Feeling like ground hog year! (I do have a question...)

[ElizabethC]

This time 1 year ago I had a cold. Today I have a chest infection. Last years turned into a nasty chest infection that landed me in A&E. Since then I've had so many difficulties with breathing. Total of 3 A&E visits over the year, and I've lost count of Emergency GP visits (most of which at least resulted in Steroids again sometimes with Antibi. Some of the visits also resulted in Nebulisers.) I've had 6 colds. The first one (Jan) leaving me very breathless and on the "lets see if this will help" trial and error/wait and see conveyor belt. After 2nd A&E visit (after yet another cold) I was put on Fostair which has helped but once September arrived I got yet another cold and December started the last three. Or maybe that is just one which just keeps coming back cos its now the 3rd time since that one started at the beginning of December and the second iteration of it was what landed me in A&E.

I've been given rescue steroids over Christmas and tomorrow (humph - on my birthday) will be going back as I have finished that course today.

Anyway, this is just background. My New Year Resolution is to find out what in *^&*%& is going on with my lungs. And I now have a SPECIALIST APPOINTMENT all booked for the 19th January (out of sheer desperation, it is a private one.)

Really hoping that answers can be found and a proper targetted treatment found rather than the wait-and-see-method.

The point of this post then....What useful tips can you give me to ensure I can provide as much relevant info to the specialist as possible to give him as clear a picture of whats been going on (its not just this year - this is YEARS).

I'm being sent a questionnaire but I was also just wondering what else I can do. Am determined this is not going to rule me - I will manage it and this is the first step.

[Hidden]

Hi ElizabethC

Great to hear your new year's resolution and you're already taking action. There's some useful steps and a list of key questions for the specialist so you can take to prepare for your appt here: bit.ly/2eus6Vw

Do keep us posted on how you get on,

Dita

[ElizabethC in reply to Hidden]

Thank you so much Dita. That's really helpful (Asthma UK have been a huge support this past year - I don't know what I would have done without Asthma UK).

Some of that I was already doing which is nice to know but there are things I hadn't thought of and its nicely laid out.

Is there/does anyone have a useful example of a symptom diary? I tend to ramble on and on so it would be useful to have something that can summarise my many years of symptoms more efficently.

[Hidden in reply to ElizabethC]

Hi ElizabethC

That's really kind of you to say. There's a version of a symptom diary on our peak flow diary here that you can print and take with it: bit.ly/2lFbhH1

Take care,

Dita

[Purplejane]

Hi there this all sounds very familiar! I have a specialist appointment tomorrow and out of sheer despiration,like you, I have booked a private consultation. I have been refered to our local chest clinic but was told it would be at least a 4 month wait.

Waiting for 4 months when you are breathless and not able to lead a normal life seems an awfully long time to wait. I was loathe to do this as I think the NHS are brilliant but needs must.

I have had every medication under the sun thrown at me in the last 6 months none of which work very well and am currently back on seretide 250 as this seems to 'work' the best. The wait and see approach is incredibly frustrating I just want to be well, to run again, to garden, to ride my bike, to ramble and to go shopping without getting out of breathe.I was looking for some information as to what to take with me or what information to provide and this is just what I need. Thank you Asthma UK.

[ElizabethC in reply to Purplejane]

Oh same here. I'm 43 tomorrow (birthday) and a month of this latest infection on top of the previous year anyway is just too much. My 96 year old father-in-law has just got over a cold better than me.

He can make and set a fire in the wood burning stove and walk around a 25 acre small holding! I can barely get up my own stairs without gasping for breath. I have so little energy to do anything that I can't sew (I make historic costumes for hobby) or, oddly enough, even read (lack of concentration). What little energy I have has to be focussed to work and thats a struggle now as I never know when I'll be sick again (though work has been very helpful and supportive). This week I'm at home but its actually my A/L and again I'm sick through it.

I think the "wait and see" approach is ludicrous. There seems to be no attempt to find out *what* type of asthma it is (and there are different types). Therefore treatment is trial and error and more wait and see. I do have to say my surgery HAVE been trying to help - I'd only just joined them so they hadn't seen what I've been like in previous years and they HAVE supported specialist now. My prev surgery were not interested in investigating further. I was with them for 15 years.

The private Bupa doctor was horrified that in all these years I've never had a lung function tests or spirometry or any other diagnostic tests from the GP. Only the odd Xray and most of those this year have been at A&E.

