Brittle Asthmatic...Dont no what to do anymore?!?!

Hi everyone!

Hope you are all ok and not suffering to much with your asthma!

Just joined tonight, didnt no this was here and i now dont feel so alone.

Just to introduce myself really, im 21 and been asthmatic since i was around 5 but got told on the 1st of February this year i was what the doctors see as a brittle asthmatic.

Ive had 11 admissions since this diagnosis, including 5 i.t.u ventilation admissions. Since the diagnosis of being brittle asthmatic in feb to now as i write this message i have had less than four weeks in my own bed im always in hospital..on the same ward. Im on a heck of a lot of medication this being ventolin 4times a day and PRN, Spiriva 1 times a day, Pulmicort PRN as needed and just been told this can be used as a reliever, Seretide accuhaler (500) two puffs twice a day, Mucodyne capsules (375mg) 6 a day, Montelukast one at night and Uniphyllin (400mg) two a day and im on a continous prednisolone standard dose of 30mg a day. Being on this i thought atleast it would get easier my asthma but it hasnt even settled one little bit. As i type this in my laptop my third night at home since my last discharge i can already tell im heading for another attack. Im also on a lot of other medication for other health issues but they have been looked at to see if they react to all of the above medication and nothing has been identified.

As im from a smaller town area our local hospital to put it nicely is not very good and on my last admission the doctor told my mum he had never heard of someone being 'brittle asthmatic'. At present there is also no one that specialises in asthma in my hospital and i go under a locum consultant who is different on each admission...which obviously is not helpful at all. Ive been told i need a nebuliser by the intensive care consultant but can not get one as funding was declined...and trying to do my degree at university i bet most of you can guess i barely can afford to eat never mind pay the money out for a nebuliser.

Basically i feel asthma has ruined my life well and really really sorry for being so negative reading through all the posts everyone seems so positive but im at my wits end now!! Im having to repeat my final year at uni due to absences and im a dance teacher aswell in my spare time and can not do this anymore just watch. Ive danced since i was 5 and taughtnow for 10 years.

Was just wondering has anyone experienced problems were they feel there just not setling at all with their asthma. I no medical advice cant be given but just to no im not alone at the moment would be great!

Sorry this is such a long post

take care


13 Replies

  • Just thought I'd let you know you're not alone. I'm not brittle and cant relate to the hospital admissions but at the moment they're having great difficulty settling my asthma too. To the point where, as you say, I'm barely able to do many of the things I enjoy anymore (ie horseriding) due to asthma.

    I hope it settles for you soon and you find some answers. Have you been referred on to a hospital that specialises in difficult asthma- for example Heatlands in Birmingham or Royal Brompton in London.

    Take Care



  • Raychi, sounds like you are having a nightmare time, it can get better, with a treatment protocol that fits you hospitals can ensure you get the right things quickly and you yourself may find you are better at recognising the big ones building. I know that having a set protcol and my own ability to understand my own asthma patterns has meant although I am still very restricted I don't have as many of the huge attacks I used to have but it took a referral to a tertiary centre for that to happen.

    You really need to be seen by one of the big tertiary centres for difficult asthma and you are lucky being Merseyside that Dr Rob Niven is based at the Withenshaw he is the asthma expert up there and I know he works with the Royal Brompton on some things, he has an excellent reputation for dealing with difficult asthma, it can take a while but it is possible to get some measure of control back. Ask your consultant for a referral to him ASAP I am sure he will be able to to help.


  • Hi Raychi,

    Just thought I would say as a fellow Brittle asthmatic that things can get better with the right cons, meds and protocol.

    I went from my last year before being reffered to prof ayres about 10 yrs ago of being on 40mg a day of of pred and load of other stuff for 5 years continualsy and being in hosp 37 times in one year alone with 20 being itu admissions to now poss about 5 or 6 admissions a year, much less meds and only pred about 10 times and that was only with their specialised help!

    But to get there I had to do the fighting to get my local hosp an go to refer me but it was worth the fight, I will keep my fingers crossed for you !!


