Coping with boredom

[Js706]

Despite having an excellent couple of weeks while on holiday in Lanzarote I’ve now come home and my lungs are really not happy about the pollen!

My peak flow has gone from 450 or so to 230 this morning so my maintenance prednisolone has gone back up to 40mg 😩 (although I had only managed to reduce it to 30mg anyway ha!).

I don’t really feel I’m quite bad enough to be in hospital but I’m on the max dose of all my other meds so I’m currently confined to bed while I hope the increase in pred heads it off.

How do people cope with the boredom on days like this? I’m out of things to watch on Netflix and normally I like cross stitching but that’s a bit of a challenge at the moment with the ventolin shakes! 😂

[Yatzy]

Don't wait too long before seeking help at hospital, Js706. Ventolin shakes sound possibly bad. What is your blood oxygen level? Hope you're well propped up on a mountain of pillows if choosing (?) to stay in bed.

[Js706 in reply to Yatzy]

I’m pretty shaky generally with all the other meds I take so it doesn’t take much ventolin to make it worse!

Oxygen is 95/96% according to my probe so not too bad. I’ve left a message with the severe asthma nurses at my local so hopefully they’ll ring me back later. If I haven’t heard from them by mid afternoon I might ring the asthma UK ones

[Yatzy in reply to Js706]

Sounds as though you've got things in hand for now. Phew! I agree 95/96 SATs acceptable for now. We do deteriorate fast though so keep up your steady breathing and check things every couple of hours. Hope you get some reassuring advice from your asthma nurses or asthma uk.

What a shame for this to happen after a lovely holiday! Poor poor you! Hope it wasn't the flight and air recirculation....puts me off flying these days 🙁 !!

Let us know how things go for you, but no delays allowed if things get any worse! 👆xx

[Js706 in reply to Yatzy]

I wasn’t too bad on the flights, I think it was returning in peak grass pollen season (which is always a bad time for me!) and having no tolerance built up after being away for a while.

Thanks! Hoping the increase in steroids will have helped by later on but if there’s no improvement I might wander along to hospital. X

[Lysistrata Administrator Community Ambassador in reply to Js706]

I am in a pretty similar situation to you (minus the pred which doesn't help much so came off maintenance and only sometimes increase). Also in that kind of limbo of hmm I feel crap but not really enough for hospital, but just want some relief! Am sure you know not to place too much value on the sats for decision.

Have also texted asthma nurses, good idea to try AUK if no reply. I hate going to hospital unless definitely properly bad because of my weird presentation. Also as I am not on pred I worry they may see that as a solution - I used to max out on that first when I was on it all the time.

Realised I have hijacked a bit sorry but sounds so similar! I am attempting to work from home but want to be in bed and can't focus. Usual solution for me is something light to read on the Kindle, if you have one and like reading. Can't focus on films etc.

Hope you get a resolution soon and hear from asthma nurses!

[Js706 in reply to Lysistrata]

It’s frustrating isn’t it! Yeah the pred doesn’t really help me masses either but I’ve been on it since Feb so have to reduce slowly but my lungs seem to kick up a fuss every time we try - I figured I may as well up it as it’ll be the first thing they say on the phone!

Thankfully my peak flow tends to match up with how I am pretty well so I’m just keeping a close eye on that too.

I hate the limbo, this is the sort of time where having a nebuliser at home would help me, but I’m not allowed at the moment as too unstable!

Currently I’m just propped up with some music on and a couple of books to read when I’m awake enough.

[Lysistrata Administrator Community Ambassador in reply to Js706]

Yeah mine used to do that - it was like they didn't like the actual reduction even if the higher doses wasn't helping! I now have no idea if/when it might help, but used to do the same with upping it. I have had to double my hydrocortisone though - all that pred gave me adrenal insufficiency and asthma eats cortisol I don't have.

I would love a neb at home as asthma nurses for some reason will just say yes or no to pred based on FENO and won't give nebs when I go in for some reason which I find a bit annoying- a nurse who worked with someone on inhaler devices once told me.a neb is better than inhaler and spacer when struggling. One of the specialist nurses at my clinic did say he felt I would benefit from a home neb but the cons hates them and so it's not going to happen!

Very grumpy sorry. Just feel like it's not acknowledged how hard this state is and I am.fed up with being told there is nothing more I can do about it.

[Js706 in reply to Lysistrata]

No need to apologise I totally get the grumpiness!!

I’m trying to persuade them to start me on xolair to try and get me off the pred but I’m sort of stuck between resp and immunology teams as my immune system is a bit messed up too at the moment!

Resp want immunology to finish with me first but immunology want me off the pred so they can see if that is causing the problem but obviously that’s not going very well at the moment so I’m just stuck in a no mans land (aka my bed!)

[Lysistrata Administrator Community Ambassador in reply to Js706]

Oh that's so frustrating, as NHS depts are awful at talking to each other! I can see how they would be wary re immunology if using a biological though, but very annoying for you to be stuck in no man's land. If it helps at all I did manage to get off pred in the end, slowly, but then I have a different type of asthma and Xolair wouldn't help anyway, so pred reduction may be harder for you.

