Feeling frustrated: I feel let down by... - Asthma UK communi...

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Feeling frustrated

Filobabe
Filobabe
24 Replies

I feel let down by my local emergency department. I attended via a 999 ambulance having Salbutamol amd Ipratropium and still wheezy when I got there.

I appreciate how awful and busy it is but I felt so tight and told them that (just about, still not complete sentences). Also have brittle asthma. After a set of observations and sats of 97% they decided I would be ok in the waiting room. Less than 15 mins later I was really struggling and approached reception completely feeling tight, wheezy,coughing and dizzy. My sats were 91% and again another neb of salb/ipra and some steroids. Nurse slammed card on desk, grabbed my arm to do BP and rammed sats probe on, could tell she wasnt happy. 😢. Left for an hour sat outside minors with no plan on oxygen. Another hour passes and remove oxygen myself as dry throat.

When I was finally seen they decided I needed admitting, but I needed to sort my children. Asked if I could just return in 30 mins to drop children at a relatives. No its self discharge or stay. Sounds a bit crazy but I cant relax if my kids are not ok.

Given steroids and reminded that ED is open 24 hrs 🙄 and that asthma kills. Am regretting leaving as my chest is tight again and PEFR down to 50% again.

Dont think I can go back to ED hell again.

UPDATE:

Finished steroids over weekend. GP review today, chest is apparently clear but PEFR is still only 70% of normal and I am breathless on exertion. Not to mention major trigger with the cold is annoying. Been described as a brittle asthmatic by GP 🙄. Feeling òk

24 Replies
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Echoblue

So sorry to hear you are having a grim time. Please take care and don’t risk being a statistic! If you need A&E then please return. Do you have an alternative hospital you can access once your children have a relative with them if you can’t face returning to that one? Please look after yourself x

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Filobabe
Filobabe
in reply to Echoblue

Thanks Echoblue. The nebs just don't seem to last long enough.

Feel torn between my health and my family. Holding off overnight as long as I can but have already ised copious amounts of salbutamol already via spacer.

Steroids have started to work though so hopefully tomorrow is another day!

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Echoblue
Echoblue
in reply to Filobabe

Good move with the spacer as that will help to get as much in as possible.

I genuinely get the dilemma you are in as have been there and got the t-shirt! I have also seriously scared myself before and convinced myself I’m not as ill as I actually am and by the time the penny dropped it has been seriously far on!

It was when they grabbed my bed in A&E and were racing me from majors to resus closely followed by ITU Consultant and Registrars that I genuinely worried I may have left it too late and then what would have happened to my kiddies!

If it had been a relative, friend or one of your children with the breathing you currently have, what advice would you give them? Thinking that way has helped me make better, safer choices since.

I hope your steroids kick in very soon. Please keep us posted with how you are doing and I hope you get over this flare up very soon 🤞🏻 x

2 likes
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Griffon

I live in a remote location and A&E is very difficult to access . After experiencing a couple of incidents where I thought I was going to die , I bought my own oxygen and keep a supply of medication so as to be able to treat myself . Oxygen and nebulisers can be bought on line . Everyone should equip themselves !

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Filobabe
Filobabe
in reply to Griffon

My consultant didn't recommend this as he says would need to be seen and need other drugs. He said its dangerous to rely on community treatment. He also recognises how crap ED can be too however.

The nebs are only partly what I need. Steroids magnesium, antibiotics, sometimes adrenaline.

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Griffon
Griffon
in reply to Filobabe

Obviously your choice .

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K8ty25

About 3 months ago I went to A&E struggling with my asthma. Initially the help was good. Quick response and treatment with nebs. However I had 4 nebs to clear the wheeze. Consultant then appeared 10mins later and told me I was safe to go home. I tried explaining that as soon as the nebs wore off I would be struggling again but he refused to listen and essentially threw me out. Within 24 I was back in A&E and then admitted to the hospital for 1 week and intensive treatment. All I can say to you is yes A&E can be awful but sometimes you need to be prepared to fight for the correct treatment. I know that can be hard when not feeling your best but a good Dr will listen and help

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Filobabe

Just hard to fight when you feel so unwell, not always outwardly obvious how ill to everyone.

