The horse is dead! (A follow up from my last post)

[EmmaF91]

So after being nebbed to death, yesterday the reg I saw asked me to stop reg nebs and try with just vent and PRN nebs. I suggested hydrocortisone therapy (again) but was told it’s the same as taking steroids etc etc (🤦‍♀️). Name dropped my old spec hospital where I had it done and suddenly she told me the con would consider it when he reviews tomorrow (today 😉)

I had a night of commiseration from nurses and frustration whilst I planned my line of attack 😂

It wasn’t as bad as I expected! The cons (who specialises in CF, bronchiectasis and resp immunology) hands down admitted to not knowing anything about it and not having too much to do with asthma (defo little at my end of spectrum). So I explained my experiences on hydro therapy (both at spec hosp and old local where I got it as an outpatient almost monthly). He asked me a lot of difficult questions cause he didn’t know how to prescribe it (ie how much (100/200), how often each day, do I stay on steroids whilst on it, how many days for etc etc) which meant I’ve come up with my own prescription (100 x 3 day, on 1/2 pred, til tomorrow evening) 😂. Also got asked how it’s different from prednisolone (other than different absorption I couldn’t really say just I know it’s different and works better for me to give me stability!). He also asked if my normal con will tell him off for giving it (as she’s never had to give it to me before as I’m relatively new to her)... I told him to blame it all on me if she objects when she gets back from her leave😂

My normal Cons is apparently running a seminar about asthma (her specialism) soon so this Cons gonna ask about hydrocortisone therapy. He said they need to get info on more difficult asthma as she can’t work everyday and they should be able to deal with patients like me! I did warn him I’m an anomaly in that my asthma has maintenance issues more than reversibility. He did seem a bit apologetic that it’s taken this long to get what I know I need (2-3 days of asking) but I understand if they’ve never heard of it before then they’d be apprehensive about prescribing it. I do think they (he and his minions) have learnt from this situation and are keen too!

Optimisitically thinking I’ll be out on Saturday

In other (brilliant) news... I have a date to start Benralizumab!!! Next Thursday is my first dose 🎉🎉🎉. Meaning if it works this may be one of my last trips to hospital with my asthma 🤞🏻🤞🏻

I’ve gone from feeling really down and frustrated about it all to feeling like things are actually working for me and going on the right direction!!

Thanks for everyone who commented on the last post - it helped to keep me sane. I did call auk and my spec hosp severe asthma line for some support too, which did tell me that I wasn’t being too demanding asking to try something different 😅

[twinkly29]

Well done you! And thank goodness for the consultant who was prepared to listen. So glad you've got what you need - and a date for your new treatment!

[EmmaF91 Community Ambassador in reply to twinkly29]

Thank you 😊

I’d much rather a doc admit they don’t know and ask, then bulldozer you thinking they know best (or just are to embarrassed to say otherwise)

[twinkly29 in reply to EmmaF91]

Completely agree!

[EmmaF91 Community Ambassador]

Think I’ve proved my point about hydrocortisone therapy already...

since 100 hydro at 3.15pm I’ve had 2 puffs of vent and ranged from 460-550 (73%-87%). (Drop was after a 10 min fast walk to resp ward and back to get a new PF chart 😂). About to get next dose.

Yesterday my range was 240-480 (38%-76%) and between 1pm yesterday and 2.30pm today (when I was off reg nebs) I needed 34x vent, 10mg salb and 3x atro 😂

Ok I am expecting to maybe need a neb during witching hour tonight (but hoping to vent it away!!) but that’s a definite improvement!!! 🎉🎉🎉 (a win for hydrocortisone therapy and a win for me!!!)

[Wheezycat]

So nice to hear! Fingers crossed for that discharge day AND for the new Benralizumab!

[EmmaF91 Community Ambassador in reply to Wheezycat]

Thank you!

[LDloveslattecoffe]

Glad they finally listened, it's so frustrating that you have to fight like that though to get what you need.

