Long admission diary

Thought Id start a tread rather than clogging the costa one. 4days into this admission and my first fullblown attack since coming in - had been rough but not an acute attack til about an hour ago. Came on suddenly now on B2B nebs til dr comes up. Heart rate 140 and resps about 27. Sats ok, but usually are til Im exhausted when they suddenly crash. Next patient just sprayed bodyspray which isnt helping! Really hoping we find something to give me some level of control - on 30mg pred plus 16 other drugs!

233 Replies

  • Believe it or not, drs only just came, after repeated calls from nurses and PF dropping to 20%! Now on O2, B2B nebs, mag and hydrocortisone. Nightmare canulating me (I have tiny veins) and likely to have some wonderful bruises after one pierced vein and arm swelled in moments! And I thought the idea of being in here was Im safer as immediate access to doctors when I need them!

  • I have to say - there are times in hospital when i have genuinly considered signing out and going to A&E so i could actually have quick access to doctors!! Its madness how long it can take!! hope you're feeling better soon!! x

  • Sigh : sorry you had to go through that. Hoping you feel better/betterish soon.

    I think this thread is a great idea. Hoping this stay will give you a chance for more stability at home.

  • Soph, I came close to that myself, and it really shouldnt need to be like this. When the drs did get here they were great, but I was in a state I shouldnt have been left to get into, which in turn made the canulaisation etc harder and left me completely exhausted. Glad tomorrows Monday, will feel much safer knowing lovely cons is back in the building! In a way tho Im pleased to have a new 'personal worst' PF, it really highlights how brittle I am at present.

  • So sorry you had to go through that Sparkly, I do hope you start to feel better soon.

  • Hey Sparkly,

    Thank you for starting this thread, I know that I (and probably a lot of others!) are really interested in how you are getting along. Personally I feel as though I can relate to a lot of what you are going through and feeling at the moment, as I am going through very similar, while perhaps not as severe! Hopefully this long admission will help you in the long run, and while it must be SO frustrating at least the admission itself must feel as though you have some control over it. I know that for me, one of the hardest things to deal with, with my asthma is having NO control over what is happening. Not being able to commit to anything and even if you do, if you have an attack there is literally nothing you can do, you HAVE to get help.

    So sorry that it took so long for the Dr to get to you today and that you were struggling for so long!! Were you still on back to back nebs at the time? Your heart rate must have been insane!! At least though you were treated and hopefully that attack has now resolved. I had a vaguely similar experience while I was in hospital 2 weeks aso. My attack hadn't resolved properly, they weren't happy about how my lungs sounded as they were still pretty silent etc, and they were wanting to start IV aminophylline, but I was trying to get home as I was getting really upset and struggling to cope in hospital. On the second night an elderly patient with dementure said something really funny, I started laughing which started me off coughing to the point where I was really struggling to catch a breath, I rang the buzzer and the nurse came, who was really worried as my sats had really dropped and I just couldn't catch my breath. The on call registrar came and I was given IV mag which resolved it quickly. I hate to think about what would have happened if she hadn't though. That said, it was probably my worse and most sudden attack!

    Not trying to hog your thread, just sharing a story which will hopefully be helpful?

    I am glad that your lovely consultant is back tomorrow, at least your mind will be put at ease. Have you any ideas about what the long term plan is going to be yet? How long are you anticipating this admission being? I guess that as fed up as you must be, you're hopeful for more control and a route to getting your life back on track!

    Hugs, and thinking of you!

    Laura xxx

  • Starting to feel a bit better now. No, they didnt B2B me the whole time, but HR was still thru roof and I had deteriorated a lot. They did put me on O2 which helps, even tho a quick check showed my sats ok, monitoring it for a period showed 98 to 76 and back again in no time at all, and when took O2 off it dropped fast. Just had cxray and all ok, almost wish they would find an infection tbh, least would give a bit of an answer...

  • Im expecting to be in about 3wks, but its a bit of a piece of string really. When I was bad earlier and feeling ignored I just wanted to go home, but generally Im resigned to being here as long as it takes. I need to be reasonably stable (Im not expecting miracles or to be asymptomatic) and be able to live a relatively normal life, even if thats still on 3 carrierbags of drugs a month!

  • Well Sparkly isnt feeling very sparkly today. Im still fighting for every breath and Im shattered. Saw dr few hrs ago (not nice cons :-() and contrary to what I was told last night theyre not putting my steroids up so basically Im stuck as I am for now. He actually wanted to take the O2 off me as he says its not making a difference, but Im getting breathless just walking to the loo or holding a conversation. Maybe it is just a placebo effect, but in lieu of anything better Ill take that thanks!

  • Im actually feeling a bit shaken after the long wait yesterday, I keep being told Im safer here, but my PF dropped to 150 against my best of 750!!! They also keep saying I have poor technique in LF tests, even tho my post neb one a few mths ago was 'perfect'. Hoping to have a quick nap now and maybe Ill feel a bit more positive when I wake up.

  • It's hard to have good technique when breathing is hard, I think. Do you know what they were complaining about?

    I found that O2 really made the time between nebs a lot easier to deal with. although my O2 sats weren't bad I felt like I wasn't working as hard to keep them that way. I also found out later on that the night I arrived in A&E I lost about 10% of my hemoglobin so I was dealing with both asthma and sudden onset anemia: my sats looked good but the actual O2 content in my blood was low.

    Did they let you continue with the O2?

  • Yes Im still on 2L O2, not high but enough to make a significant difference. I got a bit tearful a bit ago and a nurse sat with me, I told her I was feeling frustrated and a bit let down, and what had been said re O2. She pointed out that my heart rate was thru roof and was very breathless after a scan even tho still on O2 so she thinks I need it. Shes been lovely actually, bringing me coffee regularly as Im not well enough to walk to the tea trolley myself today (would if I could, need my fix!!)...

  • Thats interesting re anemia, guess it does make sense if blood is too thin then sats may be deceptive.

    With LF said its affected by how much you breathe in - well duh!! Of course it is! And Im not going to be able to breathe in so much when I have 'significantly restricted air entry'!!

    My dad popped in tonight for 5mins (he is a terrible visitor!) but brought marshmallows and gave me some £ so I can buy coffee etc once well enough to go off ward again, helps keep me a bit sane!

  • They are also getting a psychologist to see me, have said its compulsary before any of the next level of treatments (subcut and/or methx).

  • They are also getting a psychologist to see me, have said its compulsary before any of the next level of treatments (subcut and/or methx)One thing I must say tho is the nursing staff and domestics are wonderful, every one of them this stay so far - even one of the doms gave me a hug earlier when I was upset.

  • Kind of makes sense to me. Those are treatments with their own risks. Can't be easy decision to go on them. Did they explain why that's standard practice?

  • Thankfully I had a bit of a better night and managed 4hrs unbroken sleep! Im self-administering my meds so no one woke me to give me a neb, and while I needed it on waking I wasnt in a state (Id have woken if I had of course). Taken O2 off myself and walked to loo okay, so seeing how I go. PF chart is the himalayas but thats normal! At handover the nurse who was here when I was bad Sun told others that my sats are deceptive and to judge more by effort - if he sees that, why cant the doctor???

  • Grrrr. Sometimes I think nurses are a lot more perceptive than doctors, but it stands to reason: they spend more time with patients and their job is to have a second sense about when peole are struggling so they can step in and, well, nurse.

    I think some doctors are more aware than others. When I was in A&E Monday last I overheard the doctor who was seeing me discussing my case with her supervisor. She was very aware that I was working hard to breath and i think was pushing for either more care in A&E or hospitalization. Her supervisor didn't seem to take it on board. I'm not complaining because spending my vacation in hospital wasn't really something I wanted, but I was really struggling and could have used more help. It turned out ok though because the next day when I went to hand in paperwork at the heslth services office I was breathing so badly they had me see a doctor and gave me a double neb and inhaled steroids that helped a great deal.

    Hoping your ward doctor comes round and begins to understand your asthma better.

  • Broncoscopy booked for Fri, 24hr PH for Mon. Still just on 'normal' drugs with nebs upto hrly (self administered) and 2l O2 when I need (again, self admin). Seen top dr who not opposed subcut but wants to try inc bambuterol first, but as tech on highest dose he wants to check how high he can push it. as Im feeling slightly better Im actually more shaken re Sunday, nurses v cross about it too as should not have happened. Bit tearful, not helped by monthly, but holding up for now.

  • Just wanted to let you know I'm rooting for you.

  • Thanks Beth.

    Small things please small minds, and Im am stupidly pleased with the new neb and mask they have given me (the last one kept blocking). Its quieter, far less mist is escaping and the mask is way more comfortable). Doesnt take the asthma away but is a nice little token gesture.

  • Thinl we are in for a long night. Lady opposit, who is emotionally needy at best of times, is having colonoscopy tomorrow and undergoing the awful prep tonight. Its just kicked in (as we are about to eat supper, nice!) and she is crying and fussing etc. Im not good with *that* smell - bleugh!!!

  • Mid attack again, dr came quickly but not being very proactive. Im terrified after Sunday and so yes for once I am definately hyperventilating and crying and very tempted to self discharge, which I know would be stupid but I want my own bed, my own nebs and my own pred. If this attack is going to be the one to kill me Id rather it was at home.

