Well, I'll go to the foot of our stairs! - Lung Conditions C...

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Well, I'll go to the foot of our stairs!

MoyB profile image
MoyB
64 Replies

Well, I would if we had some!

Some of you may remember that I've had some concern that COPD seems to have been dropped from my diagnosis without my knowledge.

Finally, I have received a letter from my consultant clarifying the situation.

I was first diagnosed with Asthma, then a few years later with Asthma and COPD and eventually, with COPD/Asthma Overlap and Bronchiectasis. As far as I was concerned, this remained my diagnosis.

However, the nurse allocated to undertake my COPD review a few months ago said, 'I don't really know why I'm doing this review as you don't have COPD.' Really?

Since then 'Fixed Airway Disease' has been mentioned, but also another medical person (can't remember which one) mentioned, 'Restricted Lung Disease'. Google leads me to believe that these two conditions are quite different from each other in terms of life expectancy, so, as you can imagine, I wanted things cleared up.

My consultant has written a long letter to me, in which he goes through all of the conditions mentioned and how they do or don't relate to me.

He said that, I have mild Fixed Airway Disease which is sometimes referred to as COPD, but concludes that my diagnosis is 'Chronic asthma and Bronchiectasis.'

So there we have it! I'm a fraud! I don't have COPD at all.

Frankly, it makes no difference at all on a daily basis, but at least I can give people a correct diagnosis now eg if I end up in A & E, which has happened on quite a few occasions in the past few years.

What I find surprising is that my Asthma has always been 'on the back burner' as far as the medics are concerned. It's been brushed aside, in terms of any discussion, and my 'annual' reviews have been far less regular than they were meant to be. They have never been particularly helpful either.

I'm wondering if anyone else has experienced an unexpected change of diagnosis. Is there a general trend now to re-classify some conditions, I wonder?

Ah, well, I can put it to bed now, and worry about the state of the country instead! Or not!!!

xx Moy

64 Replies
eleanordigby profile image
eleanordigby

I’ve had this too. At first they couldn’t find any labels to stick on me, except asthma, but now I’ve officially got 3 more, even though they say I’m “not typical” of 2 of the 3! I suppose they have to call it something, and it means they can give you drugs you might not otherwise be able to have.

Also, have you ever smoked? GPs seem very keen to slap “COPD” on people who have, no matter how long ago, and then it sticks!

MoyB profile image
MoyB in reply to eleanordigby

Hi! No, I've never smoked, but I did grow up in a smoking household and I believe that I may have had undiagnosed asthma as a child.

I think that labels come and go, but no one thinks to tell you about a change. I suspect that I still have the same condition but it's been re-labelled. Still, at least now I know what to tell people.

xx Moy

sassy59 profile image
sassy59

At least you now know Moy so that’s all clear hopefully. You’re not a fraud as having bronch isn’t any fun I’m sure. Pete still has COPD so deals with that as best he can. He’s having cataract surgery on Saturday. Fingers crossed all will be well.

You take care xxx ❤️💕❤️💕❤️

Littlepom profile image
Littlepom in reply to sassy59

good luck to Pete for the cataract op. I’m sure that he will be delighted by the results.

sassy59 profile image
sassy59 in reply to Littlepom

Thank you xx❤️

MoyB profile image
MoyB in reply to sassy59

Hope Pete's op goes ok. I have many friends who have had cataracts removed and are amazed at the difference in their vision. Fingers crossed for him!

