Multiple lung diseases

[Bexxxxxx]

is it common to have as I have multiple lung diagnoses I have bronchiectasis, emphysema asthma copd cross over syndrome I’m wondering if I’ve just been super unlucky or is this the norm. Thanks I’m advance Rebecca

[CDPO16]

Hi, I wouldn't call it normal but it isn't unusual to have more than one lung disease. Many of the forum members have. Perhaps unlucky is a more appropriate description.

[Bexxxxxx in reply to CDPO16]

yea definitely unlucky, trying to fathom I guess I’m going through a why me moment

[CDPO16 in reply to Bexxxxxx]

I think we all have those moments. You're in good company here where we all understand what it's like to live with lung disease.

[Bexxxxxx in reply to CDPO16]

thank you, I’ve had some wonderful recipes much appreciated 💞

[Ern007]

I have emphysema - fibrosis and Asthma/

[Bexxxxxx in reply to Ern007]

Thank you

[eleanordigby]

I don’t think it’s particularly uncommon, eg there’s a link between severe childhood asthma and aspergillosis, and also between childhood pneumonia and bronchiectasis. Those are the 3 I’m stuck with anyway 🤷‍♀️

[Bexxxxxx in reply to eleanordigby]

Interesting because I’ve had a culture come back with aspergillosis I also breathed in mouldy conditions and had whooping cough as a child so even though no one ever said I had asthma I do believe I had it as remember the symptoms. You have the same 3 as me, I know how tough that can be are you managing your symptoms with the medications/inhalers sorry if I’m being intrusive

[eleanordigby in reply to Bexxxxxx]

Honestly Bex, that’s fine, ask away! Sorry to say I haven’t been doing very well for some time now. With multiple lung problems they can’t always tell what’s causing deterioration. I get great care from various consultants but right now they seem unable to improve things, which is depressing. Of course the cold air doesn’t help 😕 What about you?

[Bexxxxxx in reply to eleanordigby]

sorry to hear you have been so unwell we are about to have a very cold spell this weekend too! it can be really hard and depressing when stuck in that cycle of illness please try and keep your spirits up, be selfish if you have to and fully concentrate on you. I have been becoming weaker and losing weight last couple of months and coughing up blood is scaring me, been on ambulatory oxygen for just over a year now and not been seen face to face since being put on it, so got my doctor to chase up why I’ve not been seen im 46 and not ready to give up yet so at least I feel the fight left my recently phone call with the consultant he sending me for bloods and X-ray so I’m going to have some answers soon

[eleanordigby in reply to Bexxxxxx]

I’m the same (weak, losing weight.) I’m not on O2 but can’t walk more than 20m without having to stop. I’m amazed you haven’t seen anyone about your O2. I hardly ever cough up blood, I can see why that’s scary although they always say not to worry about it. I’m gradually getting worse & despite lots of tests during a recent hospital stay, there are no answers yet. I hope you get some soon! Wouldn’t it be better to have a CT rather than X-ray?

Ugh we can do without a cold spell. If the weather would warm up we might both start to feel better and be able to get out, which always lifts my mood. Let’s “not give up” together! 😘

[Wheezyanna27 in reply to eleanordigby]

I have the same 3 elanordigby it's something to put up with isn't it?

[1carus]

hi - not sure if it is common but I have all those and have now added pulmonary fibrosis to the list

In my case we have stopped worrying about asthma and bronchiectasis as it seems emphysema and fibrosis are battling it out to be the front runner - hope you get a good Consultant physician - it makes a big difference

[Bexxxxxx in reply to 1carus]

thank you it sure helps although I would not wish it on you that your reply makes me feel not alone in going through this as life goes on and I try to join it, I can’t imagine what it would be like to have anymore on top of this I wish you all the best - consultant another new one time will see

[BreatheasyBe]

Hi Rebecca just letting you know you’re not alone. Yes I’ve been seen by a number of consultants and over the years have been identified with all that you mention. There has been some debate amongst medical colleagues who are a little puzzled with the complexity of symptoms and evidence based scans pulmonary function tests etc. they have even queried CF but results are so far negative for that.