  • Do you have anything you regularly do to help calm breathing down when drugs are taking a while/whilst waiting for the next dose?

    You are stronger than you think sparkly, you can make it through this even if it hard (even if it is very hard).

  • I cant cope with this anymore, Im absolutely knackered and coughing so hard Ive just wet myself. My chest hurts and I can only breathe by arching my back. Soaked through with sweat and canulla threatening to fall out again as wont stay stuck to me.

  • Hugs!!!

  • Feeling for you Sparkly. Where are the nurses/doctors? You sound very alone. Hugs. Sue

  • Oh you poor thing Sparkly you really are having a tough time I do hope you start to feel better soon.

  • Well that was a night and a half! Believe it or not, the doctor never came back after 8pm when he said he would come back in an hour. It was pretty dreadful to be honest and I felt awful. Once again the nurses were wonderful and nebbing me every hour on the hour as well as supplying tea at regular intervals once I could manage it and finding me a fan too. Finally began to ease about 3 and I slept from 4-6 then 6:30-7:40ish. So Im quite shattered!! Waiting for breakfast but think mostly Ill be resting today.

  • Neve came back?!

    I'm so glad you had good nurses. That sounded like a really awful night. Hope the day gives you the rest and peace you so well deserve.

  • The nurses here are worth their weight in gold, they really are. Mine last night is so calm and gently spoken (Zimbabwean I think) and a very calming, reassuring presence. As well as being highly efficient and professional, he also took the time to ask if there was anything I tend to find helpful etc, hence the fan, and when I needed to stand up to breathe he was here knowing I was too wobbly to be left. Planning on asking my sister to get a big tin of chocolates for them when Im eventually discharged.

  • Hi sparkly, I hope you're feeling a bit better now!

    Sorry the dr never came back, nt what you need when you're ill and vulnerable! But glad that the nurses were good!

    Do you know when you're going to see your lovely consultant?

    Huge hugs! Xxx

  • Some positive news at last. Providing the broncoscopy doesnt show anything exciting that demands different treatment, they will start a doubleblind trial of subcut terbutaline either Tues pm or Wed am (after 24hr PH). And providing Im well enough I can get day release at the weekend too, either day or both just not overnight. Looks like the 3wk stay Ive tried to be mentally prepared for will be about right, possibly a couple of days earlier if subcut works and I get the hang of it. So fingers crossed.

  • Hope you are feeling better now Sparkly.

    Just wanted to send you a hug and encouragement to keep your chin up and don't let anyone get you down.

    I know this planned admission seems like a long slog but it was the only way I got some initial control over my asthma and then it gave me a solid base on which to build up even better control.

    My daughter has just done another PH study (she is 5) and I was telling her about you and she said you just need to be brave when the 'choob' (so cute how she says tube) goes up your nose then the rest is easy!!

    Anyway, thinking of you x

  • My last post was referred for approval so I wont repeat it and hope it eventually comes up! But we have a plan which sounds pretty good. Week into this admission now, 2wks or so to go and aside from last night Im holding up okay. Allowed home for the day but not overnight at the weekend which will be nice.

  • Oh bless your daughter fb! Thats so sweet. Ill be as brave as I can, and resist the urge Im expecting to pull it out early! Thats going to be worst for me I think, having it there so long.

  • Ah good, referred post now up. Had a pretty good night last night, slept 5hrs unbroken and about 7 in all - all without O2 - yay!!! Tight and coughing a bit but nothing unusual. Another bonus is my blood sugar is okay this time, they had been very worried about it back in June. Now it doesnt mean Im any less close to being diabetic, but at least Im managing to keep it down by being more careful with what I eat. Clinging to the positives!

  • That's good news sparkly, glad you're feeling more positive, it's tough being in for so long! Hope your drug trial goes well and it works for you :) bit puzzled about the double blind and how it can be, as both you and the doctors know what drug you are having?

    The 24ph study I've had twice - not my favourite thing but once the tube is in, it's bearable - so do you have to have a bronchoscopy too? They are being really thorough, which can only be good :). I really hope it gives everyone some answers and you some better control, hang in there :)

  • For the trial its 48hrs with the drug and 48hrs with a placebo and neither I nor drs will know which I have first. Im a bit anxious that, becuase this is basically the last chance, that anxiety itself will trigger symptoms, but Im sure thats not too unusual?

    They are being VERY thorough! The top cons is very involved with research (name all over papers online etc) which is a bonus and possibly why I havent had to fight for the trial, funding etc.

  • Bit nervous about the broncoscopy, not the procedure itself but what sedation they use. I need to ask when I see dr today as Ive a feeling it might be midazolam and that actually sends me hyperactive rather than sedating me - I had it for dental work and apparently refused to lie down and kept pulling the drill out of my mouth!!

  • Brilliant :) I'm sure you will be fine, just keep in your mind that all that they are doing is a really positive thing. Given the stress you've been under already they will have a good baseline which included you experiencing anxiety! Good luck with it, fingers crossed it helps x

  • Well I must say Im exhausted today! Thankfully Ive felt fairly well as Ive had a stream of people - drs, priest, med students, the lovely resp nurse and just now a friend! The med students are 3rd years and were sent to me because Im such an atypical case! They were very nice actually and no problem. Have my 4th canula of this admission and finally theyve banaged it so theres a chance it wont fall out - I NEVER manage to keep them in somehow! First on list tomorrow so least it will be over quickly.

  • Just been asked if I want to be woken for an early breakfast tomorrow as Ill need to be nil by mouth after. Somehow I think Id rather go without than be woken at 2am!! Anyway, my mouth is really sore as for the first time in 25yrs of taking various puffers Ive managed to get oral thrush :-( think it must be from the change of routine - usually take preventers just before I brush my teeth. Been given something for it so hopefully will feel better in a day or so.

  • Also had some interesting and very important info. Its a good job I cant take theophylline as my cons found out today its dangerous to have it while on roflumilast! I guess these 'discoveries' are going to come up now and again when youre on off license drugs that wouldnt usually be mixed anyway, but glad I know as I was close to accepting iv the other week even tho it makes me ill as I felt so terrible!

  • Also had some interesting and very important info. Its a good job I cant take theophylline as my cons found out today its dangerous to have it while on roflumilast! I guess these 'discoveries' are going to come up now and again when youre on off license drugs that wouldnt usually be mixed anyway, but glad I know as I was close to accepting iv the other week even tho it makes me ill as I felt so terrible!

  • I cant get to sleep tonight even tho lungs are being relatively well bahaved. Im nervous about the morning, plus theres an awful lot of snoring, beeping, buzzing, banging etc going on! Have my curtains pulled shut as I usually do at night and trying to rest but not having much success :-S

  • Sorry to hear you can't sleep I was told something that might sound daft but it worked for me .

    Shut your eyes Imagine your in a circle with about 8 other people,watch each one yawn , apparently it's a reflex that makes you yawn and let's your brain know its sleep time therapist told me that

    Hope it helps

    Veronica xxx

  • Hope you finally got to sleep - wishing you all good news for the brochioscopy - and a quick recovery for your throat!

  • Broncoscopy done sucessfully but I didnt cope with it well at all so it took a long time and Ive got an extremely sore throat and headache. I panicked a lot and although they gave me sedation it didnt have much effect (Im known to be hard to sedate) and 4 nurses/med students held me down. I was given the option to stop but that would have meant going through it all again which I really couldnt face. Sats crashed to 69%!!! Back on ward now with tea and lots of biscuits then hopefully sleep. Glad its over.

  • Sparkly

    I know I haven't been coming here long but I am sending you a big ((((( HUG )))))).

    I don't know a lot about your asthma but I do know about panicking and it's horrible, I've suffered for 30 years ( on and off )

    Hugs fluffy xxx

  • Oh sparkly that sounds awful - reminds me of when I had gastroscopy with no sedation and was held down. It was horrendous! I'm sorry it was so rough, I hope it turns out to be worth the trauma in terms of giving you answers. Luckily my lungs are too crap to have one LOL - it's the only time I've been happy to have crap lungs! Feel better soon x

  • The earliest results are 'normal' which is what was expected. Ive had a couple of hours sleep and feel a bit better now. Sats still not perfect - 95% on 4L O2 - but managable. I really want to pop to the shop but dont think Id manage that long off the O2 at present. Lovely resp nurse popped by and was a comforting presence as ever but of course shes busy as Friday is kicking out day as far as possible so lots of people to see. She did bring me chocolate biscuits though :-D

  • A student nurse from the ward had come down with me this morning and was in observing the procedure. She is clearly a bit shaken by having seen it and has just admitted she felt helpless seeing me so distressed, but I told her I was glad she was there, that even though she was just watching it did help having someone I knew in the room while it was all so awful. Nurses have been very attentive since I got back to ward, especially once they knew Im not having any visitors today. They are so good.

  • Gosh that sounds awful! Hope you are feeling a little better now its all over. X Sue

  • Not feeling so bad now thanks, slight fever which I was told might happen, and coughed up a little blood. Chest hurts when I cough and throat v sore but have been given decent painkillers which are helping. Dr was very appologetic, tho he didnt do mine he does do them and said was sorry I had such an awful experience. Im allowed to go out for a couple of hours tomorrow if I feel well enough and all day Sunday, so cut 02 to 2L to hopefully allow me to be off it in the morning.