  • Get in touch with NARA, they may be able to help with the cost of a nebuliser

  • Hello Raychi,

    You are not alone out there! I am brittle too and it can take a bit to get meds etc sorted out to help get you back on an even keel. Please push for a referal to one of the big hossies, eg Withenshaw as Bex suggested. Get a written protocol. It won't stop the attacks but will give you and the doctors some guidance when you are not well. Learn to recognise symptoms and get a step up and step down protocol which can help.

    Don't sit back and accept what your local says - being seen by different docs each time does not trigger the alert that your asthma is out of control. They see you once and don't always connect all the admissions together.

    Get your college / uni to help too if possible.

    Another thing you could look at especially if your 'big ones' are on a regular basis is hormones! Some people here find they are affected every month regularly - bad form of PMT! Just a thought.

    Anyway, Take care & keep chatting to us - we have a great wealth of knowledge & experience!!!


  • Hi Raychi,

    Welcome to Asthma UK, I hope you will find us a useful source of information and support. We are a friendly bunch, so please don't hesitate to ask questions, even if you think they are silly ones! I'm really sorry to hear that you've had such a tough time recently with your asthma, and that you've been diagnosed with brittle asthma.

    First of all, and most importantly - YOU ARE NOT ALONE. I know that brittle asthma can feel very very isolating, and as if you are the only person in the world to suffer from it. I think most of us have felt like that at one point or another - I know I did, before I found this site. There are many of us on here with brittle asthma, and whilst it can be extremely disabling, many of us are able to work, enjoy hobbies and travelling, and other aspects of 'normal' life. Sometimes things have to be done a little differently, but it is possible to get a measure of control and to have a life. I know it may seem like a remote possibility at the moment.

    Just to tell you a little about me personally - I am 30 and have had brittle asthma since I was 18. During that time I've had many hospital admissions and a fair few ventilations, but I've also managed to complete a medical degree and work as a junior doctor in one of the busiest hospitals in this country. I've also got married, travelled, enjoyed many hobbies and interests and met some wonderful people, many of them through this very site. At my worst, I had a frequency of admission similar to yourself - there was one six month period when I was a student when I was ventilated five times in six months and spent most of that time in hospital. Despite that, I managed to make up the time I had missed and complete my medical degree - perhaps more from a stupid degree of stubbornness than anything else! Life with brittle asthma is hard, and presents unique challenges, but it is possible to have a life. I am currently not working, but this is in part not directly due to asthma, but due to some rare complications of ventilation that I experienced last year (they are very rare in asthmatics, so not something you should worry about) - but I still manage to have an active life, travel, see friends and work as a moderator on this forum, among other things. It does get frustrating, at times, and I can sympathise with your feeling that asthma has ruined your life and that nothing is working - but there is light at the end of the tunnel.

    The most important thing that I can tell you about your asthma is what others have already said - GET YOURSELF SEEN BY A SPECIALIST IN DIFFICULT ASTHMA. This really is key, I can't stress it enough. As Bex has said, Dr Rob Niven at the North West Lung Centre at Wythenshaw hospital is closest to you. There are also centres at Heartlands in Birmingham and the Royal Brompton in London, among others, and it is not unknown for people to travel those sorts of distances to be seen. I have been seen at both Heartlands and the Brompton in the past, and it has been really helpful - obviously, there are unlikely to be any magic answers, if there were easy solutions to your problems you would probably already be on them, but they will take a really good look at you, look at every aspect of your asthma, and investigate things thoroughly, and they will come up with an individual management plan, which will include a treatment protocol for severe exacerbations. Many people have found that this makes all the difference, for example reducing the frequency of emergency admissions or even cutting out ventilations altogether. Your GP can refer you to one of these specialist centres, and you have a right to get this referral, so please persist until they agree to refer you. As someone who has had ventilations and multiple admissions, you MUST be under a respiratory consultant - I am shocked that you are not, as the British Thoracic Society guidelines for the management of asthma make it quite clear that anyone who has ever been ventilated for asthma should be followed up by a respiratory consultant indefinitely.