[Bexxxxxx in reply to BreatheasyBe]

yes they are puzzled by mine too I got a 23&me done and I have one of the markers for lung disease but it says I’m unlikely to get it on the site and they don’t test all the possible markers

[Bexxxxxx in reply to BreatheasyBe]

and thank you as I don’t wish anyone else to have this coming here helps me feel I’m not alone 💞

[B0xermad]

Hi Bexxxx I also have Asthma, Bronchiectasis and copd including Emphysema so it's unlucky but the Bronchiectasis is the one that causes me the most problems with infection etc

[Bexxxxxx in reply to B0xermad]

yes never ending infections I hope the summer coming gives you some ease

[Superzob]

I have late-onset asthma, fixed small airways obstruction (ie, COPD without any underlying cause) and bronchiectasis, none of which are doing me many favours at the moment because I’ve got a cold on top of them! From what I can glean from very rushed conversations with consultants, the asthma has resulted from 50 years of hay fever, the “COPD” as a result of the asthma not being detected earlier (plus some damage to both lower lungs, possibly due to bronchitis as a child) and the bronchiectasis due to the lung damage. But, to be honest, causation doesn’t matter too much if you get the right treatment, which is the purpose of the diagnoses.

[Bexxxxxx in reply to Superzob]

thanks for your reply, I note the part about rushed conversions with consultants sorry to hear that as you don’t get much needed answers that way. I have phone calls and I’m experiencing exactly the same, I don’t get chance to ask questions I’d not push for their time as the pandemic brought such restrictions and stretched their time but now that crazy time has passed and I’m getting weaker, I am getting different consultants I’m thinking their may be a shortage as I know drs/consultants do do their best and rushed calls are them trying to get to everyone but I’m trying to extend my life, so lottery till I win to go private 😂

[Timberman]

Yep - me too!

[KitKat1954]

I have all of those as well. I don't think it's uncommon for those with lung disease to have several conditions.

[Bexxxxxx in reply to KitKat1954]

thank you, replies have given me some insight

[Karenanne61]

Hi. You are not alone! I had asthma but now it's 'morphed ' and I 'just' have very severe copd with minimal emphysema changes, evidence of bronchiectasis and thickening of the bronchi etc. Whilst diagnosis can be important it's value lies in accessing the most appropriate and helpful treatment for your symptoms. E.g. my intractable cough and breathlessness were my worst symptoms so the palliative care team suggested meds that really help me. I find it helpful to write down questions and queries prior to consultant visits. Even if I don't refer to my notes during our chat they are fixed in my mind. I also take my husband as an extra pair of ears and an aide-mémoire.🙂

[Bexxxxxx in reply to Karenanne61]

thank you, if I get a face to face with consultant I’ll take your advice and take notes and someone with me I’m terrible at communicating face to face with my superiors. 🤔

[corriena in reply to Bexxxxxx]

They are not superior to you, they have specialised in a area that makes them knolagable about lung diseas. They are employed to look after you ( witch we are all greatfull for) but they are not your superior. Unless you are in the army 😉

[Karenanne61 in reply to Bexxxxxx]

They may, possibly, have superior pulmonary knowledge than you but they are not superior. They want to help us, thats why they became doctors. Remember, they still have to put their pants on one leg at a time just like us!

[O2Trees]

It's not unusual Bexxxxxx - I have exactly the same.

[corriena]

Yes quite common to have more than one tipe of lung diseas, but anyone with empasemia will be classed as copd. Copd is an umbrella term given to anyone with an obstructiv lung desies, so can also cover some types of Asthma. Copd is not a desies or illness in its own right and not everyone with lung diseas has copd.

[Alberta56]

I hope these knowledgeable answers reassure you. Don't let the 'superiors' act fool you. Be polite but firm and persistent in asking for the answers you need. Make it easier for them to answer your questions to get rid of you than to try to brush you off. It helps to have someone with you. Personally I find it easier to be rude and stroppy on someone else's behalf than on my own. Good luck xxx.

[MrsSixx5]

Hi

I have Bronchiectasis, acute asthma and ILO, so basically all my breathing equipment is faulty 😬

[Biker88]

yes multiple lung conditions are the norm, a lot of it is due to a weakened immune system. With the immune system focused on one condition others can then take advantage. I’m part of an aspergillosis support group and most of us have more than one lung disease

[Wheezyanna27]

Same here all 3 & ILO it's definitely a little to contend with. All the best Bexxxxx