xx Moy

sassy59 profile image
sassy59 in reply to MoyB

Thank you Moy, I’m sure Pete will be fine xxxx

garshe profile image
garshe in reply to sassy59

Good luck to Pete for Saturday and his cataract OP. Lots of love xxSheila 🤓💕⚘

sassy59 profile image
sassy59 in reply to garshe

Thank you very much Sheila. Xxx💕

Cloudancer profile image
Cloudancer in reply to sassy59

Will be thinking of Pete on Saturday

sassy59 profile image
sassy59 in reply to Cloudancer

Much appreciated Cloudancer xxx

Izb1 profile image
Izb1 in reply to sassy59

Wwill be thinking of Pete on Saturday Carole, hpoe all goes well x

sassy59 profile image
sassy59 in reply to Izb1

Thank you Irene. Xxx❤️

watergazer profile image
watergazer in reply to sassy59

Fingers crossed for Saturday. I’m sure Pete will be delighted with the result xx

sassy59 profile image
sassy59 in reply to watergazer

I’m sure he will Anita, thank you. Xxx❤️

Thinkhealthy profile image
Thinkhealthy in reply to sassy59

good luck to Pete

sassy59 profile image
sassy59 in reply to Thinkhealthy

Thank you xx

Littlepom profile image
Littlepom

oh you are no fraud MoyB. The medics who failed to diagnose your bronch and left you struggling are the frauds. So many times bronch is misdiagnosed as something else because those doing the diagnosing don’t know what they are doing. Now do set about getting yourself under a true bronch specialist. Hopefully they can introduce treatment that will improve your quality of life and as bronch is complex and changes over time it is best for you to have access to someone who really knows how to deal with it and can advise your GP ongoing. Welcome to the bronch club.

MoyB profile image
MoyB in reply to Littlepom

Thanks, Littlepom.

I've had the Bronch diagnosis since 2016 and have been treated for it since then. I'd had the COPD label for a year or so before that and the Asthma label since 2001.

When my consultant got involved in 2016, he told me that I had COPD, asthma and bronchiectasis. Now the COPD has been dropped and replaced by 'fixed airways disease' yet the consultant has ended his letter by saying my diagnosis is, 'Chronic asthma and bronchiectasis' with no mention of fixed airways or COPD. I expect it makes sense to him.

At least now I can tell them to take a hike next time they call me in for a totally pointless COPD review. I have enough appointments without turning up for those I don't need. I actually tried to get out of the last one as I'd only just had a review with my consultant, but my GP was fairly firm in saying that I should attend, so I did - only to be told I don't have COPD so the nurse didn't know why she was doing it!

At the moment, everything is quite well controlled. As long as the antibiotics are the right ones to zap the bugs, I'm fine. My problem arises when I KNOW I have a bug in the system, but because it doesn't show up in the sputum, I'm told to just take Prednisolone. In future, I'm going to take whatever I think is the right thing and then phone the GP and tell them! Between last June and December I spoke to 8 different GPs on the phone and they all told me different things. I decided enough was enough and insisted on being seen. Well, wouldn't you know it? The GP I saw confirmed a chest infection. I've learned a lot from the experience and it will not happen again!

My recent concern was due to being told by different medical personnel that I didn't have COPD; that I had Fixed Airways Disease: that I had Restricted Airways Disease; that I had asthma, COPD and bronchiectasis; that I had a hiatus hernia and bronchiectasis (no mention of COPD or Asthma.) I was just seeking clarity, which I have finally got - until someone decides its all a figment of my imagination and the moon is made of green cheese! Lol!

I appreciate your helpful reply, though, and the replies you have given to many others that have also been useful to me. Something that helped me a great deal when I was first diagnosed with Bronch was reading that you had had it for most of your life - and were still alive and kicking! It was better than reading anything Dr Google had to say, for sure!

I hope you're keeping well.

xx Moy

Littlepom profile image
Littlepom in reply to MoyB

what really comes out of this, (apart that different docs have been throwing everything into the mix because until your present consultant they didn't know what you have) is the fact that you now know more about your conditions than your GPs and nurses and have learned how to handle these people so that you have the right treatment when you need it. Well done! It's always wonderful to see someone taking control and being pro active.

MoyB profile image
MoyB in reply to Littlepom

I believe we ALL need to be proactive these days, Littlepom. I sometimes feel as though I have turned into a medical secretary for my husband and myself. What with sorting out appointments that have been cancelled, and getting people to correct letters that have been sent out with incorrect information in them, not to mention chasing appointments and finding they've not even been asked for ... the list is endless!