  • My 3 roommates all went home today and have 2 new ones so far. Its quite hard seeing people come and go while Im still here and will be for at least another 10 days, but as Ive said before, the staff are amazing. I also make a point of getting off the ward every day I am well enough even if just for 15mins, helps keep me sane.

  • Felt really good this morning, had pulled O2 off at some point in night but not sure when, think must have been quite late as sats were 100%! Not needed it at all today, tho PF steadily dropping. Have 2 new room mates, both nice enough and quiet which suits me well. One is a 92yr old lady, bright as a button and a holocaust surviver - she was explaining why she had been older than usual marrying. She is very sweet and clearly in pain but doesnt like bothering the staff. I bring her tea when I get mine :-)

  • Chest feeling tight tonight and coughing but sats ok and not needed O2 today - good as Im getting day release tomorrow and obviously couldnt on O2! Following awful broncoscopy experience Im more anxious over ph test so dr has prescribed me valium for Mon, just to take the edge off my nerves. Anxiety levels generally increasing, I so desperately need some control and feel like its make or break time, Im pinning all my hopes on the subcut and am terrified it wont work.

  • Goodness me its noisy here tonight. The old lady in the next bed is clearly in pain (not a resp patient) and another lady is groaning and snoring at intervals, both loudly! A guy in the bay next door is vomiting every time he coughs and the ward phone keeps ringing!!! Im fairly sure my day at home tomorrow will mostly be spent sleeping, bit of a waste but will hopefully make next week more bearable if Im well rested. My throat and chest still hurt after yesterday, still taking co-codamol for it.

  • On a more positive note, its the first night since I came in that Im going to bed without a single drip/canula/wire/O2 nasal specs attatched to me. If it wasnt for the noise, I might have had a chance of a good nights sleep!

    Must admit Im getting paranoid about germs now, using the clenill wipes on the loo and door handles, alcohol gelling my hands etc. Not usually so OCD but there are too many ill people about for my liking!

  • Glad to hear of the good breathing day: hoping subcut works out for you too and that you have a good day out tomorrow.

  • Im halfway through my day at home and enjoying it, but a bit tearful and not looking forward to going back in this evening. Im dreading the ph test, my throat is raw and hoarse from the broncoscopy and Im still upset when I think about it (yes, I know Im a wussy!). Its hard being 12days into the admission and still feeling as bad as ever too - no drugs changes yet. Im so tired and beginning to wonder if its worth the effort, esp if the subcut trial is a failure.

  • Aww sparkly :(. The 24hr ph test is nowhere near as bad as a bronchoscopy, I've had it twice. It's (the tube) a bit uncomfortable but tolerable once it's in, it just makes you gag a little bit having it put in. They were really good at taking it slowly when I had mine and very reassuring. I hope it goes okay xx

  • Wussy is one thing you are definitely NOT. Anyone who puts up with as much asthma trouble as you do could never qualify as a ""wuss"". In Hebrew I'd call you a g'vurah - it means strong woman or heroine, but it isn't an easy to translate word. So often we think of heros as people who seem to skate through life without a worry and total self-confidence and that isn't the kind of hero it means. Rather it means the kind of hero who handles situations that aren't clear and easy victories. As an example, think in terms of David taking on Goliath, or Yael serving her enemy Sisera hot-milk and then waiting patiently while he fell asleep to stab him to death in order to protect herself. Not the sort of situations anyone copes with easily but still they got done what had to be done and you do too.

  • Thanks Beth <3

    Just cant believe how low I feel today, really thought a day at home would do me good but I just want to cry. Doesnt help that my sister has given me a lecture on my weight and how I need to stop snacking while Im in. She doesnt seem to understand that Im finding being in very hard. For perfectly good reasons I have very few visitors, and sometimes when everyone else is surrounded by friends and family I need to escape the ward and get a coffee that tastes like coffee rather than cat wee!

  • HUGE *hugs* sparkly, really am thinking of you!! It can't be easy any of this. Being in hospital, being at home or being at home knowing you need to go in or back!

    I struggle with 4 day admissions let alone as long as you've been in, and I know it was an elective admission, but somehow I think it's equally as difficult!

    I can empathise with you not wanting visitors, as there are very few people I will allow to visit when I am in - they either worry or don't understand why in not allowed to go off the ward initially etc.

    I think you're doing amazingly, hold in there, I hope it's worth it and that it helps you get some control back!!

    Loads of love and hugs! Laura xxxxx

  • Oh dear, hopefully your sister will soon realise that this is a really tough time for you and that your priority is breathing and trying to get some sort of control back over your asthma and that weight is quite far down the priority list atm. I hope the ph test and the sub cut trial go well. Sending you some feeling strong vibes and virtual hugs xx

    Addition- Thank you btw for sharing your experiences of your long stay and helping me understand even more about asthma. I'll be thinking of you and routing for a good outcome.

  • Back on the ward now, arrived back to a lovely welcome from both staff and other patients. Strange tho it sounds, a part of me is glad to be back - hospital routine might not be what I really want, but at least it is a routine for now. PF well down tonight tho not coughing too much, throat still dreadfully sore from broncoscopy. Just want Wed and subcut trial to come now, really need to know if this is going to be my magic wand.

  • Sparkly - just caught up on all this - massive hugs! It doesn't sound like much fun at all; I know that in my very brief stays I have been really keen to get out and that's without horrible attacks and nasty experiences.

    I really hope this admission does help you with the subcut trial and that you get some more control soon. I'd agree 100% you are not being a wuss, it's a hell of a lot to cope with and think you're doing pretty well. I'm so glad you have nice nurses!


  • Id be so lost without all the support Im getting here. Im 33yrs old but all I want atm is my mum, but I cant tell her as shes just had major surgery last week - and I cant got to her because Im here. Im sure theres light at the end of the tunnel, there has to be, but it seems to be a rather wiggly tunnel so I cant see it yet.

    On water only from 6am ready for ph test at 12. Being woken at 5:30 for breakfast and delaying alendronic acid as no intention of waking at 5 to take it! Days in hosp are long enough!

  • Just had coffee and toast, now on water only til after the ph probe is put in at about 12. Feeling know Im being given valium beforehand to take the edge of the nerves - I hope! Was quite quiet last night and with earplugs in I slept reasonably well, going to try and sleep a bit more, it fills the time if nothing else. Hoping to see my lovely cons today, she doesnt really do any in patient work but sometimes makes social calls. Please not having methx as means I can stay with her once I escape.

  • I hope that the PH probe is now in place and you are still feeling okish.

    Thinking of you and wishing you all the best for Weds.

    Take care x

  • Yes probe is now in, it was unplesant but not so bad as I had feared. The 2 drs there were both really nice and have told me if it really becomes unbearable I can just take it out, but I think I'll be able to manage. Relatively well today actually, PF highest its been in several weeks. Strangely, I dont want to be 'too' good over the next few days tho, so we can really see whats going on!

  • Glad you're ok today. Can't really offer any advice but have been thinking of you. I feel low when confined to the sofa so not surprised you're not enjoying being in hospital, but hopefully it will help improve things for you.

  • Well, sometimes it takes hearing about someone else's situation to put your own in perspective. The woman opposite me is about my age, and just moved here from Egypt 3mths ago to escape the awful situation there (her sister has been here years). She is married with 2 lovely young children and came in with a tummy upset that wouldnt clear. Today she has just been diagnosed with bowel cancer. The poor girl is understandably terrified and I hope and pray things work out for her.

  • After one of the best days Ive had in ages, my lungs are having a strop again! Not the worst or an acute attack but PF way down and coughing. Actually think this probe isnt helping as its making my throat mucousy (sorry!). Not remotely ready for sleep so finishing the socks Im knitting and looking at patterns for my friends baby - getting loads of knitting done while Im here :-) Still anxious about the subcut trial but know it will either work or it wont.

  • Just had the probe removed, nice to be free from it but it wasnt nearly as bad as it might have been. Had a rough night, both with grumpy lungs and A LOT of noise on the ward, an insane amount in fact and completely unnecessary but nevermind. Waiting to hear now when the subcut trial is likely to start, have a bad feeling its going to be delayed for some reason but hopefully not. Very tired, lunch shouldnt be long then I hope to sleep for a bit. Will post again later when hopefully have more idea.

  • Ive been here 2wks tomorrow, still no proactive treatment and no confirmation that subcut trial will begin tomorrow. Feeling frustrated, restless and today, driven half mad by my wardmates! The bay is now me, an Indian lady in her 40s who is nice enough but never off her phone and 2 elderly Polish ladies who are both unbelievably 2-faced (does anyone else find old ladies tend to be like that??). Im the only resp patient, others are gastro, and while not contagious, lets say its a tad smelly at times :-S

  • Id shut myself in with my curtains earlier for some privacy and missed the resp nurse who assumed I was asleep, but 2 friends came and we had quite a laugh, really brightened my day, but I felt more low after they had gone. Do hope I get some sleep tonight, think being overtired isnt helping my mood today. Lungs have the hump like the rest of me but not having a full blown strop - yet!