    A specialist respiratory centre with a consultant with an interest in difficult asthma will typically do a lot more tests to get to the bottom of your asthma, find out how severe it is, and try to determine what factors are causing it or contributing to it. They will have specialist tests available and specialist treatments that more general centres will not have experience of. For example, one of the treatments that many of our members have benefited from is the continuous subcutaneous terbutaline infusion - this is a treatment that is given continuously via a small needle under the skin, usually in the abdomen, and pumped into you by a syringe driver pump, which is about the size of an old fashioned VHS video cassette tape. Obviously, this is an invasive treatment, as there is a needle under your skin all the time, and the pump must be carried around with you constantly; there can also be problems with side effects and things like skin infections. However, some people have found that their condition has been dramatically improved by this treatment.

    Another treatment that may be considered, particularly for allergic asthma, is omalizumab (Xolair). This is a once a month injectible treatment that works by directly binding to and blocking the effects of IgE, which is the main antibody that causes allergic reactions in the body. The treatment is suggested for people who have an IgE level within a certain range - it's unlikely to work if your IgE is low, and is not safe if it's too high - and if you have severe asthma symptoms. There are side effects, but serious side effects are rare. It is expensive - about £1000 a month - so special funding usually has to be applied for from the PCT. It's usually only prescribed by an asthma specialist. It doesn't work for everyone, but again, it can have dramatic effects in some people.

    There are other treatments that can be considered, too, if you see a specialist. In particular, a specialist consultant can write a clear treatment protocol to say what works for you during an acute attack, which can help to make sure that you get the right treatment in a speedy manner when you do have an attack. If you know that a particular treatment is helpful for you, for example IV aminophylline or IV salbutamol, this will be included. This can sometimes be the key to preventing ventilations, and shortening hospital stays.

    One of the other things that a specialist centre will look at is whether there are any other illnesses contributing to your asthma or making it worse. One of the things that can commonly co-exist with asthma is reflux (gastro-oesophageal reflux disease - GORD) - as you probably know, this is when acid from your stomach rises up your oesophagus (gullet). The acid can then spill over in minute quantities into the top of your lungs and irritate them, worsening your asthma. This can particularly be responsible for night-time symptoms. There is a complex interaction between reflux and asthma - not only can reflux make asthma worse, but the medications used for asthma, particularly bronchodilators like salbutamol and theophylline (Uniphyllin) can make reflux worse, as they have a dilating effect on the valve between the stomach and the oesophagus, as well as on the airways. It is possible to have reflux that is affecting your asthma without having the classical symptoms such as heartburn and indigestion - so-called 'silent' reflux. There are tests for reflux, but they are quite invasive and not very nice, so many doctors prefer to try a trial of treatment to see if it helps, rather than put you through the tests. The treatment is tablets from a class called proton pump inhibitors (PPIs) - for example, omeprazole, lansoprazole, esomeprazole. These tablets are usually extremely well tolerated with few side effects. Most doctors would want to try them for at least a couple of months before deciding whether they are having an impact. In some people, they can make a dramatic difference to asthma control; in others, it is a small effect, but combined with other treatments, a useful one. Other measures like not eating a large meal before bed, raising the head of the bed slightly, and avoiding alcohol, caffeine and nicotine can also be helpful, if the tablets aren't completely effective - although they should be, in most people.

    Another thing that a specialist doctor would consider is vocal cord dysfunction (VCD). This is a condition which is quite common, especially in young women, and again it can co-exist with asthma and make the symptoms worse. It's caused by what's called paradoxical movement of the vocal cords, in the voice box at the base of the throat - when breathing in, rather than moving outwards as they should to make the throat nice and open, the cords move inwards and together, obstructing the throat. The symptoms are similar to asthma, and are often difficult to distinguish from asthma, but they may include a feeling of tightness in the throat, rather than in the chest, and a high pitched noise on inspiration (breathing in) rather than the more characteristic expiratory wheeze (on breathing out). Episodes can be precipitated by stress and emotion, as well as irritants such as cigarette smoke, perfume and sprays - of course, all these things can precipitate asthma too. Episodes can be severe, and don't tend to respond to salbutamol very well. Some people with severe VCD have even ended up getting into such severe respiratory distress that they have been ventilated for it. The diagnosis of VCD can be difficult - it is often made by an ENT consultant, who will look at your vocal cords with a small fibre-optic telescope that goes up your nose and down the back of your throat (not as unpleasant as it sounds!). However, often the cords behave normally unless you are actually in an episode, so it can be difficult to say definitively that you do not have VCD. Looking at your records can be of help, particularly looking at blood gases during a severe episode (the blood test from your wrist that looks at blood oxygen and carbon dioxide levels) and looking at the pressures required to inflate your lungs when you are ventilated for your asthma - if the pressures are near normal, this may be more suggestive of VCD, whereas high-ish pressures is suggestive of asthma. Of course, as I said, the two can co-exist, which can make things a little more tricky. The treatment for VCD is quite different from asthma, and involves learning some exercises, usually taught to you by a Speech and Language Therapist - these exercises teach you to consciously control what you are doing with your vocal cords so that you can learn to make them move the right way. Obviously, if you have coexistent asthma, then your asthma treatment would continue as well, but some people find that they are able to reduce their asthma treatment when their VCD is controlled.