The only spiro I had was with the Bupa doctor (It was a full health assessment). She was the one who gave me the referral but I did want support from my GP too. After all, they will still need to do primary care if its an emergency and will be providing the prescriptions for whatever the private consultant will be recommending.

Just like you I want to be able to walk around without getting badly out of breath, without having reactions to everything I breathe in when outside, to have energy to sew and do what I love to do.

I also want to be able to sing again (though talking for more than 10 mins without losing my voice will be a huge step forward).

Good luck in your Consultant's visit. I hope you get the help you need.

[Purplejane in reply to ElizabethC]

Funnily enough I can't concentrate to read either I hadn't thought about that! I used to sing in a choir which I can't do anymore and singing in church at Christmas was more like a croak! I hadn't realised my hoarseness was to do with the breathlessness I was told it was from the large amount of inhaled steriods and ventolin but it makes alot more sense as by the end of the day I struggle to talk at all.

My surgery have been as helpful as they can be but they are not very 'up' on new medication or different types of asthma.I have been with them for 30 years- along time! I have seen all the docs there and they all seem to have different ideas.I react very badly to steriods as well so they are always very wary of putting me on them, they make me very depressed and anxious. I 'm not even sure my GP knows I am going to the consultant. He refered me to the chest clinic at the local hospital but I chose the quickest route I could, it is the same consultant after all.

I also find that I am not always taken seriously because I am a non wheezy asthmatic and my chest quite often is clear which just adds to the frustration. No wheeze -can't be asthma then oh yes it can.

I will follow the Athma UK guide and see where the visit to the consultant leads.

Have a lovely birthday tomorrow.

[ElizabethC in reply to Purplejane]

Oh yes. Non wheezy!! My mother and sister and grandmother are all asthmatics and NONE of us wheeze!!

Talking to a lot of asthmatics, wheeze is more often NOT present. Yet its used as a major marker!

I think the lack of concentration etc is due to low energy due to lack of oxygen (despite oxygen sats being ok). I find myself unable to focus on a task for any length of time or if I have to push myself to do so, I get incredibly tired. Of course waking up violently coughing (as I am with the chest infection I have) just adds to the trouble.

Thank you for your kind thoughts for tomorrow.

I'm branching out with my historical stuff tomorrow - though nothing I've made. Trying to do a sort of simple 50s look with retro vintage dress etc (with petticoat - may as well go the full look there).

Not really felt like making the effort in the past year again due to being so tired, so for my birthday I really wanted to do so. This morning I was coughing so badly that my husband was wondering whether it would be best to reschedule. But dammit I'm not having yet another event messed up. Just before Christmas I was taking part as a Victorian Lady at a local event. Had to miss the last day of the event as I had to go to A&E. Not missing my birthday dinner this time.

Just hope I won't be cough barking at the dinner though.

[Lysistrata Administrator Community Ambassador]

Been following this thread as I have been there a few years ago and you both sound like me with the slightly odd no wheeze asthma. If it helps I did get there in the end! I also sang in a choir and had trouble with lungs and voice- voice is actually better now though in my case I am a bit too unreliable to sing in the one I used to due to lungs plus work.

I really do think a lot of doctors don't seem to acknowledge the daily struggle - I often felt before that they weren't interested unless I was turning blue which is very frustrating. I also got told that my old lady slow walking with pauses aged 25 was just anxiety...err ok, not heard anxiety does that. I would have to rest all day after a bit of slow walking! My asthma is actually more severe now but because I have some more effective drugs I can do more between attacks even with daily symptoms.

I hope you both have successful appointments and get somewhere and ElizabethC, I hope you have a lovely birthday tomorrow and lungs behave. I love the sound of the vintage clothes

[ElizabethC in reply to Lysistrata]

Gives me hope that I can get back to some better health and my voice back. Thank you. Glad you are better and though your asthma is more severe than it was, its well managed. Thats all I want. Just not there yet but the first step has been made.

Thank you for your kind thoughts for tomorrow. Might be able to get some photos if I'm happy with how I do the vintage waves hair. Its going to be tricky as I can't use normal hair products (sprays and perfumes not good at the moment).

Thank you again.