  • Yes I always find things much harder to deal with if I'm tired. Hope it quietens down a bit for you and you get some sleep.

  • Love the sound of the knitting, it's something I do too when I have to sit still (as long as my shakes aren't too bad), I haven't mastered socks yet though, I can't turn the heel. Have you decided what to knit for your friends baby. Last night was noisy for me too, but will be a much quieter night at home tonight. Hope it's quieter for you tonight too.

  • Hi sparkly, hugs!!! I don't know how you're coping! My admissions have all been relatively short compared to this one you're going through, and while I know it was elective, I can't imagine that is is easy! I know I spend the whole time that I am in a total emotional mess! From the moment I get into hospital to the min I get home and even then tend to have a huge cry on my mum. I don't sleep and can't settle to anything, am always too tired to and then this makes my mood even worse! Turned into a bit of a rant (as again dodging - have had far too many nebs today, should really probably be doing something, but start a new job tomorrow and really don't have time! Hoping the antibiotics and even higher dose of pred calms stuff down!!), but wanted you to know that I really am rooting for you!! And that I can empathise with what you are going through!!

    Hopefully you will get to start the subcut trial tomorrow, sure that mentally it will be better when you start that as you won't have the anticipation of whether or not it will work, which I am sure doesn't help things! Also you will feel as though they are doing something proactive and you'll feel less in limbo!

    I'm glad you haven't had any really serious attacks really! I find though that it's Sod's law that once everything has settled down you're fine whilst in hospital!! Though last time I needed aminophylline on the second day, but that was my own silly fault for leaving things too late! I also know that because I am seeing my cons next week will mean that I have at least a few good breathing hours on the day as my lungs likely make me feel a fraud. But then have one up on them as he has seen me ill - god I'm going insane!!

    Sorry for such a random post!! But huge hugs and really am thinking of you!!

    Laura xxxxx

  • Ah Laura you make me smile - the whole wonderful community here does :-) I do hope you get a reasonable night and the new job goes well.

    Thankfully (I think) my lungs are still fairly miserable, would be just my luck they behaved themselves while Im in! I am worried that being as brittle as I am at present I'll end up having really good days when I have the placebo and rubbish days when I have the drug, but worrying wont change anything I know, what will be will be.

  • Still got unbelievably sore throat, the ph probe irritated it even more after it was already sore from the broncoscopy (and worse because I cried through it!). You cant imagine how much I want to go home!

  • Sparky, Sorry to hear about the sore throat.

    I totally get the ""my lungs are so unpredictable, how can you know if the results were because of the drugs or because my lungs are in a happy mood"" thing.

    I'm sure poor sleep isn't helping your mood any - so hoping tonight is quieter than last night.

    Hang in there, thinking of you!

    (PS. your earlier comment about cat-pisss coffee gave me a good laugh - hoping you've gotten some decent coffee today or at least a platable cup of tea.)

    Laurs, good luck on the new job. Hoping nothing breathing wise gets in the way for you tomorrow.

  • *Sigh*. Broncoscopy results arent back, and while no-one is expecting them to show anything exciting, they're not going to start the subcut trial until they are. So another day of just sitting here and no progress. Very frustrated and trying to decide if Ive got the breath to go down to the shop for medicinal chocolate.

  • Really sympathise with how frustrating it is sitting waiting. I'm doing the same today so will be here if you want to chat. Thanks for the sympathy on my thread, sending some back to you!

  • Im still feeling rather deflated after todays disappointment, but had 3 visitors today which kept my mind off it a bit. One was my brother, totally unexpected as he just happened to be in London so popped in. Have been written up for another drug but no-ones told me about it yet! Had to go to LF, walked down to save waiting for porter, and when I got there they only did ENO - what a waste of energy!! Hey ho. Other 3 in bay all have visitors, and none speaking English so feel a tad isolated just now.

  • Sparkly-

    Poor you! I feel for you! Still no idea of when you can be discharged? And I'm glad you had some visitors, however i also know it's very hard having to depend on other people, visitors, nurses etc.

    I'm still in hospital too, been 2 weeks today and they want to keep me in at least another day. I got moved from the 2-bed bay I was in yesterday as my neighbour contracted MRSA. Lovely.

    Really hope they can let you go soon! Keep your chin up!

    Annie xo

  • Oh Annie Im sorry to hear youre still in too, hope you get out by the weekend! Im looking at at least another week, and thats assuming the trial starts tomorrow and works! If it doesnt, well goodness knows! Only saw dr very briefly today, when he told me the results werent back, so tomorrow I will be needing a proper chat with him regardless as I feel like I have to remind him Im still here and waiting to start! Doing my best to be patient but finding it tough.

  • Had a strange night last night. Got to sleep around 11, earliest since I came in, but was awake and breathless by 2 and again before 4. Both times it settled with about 8 puffs of salb, but by 6 I needed a neb. PF about 35% pre neb and 50% after, symptoms not really matching this but I guess thats because Im just sitting about not doing much rather than living my normal life. Hoping dr comes soon, want to know whats happening re subcut. Im desperate to start it - need to know if its my Magic Wand!

  • Sorry you had a bad night, hope the doctor comes soon.

  • Doctors just been round, biopsy results from broncoscopy still not back so they wont start the trial until at least tomorrow. Feeling completely fed up. They said theres no point starting it if in fact they need to increase the steroids, but for 2wks theyve insisted theres nothing to suggest they need to increase the steroids and I should be reducing!! Desperately want to get off the ward and go for a walk but just dont have the breath today and dont want to land up back on O2 if I can help it. So upset.

  • How frustrating. Can you try to doze? You must need sleep after being up in the night.

  • Im resting on the bed now, expecting a visitor about 4 so need to save some energy for then. Lovely resp nurse just came round, ended up laughing too much and triggering major coughing fit. She usually does that to me but its worth it, shes so good for my morale. Chest is very sore today so dr prescribed me stronger painkillers and told me not to be afraid to take them, that until we can do anything more proactive I should do all I can to keep myself as comfortable as possible.

  • Hope you manage to get some rest before your visitor comes, sounds as if you are being well taken care of.

  • Stopping in for a virtual visit :-)

    Hope you had a good real-life visit with your friend.

    My husband is very good at making me laugh when I'm feeling down and frustrated, especially about asthma. I completely agree with you the laugh is worth the coughing fit that often follows after.

    I also sometimes am surprisingly symptom free even when I have scary low PFs - I also think it might have to something to do with being at rest Normal tidal breathing doesn't require all that much air, so if you are sitting still you can often manage even without a lot of air flow. Still i find it confusing. Maybe the low PF isn't so much of a problem on its own. It is more a case that if something triggers a bronchospasm or requires us to up the activity level we don't have a lot of fudge room?

    Hoping you get the test results soon and can start the subcut trial. This waiting game must be so annoying.

  • Still dont know whether the results are back so no idea if trial will start tomorrow. Ph results show what they consider tentative correlation so theyve upped lansoprazole and added in ranitidine, but Im really not convinced as the worst symptoms were at a prolonged time on low acidity, I think its more coincidence - you can make statistics say whatever you want them to if you try, but I'll take them for a while to see.

  • Another wardmate (the constantly on phone one) has gone home, 2 elderly Polish ladies still here and new one come in, havent seen her but seems younger. Unsuprisingly, shes another non-English speaker. Maybe by the time I go home I'll have had at least one English wardmate who I can chat to!

  • Hugs sparkly, you must be feeling really frustrated! I know what you mean about worrying lungs won't play ball, I always feel like I can guarantee a good few hours when seeing any dr! My medic friend noticed a wheeze tonight when I was coughing - I did too - not sure why I can never reproduce that in front of drs?

    I hope you get someone you can talk to soon - the first time I was admitted I had lovely bay mates and it did make it easier as it was my first time in, I wasn't expecting it and found it a bit hard to get my head round.

    Laura has asked me to pass on hugs to you from her and to say she'll be your virtual wardmate! She's waiting to go to MAU atm.

  • Thanks Philomena, and poor Laura :-( I do hope they manage to get her stable - its knowing how desperately I need stability thats keeping me here when every bone in my body wants to discharge myself. That said, this long admission, while horrible, is causing me less stress than the run of brief ones Ive just had.

    I do hope I didnt sound racist, Im not at all, just find it isolating when they dont speak English and have dozen visitors at a time.

    Lungs grumpy tonight, tight and painful, so cant settle yet.

  • Your comment about English reminded me of my stay in May: I was in a room with two Hebrew speakers and an elderly woman from South Africa who only spoke English. She had been in hospital for weeks with a thyroid problem and had had no one to speak to. It was very isolating for her: both according to what she told me and according to what a nurse told me about her. The nurse aaid it was really good for her that there was another English speaker in the room. There were unfortunately times when I was really too SOB to speak comfortably, but at least I could listen and she knew I understood what she was saying.

    Hoping lungs will settle down and let you sleep tonight.

