Difficulties of dealing with brittle asthma as a young adult- any advice?

Hi everyone,

This is the first time I've actually posted a message here, although I do tend to come on every few days to see what others are struggling with.

I'm 24 and currently a graduate student doing a lab based PhD which I love. I was diagnosed with asthma at about 16 and despite being on quite a lot of medication from the off it didn't cause me too many problems at first. Over the past four or five years though it has been rapidly deteriorating and trips to hospital are now frustratingly common. I used to manage to leave A+E after a few hours of treatment but each time I seem to get more resistant to the drugs and now always end up being admitted for several days. I was also medically evacuated out of China 18 months ago after developing a severe chest infection whilst backpacking out there.

In between attacks I am fine and extremely active but they seem to come from nowhere and are generally linked to chest infections. Its starting to have quite a big impact on all aspects of my life as I also suffer from bad side effects when I'm on pred (way too often) - the day after my last admission I fell down a flight of stairs as it makes me loose my balance if the dose is to high and so I've had my right wrist in plaster for 7 weeks!

I'm getting quite tired of the constant courses of antibiotics and pred whilst trying to carry on with life as normal. I feel like I'm getting behind in my PhD and my relationship with my boyfriend has been really starting to suffer. I just wondered if there is anyone who could give me some advice on how to pull through this so that I can manage to juggle it alongside a successful career and relationship, not to mention being able to travel freely with friends without having to lug round so much emergency medication and pay a fortune in travel insurance premiums.

Sorry for such a long moan. I know that things could be a lot worse but every year I deteriorate and despite my drs, nurses and cons being very sympathetic they just seem to bounce me back between themselves without actually changing anything. I always put a brave face on for friends, family and at work which I think now has made it worse as it means no-one really understands what I'm going through.

Thanks for listening,

Sarah

4 Replies

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  • Hi Sarah!

    Your story sounds very similar to mine, we even have the same name! Firstly you're not alone. I'm 25, also a graduate and working full time and have chronic lung disease, in my case asthma & bronchiectasis.

    I'm lucky like you to be essentially unlimited in my day to day life by my lungs, but am prone to sudden severe attacks which leave me in hospital for weeks on end. When well I travel: I've backpacked round Vietnam& Cambodia, spend my weekends climbing mountains and a mummy to a small kitten!

    The thing that's made the most difference to me was a referral to a specialist in brittle asthma, in my case the North West Lung Centre. If you're not under such a centre already it might be worth asking for a referral, they are fabulous.

    I'm going to stop waffling now & go to bed! I'm sure loads of others will be along to lend their advice.

    If you want to chat further please feel free to PM me.

    Stxx

  • Hi Sarah.

    Welcome to AUK. Like yourself, and ST - I'm a 29 year old graduate, and also a brittle asthmatic. I've had recurrent trips to ITU over the past few years, but before that having had pretty normal bad asthma which didn't stop me from leading a very active life.

    Sorry to hear you've been having so many problems - but rest assured - you've come to the right place to find support. There's many of us lurking away on the boards here. We're a friendly bunch - and you'll find that people have a lot of experience and advice to offer - but most of all, they just understand.

    Brittle asthma is something that is very hard for others to understand/relate to- particularly if you are well in between attacks, and do the 'brave face' thing well. I was rubbish at drama at school - yet I can certainly do an amazing job of not letting anyone really see how much of a mess I'm in / what I'm going through!

    Have you been seen by a brittle asthma specialist centre? Where are you based? There's quite a few centres around the country - I see the team at Heartlands Hospital in Birmingham, who manage my care jointly with my local hospital in Lincolnshire. Often it's useful to get a fresh set of eyes look at you, and see if there's anything else to add to manage things that are aggrevating your asthma, and prevent or reduce side effects. I was started on long term azithromycin (an antibiotic) - partially for its effect on chronic infection, but also due to it's anti-inflammatory effects. The specialist units often initiate some of the more unusual treatments, which can make a huge difference.

    Falling down the stairs?! Owww. Been there, done that - got the t-shirt... (only I ended up with some stylish crutches, not a cast!) lol..... I know how soul destroying it can feel when you get nasty side effects from treatment that you know is essential / life saving - hope your wrist is on the mend! What did they say the mechanism was of you losing your balance when on high dose pred?

    The travel insurance thing is difficult - I've usually found that most places don't load the premiums too heavily if you've not been in hospital in the previous three months. That was certainly the case last time I tried -I got a policy through columbus direct. However - things might have changed, as it has been almost 2 years since I've been well enough to consider going away, let alone stayed out of hospital for long enough! What I would say though - is make sure you always tell them everything - as the last thing you want is them to reject a claim should anything happen whilst you are away - I dare say medical evacuation from china wouldn't have been cheap had you not been covered! If you search the forum for 'travel insurance' there's several useful discussions. I'm hoping to get away briefly this summer- so will be looking for them myself. If i find them I'll bump them up to the top of the forum pages.

