Oh I’m feel frustrated and disappointed because I just got a phone call from the hospital asthma nurse to say my bloods are borderline to get referred for biologic therapy and the consultant doesn’t think they’d accept me.
What’s also annoying is that the consultant keeps referring me back to my GP but I’m on higher and unlicensed doses of meds that my GP can sort.
But you can’t make your blood test worse than it is hey. I was just writing on the asthma forum how it’s hard being ‘borderline’ because you’re never quite bad enough to get the extra help you need but you’re bad enough that you struggle along as best you can...struggling for breath most days being on maximum meds possible. Aaaagggghhhh
Sorry for moany post!!!
Dee x
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madonbrew
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How very frustrating for you Dee. Can you have a word with the asthma nurse or your GP and explain how this is making you feel? I hope things improve for you but it’s not easy especially now with covid around. Not great.
I feel like I want to cry right now. My family don’t understand my frustration and disappointment either...they think I should be grateful I’m not bad enough. Which I am...kind of.
Yes I’ll try and ring my GP or asthma nurse. See if there’s anything they can do to help.
You moan all you like Dee. I have heard some real horror stories on the asthma site including where they end up in A and E and coz they don't present the typical symptoms of an attack are told they are fine and to go home. This is despite them knowing their own bodies and that something is seriously wrong. The doctors ignore them and are sarcastic.
One of the worst ones was such a case where the sufferer was patronised like this and she said in the instant before she crashed she saw the doctors face turn pure white. They had to resuscitate her.
It’s terrible isn’t it!!!! What an awful experience for that lady! Yes you do hear some awful stories on the asthma forum!
It’s just so frustrating!!! I’ll see if I can talk to my GP or surgery asthma nurse...she’s lovely! I’m just rubbish on the phone...don’t know why I’ve always found it anxiety provoking & now you can’t see anyone in person 😢 It’s extra hard trying to sort anything isn’t it! And I don’t know what else they could do.
I have the same problem with my thyroid which is borderline underactive. So even though I have some depressing symptoms I am considered 'normal' under the NHS guidelines. It's not fun is it!
Hi Dee, try ringing your GP practice and don't hide how upset and distressed you are by all this. It's hard to fight your own corner when not feeling well as I have often found and said to others before.
I had an unexpected face to face consultation at my GP surgery today after phoning to report severe breathing difficulties. My practice has just started doing more face to face consults and is operating a very safe environment with no more than 4 people in the waiting room at one time very widely spaced. They stipulated the wearing of face masks but accepted that I couldn't do that and the doctor was wearing full PPE.
I'd like to think that you might be offered the same but at least try and get a phone consult with your doctor or nurse so that you can talk about it all with them.
Thank you lots Carole! Yes I’ll give them a ring. To be honest I think my GP and surgery asthma nurse might be a bit cross too because I’m on meds beyond the surgery level and they’d have to refer me back to change anything anyway. Crazy!
I wrote it out on the asthma forum my asthma meds...8 regular meds& prednisolone as and when needed. Two courses of pred in 4 months. And my eosinophil count was 0.3 which is when you can be referred to a tertiary centre.
I’m so thankful for all of you guys! You’ve all helped me not to burst out crying and generally just feel supported!!! 🤗🤗🤗
I’m glad Carole that you managed to see a GP face to face! Hope it was a useful one!
I don't know your history with your current consultant but it seems strange that he keeps referring you back to your GP when the latter can't prescribe your meds for you. I wonder if a second opinion from another consultant might be an idea. Of course a new referal could mean going on a waiting list.
I hope you are able to have a good talk with your doctor or nurse and that you make progress soon. Chronic illness is hard enough without all the emotional upset too. Glad you feel better for getting things off your chest here and that you feel the support helps.
I’m also under the immunologist at Southampton for something totally different but might write him an email to ask for his opinion.
I was under thoracics following a severe 11 day hospital stay asthma attack last March..as in 2019. But in lockdown because of Covid they discharged me from clinic but wrote to my GP to re-refer me if they felt I still needed to be seen by them. So my surgery asthma nurse referred me back telling me she didn’t understand why they discharged me in the first place. It’s lots to do with Covid I think...or at least with the excuse!
I don't think it's that so much as being taught that they all present the same way and if this figure, that one, and the other are fine then the patient must be. This isn't always the case of course and they just aren't prepared to listen to the patient who knows their own body. This is probably why the asthma fatality rate is so high here.
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