  • Had a strange night, lungs misbehaving had me awake and struggling several times, but in between I slept okay. Was just woken for obs and felt okay but now Im sat up (with tea, lovely nurse today!) Im feeling pretty bad again, tho choc digestives are helping!! Keep telling myself nothings going to happen today, so if it does its a bonus, but I know I will still be gutted if the results arent back. New patient is younger, my age or a bit less Id say, and Indian Id guess but havent spoken to her yet.

  • Getting up wasnt a good idea! Have coughed non stop and chest very sore. Still havent seen doctors but they are about, think theyre seeing those likely to be discharged today first. Turns out new girl is actually very young, 19 or 20. Her mum is here already (visiting starts in 4hrs time!) and theyre speaking their language, 2 old ladies are chatting in Polish. Once again, Im feeling isolated.

  • At last! The subcut trial will be starting this evening and will be 5 days in all - 3 of drug, 2 placebo. Im quite anxious, I so desperately need it to work, and still worried it will mask my symptoms but its out of my control so I just have to go with it and see what happens.

    Young girls mother has kicked off over something so shes being moved to sideroom, must confess Im quite jealous, Im so desperate for privacy and quiet and going to be stuck here another week by the looks of things.

  • That's brilliant, at least you won't be stuck waiting any more. Hope you get a new neighbour you can chat to.

  • Glad to hear that things are finally moving forward. Hoping that the timing is right and you will feel at the end of things that it was given a fair test.

  • Just had full LF so feeling shattered now. Im not expecting any visitors today so just having a coffee then hope to nap. All being well I can pop out tomorrow for lunch with a friend, then home for the day Sunday, albeit a shorter day as will need to be back ready for the next days infusion. As long as I get a bath and some sleep its worth it!

  • Really hope it's a success and it's that magic wand xx

  • And we're off!

  • Good luck, hope it goes well!

  • Best of luck Sparkly, I really hope this is your magic wand! Xx

  • 2 and half hrs in and Im fairly sure I have the placebo, I hope so at least cos if its the drug its not helping! The syringe drive for the trial is a big cumbersome thing and Im just trying to work out how to sleep with it!

  • Poor you! How long have you been in hospital for now? I guess all you can do is wait and see if it starts to kick in.. And as for sleeping, I don't have many suggestions, just sort of try and be still? Sorry!

    How many people are in the bay you're in?

    P.s. I'm still in hospital too, they're considering transfer to the royal Brompton OR simply waiting till I'm discharged, then referring me as an outpatient. Don't know which yet, hopefully the second option.

  • This is my 17th night and looks like another week. Cant settle again, ward very busy as lots of people went home today so new patients arriving (not in this bay but can still hear it). Theres 4 of us in this bay, new lady is about 45 Id say, came in about 2pm but has been asleep mostly so not talked to her yet.

    Having trouble with the sticky dressing holding needle in, nurse put a 2nd one on. I always have trouble keeping canulas in so guess its no suprise. Will be trial and error I suppose.

  • Hope you managed to get to sleep and are not too uncomfortable.

  • You must've gone in on the same day as me then, it will be 3 weeks on Tuesday.

    There's 4 in my bay too, one was transferred to the Brompton last night- a 94 year old woman- and they didn't transfer her till midnight!

    How was your night in the end, did the needle stay in place?

    Hugs x

  • How are you this morning sparkly?

  • If I currently have the placebo then the trial is going well! Im feeling pretty rough, tight and coughing. Heartrate down slightly which would make sense as obviously stopped the bambuterol. Coping fine with the needle and syringe drive, nurse is replacing the sticky dressing regularly as it keeps lifting, hopefully this evening there will be time to try different ones but v busy on the ward. Very sadly a man died a couple of hrs ago, staff did their best but he didnt make it. Family devastated of course.

  • May not be much help depending on your needle set up but I have found the best way to keep the dressings on is to apply one clear dressing first then needle through that and then second clear dressing (mine come with two dressings one a bit smaller than the other I,ve found larger one on the bottom & smaller one over the top works best for me personally) over that. Worked wonders for me because at one point nothing seemed to stick to me!

    Random tip for later or in really hot weather I have found applying tincture of benzoin (sold as friars balsalm in the chemist) then the dressing makes them stick like glue- but patch test first as it might not agree with everyone :-) & my god it sticks so might require baby oil to get off the sticky residue after.

    Hopefully that might help as getting the dressings to stick was my main problem!

    Hope sub cut turns out to be your answer :-)


  • Thanks for the advice, *if* this works for me I'll give it a go. Im awful for things not sticking though so maybe superglue might be the answer!

    Just started day 2 and unless theyre intentionally tricking me (which I dont believe) theyve accidentally let me know what this lot is. Will wait and see if it confirms my suspicians about the first lot...

  • Sorry to hear about the man dying, that's a horrible thing to hear happen. Was in A&E with a relative a while ago when someone died and it was the most horrendous thing I've ever seen, the family were totally beside themselves.

    Sounds like the trial is going well if your suspicions are right.

  • What infusion sets have they given you?

    I use mefix over the top if mine start peeling off ...


  • Hope that things are going well for you Sparkly :-) hopefully with you thinking that you know what you have been given and possibly now noticing a difference is good? Sending you huge hugs xxx

  • Clearly they werent tricking me, this *must* be the drug. Breathing not noticably different yet but my feet are twitching and deformed with cramp and face a bit flushed!

    Another emergency in the next bay, another crash call and this time intubation and transfer to ITU. Feeling quite shaken by it actually, and cross with my elderly neighbour who was just unbelievably rude to the nurse for making her wait 5mins for her paracetamol!

  • Just checking in - hoping you get a good night sleep with no further excitement or sorrow either for yourself or those around you.

  • Was meant to be having the day at home again today but when I got there I just found it too difficult emotionally, I couldnt settle and was very tearful, so I just went to Mass, had a bath and came back here. It had taken me so long to be willing to have this admission, to get my head around how long I'd be in and accept this as my current normality that I was afraid I'd end up not wanting to come back. Feel calmer here strangely, but do hope I'll soon be home for good.

  • Not really feeling benefits from the subcut, but need to talk to the dr tomorrow as the dose Im being given is less by far than the equiv bambuterol I was on until a few days ago, so maybe I'll feel worse on placebo days rather than better on drug days, if that makes sense??? Needle causing occasional tingly pains but nothing major, it will be moved this evening anyway. The bigger sticky dressing has stayed put, even with having a bath, so will try to have big one again tonight.

  • Duty doctor has just popped by to see how Im doing/check theres no problems etc. (shes a stunningly pretty girl too, with fantabulous eye make-up, I *almost* have a girl-crush!!) I raised my concerns about the very low dose, esp as it works out lower than the bambuterol Ive been on, and she says we should hopefully see a difference between drug days and placebo days, even if its that Im worse on p days rather than better on d days.

  • Good that doctor has reassured you, hope you have a quiet evening.

  • I can understand being home being hard, though I imagine the reasons are probably different for everyone. For me, if I were in your shoes, it would be a so close and yet so far feeling. I don't think I could let myself settle because it would only remind me how hard it is being in the hospital and making going back all that more painful. Whatever your reasons, just wanted to say I'm thinking of you.

    Glad to hear you got to go to Mass. I really think it is important to take care of oneself spiritually in these situations. In Hebrew and in Jewish tradition, when people are ill we say to one another ""Refuah shlema"" (complete healing). The idea is that healing isn't just about the body, but about everything it connects to: how we live our lives, how we feel about our situation, how it impacts us.

    ""Take care of oneself spiritually"" sounds like I'm turning spirituality into some sort of ""self-help"", but that isn't what I mean. Personally, I don't believe we're alone in any of this, even when none of it makes sense and we feel very much alone with no good answers. Prayer and ritual give us a chance to find the insight and inner strength that comes from not just believing in something but feeling something in our gut.

    Hope you have a good night and that the sub-cut trial brings you closer to a solution, whatever that solution may be.

  • Youre absolutely right Beth. My faith is so important to me, it gives my suffering a meaning and a point and makes it bearable. I also believe absolutely that God wants me well, and that keeps me going, looking for the treatment that will at least improve my QOL even if its not a complete cure.

    Having a rough night, just given in and having an extra neb to give me a chance of some sleep. My mouth is also terribly sore again - had got better for couple of days but worse again and sooo painful!

  • Lungs not at all happy today, just had 2nd extra neb since 4am. Havent seen dr yet but going to ask him if there is any chance I might have an infection that just hasnt shown up on cxray, my left lung is sore and Im still taking painkillers, really hurts when I cough too.

    Got the needle in my thigh at the moment and finding it far more comfortable than my tummy, probably because my thigh doesnt move/bend etc the way my tummy does! Still keep losing the tegaderm but have been given some so can change it.

  • Hi, just checking in quickly to see how you're doing? Noticing much with the subcut trial?

    I've tapered down on the steroids today, but pf lingering at 50% and have a stinking cold so not sure it's entirely sensible!!

    Any idea when you're going to get out yet? I understand where you're coming from with how you were feeling yesterday! But glad that you made it to mass - I always feel psychologically stronger after attending mass, just don't go often enough!

    Laura x

  • Hi Laura, sorry to hear about the cold :-( What dose of pred are you on now? Im still on 30 but plan is to taper slowly to hopefully 10 and that will be maintenance.

