Research and understanding

I would really like to have more of an understanding more about my asthma, and thought it might be a good idea to do more research. Particularily around the exchange of gasses and the physiology of the lungs. I am told I am a brittle, however I do find it very difficult to see why sometimes I am treated very aggressively - hours in resus with IV Hydro, Mag, the stay in HDU etc. and sometimes not. I would like to understand the 'trigger' or point that the medical profession use for the aggressive treatment. And I have so so many questions....

Does anyone have a good website, or book that would explain this in more detail. I have done research on the brittle asthma and the treatment of such and reviewed the British Thoracic Guidelines, but I would like to have more of a biology lesson. Maybe there is something else I could do to make this illness go away.

Thanks

Debbie

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Debbie, maybe your 1st point of call is your consultant and or asthma nurse specialist, who are you looked after? It is worth talking to them as everyone has different triggers. If you are brittle and especially if you have been in ITU then the drs are going to be agressive with your treatment as it is possible (but rare) to be talking one minute and in resp arrest the next so they tend to go in all guns blazing. I have a rule if I am still talking then I expect to be involved and have some control over how I am treated and I am not afraid to say ""you need to do that or I don't feel I need this"" after all I am in resus if I am wrong I am in the right place and 9 times out of 10 I am right. You know how you feel so if you are able to communicate with the Drs then don't be afraid to assert yourself. Only once have I had a Dr say ""look you may feel you don't need this, your gases everything else is saying otherwise so we are going to do it"". If I am not speaking then frankly they can do what they like cos I am beyond caring.

Bex

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Thanks so much Bex

My asthma can be in this stable place of instability one minute and turn pear shaped the next minute. Usually a trigger and I seem to have rather a lot, and developing more (which seems really strange!)

I have a chest consultant and respiritory nurse - seeing her in a couple of weeks. I have many questions for her. Do you think I could ask her if I could review my file with her when I see her? I agree with you as when I am in resus, communicating is usually a problem, and that is usually when they are aggressive. Sometimes I would like to know where my gasses are. But not sure if this is what I should know. Couple of admissions back, the Dr tells me after a couple of hours in resus that he has contacted ITU and then are on their way down. I am was not sure why he told me - was this for me or him - had he run out of options. But of course I couldn't discuss with him as I was unable to. I recovered just before they came enough for them to not put me in ITU. The last visit to the hospital the Dr on call says I should get a referral to Brompton. Just been at Harefield all week with my son who had lung surgery so was just reading up about Brompton. I thought it would not do any harm to try and understand more about my asthma and see if there is more I could do to help myself. I have been unstable for 6+ years being a persistent offender when it comes to hospital visits.

So many questions on the physiology of the disease/illness. The whys and wheres and hows are too numerous to count. I have a big list for my next review in a couple of weeks.

Thanks for your help Bex - You have hit the nail on the head with being able to communicate and this is usually when they are aggressive.

Debs

[yaf_user681_25830]

Hello all. I have composed a letter (well, more like a series of bullet points) which I or my partner give to the paramedics or to the first consultant I see at A&E. It contains my health history, when I was last in ITU, what medicines I am taking, details about what treatment has worked for me in the past (for instance, I ask not to be given theophylline, as it makes me sicker with its side effects), and other key details / requests. This has worked fine for me, and I would recommend it (especially if you have gone beyond the stage of being able to speak).

Hope this helps,

Love

Maz

xxxxxx

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Thanks Maz, thats an excellent Idea. I will pull together a document. I am off to see the hospital on Thursday this week. This is the one that I fall under for the chest clinic , and I will be armed with my list of questions too - I am seeing the Respiratory Nurse. I am also under a Thoracic Consultant there too. But I really like your idea of a Document - its good. I am so used to living with this and do self manage my illness with hospital stays when I can't, but I have still much to learn it seem.

thanks again Maz

Debs

[KateMoss]

Hello,

I always carry around me, printed out a few times and stuffed in all sorts of places, a treatment protocol written in conjunction with my consultant that details all my details, allergies, usuall peak flows ( not good at best of times) usual treatment, step up treatment, emergency home treatment (Nebs O2 Epipens etc) then a list of what works best for me that can be given in A& E eg IVs etc.

This is also logged with Medic Alert too!

Very usefull it has been especially when I end up at a different hospital.

I just print new coppies my self when it needs updating - my Cons is happy with it etc.

Kate

XXX