Brittle asthma

Hi I'm Dannii I'm 34 live in Wales I've had asthma since a very young age and until 2 years ago it was perfectly controlled I suffered with the odd chest infection but managed it perfectly well with just 2 pumps. 

In October 2014 I was admitted to hopsital and was diagnosed with double phenomena I was in high dependency for a while then moved into the ward for 3 weeks since then I've been admitted to hospital almost every month and stay for a total of between 2-4 weeks at a time. (At one point I was expecting them to start charging me rent) 

My asthma is not controlled at all now, I am on almost every medication going I take 24 tablets a day along with morphine for pain I'm on 50mg of prednisone and have 4 pumps,  I have 2 nebuliser at home one next to the bed and one in the living room and one that I can take with me in the car. I had a sleep apnea test done in September but still waiting for the ressults! My consultant keeps cancelling the appointments I'm now booked in for October!!!! I see the asthma nurse at the hospital every month . 

Every day is a struggle I am in constant pain in the back I get breathless when talking and now I'm house bound as I cannot manage to stand for long or walk further than a few steps without requiring my nebs 

I have been told I have brittle asthma I am so down and depressed and haven't been able to work in over a year and half. Due to the steroids I now have glycoma and have to wear glasses all the time I've put on so much weight It's just a vicious circle. I feel like giving up most days the pain is unbearable and the doctors think I have fibromyalgia on top of everything else.

I feel like no one truly understands how hard it is to fight for every breath my partner has been amazing and without him I would have given up a long time ago 

Has anyone here had a similar experience I'm thinking about asking to be reffered to a new consultant as mine doesn't seem that fussed on helping me. 

23 Replies

  • Hi Dani,

    I m so sorry that you re suffering so much with your asthma. It does not seem right to me that your next appointment is only in October. With much less symptoms, i was referred to a hot clinic in December and had a follow up appointment around 4 months later. Do ask for a sooner appointment and yes maybe for a new consultant. 

    I hope you get better soon.

  • Thank u lovely I thought I was being a bit too demanding 

    Hope ur on the mend soon xxx

  • I'm still on a Grasby pump! but I'm having trouble getting a new one the one I have now is on lone from somewhere? But the hospital will not buy me a new one! I've been on it for so long I can't be without it, before I'm in trouble! I use Brycanyl, in allergic to Ventolin! Can I ask who's paying for your new pump?

  • May need to contact your community matron, if you have one allocated.  grasebys are discontinued now (too easy to tweak!!) so it would be a McKinley T34 or similar pump that are now used in the community.  or a Chrono, which are a bit more expensive and have bespoke syringes!       My comm matron is looking at getting me a McKinley as we are not sure the Grasebys are being serviced... I have two, one given to me by the community health as a back up... spare... 

  • Hi Danni sorry you have had such a hard time, side effects and one thing leading to another..I'm going through hard times too lungwise and everyone is being so kind here. 

    You have to be polite but insistant to get an early appointment like say you accept a change of hospital. 

    Ask the Asthma UK helpline they will give you good advice on how to handle the system etc

    Take care xx

  • Thank u lovely hope ur on the mend soon enough cxx

  • Thanks Danni xx

  • Poor you agree it is a vicious circle, one I've been in. It's hard to get out of bed some days when you feel so crap. The dude effects of the drugs that let you breath ( sort of) are as bad if not worse than the asthma. 

    Hang in there it will get better. I agree phone the Asthma UK helpline. If you are seeing the hospital asthma nurse ask her to bring consultant appointment forward. Also ask her to chase sleep results. Mine haven't shown apnoea but a different problem so on another journey.

    Hang in there and remember this forum will help

  • Thank you lovely I've asked her to chase it and she sys she can't I feel completely alone my partner is starting to really loose his temper now as we both feel were being palmed off with excuses 

    Hopefully my appointment on Wednesday will go ok I'll update you all then xxx

  • Hi Hun

    I was just like you! 

    Can I ask are you predisolone constantly, what dosage are you on? Also how long have you been on it? The reason  I ask is are you coming off it to quick or is the dosage not high enough. I am on a constant 25mg a day when my asthma is bad it goes up to 80/90mg a day. YouAlso are you taking for your bones?

    The reason I ask is because a year and half ago I fell down three of our stairs and broke both my feet. I was then diagnosed with osteoporosis, I had taken a drug to prevent me from getting it for at least 25 yrs! I had a bone scan and they did blood test, they discovered that I have advanced osteoporosis in my back and neck are horrendous, it explained the back pain I always seemed to have which I was always told that it was because I struggle to breath which makes your body take all the strain. But they also discovered that I have vertically no vitamin'D' because of that, the drug I had been taking for my bones will not work. My back apparently according to my Consultant looks like a 70/80 yr old ladies! I'm in contact pain.

    I also have Brittle asthma. I used to spend weeks and weeks in hospital, at the same time trying very hard to bring up four sons. I was put on continues infusion of a drug called Terburline. It changed my life! I still couldn't do everything I wanted as, I can get breathless very quickly! But it was discovered that most of my asthma attacks and constant admissions to ICU from me actually stopping breathing! Was down to me being allergic to Ventolin. This all started over 40 years ago. I have been on my infusion for well over 30 year, My son are now in there 30's and I have have two grandchildren who I adore.