    As Kate says, hormone induced asthma is another big factor in some of us girls. I have severe hormone induced asthma, and at one point, before it was diagnosed, was ending up ventilated every month at that time of the month. It is worth keeping a diary of your peak flows and periods (and also any strange foods eaten or other potential triggers) to see if there is a link. If there does seem to be an association - typically people become unwell in the few days before their period - then there are several treatments that can regulate your cycle and stop this from happening. The simplest things are either taking the combined oral contraceptive pill continuously (ie with no pill-free weeks) or having depot progesterone injections every three months, which regulates the cycle in a lot of people. A gynaecologist or reproductive endocrinologist will be able to advise on other options if these don't seem to work.

    Another thing to consider is allergies. Many asthmatics are 'atopic' - ie, they have multiple allergies, and often hayfever and/or eczema as well. Allergies can contribute to asthma in several ways, but one of the most common ways is by causing 'post-nasal drip', where excessive amounts of sticky mucus full of allergens can drip down from the back of the nose and sinuses into the throat and irritate the top of the lungs. This is also a good way to get recurrent infections, as the thick sticky mucus harbours bacteria from the nose and sinuses which is then transferred into the lungs.

    If you have not had them already, it is worth asking for skin prick tests to determine which common allergens you are allergic to. This involves having drops of concentrated allergen placed on your skin, and then tiny scratches made with a needle to allow the allergen to penetrate the skin - a positive result will result in a lovely itchy wheal on your skin! There are also blood tests that can be done for allergies. Common things that are tested for include inhaled allergens like grass pollen, tree pollen, house dust, house dust mite (HDM), mould, feathers, cat and dog dander, and common food allergens, like wheat, milk, eggs, soya, nuts and citrus. Unlike non-brittle asthmatics, it is very common for brittle asthmatics to have at least one food that is contributing to their asthma. Some people have multiple food allergies, and often excluding these foods can make a dramatic difference to your condition - I even know of people who were thought to be brittle asthmatics, but who had that diagnosis revised once they excluded all the foods they were allergic to! If blood tests suggest an allergy, a dietitian can advise you on excluding that food - please don't exclude food groups without discussing with a doctor or dietitian first, as this can put you at risk of deficiency diseases.

    Avoiding the more common allergens such as pollens and HDM can be difficult. There are allergen avoidance strategies you can try, but these are often expensive and inconvenient and there is no good evidence that they work for most people, although some people do find them beneficial. The sort of things that people try are things like trying to reduce the soft furnishings in your house, by changing carpets for laminate flooring, curtains for blinds, fabric sofas for leather sofas, and getting rid of cushions, teddies etc. Old mattresses and bed clothes can be replaced with new ones and then covered with HDM proof covers - available from Boots, John Lewis's and other places. Duvets can be put in a bin bag and put in the freezer for 24 hours, to kill the dust mites, and sheets and so on should be washed at greater than 60 degrees. Surfaces should be damp-dusted (by someone else!) at least every other day, and an efficient vacuum cleaner with a filter on it should be used. Obviously, a lot of this is very difficult, if not impossible, to achieve if you are a student! You don't mention what sort of accommodation you are staying in, but if it is a shared student house, I know these sorts of places are often the worst possible settings for an asthmatic - very old carpets, curtains, etc, damp and mould, antiquated vacuum cleaners that throw out more dust into the air than they suck up, and so on - as well as the problem of getting housemates to be sympathetic and thoughtful about your triggers. It is possible to get overly obsessive and anally retentive about such things, and you have to find a happy medium that works for you - as I said, there is no clear evidence that these strategies are effective for the asthma population as a whole, although considerable anecdotal evidence that they work for some people.