Still, I suppose it stops me hanging around on street corners! Lol!

xx Moy

Littlepom profile image
Littlepom in reply to MoyB

So true. We spend our lives doing and correcting the work that administrators are paid to do.

Thinkhealthy profile image
Thinkhealthy in reply to MoyB

Amoy I think that if you can it’s definitely not a bad thing to have as much info and input into decisions about your own health especially when there is a range of labels that are bandied about . An informed patient has to have better chances these days. Not lungs but heart - my husband was going downhill but we learnt and pushed and he got the right treatment. Had we sat back and waited the outcome could be very different. So I hope you’re feeling more in control and stay well x

Patk1 profile image
Patk1

diagnosis also includes mild copd to be pedantic

MoyB profile image
MoyB in reply to Patk1

Yes, in the body of the letter he said that I have ' Fixed Airways Disease (sometimes called COPD) due to having chronic Asthma and Bronchiectasis', but at the end of the letter he states that my diagnosis is 'chronic asthma and bronchiectasis' with no mention of the FAD.

I can live with that anomaly, but not with having names of other conditions mentioned by nurses who may, or may not, know what they're talking about. No disrespect to the nurses intended, but if they are given information that I believe to be incorrect, I tell them so - and sometimes they're not very keen on hearing it!

xx Moy

Damon1864 profile image
Damon1864Volunteer

So pleased you have finally got it sorted. Have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻

MoyB profile image
MoyB in reply to Damon1864

👍❤️ xx Moy

eleanordigby profile image
eleanordigby

This might sound odd, but have you ever wished they’d stick a Cystic Fibrosis label on you? That sounds a terrible thing to say, I know how difficult life is for those young people & I feel very sad for them. But I’m young too, and the truth is, the label opens up a world of better treatment which I can’t get. My health is getting worse but things like proper sputum tests have to be fought for, let alone the medicines and specialist nurses.

Charlie_G profile image
Charlie_G in reply to eleanordigby

Oof. Those that know me well here know I get really frustrated with the disparity in access to antibiotics and additional treatments those with non-cf bronchiectasis experience compared to the cf cohort, but unfortunately, increased access to treatments doesn’t necessarily translate to better outcomes due to the life limiting, multi system nature of cf. That’s the main reason why the disparity exists in the first place: money first got thrown at cf because children were routinely dying from it. It was considered terminal and people weren’t expected to survive to double figures. But people often either don’t know or forget that it doesn’t just effect the lungs. It effects the liver (a significant number of people with cf actually die of liver issues as opposed to lung disease), the pancreas, the gallbladder, the sinuses, the entire digestive tract, the reproductive system: basically, it can effect any part of the body where mucus is present. As a result, it also causes its own specific forms of insulin dependent diabetes (CFRD), potentially life threatening bowel obstructions (DIOS) and autoimmune, inflammatory arthritis.

I’m not having a go at all, and having seen the struggles members here with bronchiectasis routinely have to get good care, I do completely understand where you’re coming from. With the realities and treatment burden involved, I genuinely wouldn’t wish ncfb on anyone, either, and I believe access to therapies and antibiotics should be studied further in ncfb as a matter of urgency. But I know which I’d rather have. Having already spent 7 weeks in hospital this year and at least 2 more coming up in November, I also know which my 14 yo would rather have. And even with the new treatments that have emerged over the last few years, if cf were downgraded to the same severity level as ncfb tomorrow, it’s a disease that will continue to kill people in a way ncfb does not.