    Not really sure about the subcut, as I said yesterday the dose is v low - had hoped I'd have dramatic response but thats not happening, that said some days have def been better than others, so maybe there is some success? Will just have to see at the end of the trial. If it works I *might* be home by the weekend. If not, who knows???

  • Hey sparkly - didn't you say it was a double blind trial? If so, neither you or staff should know what you are getting in your subcut.. Including dose... Seems odd! Hope you do get some good results from it soon - fingers crossed :)

  • Yes, I was *told* it was double blind but its not, its barely 'single blind' tho someone less alert than me possibly wouldnt have noticed some of the things I have! I knew by 18hrs in it wasnt double blind from something the duty dr said. That said, while I have strong suspicans of what Ive had when, Im only more or less certain about one day. Will have to wait til Thurs at least to know for sure.

  • Another rough night, had extra nebs at 2am and 6am. Old lady next to me had a panic attack about 4 and was shouting that she was dying etc, took her a long time to calm down and settle again, bless her. So far this morning the atmosphere is nice and calm, long may it continue! Unless things change from what I was told yesterday, 'lovely cons' is coming to see me today, so Im looking forward to seeing her. Needle moved in night and leg bled, but have sorted it out and its ok.

  • Sorry you had a disturbed night, hope you got to see cons and had a calmer day.

  • Yes, saw my cons and was glad to - hadnt seen her in over 2wks, a lifetime by standards of last few mths!!! She said 'I hear youve figured out the code for the trial' and I laughed saying while Id suspected, it was only the drs reactions that actually confirmed it! Last 2 have been unlabelled so cant be sure but fairly sure the one just finished was placebo, meaning last one would be drug, will see what my lungs feel in couple of hours time, please God it cant be worse than it is now!!

  • She will see me again Thurs when we will go through results etc and see where we go from there. Said I might possibly get home Friday, but while Im keen to get home, Im also determined not to go unless something has improved - I am not prepared to go home no better than I came in (remind me of that on Friday if necessary!) or else this whole admission would have been a waste of time.

    So tired tonight, hope so much I'll have a better night as have been very tearful and pathetic all day!

  • I sympathise with the tearfulness, have been crying on and off since Friday due to pred, tiredness and frustration and haven't been going through anywhere near what you are. Hope you get some sleep tonight.

  • Glad you got to see your Cons.

    So, whats your overall impression of the subcut trial? Do you think it going to help you?

    I was in Birmingham a few years ago where I was either going to do food trial or subcut trial and they decided to do food first as obviously if you can avoid a food trigger its much easier and less invasive than using sucut.

    It uncovered an allergy to eggs, dairy products and much less on to fish and wheat-really changed my asthma controlled from non existant to faily good-although still have good and bad times etc. I had no idea it was that triggering it and being veggie I lived on that sort of stuff and so was just constantly ill/admitted!!

    Anyway, enough of my waffle-hope you have a good night and escape on Friday-but I think you are very right in standing your ground and getting it sorted once and for all, otherwise you will go home and be on the downward spiral of constant admissions again x

  • I think there is some benefit from the subcut, though I would need the dose to increase - the good days have been about what I had on the bambuterol (so poor control but just about functioning) and the bad days have been hideous!

    2hrs into this last dose and my feet are beginning to twitch. I wonder if part of reason for such small dose was to try to avoid side effects giving it away, but I am extremely sensitive and know my body very well, so notice the slightest changes! No improvement to breathing yet.

  • Thinking about it, if they had given you a decent dose you would have know about it.... :-)

  • Also hoping subcut trial is successful and you get a Friday escape., and for tonight, a good night's sleep.

    Your ability to tell from doctor's reactions which is which is exactly why double blinds have to be double. A single blind often does end up being a no-blind. As a psych major from way back when we had drummed into us the importance of this. But I guess since perception and cognition is home territory for psychologists, all the psychological factors that affect the validity of experiments get particular appreciation.

  • That makes complete sense Beth. As I said, yes I had suspicians, but it was the doctors themselves who confirmed them!!

    Naturally, after a quiet day the ward is beginning to liven up just as I want to sleep. Oh joy!

  • Figiures. If your own lungs don't act up, then everything around you does. :-) Still hoping everything around you also settles and you get a good night sleep, either that or you sleep so soundly., comfortably and well that it doesn't even matter what happens around you!

  • Had a fairly reasonable night in the end, woke up coughing once and ward was a bit noisy but I put my earplugs in and it was bearable. Ive woken up with a dreadful headache, thought it might have been bloodsugar but its no better after breakfast so its probably tiredness catching up with me. Didnt leave the ward at all yesterday but need to today to preserve my sanity!

    New menus today, had hoped there would be something new to try but the veg options are exactly the same. Curry it is then...

  • How you've put up with so many weeks of hospital food....

  • The food here is pretty good on the whole, but as a dairy intolerant vegetarian with a severe celery allergy and unable to eat raw veg my choices are rather limited!! The biggest problem for me tho is I have a massive appetite (always have had, even before pred!) and the portions are on the small side. But the staff know me well now so make sure I get extras to keep me going! Ive also not got many family or friends bringing me goodies in!

    Still got a headache and ward very lively :-(

  • Subcut trial finished this evening so will get the results etc tomorrow. When drs came round this morning I bit the bullet and said I wasnt prepared to go home on Friday as overall Im no better than I was when I came in and I *need* to go home more stable, I simply cannot allow this whole admission to have been a waste of time. If the subcut is effective then it will take at least a few days to get it organised and then find a suitable dosage level, and if not we need to try something else.

  • Of course I don't *want* to be here another week, but Id rather that than go home and end up back where I was, bouncing in and out every couple of weeks or even more like I have for the past few months. Im reasonably settled, Im on a resp ward where the staff are amazing and know me well and I have a sort of routine, so Id much rather stay and get better than go, get worse and end up stuck on not such a good ward.

  • That's a really brave decision hun, and I really admire you for it :-) not sure what I would do in your shoes!! But it's definitely so much better to be where you are and leave with some control than being in and out all the time, it's exhausting!

    I have an apt with my cons tomorrow and feeling really nervous as he was a bit weird when I last saw him. At my limit now though - he needs to do something or refer me on. None of the c**p about the meds I'm on controlling most asthmatics. I'm stupidly brittle and therefore surely the being difficult to control comes with the territory. It must be frustrating for him and other medics yes but that's not my fault and it's so much more frustrating for me as it is me that is having to live with it!!!

    Ugh sorry for hijacking your post with a rant!!! Laura xxx

  • Rant away Laura! I completely understand. As is clear from previous posts, I love my cons, yet I ended up being very stroppy (I dare say rude) in my last outpatients app. She told me I was on the most drugs of all her asthmatics and I thought well okay, but theyre still not getting me controlled!!! I *know* most would be perfectly controlled on the drugs Im on, but Im not!!! She was reluctant to trial subcut as its only reliever not preventer but if my asthma cant be prevented it needs to be relieved!

  • She knows I hate being in (I refused an elective admission for 3mths before the last one and the whole time after that until now!) so Im certain when the junior drs told her I dont want to go home yet she'll realise Im serious about needing control. I also want to make sure I have a detailed plan before I go home so neither I nor A&E can have any doubts about what to do when.

  • Sparkly, I really admire you for standing up for yourself and what you need. I'm increasingly realizing how bad I am at it. My husband thinks I don't advocate enough for myself and I think even my doctor agrees. (Funny how much being ill can teach one about oneself and where one needs to grow ). I do hope your doctor takes it on board. You do deserve as much control as is possible. It is so hard to live and plan one's life when one doesn't know one day to the next or even one hour to the next whether it will be a good breathing day or a bad one.

    I've also been meaning to thank you for your comment above about knowing that God wants you well. On the surface its a no brainer statement, but it wasn't until I read your words that it hit home to me that this is one of these things I believe in theory but hadn't really gotten into my gut in a way that can help me push through until I find a solution.

    Laurs - you sound not just nervous but angry and legitimately so. You have a lot of great plans for your life (from what you've shared on line) and you deserve to be well enough to follow them, or else get the support and ackowledgement you need to cope with the problems that remain.

    If you were ""most athmatics"", you wouldn't be in the pickle you are in right now. Somewhere in my files is an article about how the current generation of asthma medicines are targeted at the processes that dominate esinophilic/allergic asthma and that we're still well behind in finding medications that work well with asthmatics where neutrophils play a big part in their flares. I don't know what kind of phenotype analysis your cons has done, but intrinsic asthma (the kind that is largely triggered by infections) is often neutrophil dominant and has a poorer track record of responding to steroids and other first line treatments. If you think your cons is stuck and you need a new set of eyes, I think it is really important that you listen to yourself. Just because someone has been kind to you (you've said this cons has been supportive in the past) and is well meaning and even very smart doesn't necessarily mean that they have the eyes to see what needs to be seen.

    It was really hard for me to decide to switch GPs earlier this year, and then to decide to change pulmonologists this fall. I'm usually of the opinion that any problems in a working relationship are mine to fix and that switching to a new person is just transfering the problem. It took oodles of conversations with friends on and off line before I really got it through my head that I had to change and it wasn't a matter of my just not trying hard enough to make things work. Sounding out my friends and hearing what they had to say really helped.

