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Chronic Severe Asthma

Hi as many of you know i seem to have more chronic asthma than acute attacks. Although i do have acute attacks from time to time. Does anyone esle have similar problems? I am on max inhalers, above legal dose of aminoph, spiriva, antihistamine, nasal sprays and nebs when needed. Any advice or help would be appreciated.

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Hi Bowmei,

I have been chronic all the time for the last 10 plus years.

I found it very hard at first especially with lots of accute episodes etc.

I still have accute episodes ( I am brittle 1 & 2 or just plain Brittle as my consultant puts it - he doesn't really distinguish between the 2 now)

My Best PFs are 180 ish on the new EU scale - I have never been above 230 old PF scale for a long time.

I have got used to it in a way and manage to get along with naff lungs.

It takes time but I have just adapted and managed it plus tried to live as well.

I don't let it rule my life (difficult at times!!!) although at the moment I am living with it as my pfs are running at 100. I always hope things will improve.

I think the main thing with living with a chronic illness is understanding how it works and affects you, your symptoms, when to increase meds (under your protocol) when to get help if things aren't improving. Having control over this means that you rule and not your illness even if you do feel crap!

I am fairly 'relaxed' about when I feel worse - chronic deterioration I can cope with to a point ( getting a bit peeved off at the mo as been on my s/c for 2 weeks) but the accute attacks, can be unpredictable - I know I get them and feel some reasurance that I have my nebs, O2,epipens etc to hand.

I just go with the flow and get on with life the best I can.

Hope this helps a bit and makes some sort of sence.

Take care

Kate

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Hi Bowmei

I have been described by my consultant as chronic severe brittle and any other word he seemed to come up with! He seemed to be lost for words as now I am off to Brompton tmw to see if they can come up with some answers. When I saw my own consultant all he used to do was tweak the odd dosage of something but said really I was ""beyond his expertise!"" - helpful! I do have acute attacks too as you have described but the last one was January (that i needed hospitalisation for anyway) but it is the day to day symptoms that really get me down. I am now almost a prisoner in my own home as I am not strong enough to go out on my own. Each attack I have seems to push me further and further down physically, I even have to resort to walking with a trolley or a stick when I go out on the odd occaision now as I wobble too much - it helps, esp with the confidence but doesn't do much for the street cred! I too am on a concoction of stuff and I wonder sometimes what is doing me any good! I am taking quite a high dose of pred (and have been for the last year) uniphyllin, montelukast, seretide, and a fair amount of nebs too. When I saw the consultant at OP at RBH in Jan he said not to pin too many hopes on things (he meant when I came in as an in patient for tests) but the aim would be to get me off the pred or at least reduce it considerably but it may mean looking at alternative medication in order to do this, perhaps a s/c or something.

It is hard not to let it get to you but hang in there and I hope what I have said may have helped in some small way. I have good days and bad days and the only way I can cope is go with the good and give in to the bad (or eat lots of chocolate!!).

Take care

Love Foxy xx

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Hi Kate I am with you on this one. Get fed up with the bad times like this week but try to make most of any days that enable me to get out even on my scooter. Work really finishes me off but its so important to keep me sane and feeling bnuiseful. But do know it is hard to accept when things going down and seem not to get better as it is difficult to accept the next limitation.

Want to believe that things will improve again cause I think they will its just riding the storm in the mean while.

Den

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my cons describse me as chronic seveer as well - i ws refered to teh brompton lst sept adn thye are havgin a go at sortign me out. My locla hs run out of ideas - tghy cn deal wiht the acuet attakcs btu it is teh logn term treatmetn taht thye struggle wiht. I'm on, wot sems liek, lods of meds -aminoo, pred, nebs., inhalesr anti histamines, abs, anti acisd,. K+, calcuim etc.

I fidn as Kate says taht u do lern to liev wiht the symptomms - my pf is normaly static aroudn 180ish btu teh lst few weks has ben donw at 80ishh. i am relient on nebs whihc is dificult. I haevn't qiute coem to terms wiht livgin wih a chronic diseasee adn am stil feling my wy thruough wot i cne and cnt do! wokr beign a goood exmple.