Hope you get out tomorrow and good luck for the Ben

[EmmaF91 Community Ambassador in reply to LDloveslattecoffe]

Thank you! 3 doses of hydro in and I’m at 94%. Only needed 1x 2.5mg during last nights witching hour (6hrs after hydro and 9hrs after my last 2xvent) only dropped to 55% too!! If I hadn’t wanted to sleep I would have just vented it up with 4-8 puffs 😅

So far nurses are all very impressed with the situation and I can’t wait til I see the reg today 😉😂

Think this is definitely a learning experience for them! Unfortunately for me these fights are normal until people get to know me 😉😅 (usually it’s in a&e tho 😉😅)... medics only seem to connect lack of reversibility with a problem and ignore maintenance issues!

Cant wait til Ben! Hopefully this will be my last big issue!!! 🤞🏻🤞🏻🤞🏻

[twinkly29]

Did you escape?

[EmmaF91 Community Ambassador in reply to twinkly29]

Yes I did thanks. Got granted freedom yesterday at 9.15am (I had my last ‘surprise’ hydrocortisone shot at 8.45am 😂). Got home and managed over 24hrs in green zone with no salbutamol... haven’t managed that since before I stopped mepo 😅. Had to have a few puffs today but hey... only gotta last til Thursday 😉

Hope you are doing ok xx

[twinkly29]

Wahey go you and your hydro!

Bring on Thursday!

Erm no ...ended up back in yesterday. Horrendous a&e/resus experience (caused by med reg). Thankfully bypassed AAU and went straight to resp ward where I got TLC from lovely nurses who know me.

[EmmaF91 Community Ambassador in reply to twinkly29]

Sorry to hear that you’re currently in and also for whatever went down in a&e 😔. I hope it’ll be a short stay for you! It’s really nice when you get nurses who know you and what you need! 🤞🏻 for a smooth recovery xxx

[twinkly29 in reply to EmmaF91]

Nightmare med reg telling me/everyone that my consultant doesn't agree with my plan (it's not on official paper yet... it's in process.... helpful!) and it's a departmental decision etc. Most of me knew that would not be the case because it's completely against what was said in clinic 3 weeks previously but a little part of me thought I'd lost my main support. Also he was making me wait 2 hrs between nebs which I just can't do at that point (literally cough incessantly and can't breathe for 1.5hrs+ of those 2 hrs) so that evening and first night was horrific. Usually by the next morning it's naturally settled and gaps have got to 2 hours once hydro and aminophylline has kicked in. But he was a pain basically. Anyway resp nurse just spent 40 mins with me and was great. She's giving my consultant the head's up in the morning so he can decide when he'd like to have a chat with me about it. Lucky him 😂. He always wants to know when it's gone wrong though so hopefully won't mind..... too much!

[Hidden]

This may be naive, but having just caught up with this (having not been on the forum for a couple of weeks or more) I do wonder what it says in your medical notes and did anyone bother to check what they said? If your notes have no record of how you’ve been treated in the past, how is anyone supposed to know what to do in the event of you being admitted? And if your records do have that information, how come no one looked at them - unless, of course, it’s all written in medical shorthand that is not easy to understand except by an asthma specialist which, let’s face it, really puts the patient at risk if they are not around to interpret them in the event of an emergency admission.

Or is it a case that they don’t have access to your notes?

[EmmaF91 Community Ambassador in reply to Hidden]

I moved house in December so I’m basically having to start afresh at this hospital. Not sure if my new local in Norfolk has access to my notes from my old local (Kent) or interim local (Essex) or even my old specialist (London) and I’m just getting started in a new specialist (Cambridge) 😂. Tbh I think it was just a case of this consultant never having heard of hydrocortisone therapy outside of the acute asthma setting (ie non-responding reversibility at HDU/ITU levels 🙄). I had never needed hydro at this hosp as I had improved after mepo and this was the first time I needed it so nothing on their notes about me if that makes sense.

In a nut shell I have no idea who can see what, but my notes are probably big enough that they didn’t want to spend hours scrolling til they found the last time I needed it (somewhere between July-Sept 18 😅). As I said starting mepo really improved my asthma!

[Hidden in reply to EmmaF91]

I usually find if I can give a date (roughly) it does help them to isolate something. My own notes are considerable (first surgical procedure aged just 9 weeks - that’s well over fifty five years ago - and there have been a lot of issues since then, not just asthma related either:-))

I know my gastroenterologist can access what consultants from different areas have written in my notes, he did so last time I saw him, and commented on some of the findings.

My sympathies if your notes haven’t made it to Norfolk yet. Whatever happened, thank goodness things are now improving.