Post Hospital Discharge

Hi all,

My asthma has been shockingly uncontrollable for about 4/5 months now, culminating in being admitted to hospital for 2 weeks after catching the flu. I've always had asthma, with the occasional blip here and there, but by and large it has always been well controlled and has always responded well to any adjustments in medication. Since August I have been a huge decline in my condition. At first I was having frequent bad attacks - I had to visit my local minor injuries unit 3/4 times a week to use the nebulisers. My GP obviously had to go through the 5 step system but the process is incrediably slow and frustrating. My condition then slowly developed into persitent wheezing, fatigue and sleep problems on top of current symptons. I couldnt walk 100 yards without being exhausted. Blood test followed, daily peak flow charts, spirometry tests, prednisolone, singulair, uniphyllin, seretide, symbicort, x-rays. Everything.

I've done it all, several times. I was a spectacular flop on the spirometry test in particular. Since Novemeber I have been seeing the Chest Specialist, again, more of the same test, more questions, no answers. I then got the flu and was in a terrible state. I was taken to the medical assessment unit where my condition deteriorated at a remarkable rate. I was move to ICU where I remained for 5 days, of which I didnt sleep at all. I was then moved onto a general ward and it was not for another week that i could even get out of bed. Nebulisers were used several times a day with no effect whatsoever as well as IV hydrocortisone and aminophylline. It calmed down a few days later and was allowed to leave. However, all the medication is having some adverse side effects. I cannot sleep at all. This is causing other problems. My chest is extremely tender (as to be expected) im sweating, shaking and have cramp in my lefts and pins and needles all over my body. The fatigue is still shocking. My lungs are apparantly in the state of 65 year old smoker. I'm a slender 25 year old! I have a huge dip on my PEFR in the morning. I can normally get a 550 in good health. In the morning i am lucky to get 100.

So basically, Im waiting to see the specialist again after Christmas where some allergents will hopefully be revealed and we can hopefully finally settle on my inhaler combination. By the way, the level of care I recieved was amazing. The nurses were of the highest standard.

Basically, I understand the unpredicatability of asthma and the approach of 'trial and error' but has anyone had such a decline for such a long period without any answers and felt argualbly worse after coming out of hospital?

Thanks

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sorry your feeling so rough. I managed 8 days in hospital but only on a chest ward following an outpaitents appt at costa in chest clinic where i saw reg but was unable to acually put 2 words together although pf was about 300 and best is 400. meds changed and flioxtide added but since discharge have got to stage where at mo pf is normally around 250 even with loads of ventolin.. had a very rough day yesterday so ended up at a&e last night and was discharged 2 hrs later after couple of nebs and dose of 40mg pred. so now got 5 days of soluable pred at 40mg whereas b4 whe had pred 1 since discharge from costa in last week sept was at 30mg. i give up and don't understand any more. sorry can't be more help.

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My wheezing isnt too bad (by comparison) at the moment.

All the medication is really taking its toll. I take a neb first thing in the morning along with 4x symbicort and 1x uniphyllin then after my evening meal i take another neb then 1x uniphylliin, 1x singular, 8x prednisolone, 4x symbicort.

The psychological problems are hard to over come. Im going to be weak after being discharged from hospital but apart from my wheezing easing off, i feel worse. Saw the on-call GP yesterday as was so laid back he could have been in a hammock wearing his slippers and smoking a pipe.

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Sorry am not much help re psycilogical side all I can suggest is keep using this site. I have to say it has been a godsend for me even tho i get lectured by a few at least i know that those I chat to really do understand what I am going through cause most have been there themselves. do give it time but pester gp's if no better and get another opinion.

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It can take months to recover from a really nasty attack. Take it easy and build up slowly, you are still learning your limits. I know it is frustrating I used to happily work 16 hour days on a film set go home, cook a meal and tidy up. On non shooting weekends I could cheerfully cope with taking my 4 kids plus random extras dry slope skiing then off to football and still blitz the house on sunday! I had one speed whirlwind. Taking it slowly was the hardest thing I have ever done.

I was advised that look at it like a fuel tank you not run your car till empty (well not intentionally anyway) as soon as the little warning light comes on you make plans to stop and fill up. As soon as you feel tired stop even if that is halfway up the stairs and recover a bit before pushing on. It is advice that for the most part I heed these days after months of bouncing in and out of hospital.

Don't be hard your on yourself the emotional strain of a long stay in hospital especially when part of it is in ITU can be tough. Do you have family who can help and take some of the day to day strain off you.

Bex

[KateMoss]

Hello Inch,

sorry your having a bad time at the mo.

I noticed in your last message that you are taking Predinsolone steroids in the evening.

They should be taken in the morning unless you have been specifically told to.

Steroids can keep you awake at night and make you hyperactive - this could be one of your major problems. Virtually everyone taking predinsolone tablets takes them in the morning. Please check with your GP ASAP.

Also, it can take a lot of jugling around of medication to sort out a regime that works - trial and error.

There are quite a few people here who can help and advise as they have gone through difficult times too.

It has taken years to get any sort of order ( if that ) to my asthma.

Take care

Kate

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Thanks for the replies.

Its the losing something that you had syndrome that is hard to take. Its also the constant explanations. I know people are concerned but I really think people have no idea how severe asthma can be. The amount of times i've been told to go to the doctors and get a 'stronger puffy thing' is getting annoying. Fellow asthma sufferers are the worse. They might use their inhaler once a month, a friends inhaler expired its best before date. Anyway, its annoying that i look unift and unwell BECAUSE of the asthma, but people tell my im ill because im out of shape and ill. I was in good shape before all this. Ive probably gained a noticeable 2 stone in the last few months.

PS I have been told to take my pred with my evening meal as it was shown i was absorbing it best then whilst in hospital

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Inch, dealing with those who assume that all asthma is cured by a blue puffer can be hard and the numerous kind and well meaning people who cut out bits from the paper with news of miracle cures can also be frustrating. I have found using my lovely young sons description of my asthma as extreme the best way to explain.

If you are going away to a hotel I tend to invent a new name for it to ensure the hotel don't use chemicals in my room favourites are the rare Sinclairs lung after my Torbay consultant or the latest one Gow's syndrome after my RBH consultant funny how there is no problem making sure my room is chemical free when I use made up names but when I use the words asthma I get a bored response usually coupled with a ""I have an inhaler too"".

Bex