    Of course, there are also specific treatments for allergy. You don't mention whether you are on a regular anti-histamine - common non-drowsy anti-histamines used are ceterizine and loratidine. Steroid nasal sprays can also be very useful for allergy, as can chromoglicate eye drops, if itchy eyes are a problem. Nasal and sinus washout can be really useful to help with rhinitis symptoms (itchy, blocked nose) - they help to clear the blocked feeling, making you a lot more comfortable, and also reduce post-nasal drip and help to prevent the development of sinus infections and thus chest infections. I take it from the fact that you are on carbocisteine (Mucodyne) that chest infections are a problem - so it may be worth considering if they are being triggered by sinus infections. The common symptoms of sinus infection are nasty, thick, green purulent mucus from the nose, fever, and pain and heat over the sinuses in the cheek bones and over the eyes. I used to find that every couple of months I would get a sinus infection that would then spread to a chest infection, which would invariably trigger my asthma. Since I have been doing nasal and sinus washouts, over a year, I have not had sinusitis once. They are quite easy to do at home once you get the hang of them - if you want to know how to do them, there are threads on here which describe how, which we can pull up for you.

    If you are getting recurrent chest infections, which are then triggering your asthma, then there are other avenues of investigation to try to determine whether there is anything underlying contributing to your infections. A simple blood test can be done to look at your immunoglobulin (antibody) levels in your body to see if your immune system is fighting off the infections properly - if you are deficient in immunoglobulins, then you can be given an infusion to replace them. It's also worth asking if you need a CT scan to see if there is anything structural in your chest contributing to your infections - bronchiectasis, which is thickening, scarring and dilation of the small airways, can cause increased frequency of infections by making it difficult for you to clear mucus from your chest. The carbocisteine (Mucodyne) is one treatment to help you to clear mucus, but there are other things that can be useful, like saline nebs, antibiotic nebs, and specialist physiotherapy techniques to help you to clear the mucus.

    I don't very often say this, but if you have brittle asthma and are having sudden onset attacks, you might well benefit from a nebuliser at home. This should only be used under the strict supervision of a doctor, preferably a respiratory consultant, and with very strict guidelines for its use. Certainly initially, in your case, you should probably only be using it in an acute attack whilst you are waiting for the ambulance to arrive, to buy more time and keep you in better shape whilst you are waiting. It should not be used as a substitute for going to hospital - the vast majority of asthmatics, if they are ill enough to require nebs, are ill enough to need to be in hospital. Have you appealed the decision not to fund it? - most PCTs have a special funding committee where they discuss funding things that are not routinely funded. Your GP will have more information on who to write to. It may be worth pointing out to them that if your nebuliser saves you one day in hospital, it will have paid for itself - even if you do not actually intend to use it as a way of avoiding hospital, it is an argument which often sways those in charge of the money! Otherwise, there are various charities which may agree to pay for a neb - I will try to dig out some names. You could also ask your university about Disabled Students Allowance - I am sure someone with more up-to-date knowledge will be able to advise better, but when I was at Uni, this would pay for any extra costs associated with your disability. Failing that, do you have a relative you could prevail upon to buy you a neb? You can get a basic model for about £100, and don't forget to make sure you are not paying VAT. In the mean time, if you are unable to get a neb, make sure that you are using your salbutamol (Ventolin) inhaler with a spacer - 10-15 puffs via spacer is as effective as a neb in all but the most severe attacks.

