Wheee! A diagnosis and a plan...

[ElizabethC]

So, I've regaled here some of the issues I've had with breathing. 2017 in particular has been a very difficult year with serious (again!) chest infections, this time resulting in 3 A&E visits. Saw a Consultant this month and have had CT scans, blood tests and ENT. Consultant initially thought it wasn't asthma!! He initially thought it might be Hypersensitivity Pneumonitis specifically Bird Fanciers Lung (I have a parrot - Cockatoo! which is very dusty! and have had birds all my life except for ten years when I went off to Uni and then moved in with my then fiance/now husband - still had chest infections then though!).

I didn't think it was this but DID want to have it checked.

Also Consultant was thinking Bronchiaectasis - a lot of my symptoms were indicating that.

Review today. NOT ALLERGIC to birds! My Bilbo is safe (well he would be anyway - was not going to be "getting rid" of my feathered boy. He is a Moluccan Cockatoo that I rescued. He'd been abandoned twice in his 9 years. I promised him he would never leave me and my husband.).

I do not have ALLERGIC asthma! Eosinophils are not high nor is ANCA (which is good as my mother's ARE! She has Churg-Strauss Syndrome and now Emphysema (never smoked).

CT scan does not show Bronchiaectasis but it does show some issues in the right lung (and I can feel that!) which is pooling mucus.

So, Consultant has reviewed and (as I've thought many a time) my asthma is seriously aggravated by colds and flu.

ENT has confirmed no physical damage to vocal chords (he said with rehabilitation I could sing again - I nearly cried!). But he wants me to see a voice specialist as constant coughing means I'm not using my voice properly (like limping I assume?) so it needs help. He's also put me on Lansoprazole in case of stomach acid. I have it a bit but usually during a serious chest infection (all that violent coughing).

Consultant wants me to see a Respiratory Physiotherapist and then both him and ENT want to see me again in 6 weeks time.

Consultant is thinking of medication to reduce mucus but he and I want to try the physio first.

Am still on Fostair (I like that - it soothes and I can feel relief faster than on ventolin only!). He liked how I am keen to manage things and be flexible like that.

Of course, the fly in the ointment is if I get another cold or flu. We need a plan on how to manage that better - at present I now know I have 12 hours or less to get onto Steroids and antibiotics from when the sore throat starts. I'll get a review with GP and see if I can always have rescue one to hand.

So we have a management plan and regular reviews. Something is happening now which makes a huge difference and hopefully the weather will get warmer too which will help.

[Lindahj203]

That outcome sounds a step forward and I sympathise with you about the coughing and mucous as my chest gurgling with mucous and I have been coughing violently last few weeks. How you have a good nights rest.

[ElizabethC in reply to Lindahj203]

I've had a year of it (though longer history of chest infections and breathing difficulties, just 2017 was particularly awful with 4/5 chest infections and 3 A&E visits. I hate the gurgling and the violent coughing. When it was at its worst it was so violent I've be thrown out of bed or collapse on the floor just coughing and coughing. Hugs. You have my sympathies.

[Lysistrata Administrator Community Ambassador]

Yay for you! I mean not good to have the problems but really good that you know what is going on and have a plan to deal with it (plus your cockatoo is fine ). Your consultant sounds really good too which helps - I have met so many who just give up as soon as the problem isn't obvious and blame me for not trying hard enough,, and/or don't really know about things like the less common types of asthma. It makes a really big difference that you have someone to turn to and can act promptly I think. I have found that even though I have no more medication options it helps that I am supported in being proactive and no longer told I'm just imagining it all. Your consultant sounds like a good partner.

I hope you find the plan helpful - very glad to hear about the singing especially! My asthma is also non-eosinophilic and non-allergic and colds and flu are kryptonite (I got this way after swine flu).

[ElizabethC in reply to Lysistrata]

Yep - cold and flu are kryptonite for me too which is why I've had such a terrible year of it all. It was interesting when I first met this Consultant - he was nice enough but a bit dismissive at times. This time, he was very different - actively listening to me. Maybe because I'd "done my homework" - which was the Peak Flow diary for 2 weeks. I created my own spreadsheet which automatically creates a dual am/pm graph, I can record daily symptoms and daily diary as well. He was very impressed! I'd also left him with a fairly comprehensive typed history of symptoms and issues over a timeline at the last meeting for him to read afterwards and maybe that all showed I was not a passive patient!

He's suggested I go back to Fostair 100/6 because I can have up to 8 puffs in a day so can use it like ventolin in the first instance. He said that was exactly how it was designed and he felt that I would prefer the flexibility with it which the 200/6 doesn't give.

