'Long Haulers' and Questions for an Out Patient Consultation.

[PaulineHM]

Dear 'Long Haulers',

Today is my 23rd anniversary of the first episode of severe breathlessness which led to a diagnosis of Asthma COPD 2 years later.

Today I am in the 5th week of managing a nasty exacerbation, when last week I was almost admitted to hospital following a day assessment at the Acute Medical Unit.

Two lots of antibiotics and a long term course of steroids recovery is slow and frustrating. A prolonged course of steroids increases my insulin resistance making pre diabetic blood sugar levels tricky to manage and the steroids of course bring a fungal infection along with them too. Arrrrrggghhhhh!! There is no support to manage this exacerbation I and live alone. ALUK_Nurses I am keeping a symptom diary which I find helpful.

Usually my care is managed by the GP on a reactive basis i.e. when needed. next week I have been offered an outpatient appointment with a consultant who I have met only once before two an half years ago. As far as I know there are no more treatments left in the Asthma COPD cupboard to be had.

I do intend to ask him if there is someone who can help me rewrite my self management plan. Either the one I have isn't working or I don't use it quickly enough ? Or may be even both ?

Do any of you 'long haulers' have any ideas about other questions I can ask of the consultant to enhance my future care please ?

Go well.

Pauline

[Ergendl]

I can't help with the questions for the consultant, but did wonder if you've done Pulmonary Rehab recently, where you might get some opportunities for better guidance locally as a part of the improving fitness programme to help you live with your condition.

[PaulineHM in reply to Ergendl]

Thanks so much. I have completed two PR courses in 21 years. My usual level of activity is very good. A Yoga class, a PR maintenance class and an Active Balance class every week, including housework, gardening. Not sure I can do any more ...hehe.

[Ergendl in reply to PaulineHM]

Do you have a local Breathe Easy group? The one I attended in Stoke some time ago, had guest speakers including a respiratory nurse who went through things like management plans, using inhalers, and things. Sadly, like so many other things, the pandemic shutdown put an end to some of the Breathe Easy groups.

[PaulineHM in reply to Ergendl]

Hello, thanks for the thought. No, no Breathe Easy here anymore since the pandemic. They were helpful weren't they in having a resp health care practitioner there to discuss things with. Sometimes I am able to attend the ALUK support groups online which can be very helpful.

Go well.

[Hopeful1]

Hi Pauline. Good luck with your consultation. You have not given any details of what you have tried so far but 2 things which have helped me are a referral to a pulmonary rehab course and, when picking up regular infections from my grandaughter, a referral for a prophylactic ( an antibiotic taken a few days a week long term to stop infections taking hold). Otherwise you already have good ideas. Just remember to write them down so you don't forget too ask!

[PaulineHM in reply to Hopeful1]

Thanks, Yes am compiling a list of questions for this rare golden opportunity of seeing a consultant!! Am normally fairly fit with 3 exercise classes every week. I have been taking Aizthromycin for 8 years, not really sure it helps but haven't the confidence to stop taking it!

[Patk1 in reply to PaulineHM]

If u produce mucous,do u do dedicated lung clearance sessions acbt,huffing and do u have a flutter device to help eg aerobika( available on prescription.also,do u have mucolytic eg carbocysteine

[PaulineHM in reply to Patk1]

Thanks Pat. Am not producng much mucous at the moment. Drinking loads of fluids though and trying acbt. Been on Carbocisteine for years, do find it helpful when 'well'.

Do you have a flutter device ? I dont. I did ask about one a few years ago but was given postural drainage exercises and patting instead and a straw in water blowing bubbles which was fun a effective to some degree.

[Patk1 in reply to PaulineHM]

Yes I have the aerobika.its really useful as creates vibrations to help dislodge mucous,even in lowest Airways.u can use it at any angle to so can incorporate it into postural drainage & acbt.when ill I often increase carbocysteine to thin mucous more,or less if get flooded with it.a referral to respiratory physio would teach u best way to do acbt,use aerobika etc.also,I do use salbutamol to dilate Airways b4 dedicate lung clearance sessions

[PaulineHM in reply to Patk1]

Thank you so much Pat, this information is very helpful.

[pepparuby1]

hi Pauline I can see how worrisome this may feel especially living alone - as mentioned in the earlier replies have you tried PR as I’m just finishing my course which has been a godsend as I never got anywhere with PR x

[PaulineHM in reply to pepparuby1]

So, so pleased for you. PR is just one of the best things which can be offered to people.

[Grangemill]

You need a specialist respiratory nurse referral- this means you do not have to see your gp when having an exacerbation you go straight to them.