[horseblister]

If it is the first time that you are seeing the consultant it may be an idea to present him/her with a list of the dates and medications over the time this has been affecting you. I keep a list of the different times I have been to hospital or gp not just for asthma but other things like ops. the start of steroids etc. I put my name, address, date of birth,NHS number, hospital number as well. in emergency Ambulance crews and A&E have found it very useful. I hope you get to the bottom of your problem, unfortunately for me I have now had it 70 years this year.

[ElizabethC in reply to horseblister]

Thanks Horseblister.

Yes, I've got a rambly history so far. I need to spend time summarising the salient points. I have IT documentation experience so maybe some of those writing skills can help.

Am so hoping I can get to the bottom of this and get a proper plan in place to manage and control it and avoid frequent chest infections too.

[Purplejane in reply to ElizabethC]

Elizabeth C, hope you had a lovely birthday and

were able to enjoy the day.

I thought I would update you regarding my appointment with the consultant. Firstly, he was a lovely man and I really feel he listened to me, although he had a cough(how ironic) and kept leaving the room for water. He said he gets coughed on all day so can't really aviod it.

He thinks I may have cough variant asthma (CVA), although he doesn't like the label and prefers hyper responsive airways. I explained that I don't wheeze and he said that breathlessness and cough are common in CVA. The triggers are more of a problem as I don't have any that are obvious apart from URTI's. He was very thorough with his questioning. He thought post nasal drip may be a problem so has prescribed Nasonex and because omoprazole didn't work has suggested I try lanomprazole instead as he thinks reflux may play a part I am dubious myself but willing to try anything. He has changed my inhalers to Fostair MART, to use as both a reliever and preventer. I am suprised as Seretide has been very good for the most part but again I am willing to try.

I have not seen any obvious improvement as yet but it is early days. The tests he wants to perform are far to expensive to pay for privately so he is arranging these on the NHS, so there may be some wait but even if these latest changes do not work I at least feel that I was listened to and taken seriously.

Heres hoping that you can get some answers at your appiontment.

[ElizabethC in reply to Purplejane]

It so helps when you feel you are listened to. Keeps the lines of communication open. Do you think he will still listen if you say that x hasn't made any difference or whatever. Will you be seeing him again?

I'm on Fostair and it has helped to an extent since I went on it in May. What I mean is I can feel it opening up the airways when I need it. And it kind of "soothes" my throat when thats being twitchy. Seretide used to do that for me but from 2015 (when I had that horrid flu going around) the Seretide wasn't working and seemed to simply give up last January. I was switched to Symbicort in Jan to May last year but that didn't help and I think was causing some issues too. It was thanks partly to Asthma UK (telling me about Fostair) and also a new Asthma Nurse I saw that I got it. She (and the Nurse Practictioner) both listened to me. Sadly both have left the practice now though the new Asthma Nurse is good too. Which is nice - she listens too.

Hope you get test apts soon, so your asthma can be sorted soon for you. Nothing worse than having a long wait.

I did have a lovely birthday, thank you. I did end up having a major coughing episode in it though which did kind of dampen the evening a bit. It was a bit embarrassing as it was one of those attacks where my throat becomes super sensitive and will choke at anything (eating, talking, moving even my tongue). When its like that its very difficult to avoid an attack. They get incredibly violent so had to spend 15 minutes in the ladies getting myself back on an even keel etc.

Still the dinner was lovely, I had compliments on my dress (50s style) from other diners (as well as from my lovely DHusband).

Going to see if I can plan a nice dinner for my husband end of Feb ish for HIS birthday. Maybe this cough will have gone and I can enjoy the dinner, and HE enjoy the dinner without worry.

Good luck.

[Purplejane in reply to Purplejane]

I forgot to say, of course it is the usual 'wait and see' but at least I feel it is for a reason this time.

[Purplejane in reply to Purplejane]

He did say at the end of the appointment that if I had any questions that I could contact his secretar y and gave me his card with his number on, which was a nice gesture. I highly doubt I will see him again but he is writing to me with his findings as well as sending it to my GP and he said when I return for the tests to bring that letter with me as I will have to start all over again otherwise. He said it is doubtful I will see him but more likely a member of his team which is a shame but not unexpected.

I should imagine with private health insurance you would see the consultant all the time. Can't wait for the tests. It might at least show what it is not even if it can't show what it is, although I will be having a CT scan so perhaps all will be revealed.

So glad you had a good time apart from the cough!