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Feeling frustrated & unsupported (sorry this is long but advice welcome).

(19 Posts)
AwaywiththePixies27 Sat 12-Nov-16 08:03:38

Had it as a child, grew out of it, last year I kept going back to to the GPs with a horrendous cough I couldn't shift. Practice nurse informed me it was an asthmatic cough she's sure she could hear and prescribed me inhalers. All fine and when caught a cough or a cold, increased my inhalers and carried on my way.

This year however, whenever I get a really bad cough, it floors me, first time, I ended up in a & e a couple of times before I was taken seriously, because i was effectively one of 'the walking well' , I was dismissed until it turned into a real emergency (critical care the lot were called down). Couple of days in hospital on the right treatment and I was back to Normal. I had a respiratory nurse come out to visit me and got told (I'm 30) "but you're too young to get ill" hmm

Nothing else happened until the summer when I came down with a head cold, started taking cold & flu tabs etc and was still taking my inhalers. All I remember is laying down to sleep one night and literally not being able to breathe. I rang my aunt who rang the paramedics as all she could hear is me wheezing down the phone. Paramedics said we'll run you down to get you checked over. We aren't worried because your 02 says are ok. (My DD has bad asthma so took this to be a good sign). Great. I'll be back home in a few hours time then I thought. Not so. The minute the A&E doc took one look at me I got rushed into resus and spent a couple of days on HDU and then 4 more days in another hospital before being let home.

Nothing else until last month. When again. A virus set my asthma off. They insisted on keeping me in because of the last Resus/HDU admission and again spent a further week in hospital. Everytime this happens they refer me to an asthma clinic outpatients and every time I attend the appointment I am discharged. Going back to the resus incident - the HDU doc changed my inhalers and said that this time they'd get me proper help and I'd be referred to a proper resp consultant before they discharged me. On the 3rd admission they said they'd got no record of that referral being made. confused

Obviously with it being winter now, I'm picking up viruses left right and centre. Yesterday. The paramedics were called as I couldn't breathe. The Nebulisers' they gave me weren't helping so they took me down to the resp ward. Before we even got out the ambulance. The Paramedic made his colleague stop whilst he put me on oxygen. Got on the ward. The nurse took me off the oxygen. Doctor came round. Gave the nurse a bollocking for taking me off it and ordered steroids antibiotics bloods and an x ray. Alongside regular nebs. I informed the nurse I couldn't take steroids without omeprazole as it made me sick. She gave them me anyway and then wondered why I was sick. Can I just put a disclaimer in here? All you nurses and docs are amazing and do a fabulous job but this nurse is the very same nurse who refused to give me any meds or nebs the last time I was admitted and then left wondering why she had to call a critical care doc down for me five minutes before her shift had ended! I am partially deaf so a lot of people assume I can't hear anything. That day I remember the sister stood yards in front of me and said "she don't NEED any. Its just her anxiety". I needed IV Magnesium that night as a result of my 'Anxiety' confused .

Going back to yesterday. The nurse couldn't do my bloods after one try so said they'd get the doctor to them. The doctor never rematerialised due to an emergency in another bay (fair enough).

Come up from x Ray, a new doctor comes in to see me. "good news your x-ray is clear so you can go home now".

I'm not very good at being assertive in these situations especially when I'm mainly focused on breathing. I still feel really bad today and my friend is taking me back down to the walk in centre as the hospital sent me home with antibiotics and a steroid card but no steroids. By the time I'd realised it was too late as my Dad who was running me about (I dont drive) had already left for work by then.

Has anyone been through a similar situation? I just don't know where to start in being more assertive and getting help for myself in these situations without coming across as an arse.

AwaywiththePixies27 Sat 12-Nov-16 13:31:44

Oh gosh sorry this is rather long blush <hands tea and cake round to anyone who's read it to the end> brew cake

bluepinafore Sat 12-Nov-16 13:49:45

I'm a practice nurse and so sometimes see asthma patients although am not an expert - what inhalers do you use and how often?
Even if you have got asthma and respiratory infection is your trigger, having this many extreme exacerbations means your not controlled properly and I wonder if you even have the right diagnosis? Have you had spirometery done?