    Reading your drug list, I am a little concerned by your comment that you are on Pulmicort PRN, and that you have been told you can use it as a reliever. Pulmicort inhaler contains only the steroid budesonide - steroid inhalers have to be used every day, long term, to have any effect, and will have absolutely no relieving effect in an acute attack. Do you perhaps mean Symbicort? This is a combined inhaler which contains budesonide and formoterol, which is a long acting beta agonist, similar to salbutamol (Ventolin) but of a longer duration. This can be used as a reliever as part of the Symbicort SMART programme, but this is generally not felt to be suitable for people with very severe asthma who are likely to be on the maximum possible dose of these drugs at all times anyway. I see that you are already also on the combination inhaler Seretide, which contains the steroid fluticasone and the long acting beta agonist salmeterol. Some people are on more than one steroid, for various reasons, but it is worth clarifying this with your doctor. I am not aware of anyone being on more than one long acting beta agonist, ie salmeterol and formoterol, and would think that this would just put you at increased risk of side effects.

    As you are on long term oral steroids (prednisolone), you need to think about bone protection. Steroids can thin your bones and make you more prone to osteoporosis, which increases your risk of bone fractures. You should have DEXA scans every two to three years whilst you are on pred to measure your bone density. Depending on the results of these, and other factors like your diet, your doctors may recommend that you start taking calcium supplements, and possibly a drug from the class bisphosphonates, such as aledronate or risedronate. These drugs build up your bones and protect them from the effects of the steroids.

    Reading your profile, I see that you are a university student and are also doing three different jobs to fund yourself through Uni. I can sympathise with the financial problems of getting through university - having been a medical student for five years, I am still paying off my university debt seven years later! I am concerned, though, that you are trying to do too much and pushing yourself too hard, and that this may be worsening your asthma. I can relate to this, as I was extremely stubborn as a student, and refused to take time off when I really should have done - I was advised to take a year out and resit several times, and at a couple of points was advised to stop doing medicine altogether, but I refused and insisted that I was going to complete my degree in five years like everyone else. I did - but it was at considerable cost to my health and personal life. If I could do it again, I probably would be more sensible and take more of a balanced view of it. I am not telling you that you should not be doing your jobs as well as your degree - obviously, if you need the money, it is very difficult - but are there other options you could look into? Have you applied for Disability Living Allowance? - not everyone with brittle asthma gets it, but it is worth a shot. Most universities also have hardship funds that you can apply for, which are usually a gift of money with no repayment. Depending on what course you are on, you may be eligible for a Professional Development Loan from your bank, although of course these usually have to be paid back more or less as soon as you finish your degree, and unlike the Student Loan, they are repayable whatever your income. Again, I wonder if there are generous relatives that you can prevail upon for a gift or an interest free loan? - I know it's always difficult to ask, but if family members knew that working was affecting your health, they might be prepared to help out, if they can.

    I am aware that I've given you a lot of information, and it may seem a little overwhelming. You may want to print this off and go through it slowly in your own time, and perhaps discuss some of the issues with your GP. I hope that at least some of it has been helpful. If you have any further questions, please do post or send me a Personal Message and ask. Most of all, please do remember that you are not alone with brittle asthma - there are others who understand exactly what you are going through.

    Lastly, I'm a little bit concerned by your comment that you can tell that you are heading for another attack. If you do feel unwell, please do seek help sooner rather than later. As I am sure you are aware, asthma is potentially fatal, and having had previous ventilations puts you at higher risk of a fatal or near-fatal attack. Please don't take any chances - going in early may not only get you treated faster and save you some time in hospital, it may save you a ventilation or even save your life.

    Take care of yourself, and do let us know how you get on,

    Em H

  • Hi Raychi

    Sorry you are struggling so much at the minute. I really hope things pick up soon for you.

    Just wanted to say that I'm under Rob Niven in Wythenshawe and he's really good so it's definitely worth pushing for a referral to see him. He, as I'm sure all the tertiary centres starts from the beginning and redoes all tests and stuff including bone scans, he's hot on checking for VCD and is always doing some sort of research into asthma that if relevant you can take part in (once more stabilised obviously) which may also help you. I got a home neb from the severe asthma clinic no problems, as soon as he'd decided I needed one, so again if you get referred to him this may make that easier.

    Also, wanted to re-iterate Em H's point that you're not alone. I don't have brittle asthma, but it has still affected my daily life for the past 18 - 24 months, and I still can't work full time or do much at all without getting over tired or aggravating the old lungs, part of this is due to an abnormal breathing pattern which Rob has picked up and I'm having physio for - as I waste lots of energy breathing even when asleep (just wish it counted as exercise and made me slim!). So again - please do what you can to not over tire yourself as that won't help.