    What I'm trying to say if your not happy with your life, you consultant, medication etc. You can and I know because I' ve done it, change your Consultant to someone who understands your asthma better. There will be someone not to far away from you who will be able to sort your medication out. You say your on 2 pumps what is thevdrug in them? Are you on them only when your admitted or all the time?

    I also want to ask what do you do during the day? I'm not aload to work because my asthma is brittle and unpredictable. I used to be depressed, miserable hated living my life, I felt isolated! But oneday I decided to try and make cards, I love it I sell them for Asthma UK, maybe you could take up a craft. Also I now go swimming in our local pool that has a disabled swimming session because I can only go without my pump for about an hour total max. So I swim for about 20 mins gently. I've met loads of people at these classes, we have a coffee afterwards and now have some friends who understood how I felt. Please look on the internet for disabled swim classes or clubs. I've just started a craft club along with a disabled friend and someone who has no health problems, these have helped me considerably. Maybe have a coffee morning to raise money for Asthma UK, I haven't done in a while but I advertised at my GP sergury and hospital. Ive got to know a lot of people, we chat on Facebook or the phone. It sounds a big thing organise it isn't, your get to know people who have simaler problems to yourself. If I lived near you ID invite you for coffee but I'm miles away.

    But want to say I would love to chat to you on the phone. Please don't feel sad, negative, there's help out there look and your find it. Believe me if I hadn't started making cards( plus I now do loads of different crafts now). Have the coffee mornings to raise money for Asthma uk. I've met so many people some I've helped spur on that help is out there you need to find it, it won't find you. Thinking of you would give you my FB page but can't trust it on here. You take care chin up you can do this your gonna be  OK! 💖💖💖💖💖💖

    P.S look on you tube I'm on there talking about my pump, plus there is others on there. Might be worth a look.

  • Hey moon bear 😊 

    Thank you for your reply, ok where to start lol umm in on a daily dose of 45 mg of pred and on very bad days I will go up to 80 and taper off slowly back to 45. 

    I take acid tablets for my bones once a week and a calcium tablet once daily I've been on this pred dose for 17 months now. 

    i monitor my stats myself and honestly just walking to the downstairs toilet less than 6 steps my oxygen drops immediately to around 75 I've told the nurse and the doctors and no one seems to want to listen to me 

    They all go on about my weight but I'm trying to loose it I've joined WW online and it's slowly coming off but it's hard when I'm in such a high dose of pred I can't move much without risking a attack or passing out, they are so rude to me at clinic and it's not helping my depression and anxiety 

    I got engaged 2 months ago and can't celebrate with family or friends cause I'm just too bad. 

    I haven't been able to work in 17 months and they are now trying to sack me its all very stressful and is putting a strain on me and my loved ones 

    It's such a struggle isn't it to battle to just breathe 

    How are u now? Omg I can't believe all that you have been through so u mind me asking how old u are and how long u have had asthma? 

    How do u cope with being so restricted in what you can do and how do u stay positive xxxx

  • Hi

    I'm 54 this year, had asthma since I gave up dancing as a professional in 1978! I'm sure it happened because I no longer controlled my breathing like I used to! I have lost weight a lot, I was in a size 24 clothing 1 & half years go. I'm now a size 16 and it's still dropping. I never joined WW or slimming world as I knew they wouldn't accept me with out a letter from on consultant or GP. My husband joined me as well. But how we've lost weigh is we've changed the way we eat. We eat loads of fruit and veg, grill most meats, I learnt that if I drank some water when I wanted a snack it took the craving away. We eat breakfast, light lunch and a proper evening meal. You must have think about what your eating, I was terrible  at eating chocolate, but now I cant stand it, it makes e feel sick. Another important thing you need to do is do something try a little swimming, if don't like swimming, just floating in the water is so relaxing. I go I just relax in the water.might swim a little bit. But gets me out. You need to get out and do something, it would help I know because I've been there. Diet want to live just fade away. Try arranging a coffee morning, use it to raise money for Asthma UK get in touch with them I've met many people who are no where near as bad as me but I love doing them.

    Right as far as your breathing is concerned have you tried to slow your breathing down yourself? Because I've taught myself and many many people this technic, my doctors don't like me using it because I do it to Welland during a bad attack I don't look as bad as I look! But it works and even the nurses on the chest unit I attended it! 

    what you do is you imagine a Beautiful sunny day, and you sat watching this beautiful sea, so calm and the beach is a pebble beach, so now you wtch the sea, whilst your enjoying the wonderful sunshine. Now as the sea comes up the pebbled Beach slow and calm you breath in, then as it slowly goe's out you breath out slowly, then repeat it over and over again. I know this works and has help a lot of people from being given drugs they dot need. What have got to lose. Give it a go then tell me how to get on

    Thinking of you, chill I the sun💐💐💖💖💐💐

  • I have no idea how I suddenly changed! I think one day I sat and thought, I had you asthma, you done so much damaged to my life, I fighting you now, I'm in charge, I'm fed up of sitting her fat not doing anything. I'm getting as much of my life back as I can. 