AwaywiththePixies27 Sat 12-Nov-16 15:32:29

bluepinafore thinks for the reply. I am on symbicort and ventolin. Not had spirometery done . On the resus admission the consultant said he was going to make sure a referral to a consultant went through before I left hospital. Yet on checking later we were informed this was never done. confused

bluepinafore Sat 12-Nov-16 15:46:30

Would've thought spirometery would have been done to look for problems in your small airways and check overall lung function with a clear X-ray.
Sounds like you aren't being looked after at all! Frustrating for you.
How old are you if you don't mind me asking and do you/have you ever smoked?

AwaywiththePixies27 Sat 12-Nov-16 16:14:28

I'm 30 and no I dont smoke. Have never smoked either.

That's one of the frustrating things about it too. When I was last in for a week. I was the only one on the ward that didn't smoke. 🙊 I am slightly overweight. Which I know can be a contributing factor. There are two nurses. The patronising one and the nice one. The patronising one once said "I'm glad to see you recognise this is a problem for you". hmm I'm not fat because of eating too much cake I'm fat because I keep endlessly being put on steroids without any further assessment / investigation.

bluepinafore Sat 12-Nov-16 16:20:29

Ah ok so no chance of it being COPD then.
Can't believe you're just being put on steroids when it doesn't sound like you've had a clear and thorough diagnosis... you must keep pushing to be referred, your lungs are likely to be being damaged in the process of your uncontrolled asthma and as I'm sure you're aware, steroids in the long term can lead to a whole host of other problems!

AwaywiththePixies27 Sat 12-Nov-16 21:27:18

Hi bluepinafore thanks again for your advice today. I ended up at the urgent care centre this afternoon. Was given a neb and some steroids so at least had some relief. Sad to say I'll be reporting the hospital first thing Monday morning for sending me home without proper investigations. They also said they're writing on their notes to GP that I need referral to a respiratory consultant.

Just come to bed, I was laid down for 15minutes leaned against some pillows at an angle. Still coughed my guts up. confused

Northernlurker Sat 12-Nov-16 21:46:07

You need to complain about lack of follow up - you can do this through pals at your hospital. You should also insist your GP reviews and refers you as an emergency. You've required a lot of emergency treatment thus year and they should be supportive g you.

AwaywiththePixies27 Sat 12-Nov-16 22:02:22

Thankyou NorthernLurker . They tend to refer me on to an asthma clinic who sees me. Says I'm fine and discharges me. Until the next time...

I just really don't understand where this whole anxiety thing is coming from, as far as I'm aware, anxiety can not cause you to have a lung infection. I have been treeatsd for anxiety and depression in the past, I'm still on the address but that's only because my neurologist (I have a congenital neuro condition) stated the tablets he's put me on can cause depression flare ups because of the imbalance it can cause. So he's told me to stay on them to counteract any such side effects of the neuro tablets. This is explained to the medical staff every time yet I still feel like I'm being treated like some hypochondriac who panics and hyperventilates at the slightest thing. For clarity. I'm really not. Ive been at my current GPs five years and I think ive made an emergency appointment 2x in that five year space. I just don't understand the shift in attitude. Last month. They insisted on keeping me in and monitoring me for a week because of what happened in resus over the summer. Yesterday they couldn't get rid of me fast enough despite the fact I was using back to back nebs. confused

AwaywiththePixies27 Sun 13-Nov-16 08:31:00

Address? blush I meant antidepressants obviously. Apologies. Still didn't get an ounce of sleep last night. I'm waking up every fifteen minutes having a coughing fit confused.<scuttles off to make a cuppa>.

pinkpostitnote Sun 13-Nov-16 10:41:40

I'm only a recently diagnosed asthmatic. I found asthma uk very helpful - have you spoken to them?

