Going to respiratory clinic next week - what questions do I need to ask?

[yaf_user681_25830]

Hello everyone

I have had asthma all my life, and to a certain extent became very complacent about it - it was just something in the background that I had to live with. Every winter, 3 or 4 courses of preds and anti-b's, but it just became part of life, I suppose. I went to respiratory clinics once or twice, but was always discharged from them quite quickly, as I was managing things ok. I have never developed an on-going relationship with an asthma nurse or GP asthma clinic.

However, things have become much worse in the last 4 or 5 years. I have had many hospital admissions, and frequent bouts of pneumonia. I was intubated in ITU three years ago, and my partner was told that I had a 50/50 chance of pulling through. I now have to use a nebuliser at home.

I am now 42 and I realise that the asthma is no longer something in the background that I just have to live with. I need to be much more pro-active. In the last year, my best peak flow has gone from being 410 to being 300 at a push. When I was in hospital at Christmas, the consultant told me that I had some scarring on my lungs as a result of the frequent pneumonias.

My only trigger is the common cold, which always turns into a major exacerbation for me.

There is a lot of things I don't know about - for instance, the 5 step protocol that people talk about on here, having an asthma ""care plan""etc.

My question is this, I am going to the respiratory clinic next week, and I want to develop a list of questions / requests for action before I go. I want to attend this clinic on a long-term basis. I am particularly interested in talking to the consultant about taking anti-biotics on a prophylactic basis, to see whether I can stop getting so many infections / admissions.

What questions do I need to ask? What (reasonable) ""demands"" do I need to make of this service?

All ideas / suggestions will be very much appreciated.

Thanks in advance,

Maz

xxxxxx

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in my experience respiratory clinics vary considerably.

They should give you a five step plan, of what to do when, but make sure you get phone numbers/beepers of people to call at the clinic if things go pear shaped.

The anti-biotic that is being trialed in Canada and the USA for its anti-imflamatory properties in asthmatics is Azithromycin. i do not use it all the time, but for instance recently 5 weeks after a really bad episode treated at the time with amoxicillian, I was still not right, so asked for a script of azithromycin, and 3 days later my peak flows are back to normal.

I would say though, I had to really battle in the uk to get azithromycin, I went through an SHO and one consultant, before a senior consultant actually agreed with me.

My final argument was, that it had worked before in the USA, and what was the harm in trying, eventually they agreed.

My circumstances are not ordinary, as I live between the UK and US and have doctors in both countries, who mostly try not to agree or talk with each other, I feel like a mediator most of the time. Also I am currently part of a trial for a new asthma treatment, so everything I do has to be approved, to make sure it doesn't break the trial protocol.

I think relationships with doctors are really important if you are an asthmatic. I have had some really good ones, and some really really bad ones.

My main weapon in getting the best possible outcomes has been my peak flow diary. I keep my diary in excell on my computer, and when I have an appointment, I print charts for the doctors or asthma nurses, and then write relevant factors on the chart, ie virus...took pred...had tooth infection etc.

They LOVE them, particularly if you let them keep the print out for your file.

This has helped me to get people to listen to me, and take me much more seriously. It also helps me to demonstrate patterns in my asthma, which otherwise are hard to explain and show.

I hope the appointment goes well, and that you get the results you are hoping for

cheers.

RI

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pf chart

Hi

Your questions seem to be clear in your post but it is worth writing down anything you want to ask so you don't forget.

Infections always affect me badly. I have antibiotics at home so I can start them at the first sign of infection but I think you would need to ask a doctor about prophylactic treatment

Rihobbs point about peak flow charts is important.

I always take my peak flow chart to any medical appointment or if I have to go into hosp. I also keep a note on it of pred usage, salbutamol usage, infections etc. I can often see a changing pattern day or two before any splats so I am prepared and can often seek help before I have a full blown brittle attack.

The charts show ongoing patterns and changes in a clear way to anyone involved in your care so they are very helpful.

I am impressed with the idea of a chart in excell but I just use the asthma uk one and fill it in by hand each day.

Go to the 'all about asthma' tag on the home page and look at publications. All the proformas for asthma plans etc are there.

Good luck with your appointment.

[yaf_user681_25874]

Hi Maz

Just to echo the comments by the others - relationships with your Dr or nurse are very important, and don't assume they will know or understand about you and your symptoms or history. Eeverybody is different so you need to tell them about you.

PFs diary - I was with the resp nurse and cons yesterday and they both said how useful it was I had mine with me with a clear picture from September last year onwards as it gave them a lot more idea of how I have been etc.

Ask them to go through the 5 steps and how it relates to you in terms of treatments you have been taking and any changes they want to make.

An asthma plan will fall naturally out of that too, but if they don't suggest it, then ask for one. I've only had mine since December, but using a plan with a pf diary should mean you are able to take some control over your treatment and step medication up or down as agreed with your Dr.

Given that your main trigger is getting a cold, a diary and action plan would probably work for you..... I've only my own experience to go on here, but generally a cold virus will result in a deterioration over one or more days for me rather than a sudden attack.

Good luck for next week

Kat