Asthma nurse from hospital just rang and said my bloods are borderline for referral to Southampton to get biologics 😔
I feel a bit disappointed but hey ho, can’t force your blood work to be worse than it is 😂
So I’ll keep bobbing along on 8 asthma meds& steroids as and when. I’m feeling like I should be grateful as it means I don’t need to go there but on the other hand feel cross with the hospital team because they keep referring me back to my GP who can’t add on meds at this level without them.
Never mind! Will just have to get on with it.
Sorry for the moany post!
Dee
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madonbrew
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Oh that's annoying. And the frustration of being stuck between a rock and a hard place makes the whole condition feel that much worse, doesn't it? I'm so sorry.
Did you get the bloods done during a flare or when you weren't too bad? It can take weeks to get an appointment, by which time you can be feeling better. Ask me how I know! 🙄
I had them done just before a course of steroids although I wouldn’t have said my worst& not my best either. It’s really annoying as once upon a time my eosinophils count was 1.0 & now it’s 0.3...when I could have done with it being 1.0 😂😂😂 I forgot to ask what my IgE blood result was. ...borderline whatever that would be!
This happens to me lots in life that I’m often ‘borderline’ but it’s quite a hard place to be because I never end up getting the help I need because I’m not bad enough, although not super well either 😖
Yes, it’s a mixed place to be. It’s just frustrating knowing that I struggle to breathe the majority of days on all my meds but am not bad enough for extra help...as in not in& out of a&e & hospital on a regular basis. ...which obviously I’m very thankful for!!!!
I thought 0.3 was enough - just on the border but I looked up the NICE guidance and it seems to be 0.3 (or 300 cells per microlitre) or above, not above 0.3? Also that's within the last year - when was the 1.0 figure from as that should be enough? I got 0.3 once and they discussed mepo for me at the MDT (but didn't go ahead with it as tbh for me I think that was a one-off; I don't seem to generally have eos asthma - but the 0.3 would have been enough and triggered it for consideration!) Can you check that with nurse? Would have thought borderline worth referral esp with the 1.0 before.
Is Southampton literally just for bios? Because I'm at a tertiary clinic and while there was thought of bios as an option when I was referred from secondary, I didn't have to meet the criteria just to be referred to the clinic! Would they accept you anyway for a more detailed assessment? I feel like your clinic should either do something or refer you, but not make it all about bios to refer, unless they've been explicitly told that's the only reason they can. As someone who cannot have bios because I don't have the right kind of asthma, I've been told I am still appropriate for my tertiary clinic. They might well find you can have bios, or be able to tweak other things - it seems like your current clinic isn't trying that hard if they just want to get rid of you!
That’s how I feel...that they are just trying to get rid of me. And that’s after my surgery re-referring me back.
My meds are:
Fostair 200/6 6 puffs a day
Spireva 2 puffs morning
Alvesco 160 2 puffs morning
Avamys Nasal Spray
Vent as and when...probably 2-4 puffs per days averagely
PhilIocontin 2tabs a day
Montelukast
Certirizine
Pred as and when...2 courses since May
I’ll see if I can talk to my GP or surgery asthma nurse. I am under an immunologist for something else at Southampton so could possibly email him. I’m not sure what was the other purpose for referral.
Yeah if your current clinic "want rid of you" then they should refer you on to Southampton! Even if they decided bios weren't the route for you, they might have other tests or tools or strategies that might help. But referring you back to your GP is just unhelpful!
It’s helped just writing about it on here because I felt like I just wanted to cry. I think my surgery asthma nurse will be disappointed and annoyed too.
Even having all you guys support helps!
I’ll try and talk to my immunologist as 1..he’s an immunologist, 2...he’s based in Southampton so might be in a better position to refer me &also even though he doesn’t see for asthma he’ll have lots of blood results & would probably add in extras for me to check asthma stuff too.
Is it just a general respiratory clinic? The advantage of tertiary is that they're actually *asthma* specialists not just general respiratory, and they mainly see patients with asthma. Unfortunately general respiratory, especially if the consultant focuses more on eg COPD or lung cancer, doesn't necessarily know how to handle asthma (they might claim they do on the website but they usually have a list of about 10 other things. Realistically, they can't keep up with all resp disorders and they will usually have one or two they're more familiar with).
In my experience (and this doesn't apply to all resp drs of course), they can often think asthma is 'easy' and not really that bad and anyone can handle it; I find they can really struggle with and dismiss anything that isn't textbook asthma. I've got to the point where I'd rather see a non-resp medic on the ward than a resp one who isn't asthma as while some resp ones are ok, some are just SO sure they know it all while coming out with really odd stuff! The non-resp ones are at least more aware that they don't know everything about asthma.
Can't guarantee that an asthma clinic will always get it right, but I think they have a better chance perhaps than a general resp one which seems to see you as a nuisance. I would say it is worth a referral even if not for bios, because they can do a general assessment and see if there's anything that can be adjusted, or anything else that's contributing to the asthma. That could be VCD or dysfunctional breathing patterns which often go with asthma, but they could also address the asthma side of infections if you get a lot of those (sounds like that may be the case if you see immunology?) and look at eg whether your hayfever is controlled as well as it can be etc.
When I was referred to tertiary I actually wasn't keen to go, because for once I had a really nice consultant who listened properly and did seem to know about asthma, despite claiming not to - but he said they just didn't have the tests or treatments available that I would get in tertiary.
Yes it’s just general respiratory clinic. They got rid of me during lockdown & wrote to my GP to say refer me back if they feel I need to be, which my asthma nurse at surgery did and said she didn’t know why they ever discharged me in the first place. Now I’ve just been discharged again 😢
My asthma is triggered lots by infections however the reason I’m under immunology is because I have a rare autoimmune disease called IgG4 systemic disease. ..which has affected my pancreas and kidneys. A recent CT scan showed no lung damage in regards to my IgG4 disease.
I’ve had 2 severe asthma attacks where I’ve been blue lighted& sirened to hospital from my surgery& had an 11 day stay on both. Thankfully not ventilated but obviously severe attacks. Back to back nebs for the whole duration & mag twice. Both times they said I also had pneumonia too.
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V Disappointed with Brompton Appt.
Had enough now
