Struggling

[Chukkin]

Hi all,

I am a brittle asthmatic, admitted on Monday after a weekend of struggling. I increased my steroid and nebuliser (which is usually only for emergency use) before seeing the GP on Monday morning. She sent me in to the hospital (straight to the ward, no A&E).

Fast forward to today. Other than my normal meds, I am on nebs when required, and 3L oxygen. The doctor who saw me this morning immediately turned the oxygen off and stopped the nebs as I am not wheezing and my peak flow is 300.

Note: I don’t keep an eye on my peak flow at home due to it being unreliable. I can have a good number but feel awful and vice versa.

After ten minutes, the nurse came to do obs and my sats are at 79% on room air. She then popped the oxygen back on at 2L.

Does anyone else have the same feeling as me in the the doctors just don’t understand? I am trying to live a normal life (full time job etc) around this, but they keep making me feel like it’s all in my head...

Feeling very frustrated right now. Obviously I’d rather not be here, and when I told the consultant this, his response was just to say “well we will get you out as soon as we can”

[EmmaF91 Community Ambassador]

Sorry to hear you’re struggling at the moment 😔

I completely understand the frustration of hospitalisation, and the ‘stigma’ of asthma almost being thought of as attention seeking or your fault (I once had to ‘promise’ and shake hands with a doc that I actually take my meds as directed 🙄😒😤)

I also got continuously compared to COPD patients at my old hosp. My sats would drop to 90 on the ward and they weren’t concerned and didn’t give me oxygen or a neb. It was only when the AN came round and spotted the issue that it comfort written in bold on my whiteboard that anything lower than 94 and I need o2 🙄. I’ve also been cleared to go home from a ward 1 hr post neb (I always have a brilliant response to nebs but they don’t last 4hrs) I got hope and promptly became wheezy again... waited 4 days til I felt bad enough to get the meds I actually needed rather than just nebs (I too have an emergency home neb and won’t head in until it’s not working/doesn’t last 3hrs). I have to rely on my PF for diagnostics at home, cause I got to the point where I didn’t feel to symptomatic until it was 50% or lower, even if everyone else could hear how bad I was 😅.

I know it’s not normal practice to be on o2 for asthma, however usually when cons stop nebs or o2 they put it PRN so you can get them if needs be (esp severe/brittle asthmatics as we tend to know better than the docs what we need and when). Argh - it’s so annoying! 😤

I hope you start to feel better soon and get freedom quickly xxx

[Chukkin in reply to EmmaF91]

Thank goodness that someone else has experienced this and it’s not just me!

The consultant did ask today if I was taking any of the medication at home or if I forget to take it... So frustrating!

I absolutely hate the “no wheeze not asthma” view, and the worse one “no wheeze no problem”. He seemed completely baffled by the fact that I was obviously working for each breath, but wasn’t wheezy. He has agreed to refer me (back) to the difficult asthma clinic here (I attended the clinic when I was just diagnosed but that was a few years ago) so I am hopeful for some more answers if not a new treatment plan.

Many thanks for replying with your experiences, it really helps to know I’m not the only one struggling at the moment!

[EmmaF91 Community Ambassador in reply to Chukkin]

I know! - it’s such a relief when you realise there are other who are (unfortunately) in a similar situation to you! I wish I had found this site earlier instead of after I had myself all organised having learnt through experience.

I’m a lucky one as I do wheeze (now) and my PF (typically) falls ‘correctly’. I’m often in a&e feeling fine after treatment but my lungs are still ‘really wheezy’ so I get admitted. Unfortunately my best PF is stupidly high (630 predicted 440) so at new hosps/bad staff I have to fight to get past the ‘it’s a panic attack’ stage but recently my docs have been brilliant and followed my lead as soon as I said I’m severe and under Brompton on mepolizumab 😂😅.

