Type 2 Brittle asthma

Hi,

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 ?

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If what you have at home isn't working well enough then you should go and get help because struggling to breathe will wear you out very quickly.

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It's such a rubbish situ you are in - you need a decent consultant who can manage your asthma properly!! Obviously if at all possible asthmatics should avoid A&E - frequent A&E attendances do make things worse - however you reduce the number of A&E attendances by making the asthma better, not just be not going to A&E!!! Thats insane!! Does he not understand that asthma can kill???

Is your GP any good? sometimes that can be a way to either change consultants or get admitted to the ward bypassing A&E if you're not at that point yet!

Wish I had better advice, you just have to trust your instincts and get help if you need it!

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Thank you

It all came to a head my go is very good but because my asthma was

Getting worse then I had no choice but to go in to my local hospital.

There used to be 3 respiratory consultants at my hospital.

Now there is just one the new one who thinks asthma patients should be

Treated at home. He has never worked in UK before or the n h s.

So I came in got worse pulse 200 and respiratory rate 50.

So at first I was just with medic consultants then they referred me to

respiratory consultant . My consultant as he is the only one

I told him face to face that he upset me by saying I should not

have been admitted and astmatic's s Be Treated At Home.

He said did I say that probably I see so many patients that I don't know who I say to what. No apology nothing. So I made a decision to make a official complaint.