    With regard to the worry of falling behind in your PhD - is your supervisor being supportive / aware of everything that's going on? How far through are you? What is your PhD in? I take it there's nothing in the lab that's aggrevating your lungs?

    One of my main problems was my inability to accept that I needed time off from work even when I was really quite poorly with my chest - I'd on occasions end up being admitted from work as concerned collaegues would 'tell on me' to the resp team (I'm a doctor, and at the time was working at the hospital where my resp care was based!) so I'd get 'captured' but in hindsight - that awkward situation should never have occurred, as I shouldn't have been at work - so should have been being admitted via A&E/my GP. As it happens, for me - sadly things got very complicated about 18 months ago, as I ended up seeing far too much of ITU and got lots of complications from treatment- so had to give up work for now. I'm currently on long term sick leave trying to get myself fit enough to return to my career at somepoint in the future. Please try to listen to your body, and not battle on too long

    Right - not sure what else to say, other than try not to get too despondant - it may take some tweaking, but for the vast majority of people there's a huge amount that can be done to make things better. Apologies for the rambling reply by the way - but it's silly o'clock in the morning, and I've been awake for ages unable to sleep!

    Please feel free to PM me if you have any questions. If you make your profile public and allow PM's - people will be able to send you PM's too - you'll probably find you'll get more responses - not everyone will post publicly.

    take care, let me know how you are getting on.

    KSD

  • HI Sarah

    Sorry to read you're finding things v tough with juggling everything on top of your asthma.

    Im v similar to you too, im 28 and was diagnosed with asthma as a child then had couple difficult yrs about 11yrs ago bouncing in out hosp just about every wk even if this was only a few hrs in a and e like you. I was then diagnosed with brittle asthma with the last 7 yrs been the worst with countless hosp admissions inclu itu. Like you i also manage to put brave face on and often use 'im fine' but my friends and family over the yrs have come to read between the lines and realise when im not.

    It is definately a learning curve, learning to adapt and cope with everything else going on in your life as well as managing such an unpredictable condition. I used to be reasonably well in between sudden attacks but these became more and more often and got to the point in the last 7 yrs where it is more of a continuous battle with good and bad days and the 'usual' ups and downs even within one day.

    Like others have said would be a good idea to get referred to specialist centre. Athough ive not been to heartlands or brompton i went to Newcsatle as was classed as specialist centre near to me in York. At this time i was also started on the bricanyl pump which have been on now for nearly 4 yrs and although a pain to have it did change my life and reduced my lengthy hosp admissions.

    Do you use nebs at home?

    Fully sympathise with situation with your phd, although im not that clever to do one of those i am a qualified teacher but it was certainly not easy to pass my 4 yr course but i was determined to prove them all wrong and got there somehow!! Unfortunately my full time teaching job only lasted a couple of yrs as spent more time in hosp than at work or in my own house in the those 2 yrs so had to reduce my hrs to part time to avod loosing my job altogether. I found this incredibaly hard to accept after training for a job i loved but knew couldnt carry on the way i was. I now know it was the best thing i did as still able to work but able to rest too and thankfully my school are v understanding(well they are now) about my sick time.

    Totally understand about strain it puts on relationships too as im sure many here do. I think the best thing is to talk about it and help your boyfriend understand how it is for you and also how he copes with it but this takes time doesnt it. Hope it does get easier for you both.

    Sorry for rambling on probably with no help at all but wanted you to know you're not alone with these struggles not that that makes it any easier to deal with.

    Msg me if want to chat more.

    Take care

    Sarah ( must be something to so with the name!!)

  • Hi sarah,

    Like you in also a brittle asthmatic. Im 23 and jsut had to leave university due to too many hospital admissions. I left university with a DipHE instead of the Honours degree i really wanted. It came to a decision my degree or my health.

    It can be very difficult to live a noraml life with brittle asthma when it is not incontorl but once it gets under control it is a different story. i had a period where I was back able to play sport agian and though that this was it everyhting was sorted but I got a bad virus and it kicked everythign out again and we are still struggling to get it all under control.

    I think it is even more frustrtaing when you can live a relativly normal life inbetween attacks and then go down hill quite quickly. I have had experience of both sides of live and find this more frustrating as you know what you can normally do whereas when it was bad all the time I wasnt as frustrated because I always seemed bad to me so didnt experience quite so much was I was normally able to do.

    Sorry its all a bit jumbled. Lungs jsut not quite bahvaing today and not feelign too great.

    take care

    olive

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