eleanordigby profile image
eleanordigby in reply to Charlie_G

I’m so sorry Charlie-g, I would not for the world make light of your lo’s illness, & I’d react too if I had a child with cf. I hoped it was obvious, I don’t envy him/her or want to swap places. It’s just the label, do you see? I know all about the whole-body thing, from the young people I’ve met on the wards. It’s a terrible burden for a teenager, and even worse for their parents. But many like me have had a lifetime with several lung diseases, Addison’s, inflammatory arthritis, heart problems and other conditions )which may well be life-limiting.) I’ve spent 6 weeks in hospital in the last year. I’m getting worse. But because I don’t have a single diagnosis like cf, I have to fight on so many fronts! Just staying alive us a battle, it’s so exhausting! I’ve been told “of course, if you had cf we could give you x or arrange y”. Even sputum - every single time I have to argue & remind them to test for NTMs, aspergillus, & the various bacteria Im prone to but which take longer to grow. It costs more, you see? I feel as if I don’t matter as much, you know? As if I’m asking for something I’m not entitled to? But pleade, never think I would begrudge such a child one moment of care. No, never. Love, Elly

Patk1 profile image
Patk1 in reply to eleanordigby

i hear U Eleanor.it is really hard.ncfbe is treat like the poor relation to cf.do put yr foot down.its your life theyre playing with xxxxxxxx

eleanordigby profile image
eleanordigby in reply to Patk1

Thank you Pat. Over the years I’ve got good at standing up for myself but when you feel ill it’s hard

Patk1 profile image
Patk1 in reply to eleanordigby

it is, very hard.ea infection causes more irreparable damage to airways.i decided after what i said at any appointmnts wasnt being heard, so i sent cpl emails with how i have deteriorated under their 'care', who had made unfulfilled promises and when & cc consultants, ventilation team etc.thankfully, theyve acted! May be worth a try.xxx

B0xermad profile image
B0xermad

hi moyb , at least you have it officially now. I got a printed letter after a CT scan with my diagnosis but only concentrate on the bronchiectasis really ,slight emphysema in 1 lung and asthma butbronchiectasis in both its all very confusing

MoyB profile image
MoyB in reply to B0xermad

I feel there's a lack of co-ordination and a failure to see the whole picture. Just because I had Bronchiectasis confirmed, didn't mean my COPD got better, but it's now called Fixed Airways Disease instead. I also found that Bronchiectasis seemed to work its way to the top of the pile and everything else has been put to one side. My consultant has said that when my lungs are 'behaving' my results are 'normal' but when they are 'misbehaving' my lung function drops by 25%. This doesn't take into account that for a total of 9 months last year, my lungs were 'misbehaving'. I measure my Peak Flow twice a day and have the graphs that show very clearly when things were 'misbehaving'.

But I now have something in writing which at least gives me a diagnosis that the nurses cannot argue with! We will all know where we stand - until it's changed again!

I hope that your diagnosis helps you to get the medical support you need. We do have to become warriors, I'm afraid, and make a noise when things aren't right.

xx Moy

B0xermad profile image
B0xermad in reply to MoyB

definitely agree with you on that, be bolshy and get

MoyB profile image
MoyB in reply to B0xermad

👍❤️xx Moy

Cloudancer profile image
Cloudancer

Am delighted the consultant wrote to you and clarified your diagnosis.

Well done you for getting the information you wanted!

Sending gentle hugs

MoyB profile image
MoyB in reply to Cloudancer

👍❤️xx Moy

Otto11 profile image
Otto11

I once had COPD for a year! At my yearly Asthma review the nurse diagnosed COPD it was a shock & upsetting. No follow up no dr appointment just a diagnosis. Then at the following years asthma review a different nurse questioned it saying your notes say COPD but I can’t find any evidence of it. I still never got to see a dr but it’s strange that several years on I’ve now got Bronchiectasis & Atelectasis. I keep meaning to get COPD removed from my rocord for travel insurance purposes.

