Endless hospital admissions & no proper support :(

I was diagnosed with Adult Onset Asthma last year. This year has resulted in no fewer than 4x admissions in six months. The second one being via resus and then onto HDU & another ward then home.

i get referred to an asthma clinic each time and every time I get discharged until the next time I end up in.

is it normal for your chest to be clear on x ray with asthma flare ups. This usually happens which to me confirms asthma yet I interpret the doctors as thinking I'm some sort of hypochondriac. I'm really not. I'm the kind of person who avoids the GPs like the plague so if i end up willingly walking into a n e I'm feeling pretty rubbish.

basically, on admissions, my sats are usually okay, they did suddenly but soon recover, my bp is usually through the roof and so is my respiratory rate.

yesterday I was rushed in via 999 as I was really struggling and the nebs were giving me no relief. So switched to oxygen. Doc came to see me. Said it was a viral infection. Ordered bloods xray steroids and antibiotics.

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  • sorry. First time using this forum so might be a bit scatty. Anyway. So the doc leaves and everything is set in motion. Go for xray. Clear as expected. Nurse comes to do my bloods and cant get them after one try so says she will leave it and get doctor to do it. The doctor never materialises again. Another doctor comes up a couple of hours later whilst I'm still on back to back nebs. "good news. Your x ray is clear so you can go home".

    I have been awake all night again ladt night as I cant stop coughing and am still wheezy and breathless. They told me to go back down but I'm scared to in case I get fobbed off again. Steroids usually help but they didn't even send me home with those yesterday. 😐

  • I feel for you. I don't think that the general doctors get it or read your notes properly enough. You clearly are uncontrolled. My thoughts this time would be ring the asthma consultant, make a real nuisance of yourself until you get an early appointment and ask not to be discharged from the specialist until you have not been admitted or to A&E in 6 months. I often think it depends where you live. You clearly need the support of an expert or this will keep happening. Good luck.

  • Thanks for your advice everyone. I ended up down the UCC that afternoon needing a nebuliser and steroids. Then down A&E on the Monday. The A&E Doctor rang the respiratory ward and they wouldn't accept me because my chest x ray was clear. A community nurse came out to visit me at home Monday afternoon, said I was still very wheezy and if my peak flow dropped anymore to ring an ambulance as they're the only ones that carry a nebuliser with them. Another community nurse came out to visit me on the Tuesday, took one look at me, rang ahead to the ward to tell them she was admitting me and then rang an ambulance so I could have some nebuliser treatments whilst waiting. I told the nurse (2 of them came to see me) that they're convinced it's just anxiety based, the male nurse took one look at me and said "that wheeze is not anxiety".

    I ended up spending another 3 nights in hospital, the first on the resp ward and then another two on another ward where there was just simply a bed available.

    It is getting ever so dangerous to be a patient at the moment, one ladt next to me was bedridden and on oxygen, they still sent her home at 9pm because she had carers waiting for her at home! Another was only kept because their mum kept nagging at the doctors to do something, a routine obs check sent them all into a panic when it turned out they had pneumonia & sepsis! When they asked why they'd missed it a nurse said "I'm not sure. Maybe it's because you looked okay". 😣

    I'm still not right, I'm getting the most horrendous chest pains but keep being told this is normal and down to the coughing.

    to wzhoever asked about the asthma clinic, basically, they refer you to an asthma clinic and then you see someone in that asthma clinic, I've been referred twice, only ever seen an asthma nurse and always been discharged afterwards. On my discharge notes, the doctor wrote, Primary diagnosis "Infective exarcebation of Asthma", secondary diagnosis "Anxiety". I am putting a complaint in this time around as it is getting ridiculous.

  • Sorry to hear you are having such problems. Yes your chest x-ray can be clear but still experiencing problems. A chest x-ray simply confirms whether there is infection in the lungs, it cannot diagnose what is happening in the actual airways such as the narrowing of passages that asthmatics get.

    Asthma is such a difficult condition and so many clinicians don't actually know much about it. if you are still experiencing such symptoms you really do need to go back and ask for help. Make a nuisance of yourself, explain your history if you can or ask someone to go with you who can.

    When you say you were referred to the asthma clinic what exactly do you mean? Have you seen a respiratory specialist?