Nto suer that i cn giev any reaal adviec excetp to tke eachh dy at a teim and do wot u feel taht u can.

sory botu the typooos - am fidng it difficullt to engaeg brain wiht fingres

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Hi Bowmei,

I believe that you should never give up. Whether trying to get a cure ( the long shot, and ALWAYS worth keeping in mind) or by trying to improve upon a chronic condition,- like you have often described in posts gone by - re trying new treatments and open to different medical therapies.

My most recent diagnosis made me fell pretty sorry for myself for a while.

I just wished I could have turned the clock back about fifteen years and started again with the most recent developments in drug combinations..

But after 'licking my wounds' and getting very bolshie with everyone, -family, friends and the medical profession I'm sorry to say - I realised that it's only me that can help myself, - if only by practising a range of strategies to calm my stubborn, don’t want to listen streak - regarding the 'chronic' part of my condition!

The definition of the word ‘chronic’ means going on for a long time, but actually, doesn’t include or mean the severity of symptoms, which could be severe, moderate or mild.

And I believe that is the key to managing a chronic condition. Yes you know that you are going to have bad days. My bad days, hours even, range from a pf of 160 to 200 plus symptoms, and I have got to take today and/or the next few hours easy, and with the benefit of lots of hindsight (unlike the old,’ I’m going to carry on until I collapse’ stupid behaviour type days), to pf’s and symptoms which allow me to work, run and feel quite normal, (350’ish but still trying to push the pf up).

There isn’t an absolute answer to your question Bowmei, but my tip is that you continue to be absolutely and utterly well prepared to cope with certain exacerbations, as Kate has already said.

Taking ALL my meds on my recent holiday, even the pred that I’m on strike about at the moment, gave me a huge amount of confidence in being able to handle any unexpected ‘big dipper’ moments.

Similarly when I go running or go to work having my mobile phone, api/epipens(still prefer the prefix epi) plus all meds in my bumbag/handbag allows me to ‘forget about my condition. Or, at the very least able to cope, when subject to the unexpected, allergic trigger.

Lots of love,

Mia

xxx

BTW Thanks to your advice, I am seeing a Chinese doctor next month in…China!

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Mia,

我喜欢我跟你一起出去中国!!!!

I wish i was coming!

你住在那里中国?

Where are you going in China?

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Bowmei,

I am going to Beijing, Chengdu and Ningbo, all in the space of ten days. Not on holiday but for work, - nu3 li4 gong1 zuo4 !

Mia

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非常好

我要你又非常时间。

可以你买这些筷子?

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Hi Bowmei

My son is diagnosed with chronic severe asthma. He was diagnosed with asthma at 5 moths old and chronic severe at 9. he was on 40 mgs preds until 10, they were decreased and now he only has them about every 2 to 3 months for short courses. He was on aminoph, but he moaned and moaned at the consultant about them, but he does go on aminoph drip when he has an attack. His prob is, that when he has an attack, it will last for weeks and weeks, no matter what preds and other meds he is given, it is very hard to ""Break"" an attack. He now has his sub-cut, which appears to help him alot, but that has other probs. He used to bew in hospital from sept until march usually for about 2 to 3 weeks at a time and some-time 1 or 2 visits during the summer. Last year he was admitted 3 times and this year he has been in twice. But they are for shorter periods of time. He does have accute attacks some-times, but not often, they just appear to creep up slowly on him!. I have accute attacks, but at the mo, appear to have symptoms all the time!

Take care

Vanessa

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Vanessa this sounds like me. Without the long hospital stays. If i have an attack it starts of a cycle of pred, meds more meds etc. Even a mild attack or stress will lead to chest infections exaccerbations of asthma for weeks if not months at a time. Sorry your son is going thru this but it is nice to know i am not alone. Have always felt a bit of an oddity with my asthma. Although posting on here we soon realise we are all odd in some ways!!!!!!!!!!!!

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