I’m so pleased you have got your diagnosis sorted out. I guess it’s hard to tell various ones apart 🤷🏻‍♀️ All the best x

Izb1 profile image
Izb1

I can understand your frustration Moy as it seems that the nurse has decided what you do or do not have and I dont blame you for being annoyed at this. It seems your consultant has also decided to take her word for it. Can you ask for a face to face and discuss this with him. The nurse at my sugery knows nothing about bronch and tested me for asthma every time I saw her, when I went to the doctor for a med review and told her this she laughed saying she understood and said it was pointless me seeing her so took me off her list, which i am glad about as it was a waste of time. I now have to look after myself as my consultant discharged me saying there was nothing more he could do for me and my gp is on extended mat leave x

was it Larry Grayson who said "I'll go to the foot of our stairs" ?

MoyB profile image
MoyB in reply to Izb1

It was actually the other way round, I've now discovered. The consultant had changed my diagnosis in his letter to the surgery but hadn't mentioned this to me. Hence, I presented myself for a COPD review and the nurse couldn't understand why I was there! She looked at the last letter that went to my GP and said there was no mention of COPD so perhaps it was fixed airways. I tried to find out from another medical source what we might be talking about and they came up with restricted airways.

I hate not knowing what's correct as I am afraid that I'll be in A&E one day and will mislead them with the wrong diagnosis.

At least, I now have the consultant's letter to wave at people if I need to.

When I see my consultant next, I will ask for more details of why he has changed one of my 'labels', but for now, I'm satisfied that I can tell people confidently what my lung conditions are (at the moment! ).

xx Moy

Izb1 profile image
Izb1 in reply to MoyB

Ah! I am sure the consultant will update you when you see him.

Ha! Yes thats the other one "shut that door"

MoyB profile image
MoyB in reply to Izb1

By the way, I believe it WAS Larry Grayson who used that comment as one of his catch phrases. The other one, of course, was, 'Shut that door!' xx Moy

Digger0 profile image
Digger0

I was diagnosed with "Asthma" way back in the 1990's by a hospital consultant in an afternoon. Following numerous chest infections and bunged up lobes, another consultant said I did not have asthma, but no diagnosis. Then in April 2020 I got the dreaded and following 14 days at home on AB's and then admission to hospital I was diagnosed with bronchiectasis as well. I'm now on Azithromycin MWF and, touch wood, not had any chest infections since. I am also off all my inhalers etc! I sometimes think that tests etc are improving the diagnosis of respiratory patients.

MoyB profile image
MoyB in reply to Digger0

I'm hoping to go onto Azithromycin this winter but my consultant needs to liaise with the cardiologist who did my catheter ablation before he will prescribe it. The wheels are turning extremely slowly in that department, so I expect I'll have another winter on Doxycycline.

I'm so pleased you're on the right treatment as I'm sure you must feel so much better for it.

xx Moy

Digger0 profile image
Digger0 in reply to MoyB

I was on the Azithromycin before I had my cardiac catherisation and my ASD repair :) I was surprised that the anaesthetist had no problems giving me an anaesthetic as usually they are a bit iffy with lung problems. Maybe it was because I was at the Liverpool Heart and Chest Hospital! I was surprised that they put a "brain wave reader" on my forehead to make sure I was just under enough :)

MoyB profile image
MoyB in reply to Digger0

Blimey! What's a 'brain wave reader'? They'd be lucky to find any waves at all going on in my brain at the moment! 🤣 xx Moy

Digger0 profile image
Digger0 in reply to MoyB

Like a mini EEG - it was on a strip of sticky about 1" by 5" and went on my forehead!

MoyB profile image
MoyB in reply to Digger0

Did they tell you what the readings meant? Xx Moy

Digger0 profile image
Digger0 in reply to MoyB

No, it was to ensure I was asleep deep enough for the TOE and the catherisation, but not too deep. I presume I had a brain 😂

MoyB profile image
MoyB in reply to Digger0

You know, a lot of us moan about the NHS but hearing something like this makes me say something I say often - 'What they can do now is bloody marvellous!' xx Moy

Dottie11 profile image
Dottie11 in reply to MoyB

May I ask how much Doxycycyline you take please ? I have only taken Azithromycin so far. re Winter.