    Hoping both of you get some control soon and can focus more on other non-asthma parts of your life. (and hoping I can too).

  • Beth, thank you for another lovely, thoughtful reply x

    Waiting for the drs this morning was likw a cross between waiting for Christ,as morning and waitng for the executioner! I felt like everything depended on something I had no control over. I couldnt bear the thought that this whole admission would have been a waste, or that I would be told theres nothing more they can do for me here. Like Laura, Im very reluctant to be referred on as I like my cons and this hospital (well, as far as hospitals go!).

  • Waiting for the drs this morning was likw a cross between waiting for Christ,as morning and waitng for the executioner! I felt like everything depended on something I had no control over. I couldnt bear the thought that this whole admission would have been a waste, or that I would be told theres nothing more they can do for me here. Like Laura, Im very reluctant to be referred on as I like my cons and this hospital (well, as far as hospitals go!).

    For some reason this made me think of the crowd waiting for the ""Lord high executioner"" in the Mikado. Perhaps because he is his own savior and executioner? (He was sentenced to death for flirting, but no one wanted to carry it out, so they made him executioner on the theory that he couldn't very well execute himself.)

    Had to search a bit to find a YouTube where you could actually hear the words pronounced.


    (I've got a little list)

    Glad to hear that the conversation with the cons went well.

  • Anyway, the result was......positive! It wasnt perfect - my best PFs were no higher than on bambuterol but my lowest were nowhere near as low and we all agree that even if all that happens is losing the lows then its worth it. As Im naturally tachy they want to start me on a low dose, but we are going with 2mg rather than 1 so I might see some benefit. We will see how things are over the weekend and then look to start reducing pred on Monday if Im ok.

  • Im also being referred for resp physio (they feel I am too acutely aware of my breathing symptoms - after telling me a few mths ago I wasnt noticing problems early enough!). And they are contacting the allergy specialists at the next hospital to look into how dangerous azithromycin would be and if there is any possibility of using it (Im allergic to erythromycin). They think its worth investigating now so we know in advance for 'next time' I have an emergency, esp as I cant have theophyllines.

  • So all in all its been a good morning with some real positives. Yet I feel strangely low and emotional, which I guess is partly relief. Also, my cons said several times this morning how many times I have come close to dying etc and that always makes me feel strange - its not something I think about day to day, however symptomatic I am, and hearing it bluntly always shakes me a bit.

  • Ah that's brilliant news for you :)) fingers crossed this is the start of things improving. I can really relate to the best not being better - but the worst not being quite so bad, that kinda sums me up. I describe my lungs now as stable-y crap rather then unstable-y crap lol. Light at the end of the tunnel eh! ;)

  • Still feeling very strange. Havent yet started the treatment, guess theyre having to sort the stuff out with pharmacy etc. Also slowly coming to terms with the fact that its just another treatment, not a miracle cure. I think, in spite of telling myself that all along, Id hoped it would be the answer to all my prayers and get me feeling 'normal' again overnight. But yes, losing the lows will make a big difference.

  • Treatment didnt start today in the end, 'stuff' for it didnt arrive. I feel a bit disappointed and my lungs are really playing up tonight too, have coughed all day and theyre feeling very sore as well as not wanting to do their job! Not sure I'll get much sleep, also a new patient is very unwell so the lights are still on and nurses are in and out to her - of course I dont mind that (its been me often enough!) but does mean sleep is unlikely. Still not convinced Im not brewing an infection either.

  • Hugs sparkly!! It's a shame it didn't start today :-( crossing fingers for tomorrow!! Can sympathise with the lights still being on and your understanding of her being ill and also your feelings, as having been in her shoes too. But still frustrating as I am sure you must be shattered and in need of sleep!

    Thank you (and Beth!) for being so supportive when I had a rant last night. Cons apt went well today , but left with mixed emotions and now feeling overwhelmed. No changes, more tests, but what seems like there may be a longer term plan whatever that may be. Had support at the apt though. Will post more about it when I've organised my thoughts a bit more!!

    Hoping you sleep well!! xxx

  • Terrible night last night, the other patient was extremely unwell, I wont be suprised if she is moved to a higher dependancy ward at some point today, but I got absolutely no sleep. My chest is very tight, PF rubbish but so long as I dont move Im not so bad! Hoping the subcut will start today, at least I will feel like theres been some progress.

    Laurs, I look forward to hearing more about your appointment. I know the tests can be frustrating but they do help find the best treatment in the end x

  • Sorry to hear about the bad night. I hope you at least get to get started on the sub-cut today. Sounds like your lungs need it.

  • Treatment has started! Its still with the clumsy big syringedrive and butterfly needles but at this point I dont care, I just need the drug! I put the needle in myself as of course I'll need to do it when I do get home.

    Poor lady in next bed is terribly unwell (always) and unable to speak. Must be so frustrating for her not being able to communicate what she wants or needs. Thankfully lovely atmosphere in this bay and the 2 of us who are up and about do our best to help the 2 bedbound as much as we can.

  • Treatment has started!


  • Sparkly

    You sound such a kind caring person I just hope things get sorted for you soon as you seam to be going through such a lot

    (BIG HUGS)

    Veronica xxx

  • Yay sparkly :-) soo I glad you're starting! Fingers crossed for improvement on it!! Also it's so lovely that you and the other patient are being so kind!!

    Yesterday's apt: I've got to have an ENT camera thing - cons seems obsessed with vocal cords - if it's VCD causing it all it'd be awesome! Also got to do the mannitol challenge or whatever it is called. Bit concerned about that though and also from reading up on it you shouldn't have any bronchodilators (even theophylline) for a set period before - so that's not going to be too good, though cons hasn't said to omit anything! As well as a host of blood tests and a very very slow pred wean. So no changes and a load of things to get my head around. But then hopefully they will find that there is something else contributing towards the current level of severity. Hopefully something easy to fix :-)

    Take care xxx

  • Laure - I totally get the hope that it is VCD., given that it generally very treatable. Plus if you use your voice a lot (and teachers do) its a double win given that you get some voice work paid by national insurance as a medical treatment. I was kind of disappointed when my ENT didn't think it fit. Also I'm really glad to hear that they are widening the scope of investigation, i.e. the blood work. I think one of the mistakes made early on this year was to get so focused on the respiratory issues that we didn't look at the big picture. It was only when I ended up in the hospital and then started going to a new GP that we discovered that I had a number of other small problems that were complicating things: low B12, low iron, mild anemia, and too little protein in my diet. (I'm not officially vegetarian but my eating habits tend to lean in that direction without trying - which was a problem because I wasn't eating very much animal protein but I also wasn't planning my diet to include complementary vegetable protein).

  • Laura, Im pleased to hear they are going to do more tests for you, while I found 2wks solid of tests frustrating, theyve definately helped the drs understand my asthma better and so decide on the most appropriate treatment. I had mannitol challenge a few years ago. It wasnt plesant but it was manageable. Im sure they will monitor you carefully, possibly even have you in to make sure youre safe. I was told no relievers for 6hrs before, but if I needed them I was to take them and theyd have rescheduled it.

  • Im shattered after no sleep last night and only v brief nap today. Poorly lady has been moved to sideroom so fingers crossed for sleep, tho Im sure the empty bed will be filled about 2am as usual!

    Not feeling much benefit from subcut yet but was quite poorly this morning so hoping it will kick in overnight. The needle is leaking a little, but nothing I cant deal with and hopefully wont be a problem once I get the proper kit next week.

  • Hi Sparkly,

    Great news that treatment has started I hope it works well for you.

  • Grr! Totally unimpressed with my body!! Sats have decided to drop, not crashed thankfully but 93% on RA. Im free to use O2 when I feel I need it but reluctant to as 1) it dries my nose and makes it sore 2) Im hoping to get home sometime next week and will have to manage without there and 3) Im on subcut which is meant to be my magic wand!!! Due a neb in a bit so might wait and see how I feel after.

  • I'm so glad that the sub cut trial went well and you've started the treatment. I really hope it gives you some stability. Are you feeling any better after your dip earlier tonight?

  • Slept reasonably well in the end, sats 95% on RA this morning so slightly better. My leg has bled a little but its not sore, will speak to my nurse about it later - needle meant to be changed ever 48hrs but will ask if she thinks its better to do it today. Also whether mepore might be a better dressing than terapore as any liquid would soak in rather than leaking out! Got 2 very special friends coming today so should be a good day I hope :-)

  • Well that wasnt an especially good start! Had to end the first transfusion a couple of hours early as it kept bleeding, just a tiny bit but still. 2hrs into the 2nd day now, have moved needle to top of my tummy to see if I can manage not to knock it, feels okay so far and no leakage. Lungs moderately okay. Expecting a few visitors today but have to admit Id rather just sleep! Ah well, will be fine when they get here Im sure, one is my little godson so that will liven things up a bit!

  • Visits were lovely in the end, even if my godson slept the whole way through so I didnt get a cuddle :-( Stole a couple of kisses though! Needle site has bruised wonderfully but isnt sore and isnt bleeding so not too worried, but have realised its going through slightly faster than its meant, to - says 12hrs left but was started at 10am?? Hey ho, not worrying about that either, will actually be more convenient when I go home to be doing it first thing than mid-morning.