    No I haven't managed to everything I wanted to do, I live everyday differently. Yes today's a goodday. Who knows what tomorrow will bring. I might land up in ICU tomorrow, because that's just what my asthma doe's, I can wake up fine but by the evening I could be fighting for my life. I'm no longer negative I fight everytime, I'm stubborn now. I've only told you a tiny amount of what's wrong with me because I don't like it, it upsets me. But I'm alive I'm here, enjoying as much of life I have. I force myself to do as much as I can. 

    Always here to talk to you when ever you want make sure you write my name moonbear and I'll know it's you. 

  • Forgot to say put that oxomitor away stop using it! It will make you think of how bad you are all the time! I had one gave it back even though I have to use oxygen at home from time to time! 

  • It too use s/c pump, used to use Bricanyl but use Ventolin instead as less volume going in to sites... I am still using a Graseby but hope to change to a McKinley infusion pump.  I  helps keep me out of hospital but due to lack of care / home help care at the mo I am struggling, I can increase my pump when needed and also stop and start it too....   Good to hear it has helped you x

  • Thanks for that. The hospital in Oxford have said they won't buy one.

    Might even need to buy one myself! Bloody rediculous😞

  • That is not good, try GP or community matrons / district nurses!   

  • I live in West Wales and we have only one consultant for 3 counties!  Our consultant does a morning a week in our General Hospital and there is a lot of resistance to us asking to go to the next hospital up the line - about 50 miles away, where the consultant is based.  We have about 5 vacancies in the Respiratory Dept which have been empty for the last few years.  We now have another Doc who has come out of retirement for the second time to do some clinics part time to help.  So you can imagine it take a long, long time to get a consultant's appointment!  Still you have to be insistent on getting a quicker appointment.  A lot of us here go private for a first consultation as other wise we could wait up to a year easily.

    Good Luck.


  • You are within you rights to ask to see a different consultant! I've recently done this after the one who changed my life retired! The one they gave was a professor, awful guy hated going to see him I knew more about asthma than him! I'm not joking you can go anywhere in the country! Don't take no for answer keep bugging them! They have no right to refuse your request! 

  • Here in Wales we have a devolved NHS and if there is a specialist for your complaint in your area then we cannot go elsewhere.  The patients in our BLF Breathe Easy Group have all asked to be able to go to the next hospital up the line - which is still within our area but it would be the same consultant we would see as that is the hospital where he is based.  He is a very overworked person as you can imagine travelling around three counties to clinics and doing his own in the hospital he is based in.  The annoyance is that even though we all say we are willing to travel to another clinic he is at it isn't really going to make a difference as there is him and the other semi retired consultant they just can't get to see everyone wherever they are.  The clinic nurse also has to cover 2 counties I believe as well.  I just hope they get the vacancies filled soon.  

  • DrGovind you really shouldn't leave your email address unprotected like that. At the very least put some gaps in it and write @ in full

  • I am sorry to hear about your bad asthma, I wonder...have you ever tried to go to a hot country for a while/ maybe Spain or Turkey..stay by the sea in a rented house and see if is of any benefit to your lungs? you are taking a lot of medication and I think that makes too dependant and it weakens your immunity and lungs. Also watch you diet, do you eat enough fruits and vegetables? have you tried to drink a glass of simply purified warm water every morning before breakfast? try it!!! hope 

    you get better! 

  • Danniibear81 is yours a genetic condition?

    have you looked into the effect of diet upon asthma?  What you eat really does make a difference, as I found out when I cured my crippling arthritis with diet.  Many foods in the modern diet can have a very inflammatory effect and aggravate your condition.  The diet I would recommend would be a vegetarian one simply because it is what cured me, after I found out I was allergic to meat.  But, although some diets associate asthma with the inflammatory properties of red meat, that might be a step too far with others in the family to consider so what about something like the LCHF diet that loads of people are reporting resolved their asthma issues?  (obviously, if we are looking at genetics, this might not work but who's to know until you try?)

    Have you tried lemon, ginger or LOCAL honey?  A drink made from these and taken 3 to 4 times a day may well help relieve at least some of your problems.  They all work to relieve inflammation.

    In light of your osteoporosis have you come across Kefir?  Studies have shown that kefir can not only stop but also reverse bone depletion.  Studies have also shown that it can have anti-inflammatory and anti-allergic effects on asthma.

    Again on osteoporosis, not much good in your current condition but will be once you are back on your feet, have you looked into rebounding?  It is a whole body exercise done on a small trampoline that not only benefits your muscles but stimulates your lymphatic system into cleaning out all the toxins built up by daily living AND helps rebuild bone mass.

    Something else you might like to look into is Hydrogen Peroxide.  HP is water plus and extra oxygen molecule (H2O2).  At high strength it is very caustic so has earnt a bad reputation through misuse but at low dilution, in a nebuliser or inhaler, it can have very positive effect.  Always use pre-diluted food quality (full strength is 35%) never use at a strength higher than 10% nor consume anything higher than 3% - but I'm not actually talking about you consuming it, just breathing in the extra oxygen.

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