I'd insist on a referral.

Completely wide shot - my neighbour has an inherited / genetic form of copd. It's in her family. Some sort of missing protein. (I know as she quizzed me / told me about it during my asthma diagnosis). Just another possible idea.

If asthma; it doesn't sound like you're properly controlled.

Hope you get sorted soon.

maggiso Sun 13-Nov-16 22:35:26

Similar happened to me some years ago, until I got very ill, and spent a fortnight in HDU. I was then discharged (with a months worth of steroids) and no follow up and it took a good while to get well again. Its very distressing to not know what is going on with your health - so you have my sympathy. My experience as an inpatient was quite an eye opener at how grumpy and unkind a few staff are- even to very ill or vulnerable patients.
I think you need to see your GP ( or write to PALs - the patient liaison officer) when you are well enough and ask for a speedy referral to a respiratory specialist. Ask if you need any tests like spirometry, in the meantime . If you have a peak flow monitor and know how to use it you could get a PF chart from Asthma UK and chart your PFs so its all ready for that first appointment. It might be worth checking your vit D levels are OK (if you have been unwell and indoors a lot Vit D levels may be low and that is not good for your breathing) - your GP can check that.
Its hard to be assertive when you are ill, but I find it is helpful to think in advance what I want from an appointment and write down what I should ask for, or any points I need to raise.
I hope you are soon feeling better, but take things slowly.

AwaywiththePixies27 Mon 14-Nov-16 15:14:32

Thankyou pink and maggiso. I was back down A & E this morning as I'm still not right at all sad

Was given another neb and had bloods etc done. Doc wanted to refer me on to the other hospital. Other hospital wouldn't accept me (other hospital is the same one that discharged me last time).

So instead they've organised that I come home, wait for a resps nurse to come out and see me, and they'll decide whether I need to go back in or not instead confused

My friend came to pick me up and I just cried out of frustration and being just tired and fed up I think.

AwaywiththePixies27 Wed 16-Nov-16 18:38:26

Community nurse came out to do a home visit yesterday, took one look and rang an ambulance and rang ahead to the ward sad

None of the Doctors seem to know what's going on but the consultant this morning isn't convinced it's Asthma and has ordered repeat bloods and a test to check it isn't a blood clot.

Tea and Cake being passed around is welcome. grin

Knackered46 Wed 16-Nov-16 23:11:04

Oh Bless you! How are you feeling now?

maggiso Thu 17-Nov-16 00:14:45

Are you in hospital again? I hope you are getting more information and help.

AwaywiththePixies27 Thu 17-Nov-16 08:04:14

Thankyou knackered and maggiso yes I am in hospital again. Been in since Tuesday afternoon when the respiratory nurse rang an ambulance. They have took bloods off me Tuesday and Wednesday and yesterday then doc was saying the bloods were okay. Turned out she was referring to Mondays bloods done in A&E not the ones done in hospital. I haven't needed a nebuliser since 00:30am last night so they'll probably let me home today. I keep getting this horrendous pain in my sides but they're putting it down to me coughing.

Consultant wants to refer me to a proper doctor, asthma nurse wanted to refer me to a physio confused

AwaywiththePixies27 Sat 19-Nov-16 10:32:47

Hi all I was discharged yesterday, I'm still feeling rough, I have been on antibiotics and steroids and upped inhalers for a week I was still getting horrendous chest pain which I mentioned to the doctor the other day , they have put it down to to the coughing but it's not subsiding with the painkillers they gave me. They were going to let me go Thursday morning but the nurse had given me a nebuliser at 9am so I had to stay in for another 24hours (just shows how quick they were to discharge me last week - I was still on a neb when the Dr said I could go last week! hmm)

When I got my discharge forms back it said diagnosis "infective exacerbation of asthma". Then secondary diagnosis "Anxiety". confused . My Asthma Nurse (the nice one) said she was going to scribble in my notes as I dont come across as an anxious person to her.

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