Also it was a joint decision not to go for extra meds just yet - try physio first (both for lungs and voice) and the lansoprazole first.

It makes such a difference to be listened to and be involved in ones own health management and not be dismissed etc. I've had that so many times before that it makes me very reluctant to see a doctor - hence why its take so long for me to seek the next level of help.

He was also very pleased I'd been talking to Asthma UK and was on the pilot Support programme. He seems to like Asthma UK as a supportive body very much which is also good.

How do you manage your asthma? Sounds like mine is similar to yours. My research has shown that non-allergic and non-eosinophilic can be very difficult to manage and keep under control. (Short of not working or finding a working from home job, its next to impossible to avoid colds/flu!).

[Lysistrata Administrator Community Ambassador in reply to ElizabethC]

Yep I too have had the same issues with doctors. I'm not scared of asthma attacks but still get stupidly nervous about clinic because I had a series of really awful consultants, who kept telling me I was crazy and it was all my fault but there was nothing wrong anyway, and why did I keep ending up in hospital and fooling the drs into admitting me?

Usually they started off ok tben turned weird after the first idea didn't pan out. I am very impressed that yours listens and actually appreciates that you are proactive and want to learn. The bad ones I have met don't actually like patients like that. I also think it's great that he is working with you to reduce triggers. It sounds like you have also met loads of the bad ones so especially pleased you now have a good one!

My asthma is on all the meds I can have since it's not the right type for the new biologic treatment- my new cons did try! I have daily symptoms and have been told this is how it will be, so I try to avoid triggers as much as possible eg scarf over face and work from home as soon as I start to get worse, or if air quality/weather very bad. It is helping as I managed to just avoid hospital im December and now have not had an admission for the longest time yet (nearly 5 months). I find it also helps me deal better with triggers when they do occur - the pile up of triggers is often what leads to admission. I have been able to do more recently including fitting.exercise into my day - very pleased with how I have managed the winter which previously has been hard. I am very lucky that I don't catch things easily so though colds and flu are awful for my asthma I am not overly prone to getting them.

I am under a tertiary centre for difficult asthma and they help me with being able to see the specialist nurse asap if I'm getting.worse, and just acknowledging that things are how they are and I'm not a silly hypochondriac. I also have an asthma 'passport' for A and E which actually is very much like the summary I wrote for myself before I had this. It lists how I present (no wheeze, ok PF and sats, high HR), medications and what has helped before. Very much worth creating though I hope you don't need A and E again any time soon! It speaks for me when I can't and really does help.

Before this centre I had a lovely cons who felt I was too difficult for him to manage so he referred me. I had a break before that from seeing anyone because I just got so fed up with being told I was a silly anxious person who couldn't be trusted with her care, but it freaked my GP out.especially when he kept getting discharge letters from hospital so he wanted me to be referred again.

I kept getting sent to physio which helped a bit with my bad breathing habits due to asthma but didn't fix the asthma really. They (annoying consultants) were so.convinced it was dysfunctional breathing and I wssn't making an effort to fix it.

Oops sorry for the massive rambling saga! Not sure if you wanted to hear all.my cons woes...

[ElizabethC in reply to Lysistrata]

No worries at all. Sometimes we need to let all that out! And this is the right place.

I used to work from home in my last job but my current one I can't do that due to the nature of the job. I think my best plan is to move within the company (civil service) and see if I can find a role that allows me to work from home. Though my current unit have been so supportive and helpful I'd be so sad to leave them but there are upwards of 50 people in an open plan office and all coughing and sneezing plus dust from printer exhausts plus I've VERY prone to getting colds/flu so its more a case of when not if I get one.

I think I shall create a passport for A&E too. I have been just typing up on my tablet and handing that over which they found really useful but having something that may be provided from a Con who will listen, might be more useful. So hoping I won't need it but its a comfort if I do have it.

It was very interesting how my Cons was very much more involving me in the conversation than he did the previous time. As long as he carries on that way I'll be happy.

I am hoping the breathing and physio will help but if the mucus is still a prob (it can feel like its choking me at times) then we can try the meds he suggested. After my experience with Montelukast (which I still have a few symptoms of) I don't want to try anything else just yet except the Fostair (which I must say I love!).

I was so worried I'd get the same "Nothing wrong with you except your parrot causing probs. Get rid of it and then you'll be fine". But for once its good news but also there is a condition which can be managed.

Glad you're at that centre and you've managed to avoid any A&E visits. Lets hope you won't get more especially as the weather warms up. Hugs.