Before I spiralled to severe I rarely wheezed so mixed with the high best PF life was very difficult! I’d have a LT attack (low BP, v. Tachy, and was losing energy to breathe) and be made to wait 4hrs until I insisted on not going home til I got treatment - had the critical care nurse have a massive go at a doc cause of it once they took me to majors (had had 1 neb in this time and sats had dropped from triage (98 down to the 93/92 swing). I can’t imagine the stress you must feel if you’re not a wheezer but are a severe asthmatic!

1 year into my spiral to severe I finally got a hosp consult (GP refused to refer due to costs, and had avoided late admission - I have good response to nebs so was in/out of a&e a lot but no admissions), then it was another year and a half to get officially diagnosed and referred to a specialist hosp, the. 6 months to start xolair. Now (6 months later) I’m on mepolizumab and I think it’s actually working for me ☺️.

I hope things calm down for you soon and that you find a treatment plan that works for you! X

[Chukkin in reply to EmmaF91]

Great to hear that things are starting to work for you! That gives me hope!

Like you, I started as a non-severe asthmatic but as time has gone on, it’s spiralling. Each attack ends up with inhalers, nebs, IV steroids, antihistamines, magnesium then it either starts to settle, or I progress into ICU. Never wheezed though. Only wheeze when I have a chest infection.

I am hopeful that the referral to the difficult asthma clinic will be more helpful than last time. I was asked to do the Mannitol challenge and when I did it, my lungs reacted to the placebo, and the test was stopped. So some docs have said that I’m not asthmatic since I shouldn’t have reacted like that, and some say severe asthmatic since I had such a strong reaction. Sigh!!

[EmmaF91 Community Ambassador in reply to Chukkin]

Very frustrating on the mannitol front. I’ve had to do it twice but with histamine. The first time we ended up cancelling cause my initial spiro showed asthma, the 2nd time I felt no difference but ended up loosing ‘enough’ (can’t remember how much cause it was last year) function to need a neb cause I couldn’t get back to baseline on just ventolin 😅. My modified borg score went from 0 to 0.5 - maybe 1 😂. It’s only then they realised that I really don’t recognise my symptoms.

I’d say you have very reactive airways if you reacted to the placebo!

I hope you’re feeling a little better now and that home is on the cards in the no so distant future!

[Chukkin in reply to EmmaF91]

Hi EmmaF91,

Finally managed to wean off the oxygen and was sent home this afternoon. I’m glad I’m back at home, but at the same time not feeling great. Not enough to need to return to the hospital, just the start of the recovery period. No explanation as to why it all started this time, and my discharge letter states “presumed viral exacerbation of asthma”.

You poor soul having to have a neb after your histamine challenge! I wonder if I could ask to repeat it just to see if anything has changed?

Were you diagnosed as a child?

[EmmaF91 Community Ambassador in reply to Chukkin]

Glad to hear that you’re home... hopefully you’ll start to feel better soon! Discharge letters are always useless!

Nah it was fine... I found it hilarious cause I didn’t feel symptomatic at all, it’s use the physiologist wasn’t happy cause I hadn’t returned to baseline. It’s always worth a try redoing it!

No I was diagnosed with EIA aged 13, had my first attack at 19 and started spiralling aged 23/24 (I’m almost 27 now). It all kicked off whilst at uni so was a massive learning curve and had to deal with discrimination at the same time as the actual asthma 😒🙄

[asthmatim]

Hi Chukkin, I like you am a brittle asthmatic which is type 1. I am sick and tired of mostly young doctors and some older ones that only treat the numbers and not the person. My advice to you is you need to fight for your self. I have had to for the last four years of living in Hong Kong and I have found the Chinese are the worst in doing this compeared to my home country of Australia. Unfortunately I can no longer work as my asthma has become to interfering with my everyday life. I also have had great nurses than have stepped in and helped me get what I need. You must fight for your self. With my condition being variable at times. Speaking up is hard at times but it is so very important as you know your illness better then any doctor out there. And just leave you with this, I am writing this to you as I am back in hospital after I had a attack yesterday. So I am once again fighting for my self once again.