Hope you find a way of someone doing something soon.

[Js706 in reply to Lysistrata]

Yeah, what’s most annoying is that immunology have actually said they’re happy for me to be started on xolair if they think it would be the next step for my asthma!

But resp say sometimes with patients like me once the immune side is sorted the allergy side gets more under control and the xolair isn’t needed.

Although just heard from the asthma nurse and she said they’re still waiting for my notes to come back after my most recent admission and they can’t discuss me at the MDT to approve xolair until they get them! UGHHHH.

[Lysistrata Administrator Community Ambassador in reply to Js706]

Ahhh more NHS admin gahhh! Someone needs to cut the knot.

Did nurse have any helpful advice for how you are now?

[Js706 in reply to Lysistrata]

Just generally to keep going as I am and monitor everything closely and if I don’t improve to head in.

Although apparently I sounded wheezy over the phone so at least they might listen if I end up going in!

[Lysistrata Administrator Community Ambassador in reply to Js706]

Ooh hold onto that wheeze! Lol. I sometimes feel like swallowing a mouth organ, especially as all the usual signs are not helpful for me. Just one, lungs, wouldn't kill you...

I wish I knew how long the 'not better but not worse' is meant to last before going is justified. Did you get any ideas on that from nurse? I think a rough time limit is useful - I don't quite have a plan and AUK nurses always ask.

[Js706 in reply to Lysistrata]

Haha tell me about it!

Unfortunately not, but I’ll see how I am this evening and reassess probably - might pop to the shop next door and see what that does to me!

[Lysistrata Administrator Community Ambassador in reply to Js706]

Good luck! I got ambitious yesterday and went down the road - very hard work but seems to have eventually settled back into limbo. Far too hard to try again though. Hope your airbags make a decision soon - I wonder if Supernanny would help with badly behaved lungs?

[Js706 in reply to Lysistrata]

Ah the joys! I always feel like I age about 60 years when my lungs decide to flare!

I expect I’ll probably end up in at some point it’s just when they decide they want to get bad enough for it. I wish!

[Lysistrata Administrator Community Ambassador in reply to Js706]

Mine have teased me so much the last few times to the point where an admission would have been welcome - worried they will do it again as I never quite get back to normal as I used to. My normally ok A&E was a total pain last time as was the on call cons though so it's making me reluctant.

Here's to returning to our proper ages...

[Js706 in reply to Lysistrata]

It’s always so annoying when they do that! And I hate it when you have a bad experience at hospital - I know it shouldn’t put you off going in again but it always does.

[Yatzy in reply to Js706]

Sounds a good plan.

Yes, worst pollen season for years, I would say. Very fortunately pollen has not been one of my triggers, so far, though GP tells that can change any time! My daughter suffers with it though and has had to up her meds, cancel her half marathon run, etc this summer. She’s not happy!

[Emily-G]

Hi - sorry you are still struggling. The boredom and inhaler shakes are horrible too.

I had a v lazy day yesterday and today - I do have home nebs for when I need them, am now allowed 4x in 24 hrs, if it’s not lasting or getting worse I have to go in. Getting all 4 in yesterday I think I am feeling benefit today of the rest. My wee boy has football tournament tomorrow tho so not sure how that ll go for me...

Sorry I’ve nothing helpful to add, hope you get a break from this soon xxx

[Js706 in reply to Emily-G]

Glad you’re feeling a bit better - hope it stays settled for you tomorrow too!

I just went downstairs to get a fresh drink and it finished me off, so have given in and managed to get an emergency GP appointment at 5, so will see what they say! If nothing else I might manage to skip out a&e if they decide I need to go in x

[Emily-G in reply to Js706]

Hope your GP is able to help you. If it comes to it and you have to go in hope it all goes smoothly and you come home feeling better. Take care and thinking of you xxx

[lucia_m in reply to Js706]

I think this is a good idea. I’ve been coughing and wheezing for a couple of weeks and put off going to the doctor as I didn’t think it was bad enough - then I had to go yesterday as I’d got quite poorly without realising (or admitting!) it until too late.

I hope your appointment goes well and that you get what you need.

[Lysistrata Administrator Community Ambassador in reply to Js706]

Hope GP was helpful! I ended up there too and got pred. He didn't think was quite hospital yet and I agreed but also . emphasised I am a freak.with no wheeze etc. Guessing that option not open to you if on pred so hope they had solution.

[Js706 in reply to Lysistrata]

It was straight on to a neb and off to hospital in an ambulance. But I did at least get to bypass a&e and go straight to the respiratory unit!

[Lysistrata Administrator Community Ambassador in reply to Js706]

Ahhh that helps, hope they're giving you the good stuff! Am a little jealous of the neb lol, I didn't get offered one... Usual thing about good sats and no wheeze ugh though GP mostly ok and asked what I thought.

Hope you get out soon feeling much better!