  • First of all the health professionals are learning more and more about asthma each day and ignorance in this department is still a real problem. I had exactly the same problem which is why I ended up so poorly afterwards. I was a mild asthmatic when I was younger and it wasn't until I was on holiday in America when I was 19 that it all kicked off. There was a street fire and within minutes I had collapsed. I don't remember anything until I woke up in intensive care with a tube down my throat. The doctors in USA could not believe that I was only on a blue inhaler back in England.

    Like you I had the same problem. I was in and out of hospital for the same reasons. Some doctors knew what they were doing, others treated me like a liar, a faker and a hypercondriach. All because sometimes my SATS were fine, I rarely had a chest infection and I wasn't showing the 'typical signs' of an asthmatic patient. All I knew was that I felt like I was drowning in my own body. And this is where they are going wrong - asthma is a very wide and varied condition and each case is unique. But this type of judgement sticks with you forever....it's affected my confidence massively to the point where I never seek help when I need it. I feel as if I'm making a fuss about nothing and others will judge me the same way the doctors did. I still have it now even though I have finally been diagnosed!

    So I was finally diagnosed by a doctor in London after my second intubation. I have Type 1 Atopic Brittle Asthma. She, like the American doctors, was baffled as to why I was not receiving any help at all despite my length and frequent hospital admissions. I have been in ITU no less than ten times and intubated twice.

    When she finally did all of the relevant tests she was gob smacked...said I was one of the worst cases she had ever come across in someone of my age. Turned out that I have highly allergic asthma and my IGE levels were through the roof. She put me onto a drug called xolair which stops the body from having the allergic reaction which in turn stops the lungs from thinking it's under attack. She has 8 patients In London on the same drug and I am the only one on the maximum dosage. She also got all my medications sorted. I'm now on:

    Phylacontin (theophylline) 450mg

    Fostair inhaler

    Ipitropium inhaler

    Spiriva respimat

    Ventolin

    Montelukast 10mg

    Prednisolone (usually 45mg)

    3 different types of anti-hystomene

    Nebulisers

    Since this my asthma is a lot more under control compared to what it was back then. I still have admissions, ironically I only came out of ITU yesterday from another recent one, but they are far less then they were. 'My daytime symptoms are gone and I can live a relatively normally life. Still have to avoid triggers though but unfortunately some are impossible to avoid. I ended up really ill this time round because I came off the train and there were a bunch of youths smoking dope on the platform so this set me off big time. First bad attack I've had in a few months though so I'm not complaining.

    My advice to you is this. Although it's hard not to take what the doctors say or what they may think to heart, you have to remember that you know your condition better than they do. They are simply interpreting what they have read in a book on asthma and as I said earlier they are finding out new things about the condition every day. It was this type of ignorance amongst the health professions that make organisations like 'asthma uk' livid because most asthma deaths can be prevented. But the truth of the matter is that they never took it seriously enough and it's only been in the last few years that they have been forced to take it seriously due to pressure from asthma organisations. In truth I think if all of those doctors who basically accused me of faking symptoms had won then I'd be dead now. If it wasn't for my consultant who took the time to care and invest in my case I wouldn't be here now. I would have either been too scared to go to the doctors or to hospital in fear of judgment or I would have died due to medical neglect. You have to take control of your own condition and I know in my case that my consultant is learning from me every day and I'm hoping I can be a platform for other health professionals to go by.

    My doctors and local hospitals know now that a sats reading probe means nothing on me, neither does the chest x ray or the peak flow. If they hear wheeze or if they don't hear anything and have a silent chest they know how to treat me - pretty much with every drug they have going! Most doctors should know by now that every case is different and they cannot afford to make the same mistakes so many doctors did before them. Ignorance is a horrible thing when it comes to asthma, and I can assure you that I know better than most how it feels.

    Stay strong and know inside yourself that you are right. It is no one else's problem but theirs if they think otherwise.

    If you ever want to talk, I'm here. I wish that I'd found this site sooner as I have struggled for a long time with my condition completely on my own. Help and support is here for you whenever :)

  • Very well said. I agree that doctors dont take asthma patients serious enough. I hate when i feel wheezy low peak flow short of bresth , go to gp they say yr sats are fine 94%. I am thinking look at me i kniw when i am not well. Doctors need to be reading and learning frompeople on this site. We need listened too and given proper help.

