma-like symptoms, I told her that I was pretty sure I regrettably had COPD. So she agreed to check with my GP, who I had never seen, who confirmed that I did have COPD and that the meds were responsible for my good lung capacity. (Nothing to with exercise etc. of course). Since then two other nurses at the practice have said that they couldn't understand from the spirometry results why she had thought that I didn't have COPD. This year's results confirmed that I do and I requested a copy, which I did get with lots of warnings about who could interpret the results. If this wasn't so serious, I could find all this highly amusing.
It just shows you doesn't it. For years I've been telling people to just go on how they feel without worrying about the conflicting information fed to them and here I am doing it myself!
I'm not sure what meds you're on Don but my consultant told me that the problem of small Airways issues is that less than 40% of the inhaled meds gets to where it is needed. He changed me to to the fine mist Spiolto and it was incredibly effective. Sadly, for me, I was allergic to it and had to revert to Anoro but it could have been good.
Initially, immediately, bronchospasm. This progressed to widespread chest pain, muscle pain and then fever and general malaise within the next 3 hours. I was completely well when I took it but it really knocked me for six and flattened me for several days. There's no way I could have continued with it. My GP thought that I had probably absorbed it so well that it had forced my reluctant airways open with such energy that this accounted for the pain. I can see the sense in that but it doesn't account for the fever and general illness etc.
Wow that is really something. I take Spiolto and have no side effects other that terrible heartburn. I had tried Ultibro and had a similar reaction to what you had with a Spiolto except no fever that I as was aware of anyway.
Some times you can get false readings for COPD if your having a bad day with your lungs on the day of the testing your won't improve the second blow when they give you medication.. They say COPD.. If you improve with the second blow they say asthma... Some times like me it takes a while to find out what you really do have.
I think part of the problem we seem to have getting a correct diagnosis stems from the way they are supposed to read the PFT results. I had a chest x-ray and a CT scan show lung damage from emphysema. I had 2 pulmonologists tell me that per the results of the PFT they each gave me that I didn't have COPD, maybe nighttime asthma, but that my lungs are stiff because I am retaining CO2, but neither had any idea why. I was also told to keep using my inhaler.
I saw my PCP, and happily told him that the second pulmonologist concurred with the first, I do not have emphysema. He looked at my PFT results, showed me the chart they use, then the pictures from my latest scan, and said "I'm sorry, but they are wrong" you can see the damage from the emphysema.
My new pulmonologist said my latest PFT does show some restriction, but not sure if I have emphysema or if it's from the fact that I only have 3 lung lobes. She said part of the problem is the standards they are supposed to go by when they read the results. She told me she will look at my other PFT results, and the biopsy from my last lung surgery, and we will talk more when I see her again in November. I have seen the biopsy results from my last surgery, and unfortunately the last 2 pulmonologists were wrong, and my PCP, my surgeon, and my oncologist are right.
Don't spend all your time worrying and looking for answers, but don't ignore it either. The more info you have, the better off you are going to be.
I wonder if she put in the correct information for you as your FEV1 predicted is only 1.81 L which seems very low. I don’t know how old you are or how tall you are but it seems very low. Mine is 3.51 L which is almost double yours and I’m 180 cms tall.
Do you have any previous tests handy where you could see what the FEV1 predicted was on them?
The radiologist isn't always the dx, it depends on the radiologist. I had a chest x-ray a week after my latest surgery and the radiologist said I had a large spot that was suspicious for a new tumor, he recommended another PET scan. However, my oncologist, PCP, and surgeon said it was just bruising and will disipate with time. They were correct, it has gotten a bit smaller. However, with every CT scan, the radiologist said lung damage from emphysema, and my surgeon noted emphysema on the report from both my lung surgeries. It was the two Pulmonologists who said per the results from their PFT's no emphysema. It will be interesting to see what my new pulmonologist has to say after she has seen the CT scans, and read the reports from my surgeries. But she also said something to the affect that you really need a biopsy to verify emphysema (I have never heard of that).
I'm 87 in a couple of months time, so saying I have the lungs of a 90 year old, as the printout does, is not bad going. I was a keen TT and tourist cyclist at one time so developed a good pair of lungs but had asthma and bronchitis for many years. In 2010 I was rushed into hospital with breathing difficulties and told that I had COPD. A sputum test of two or three years ago mentioned pneumonia amongst other things, which could explain some recent changes in my mental awareness. It just seemed strange that the spirometry test shows me as not having COPD. It doesn't really matter to me what name they give my condition.
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