Karenanne61 profile image
Karenanne61

In the beginning . . . One of my dianoses was bronchiectasis. Learning from the wise people in here I asked my consultant, very nicely, if he'd refer me to a bronch specialist. I was transfered to another, lovely, consultant but the bronchiectasis dropped off my printed list of diagnoses. Reason? So I was told, scans, lung function tests etc can be interpreted differently by different readers! The same with emphysema! Not helpfull is it?

MoyB profile image
MoyB in reply to Karenanne61

I think we all expect everything to be very objective now in medicine as there are so many electronic (scientific?) tests that are done, but, yes, it's all down to interpretation in the end, so very subjective.

When I had my first CT scan, the radiographer said I didn't have Bronchiectasis, whereas the consultant, after taking into consideration a complete physical examination of me, and full history from me, declared that I most certainly DID have bronchiectasis. To keep the radiographer on side, he said, 'I will write 'borderline' bronchiectasis in my report. 4 years later when I had another CT scan, both the radiographer and the consultant were in full agreement that I had bronchiectasis.

During one of my hospital stays, the duty consultant asked for my diagnosis. 'COPD, asthma and bronchiectasis,' I told her, as this is what I had been told by my own consultant. The duty consultant insisted that I could not have both COPD AND asthma and did her best to make me look rather stupid in front of her entourage. She asked me the name of my consultant and said, 'Ah, then you've probably got COPD/asthma overlap.' Well, yes, that means COPD and asthma, doesn't it?

These things are sent to try us, I suppose.

xx Moy

katieoxo60 profile image
katieoxo60

Hi MoyB, sometimes over time diagnosis changes i.e COPD used to be Bronchitis or Emphsema, now its classed as chronic restricted airways disease rather than COAD as in the old days which stands for chronic obstructive airways disease doesn't change how we feel when it flares up does it? Glad your consultant wrote to you. I used to think COPD meant chronic obstructive personality disorder, so I am glad its been made more specific. AS chronic cough is not a sign of a personality disorder is it 😊 or breathing difficulties. Not keen on none specific diagnosis myself yours seems to be more clear.

MoyB profile image
MoyB in reply to katieoxo60

👍❤️xx Moy

watergazer profile image
watergazer

I think a few of us may be frauds according to the diagnosis of our differing lung diseases what is certain is that we have respiratory disease xx

MoyB profile image
MoyB in reply to watergazer

Absolutely! A label doesn't change our condition - it CAN be useful in getting the right treatment though.

xx Moy

Jaybird19 profile image
Jaybird19

i couldnt understand about having asthma and bronchiectasis myself and during stay in hopspital dropped the salbutamol

 then spent the afternoon trying to move some very sticky mucus stuck ib my throat, really bad .

. So now ido use all the inhalers and not what i think . How can the two conditions exist together? One gives you flabby lungs and the other has tight lungs . But there it is .

MoyB profile image
MoyB in reply to Jaybird19

👍❤️xx Moy

watergazer profile image
watergazer in reply to Jaybird19

I’m the same. 👍

Kristicats profile image
Kristicats

that’s REALLY good news. I wish my copd diagnosis was a mistake as one thinks about it EVERY day. What a relief that must be!

MoyB profile image
MoyB in reply to Kristicats

I think it's a relief to have clarification of my diagnosis from my consultant so that I know what the nurses are talking about, and also so that I don't mislead anyone involved in my future care.

As for being relieved at not having COPD, I can't really say. I still have chronic asthma (with fixed airways disease) and bronchiectasis. It's just the name that's changed really. I'm thankful that my consultant has taken the time to explain things to me. It's just a shame that he decided to 're-label' what I've got without telling me and I have found out through third parties.

If you have a box of tea bags and change the label to 'biscuits' , you still have a box of tea bags, don't you? Lol! xx Moy

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