Does anybody else do this

My history I have spent 42 nights in the last 4 months in hospital i will have been out for 6 weeks tomorrow ...

I know the inevitable is me ending up back in whether its tonight or tomorrow ..for the last few days my chest as gotten gradually worse to the point of being on nebuliser 4x today

Even though i know thats where i am heading I am still cooking tea sorting kids ..I cant just drop everything because that will make my stay longer as i will be stressing ..I find if i make a plan of who is having kids what they are gunna ect ..pack a bag ...once i go i will be calmer

My friend as just told me i am stupid for risking my life ..She doesnt live with this I do I am not risking my life while nothing is helping much is helping its lasting 2hrs before needing more ...surely its better to plan rather then dropping everything ..I know i am still at a managble stage pulse is 110 my o2 Is 93

my question doesnt anybody else plan to be in hospital ..obviiously if i improve i wont go ....but i know my body and where its heading x

10 Replies

  • That sounds really tough.

    The only question I would ask is whether you have ever mistimed it before? How good is your judgement of when it's time to go? Obviously from 93% (ish - sats meters being fickle creatures) there's not a lot of wiggle room left.

    Do you ever deteriorate rapidly? Or is it always a fairly slow, steady descent?

    I really feel for you - and your behaviour makes total sense to me, assuming that you can stay safe. Is there another adult in the house at the moment and how fast is your paramedic response? (We live a long way from the nearest emergency help so that's a factor for me).


  • Yes my hubby is here as is my 18yr old son other kids are 12 6 and 3 my 3 yr old as attachment issues due to me leaving her so many times ..I generally just get worse as the days go by ..I tapered my pred from 30mg to 25mg but also stopped the methotraxite ...I am wondering if that's the contribution factor although it never seemed to work ...I have been on predisolone since january my body is steroid dependent and when they taper me i get worse ...Its depressing the shortest time in hospital so far as been 9 day ..the problem is MAU admit me then theres no meds on the correct ward and i get sent anywhere and forgotten about whenever i end up back on the right ward i am home within a few days ...Fedup and delaying the inevitable ...I live in middle of nowhere and once had to wait 45mins but normally there here within 10 mins i have a nebuliser and would do back 2 back nebuliser until they came if i was bad ..I know I should be in BUT a;so know I am managing exersise test showed my oxygen at 88 and they didnt seem worried ..if it goes to 90 i will ring or if i get worse before things are in place x

  • I'm just wondering whether you can ring your consultant now, or your GP, and catch them before the end of the day, and that way maybe they can put things in place so that you won't have quite so much disorganisation at their end when/if you do go in?

  • My gp will phone a ambulance ..send me to MAU ..I rang my asthma nurse who said go MAU or if i get worse ring 999 ..My consultant is on holiday and his secutary said phone 999 if i get worse ...I rang ward 26 explained i think i will be admitted and she said i have to go to MAU first and that they cant put my name on board unless i have been admitted by MAU ..guess its better then a&e there rubbish

  • It is good that you don't have to jump through the A&E hoop first! I have had some really bad experiences in A&E - as I'm guessing many folks on here have (and no doubt you've had your fair share of those in the past). I know MAU can still be awful - so noisy and full of acutely unwell elderly people with dementia who are quite disconcerting... at least in my experience.

    Something that is worth considering - and I'm sure you've already thought about it - is that an admission in the next hour or two is going to be less chaotic than one at 4am. But you know that already.

    I know you're also still just trying to avoid it if possible. Fingers crossed for you that it calms down a bit instead of getting worse.

  • Its your call really isnt it - and while I do understand where you are coming from, I have also experienced asthma that you are describing now, deteriorating in minutes. Not only is that very life threatening, it would be extremely traumatic for children to experience witnessing that. The reason asthmatics should seek help is because it is unpredictable in nature, and coupled with the high threshold asthmatics tend to have for seeking help, makes a risky combination. But Im sure you know all that, and you dont have to explain or justify your decision ;)

  • When my doctor told me that I really needed to go to the hospital, i was at a restaurant near my house. I went home and packed a bag with my laptop, toiletries, and other things I might need if I was in A&E a long time or was hospitalized.

    In my case, the problem was that i was having more severe than normal flares on lots of prednisone and ventolin wasn't working very long and hadn't been for days. (Doctor actually wanted me to go to hospital three days before). The flare that finally crossed the line happened just ten munites after doing a neb while walking to meet my husband at a local restaurant. My doctor didn't think I was stable enough to be at home. But i did manage to get the latest flare calmed down enough that I thought I had time to the hospital in an orderly fashion. It was a risk, but I also know I don't panic easily even when under severe breathing stress.

    I think the important thing is to know your patterns and monitor yourself. Also to have a game plan if things start going wrong in unexpected ways. It sounds to me like you were doing both: monitoring yourself and having an emergency plan in place if help is slow to come.

  • Been to GP today she said i have a chest infection and as told me to go to MAU offered to phone a ambulance I said my friend would take me ...means I can collect my packed bag ...tell hubby what,s what ..They will probably admit me ..but i shall do as i am told x

  • Hope you got on okay and are beginning to feel better. Yes I plan for hospital too (and avoid for as long as possible also). Usually I give the house a clean too - naturally the most sensible thing to do whilst battling for breath!

  • I have a shower and then ring 999. I try to persuade myself not too, but i REALLY hate hospital showers, and its just a quick shower lol! I think that sometimes its the stupid little things we do that keep us a bit more sane when we lose control!

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