    Anyway I'll stop waffling and wish you luck

  • :D thanks for all the lovely replies ive been chatting to some inspirational people through me introducing myself thank you all so much.

    I understand things so much better now and most importantly i dont feel alone at all now which is great. I have seen my GP and a referral is going to Rob Niven in Wythenshawe so crossing my fingers when that all comes through.

    Currently i am writing this back in hospital admission number 12 since feb! i did come in last night but was advised to go home and come back in the morning as there was no beds and not enough staff to look after me. The NHS is mad sometimes!

    Hope everyone is well

    take care

    Raychi xxxx

  • Raychi, sorry to hear you are back in, well done on getting the GP to refer you it sounds like you seriously need some help. A big huge Whaaaaaaaaaaaat to the hospital for sending you home, are they stark staring mad! I am aghast that they sent someone who has had 5 intubations in as many months home they should be shot!

    I hope you are feeling better soon.



  • Oh my goodness you are having a rough time. I cnat believe you were told to go home and come back the next day especially wiht your history of intubations etc.


  • Hello Raychi!

    Sorry to hear your back in - that hospital is totally Bonkers!!

    They are obviously not communicating. I am glad you have got a refferal to a good hospital!

    Take care




  • Hi Raychi,

    Just wanted to say hi, and hope you are feeling better.

    I'm also classed as a brittle asthmatic, diagnosed as such at the age of 26..having been a normal but relatively badly controlled asthma sufferer since i was younger. Like EmH - I'm a junior doctor. I worked for most of my first year after graduating pretty successfully, despite many ITU admissions but have been unable to work since last September. I've only spent a total of 10 weeks at home during this 11 month time period, and my last admission being 13 weeks.... so can relate to your frustration. However.. a lot of this time was due to various complications as well as my asthma itself. As i type though, I can report some satisfying progress - now being on my lowest dose of prednisolone in almost 2 years (7.5mg now instead of anywhere up to 60mg orally or even on methylprednisolone iv at home at one point!) and have got off continuous subcut terbutaline - hoping to only keep it in reserve for any bad patches in the future..

    I'm still very run down, after what has been an extremely tough couple of years with many ITU admissions...but, for now - it does feel like progress has been made, and that I have a chance of getting my life back on track and hopefully back to work at somepoint in the future.

    So,I guess what I'm trying to say -in a very waffly tired way (before I'm retiring back to bed for some more Zzzzzz's!) is - please do not give up hope... please persist.. there are many things that can be tried...

    Brittle asthma doesn't have to ruin your life.. it may change it somewhat..but not all of the ways in which does this are bad.

    Over the many months i've spent in a hospital bed in the past year, I've had much time to think about my life, who in it is important to me, and my career choice. I've been able to realise that I spent 6 years studying the right career, and that I love my job, but that I should work-to-live... not live-to-work!

    I've also had the honour of seeing who my true friends are, and getting the most amazing level of support from those people - despite the fact I was in no-way the funnest person to be around.

    Time to reflect on matters like that, and to enable you to focus-in on the important things in life is a luxury that not many people in today's hectic world get.

    That may all sound rather fluffy and tree-huggy to people who don't know me - but, for me - a rather non-fluffy, down-to-earth, non tree-huggy person - who used to be a bit of a work-a-holic - it's been quite a revolutionary change in my way of thinking...and I was never allowed to become that hypoxic!! :o)

    Anyway... i'll toddle off now, and go and enjoy my freedom some more! The simple pleasures of being at home (sleeping in a double bed, having breakfast when I want, drinking NICE tea...)

    Please don't hesitate to get in touch..


  • hey everyone!

    Hope everyone is ok???

    would just like to thank everyone for their lovely messages and to the most amazing people who have messaged me aswell, which has cheered me up loads!!

    currently im doing ok....still not brilliant but definetly ok for the moment. One good thing tho after my recent vent admission i have a nebuliser coming this week finally so hopefully it will help :)

    thanks Raychi xxxxxxxxxxxxxxx

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