  • Hi this sounds so much like me and am very scared I'm going to end up dead as won't go to hospital when needed cos of the way I get treated in hospital. Am not typical asthma and doctors get so frustrated they can't fix me like other asthma patients if only they listened things would be so much easier am going to ask my consultant to refer me some where else who spesilise in brittle asthma as I fear I will be dead one day and am only 34 to young to die. I just wish I had some one who understands me and my condition it get so upsetting am new to this and just been reading some stories and am not alone I thought I was an Alina x

  • Hi this sounds so much like me and am very scared I'm going to end up dead as won't go to hospital when needed cos of the way I get treated in hospital. Am not typical asthma and doctors get so frustrated they can't fix me like other asthma patients if only they listened things would be so much easier am going to ask my consultant to refer me some where else who spesilise in brittle asthma as I fear I will be dead one day and am only 34 to young to die. I just wish I had some one who understands me and my condition it get so upsetting am new to this and just been reading some stories and am not alone I thought I was an alian x

  • I was passed from so many consultants before I was finally helped. It took 3 years, two intubations and 5 ITU admissions before my consultant in London spotted me and wanted to help. I am only 23 and was 19 at the time. I am a rarity in the Asthma world as only 3% of people suffer from Type 1 Brittle asthma so you can understand why so few doctors know enough about the condition to help. I am under Heartlands Hospital in Birmingham and Royal Brompton in London that have the best Brittle asthma units in the U.K. I'd ask to be referred to one of these two. Until my consultant in London took me under her wing I thought the same as you, but I promise you there is light at the end of the tunnel. It may take time but you need to get your voice heard! It's your life and you need to take control of it. Don't stop putting up a fuss until you get what you want and need. That's what happened to me. Help will come, you just need to keep persisting. Always here for a chat :)

  • Am in Scotland and was going to ask to be referred to heartlands it's so annoying I have no mental illness yet as am such a difficult case instead of helping me they just try and diagnose me with some thing that's not there. I do feel like there is no light at end of the tunnel my family and friends are so worried as am I. I take nebs antihistamine uniphylline singulair flixotide intal xolair iv had many hospital addmitons but they just stress me out in the hospital with the way they treat me my consultian is really good but am afraid every time he tryes something to help which usaly dose other people tell him no you can't do that so he is put in a position to he had been really good with me. I had mentile health assessment done and they say there is nothing and I cope with my illness very well am fed up doing this to prove a point to other memebers of staff in the hospital the still don't listen I hope to see my consultian end of this month start of next to see what he's saying iv lived with this since I was 4 I know my body and what works why do we get treated bad just cos we are unique I really feel am at a loss and I really can't believe there are others like me the hospital I go to made me feel it's only me my consultian also said am one in 5% whom suffer as bad as I do I wish there was a tablet we could take and it would all stop no more struggling to breath now that's what I've wished for since I was a kid x

  • Everyone is different. It sounds like lots of us have had that experience of being fobbed off, either at A&E where they think you're fine because your o2 sats are fine and they can't hear a wheeze or they think you're hyperventilating when you're clearly actually really in a mess.

    I'm having a long exacerbation since 10th October. Been stuck on pred ever since. 2 admissions for 3 days and 5 days, and ironically missed my consultant appointment while I was in hospital! Then sent to the back of the queue to wait until 15th December!

    I have been making a nuisance of myself ringing up, my GP has faxed and now finally been offered a cancellation next week plus a mention in a meeting with the consultant tomorrow. I am struggling on at home, with no prospect of reducing steroids..the side effects of them being shortness of breath!!!! So told to take 5 puffs of blue inhaler every 4 hrs...needing it more often than that...hope I make it to the appointment without going back in!

    I don't have it as bad as some of those on here, but we all know our own asthma best and we need to fight to ensure we make the professionals understand that we are not making a fuss or faking. We just want our lives back!!!!

    Best of luck. Keep battling. X

  • thankyou jenhcat. There's one asthma nurse who constantly dismisses me as someone who's hyperventilating it drives me up the wall.

    weeks later and I'm still not well. Sat resting watching telly and I start wheezing to the point where you can hear yourself. Coughing. Bringing stuff up. Tiredness and pain in the right side of my chest and back pain.

    I will relent and try and get in with my GP tomorrow

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