Brittle Asthma


I have Type 2 brittle asthma and when I had no help I was in hospital 14 times in a year. Now I have help with kids and housework I only on average go in once a year but 8 times out of 10 end up in ITU being ventilated. Last year was the first year in 10 years I didn't go in but the year before I was ventilated twice in 6 months , which was a big deal. Previously I have been admitted thought I was ok and said goodbye to my husband and within a hour stopped breathing and just remember staff running by my trolley to take me to itu, other times I've managed to stay at home and then by the time I go in ,im being ventilated in A and E. Yet other times I have remained stable for weeks gone in just so I get better and come out a week later . So my asthma changes a lot !

Then this year my fantastic best consultant anyone could have retired. The reason was he was the best he listened to me , knew what works and stuck to it even when other doctors argued, also had a argument with a itu doctor in front of me cause Itu wanted to change things. He also was the only NHS consultant that if he was too busy to see me in clinic would vist me at home.

Anyway he went and they replaced him with a Greek doctor who had never worked for NHS or Uk before . Also a respiratory nurse who had never done the job before as my nurse when when the consultant retired. So I met them and wasn't impresses as he decided to put me on drugs that I already know dont work.

Then I got ill in April and the first week I just took my steroids and carried on getting up ,2nd week doctors ,antibiotics and stayed upstairs ,3rd week I was struggling to walk and talk so went in. The admission was fine I felt like I needed to be there stayed in and got better. But I went to see the consultant a few weeks later and he replied I shouldn't have been admitted he feels all asthmatics should be able to be treated at home!!!!!!!!!

I was so upset and angry I was speechless and said nothing.

My asthma is unusual as I always keep my sats until I need to be on ITU , My pulse rockets to 120 and above to 200 before , My reps go to 40 that is what they need to look for but many times I have been into A and E and they have said my sats are ok so I can go home wven if Im not shifting much air. So I have gone home many a times within 24/45 hours I have come back and gone to ITU. So my consultant stopped all that and wrote a letter saying I only go if I have to !

Then other times I have been admitted and come from ITU to a ward and I have a heart monitor, oxygen, and a drip in each arm and a catheter so I can't move much. So I have asked a HCA to get me a kidney dish and some water to clean my teeth and she replied Im looking after the sick people first.

Ive also had old ladies ie patients telling me I'm wasting a bed and I'm fine and shouldn't be in hospital because I never look ill.

So I only go into hospital if I really have to because Im only 40 ,Im always the youngest there.

Ok enough about my history ,here is the problem now.

I have got asthma now , Im struggling but I am shifting air at the moment. Im breathless and on every drug I can be at home, ie nebuliser every 2 hours , 80 steroids, aminophilline tablets, montilucast tablets, The doctors don't want me at home because its their responsibility and I can go down so quick, My consultant isn't helpful and i'm possibly not ill enough for A and E yet . So I end up keep going until my body gives up.

Any advice ?

7 Replies

  • Morning

    I don't know anything about your condition but I do know what it's like to have a lung condition. First thing demand another consultant which is your right, ignore the other patients what do they know and complain or get someone else to, I had a locum consultant who didn't even look up at me I've refused to see him. You've had a really rough time you don't have to put up with ignorant doctors and nurses I'm sure the BLF helpline would be able to advise you.

    I really hope you get things sorted.

    Kim xxx

  • Hi Susie nice to meet you and welcome to the site. I too have asthma though fortunately not the brittle type like you and though I have some understanding of it can't really imagine what you have to go through with yours. I know brittle asthma is notoriously difficult to deal with and treat but surely there are meds available to make yours more stable and managable.

    I completely agree with Kimmy though, you don't have to put up with treatment like this. Is it possible to see another consultant? Do your doctors take you seriously? I don't know if you are already on asthma sites but if not try and find a good recognised one like Health Unlocked or NHS one. I belong to one (can't remember the name offhand) and find them really good in terms of information and help. I do remember reading that there are too many asthma deaths in this country as it is not taken seriously enough by the medical profession and with the right treatment a lot of these could be avoided. I think it is a scandal!

    I do agree with ringing the BLF helpline too. They are open Monday to Friday. Let us know how you get on please and meantime take care. xx

  • Ps if other patients have a go at you ask them what is more serious than not being able to breathe and how would they like it? x

  • Hi Susie, I too have asthma, just ordinary asthma and that is bad enough. I too have had poor experience with a consultant. The 1st time I thoiught he was having an off day. My normally strong daughter was in tears at the way he treated & spoke to me. 2nd time he was the same if not worse. From then on I absolutely refused to see him and saw one of his registrars who ordered a scan immediately and was absolutely lovely and helped me enormously.

    You absolutely dont have to see that person or any doctor you dont like any more. They work for us. The NHS is for us. How dare they treat you like that.

    Please do as suggested and ring the BLF helpline for some guidance on what to do next and how to do it.

    I wish you strength to carry on to get your treatment sorted out. Sincerely, Peeg

  • Hi Susie

    Sorry to hear you are having such a bad time. ring the out of hours GP or your own for a home visit and get them to make a decision about whether you should be admitted. If you do not feel confident enough and are not coping then i think you should go in unless the doctor wants to visit you every day!

    Next time you see your consultant ask about Xolair injections maybe they would help. Take care of your self.

    Best wishes Irene

  • sorry about your bad experiences in my area they are also trying to cut admissions too hosiptal but they have put in place the adult community nursing service which is affilated with the local respiratory team u are given a folder with all your history and i only need to phone them and they come in each day during excabations maybe worth asking your doctor if you have this service in your area

    regards liz

  • I would get another consultant and I would report that nurse to an ethics committee

    If you have the energy approach a school of nursing who would love you to address a class of student nurses on your experience

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