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ChrissieMons

Could you put some kind of emergency plan in place? I don't mean medication, but a good friend or relative you can call who will take the children at short notice? Ideally, you should have another friend who can come with you to A&E. If you ask people, they are often very willing to help. Knowing things are ok at home will help you as being anxious about all this only makes your breathing worse. Moreover, a friend with you can pull up staff who are being rude or impatient with you. Just because the staff are stressed, they don't have to take it out on the patients.

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Filobabe

It happened to be one of those days when none of my friends were free unfortunately or I would have. Thanks.

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Jackwabbit

Sorry to hear your experience with your hospital. Unfortunately it's not unusual. My wife was rushed by blue light to our local hospital, where she had to wait i hour to see the triage then a further 7 hours in minors waiting to be seen by a doctor. She was put on another nebuliser & given steroids & sent home an hour later. 2 days later she was rushed in to hospital again only this tome they put her on one nebuliser after another & IV fluids all day & night, along with 3 different antibiotics before they said they didn't know what else to do. Luckily she had an appointment at Brompton hospital that day so I had to take her there. They immediately identified the problem as hyper sensitive larynx, that as well as her asthma was causing her airways to close off completely , she didn't need all the nebulisers & antibiotics. The question is what do we do if it happens again? when our local hospital dont know what to do!

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Filobabe
Filobabe
in reply to Jackwabbit

That sounds scary. At least you know now what to do in the future. I hope thinsg inprove for your wife.

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WheezyAnne

Can I suggest getting a copy of a letter from the Brompton Consultant which explains what the issue is, and what treatment to give, and carry it with her at all times?

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EmmaF91
EmmaF91
in reply to WheezyAnne

And take a photo on her phone if you can. Then always with her

1 like
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WheezyAnne

How are you now? What did you decide to do? Could I just mention that if you continue to get tight chest, and ór wheezies and continue to wait, particularly if you have an infection, you could end up with permanent damage to your lungs, which means you could end up being breathless and tired all the time. It is vital they get your symptoms under control, rather than causing you extra stress. That is my situation in a way. For the last 50 odd years I have had Severe Atopic Eczema and Asthma. I have damaged lungs through all the infections and have trouble making enough antibodies to fight the infections. Please look after yourself. With warm hugs..

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Filobabe

I have been having multiple minor attacks for which I have been using my spacer and Salbutamol.

2nd day of steroids and hoping they kick in quickly. I don't have an infection just a dry cough.

Although not looking forward to tonight- barely slept last night.

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Junglechicken

I had multiple attacks over the summer. They are just horrendous. Here’s hoping you get a good nights sleep and your steroids get you well again.

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Echoblue

Did you see any improvement by the end of today Filobabe? Was so hoping those steroids would have kicked in by now? If not, may be worth getting seen tomorrow as you just know nothing happens on a weekend!! 🤷🏼‍♀️🤦🏼‍♀️😫 x

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Filobabe
Filobabe
in reply to Echoblue

Didn't have the best nights sleep again. PEFR still hovering around 50% and frequent use of Salbutamol.

Not sure what else to do.

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Echoblue
Echoblue
in reply to Filobabe

I would suggest you call asthma Uk nurses for guidance 👍🏻 good luck

1 like
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Echoblue
Echoblue
in reply to Echoblue

I have just had reason to contact them - used the WhatsApp service and then they suggested I speak ...... were absolutely amazing. Nothing but praise going above & beyond even researching some of my complexity too 🎉🥳👏🏻👏🏻💕

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EmmaF91

Hi Filobabe

Hope you’re starting to feel a tad better and have stabilised more... look after yourself and as always if you need to go back please do so...

1 like
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Filobabe
Filobabe
in reply to EmmaF91

Thanks. Steroids have finally kicked in and I have a PEFR over 50%! Just still cant sleep properly due to cough but hey, you can't have it all.

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