[anng18 in reply to Grangemill]

Hi Grangemill,

What does a specialist respiratory nurse do? I have a referral and an appointment and have been wondering what happens!

[Grangemill in reply to anng18]

Hi I found that the SEN was amazing and a Bronchiectasis specialist unlike the Consultant I have seen.

They are able to manage any exacerbations and have provided me with sputum pots ready for testing. I have a direct number for them so can tell them I ve sent in a sample. Plus they gave postural drainage and acb techniques plus an aerobica device.

They can refer to exercise classes and prescribe antibiotics plus devise a treatment plan.

[anng18 in reply to Grangemill]

Thank you Grangemill for replying. That sounds very positive. I'll hope for the best!

[PaulineHM in reply to Grangemill]

Hmmmmmm thank you. I am with the Home Oxygen team who are very helpful. I called them yesterday re my sats and they are sending a 2nd concentrator to use upstairs at least until I am recovered from this extended exacerbation.

[pepparuby1 in reply to Grangemill]

I agree!! After getting Covid in January and many exasperations the dr finally referred me to the respiratory team

[Difficul]

Surely it will still be worth asking the consultant if there is something else in the cupboard.

[PaulineHM in reply to Difficul]

Thanks yes. I am 95% sure that there is nothing else in the cupboard. I think I will be looking for some support to modify my exercise programme for through the winter. I also need something to trigger me to slow down especially when Life gets sooooooo busy. I am not good at taking much notice when I get fatigued. Maybe a physio could help ?

[Difficul in reply to PaulineHM]

Well, I still think it is worth asking. Sometimes new treatments come along. If you haven't done pulmonary rehab, then I too can recommend it.

[PaulineHM in reply to Difficul]

Thank you for the nudge re asking. I think you are right and I will ask...just in case.

In 21 years I have done a PR course twice- always useful and the British Thoracic Society advise it should be offered annually. We know the staffing issues though which make that impossible don't we ?

I am pretty good with my regular exercise regime. 1 weekly yoga class online with a teacher I know. 1 weekly PR maintenance class online offered by the local PR team to people who have completed a PR course ( started in the pandemic and of course they cant stop it now ) 1 weekly Active Balance class -local authority. A bit of walking to the shops in between (around 2000 steps ) I am positive that this level of activity really helps to keep me well. If I don't do it I feel 'stodgy'.

Thanks for your support.

Go well,

Pauline

[pepparuby1 in reply to PaulineHM]

You do amazing Pauline. I’m definitely getting going with exercise - this disease is the pits

[PaulineHM in reply to pepparuby1]

Wishing you well -the hard yards usually pay off. Keep going.

[Homely2]

I have asthma rather than asthma and copd. I am five or six weeks into a nasty exacerbation and a bit fed up.

I am lucky in a couple of ways.

1. I have a very conscientious GP asthma nurse, who happily writes and helps with asthma plans. I avoid the GP totally. They just react and sometimes incorrectly. So can you find a decent GP asthma nurse.

2. I asked my consultant if I could have access to a hospital asthma nurse. He was surprised, but arranged it. This gives me access to somebody else who will ring back by the end of the day, this is great as my GP asthma nurse is not full time.

3. My consultant works at a general hospital, but sends my file regularly to a tertiary hospital, this means he gets fed some ideas, which is helpful.

For asthma, my consultants final line of defence in steroid inhalers, is adding in alvesco, so I have fostair 100 mart plus alvesco 320 to 640. This keeps me out of hospital and reduces my need for pred.

[PaulineHM in reply to Homely2]

Hello,

It looks like you have a great service there. Well done HCP's where you live and you for being proactive in your own management too.

The asthma component of my condition is largely ignored and to be fair it is sometimes tricky to exactly know what is going on although sometimes I feel it is relevant.

The long term review this year was mainly spent discussing managing of my HbA1C which is hard to manage with diet due to my breathing and needing carbs to do that. and still to be sorted out. May need a dietician to help. .. so the asthma and COPD were discussed for 5 mins at the end. Eye roll eh ?

For those of use with COPD it is a matter of keeping up the awareness, lots of self reading, self education and educating some of the HCP's as well. Full time job eh ?

Thanks so much for your support it is appreciated.

Go well,

Pauline

[Caspiana]

Hi Pauline. I'm sorry I can't help with your question. I just wanted to say I'm sorry it's been tough anf it's nice to see you posting. xx ❤️

[PaulineHM in reply to Caspiana]

Thank you so much. All will be well - eventually.