[Js706 in reply to Lysistrata]

Felt much better after a few back to back nebs! They kept me in overnight because of my history but everything has stayed ok so going home later today!

Still not 100% but feeling better than I have for a good few days and much happier to be home in bed!

[Lysistrata Administrator Community Ambassador in reply to Js706]

Yay! Glad you're feeling better hope you get back to normal soon and sort out the whole resp vs immunology thing.

I ended up in local A and E on Sat as felt much worse, and had a rather bizarre and unpleasant encounter with a dr who refused to treat me for asthma due to how I presented (usual wheeze and PF plus gas ok), and was rather aggressive about it, including telling me I took too much salbutamol and quizzing me about why I wasn't seen at my local for asthma. She said no nebs and would only treat me for my HR, which was 140-150 as it often is in asthma flares (independent of salb use). Luckily for me, she decided that the best thing for this was IV magnesium sulphate. Oddly enough, my HR did go down along with breathing improving after this! I was in despair until she did the mag, as I felt so crap and she was refusing asthma treatment, though found a chest infection.

Looked it up at home and mag sulphate isn't really effective for sinus tachycardia (though can help with some arrhythmias). Glad she didn't read those papers...

Sorry for slightly random post on your thread but thought I would update...how I loathe going to hospital when they're like this.

[Js706 in reply to Lysistrata]

Oh no I’m really sorry to hear that 😔 that’s so annoying and must have been horrible with how you were feeling!

Glad they did still give you some effective treatment, even if they were doing it for something else! Although I’m as confused as you with the use of magnesium for sinus tachycardia - it’s not something I’ve been taught about.

Ah who knows what they’re doing, but my next asthma appointment is a week tomorrow so hopefully we’ll make some sort of progress then!

Hope you’re resting up well and feel better soon x

[Lysistrata Administrator Community Ambassador in reply to Js706]

Thanks - really feeling like I need another weekend! Hope you're getting back to normal now.

The chest infection was a surprise but I seem able to get them without any real signs or symptoms other than asthma flaring. Apparently that still wasn't enough to suggest asthma - she seemed to be one of those people who sees it all as black and white and yes/no to asthma. Fun and games continued when they gave me a prescription for the hospital pharmacy, then I found it is closed till Monday and they gave me no abx to tide me over, so off to walk in today to swap the prescription. Also got given codeine but my cough went after the mag, so I'm going to go with that being asthma too.

Did I see somewhere on another post that you're a medical student? My understanding/reading of mag sulph (which I LOVE as it usually really helps me) is that it's effective for a) severe asthma, second line b) pre-eclampsia/eclampsia c) premature labour d) some cardiac arrythmias including torsades de pointes - but yep not really for sinus tachycardia, and they have tested. It can lower BP in women with eclampsia and yes my BP was apparently high, but I should hope I don't look like I might have eclampsia!

Hope your asthma appt goes well and progress is made.

[Js706 in reply to Lysistrata]

Oh wow that’s always helpful!!

Yeah I am, and I’m also a massive fan of the IV magnesium! And yeah, those are the things that I was aware it was used for, ah well I suppose we shouldn’t complain about these happy coincidences.

I’m not quite back to normal, nor are things massively picking up but I’m more than happy to manage at home now at least. I just really don’t want to risk going back in so might just shut myself in my room this week 😂 some of my housemates are graduating this year and we’re all going to their graduation ball next weekend! (And at £65 a ticket I really don’t want to lose my money!! 😱)

[Lysistrata Administrator Community Ambassador in reply to Js706]

I think my sanity is glad it's not meant to be used for reducing sinus tachy...I can reassure myself I'm probably not crazy what with the whole normal gas thing, and though my peak flow isn't really that reliable as a measure, I do think it's suggestive that it went up a LOT after the magnesium! ie the HR reduction probably more due to asthma improving which is consistent with me saying (and the dr dismissing) my HR being high with asthma independent of salbutamol.

Really hope you make it to the ball - I so hate missing out on things or the worry that I might! Crossing fingers your hibernation works. How much longer do you have left before qualifying? Must be stressful to do alongside severe asthma/other things going on, though you'll be great with chronic illnesses and puzzling patients when you do qualify, after being on the other side!

I am at home in bed despite breathing being better as I think the infection aspect/lack of sleep has caught up. Hopefully a day should do it haha.

[Js706 in reply to Lysistrata]

Definitely! And my last few attacks my heart rate has also gone down after salbutamol (like you suggesting it was the asthma!).

It currently seems to be working ok, although I had a check up at the GP today and walking to the practice from taxi (practice is sadly in a park!) did whack the heart rate up and sats down a little bit 😂 but thankfully they went to “acceptable” levels!

I was only going to have 1 year left (I took a year out to study psychology) but I’ve had to suspend my studies this year due to all the admissions so now have 2 left.

It’s frustrating but like you say - it’s helpful to experience it from the other side in a lot of ways and I like to hope it will make me a much better doctor (particularly with chronic things!). I also may well end up in asthma I think, I find it all really interesting!