  • Lungs still not especially happy which is a tad annoying, but telling myself they might have been far worse without the subcut, so need to look at things over far longer than 36hrs to know how effective it is.

    Once again I feel unbelievably tired, even a good night in hospital isnt like sleeping at home in your own bed, and after 25days Im really missing my own bed!

  • 25 days? Wow.

    I definitely hear you about even a good night not being like your own bed. Although I've only been captured once (5 days) for asthma, during the first three years of our marriage, my husband was in the hospital for long stays on two separate occasions: once for open heart surgery and once for a leg broken in a bad place that could only be repaired with surgery and required immobilization in hospital for several weeks while the swelling went down. The hospital had a liberal visiting policy for family members acting as primary care givers (Helps them with minor nursing duties), so I spent many a night sleeping next to him in a chair.

    So glad you got to see your godson, even if you didn't get a good cuddle :-(. I hear you on that one too. My highlight during my hospital stay last May was when my nieces and nephews came to visit me (their mother told me they specifically asked to come). They brought chocolate, graham crackers, and marshmallows and we went out to the visitors lounge to make mini-s'mores, minus of course, the melty bits. It cheered me up no end to see them, even though the two oldest spent most of the time utterly consumed with squabbling (sp?) with each other over a hand-held video game. Still because they are dear to me, just seeing them and being around them being themselves (good and bad), made me happy.

    Hoping things get sorted soon with the sub-cut.

  • For no particular reason I didnt sleep well, very annoying! However Im feeling reasonable this morning, sats back to normal. Needle is comfortable and hasnt bled at all. Its in the very top, middle of my tummy (about 2"" below braline if that makes sense) and that feels like an ok place for it. Really hoping they sort out my going home equipment soon, keen to escape now. PF not really rising yet so hoping cons will inc dose a bit before/as she reduces my pred, need some improvement soon.

  • Sparkly- my god, you're still in! You poor thing :( I came out 2 days ago..

    How are you feeling today? Also, how much pred are you on now?

    Hope you can come out soon :(

    Hugs :)

  • Hi Annie, Im so pleased you finally escaped! Have they managed to get you more stable? I do hope so.

    Im still on 30mg pred, quite nervous about dropping it down as everytime I have in past 10mths its all gone wrong, hence wanting my PF higher before I do so, but know I need to cooperate if I want to avoid referral to RBH!

  • Oh joy. Sats dropped again to 91, left lung feeling really sore and protein in my urine. Looks like I was right about an infection, even though still not got a temperature or coughing anything up.

  • Wouldn't protein in your urine be more likely to be a urinary track infection (UTI), i.e. not something that would cause a cough? Sorry to hear about the lowered sats. Hope you start feeling a bit better later in the day.

  • I would have thought that too but when I said to my nurse that I feally felt like I had an infection (theres def something going on thats not 'just' asthma) she suggested a urine dip as protein and one or 2 other things can show youre fighting an infection, wherever in the body it is. Combined with slightly raised white cells on last bloodtest and the pain it does seem theres a chest/lung infection. Theyve been querying pneumonis for ages now but whatever it is is low level and not showing clearly anywhere.

  • Well they got the on call dr to see me but he didnt want to put me on antibs, thought it better my own team decide tomorrow what to do. He prescribed a single dose of tramadol which helped the pain a bit but has worn off now. Im really not feeling well, just generally out of sorts and Ive lost my appetite, something thats not happened in about 8mths thanks to the steroids! Im tearful too, for no other reason than not feeling well. Breathing is sort of okay, hard to tell. No dramatic improvement from...

  • ...subcut but given how I feel I would have expected it to be worse, so I think its helping (does that make sense???).

    Such a good atmosphere with other 2 ladies in the bay (+empty bed!). We are totally different and barely speak the same language but we have laughed nearly all weekend and try to help each other when we can. Id rather not be here, but Ive certainly been on worse wards before now.

  • Still feeling really grotty. This morning the nurse was rather too efficient for my liking, not quite brusque but heading that way. She woke me up to change the infusion half an hr early, which is neither here nor there, but kept trying to rush me while I took the old needle out and the new one in, felt like I was delaying her but I wasnt really slow and she could have left me to it and popped back if she'd wanted to! Its roughly same place just couple of inches over, its an ok place til get my proper sets.

  • Still feeling generally unwell with this silly painful lung and achiness/malaise. Drs not been round yet. Expecting a bit of a (good natured) stand off with cons - she will want to reduce pred, which I do too but I want to inc terbutaline too, heartrate actually lower than on bambuterol and would help reduce nebs (still 2hrly) making it easier when I go home. Anyway, will see what happens when she comes.

  • Good and bad news today. Didnt see cons but did see her team. Reducing pred to 25, feeling nervous tbh. This pain/grottiness looks to be pleurisy! Initially I was upset because it sounds scary, but it could well explain why this last exaserbation has gone on so long with no real improvement. Treatment is limited to painkillers at present until bloodtests are back (can be viral or bacterial) but on hefty combination of tramadol and high dose cocodamol so breathing is less painful at least.

  • Oh dear, pleurisy is really painful :( you wouldn't think a couple of membranes rubbing together could hurt so much! Hope it improves soon x

  • Thank you. I cant believe the difference the painkillers are making already! Id been on the cocodamol prn but was trying not to take it because I felt like I was just being soft! Now Ive been told to take both drugs regularly and its helping a lot. Be interesting to see if PF improves with it not hurting so much. Feel more positive too knowing Im not imagining how Im feeling.

  • Will be much easier to blow a PF without that horrid pain! Be warned that regular doses of both tramadol and codeine have a tendancy to turn your guts to cement... It's wise to do something proactive at the first sign of things slowing down so to speak ;)

  • Thanks for the advice nursefurby, Im rather prone to *that* anyway so definately worth knowing its a possibility in advance!

  • I always find it weird how much taking regular painkillers makes a difference, it seems as though taking them at the start of pain would be enough, but i do notice such a difference when i do them 'on time' rather than as needed! quite glad to hear you have been prescribed tramadol and coedine at the same time, i have both in stock and have taken them together a fair few times, and then recently someone told me that tramadol couldnt be taken with paracetamol OR coedine, which is a bit of a pain (lol) for me as i *tend* to do para, coedine, tramadol in that order as i dont like to start with the hefty stuff unless i know what the issue is and that para alone aint gonna do much!

    they're good painkillers, and much easier i find when in hosp to keep track of when different things have been taken so you can be confident when you are due some! OOI do they have you alternating or all at once? i think they're both 6hrly meds, so like one, then 3hrs, then the other, then 3hrs then the first kind of thing? or both 6hrs both etc? glad they're working, and i agree its lovely to have confirmation that what you are feeling is a physical issue!!

  • Who told you paracetamol can't be taken with codeine...? You can be prescribed tablets that are a combination of both! I take tramadol and paracetamol together too as advised by pain clinic consultant...

  • Who told you paracetamol can't be taken with codeine...? You can be prescribed tablets that are a combination of both! I take tramadol and paracetamol together too as advised by pain clinic consultant...

    To be fair, it was a friend and patient who commented on it, in a ""absolutely no way. An those drugs be used in combination"" I knew codeine was ok, but I wondered if the ""adoll' in tramadol meant paracetamol, coz I know codeine becomes cocodamol.....but yeah, good old dr Google knows all about drug interactions! Very helpful (esp with uniphyllin which frankly interacts with everything in the world, and loads of OTC stuff I've been using for ages)

  • Ive meant to write about this and keep forgetting. After the 24hr PH study they inc lansoprazole to 30mg twice daily and added 150mg ranitadine at night. The peaks in acidity match symptoms, but only about 25% of symptoms matched acidity. My overall acidic time was 2% (against 'normal' of 4.3%). I dont like taking these as I feel bloated on them and worry about completely supressing stomach acid when its not high anyway. Ive noticed no benefit from the inc drugs. Is it likely to be helping do you think?

  • Hi sparkly - I never had symptoms of reflux despite constant aspiration pneumonia caused by it. I'm sure I was told that something like 50% of people found to have GERD are asymptomatic (in terms of classic reflux symptoms like retrosternal discomfort, sore throat, hoarse voice etc). So I wouldn't be led by symptoms but by test findings.

    Remember also that the drugs do not stop you refluxing gastric contents, they simply reduce acidity thus vastly reducing potential for damage. The thing which made the biggest (and massive) difference for me was sleeping at a 30 to 45 degree angle. It's harder for gastric contents to climb uphill. This reduced my reflux and pneumonia by about 90% and my last 24hr study showed no episodes of reflux. If I lay flat, it's straight back! I was on 80mg of omeprazole a day and still getting AP - now I'm on 20mg and have only had it once since Christmas now I manage my sleeping position. I never ever lay flat now.

  • Oh Soph I know what you mean about the theophyllines, I couldnt believe the list of interactions when I was on it! (now on roflumilast so cant have theoph, regardless of how ill it makes me anyway!). The interactions, together with the side effects meant I was then absolutely horrified to see you can buy theophylline over the counter!!!

  • The interactions, together with the side effects meant I was then absolutely horrified to see you can buy theophylline over the counter!!!

    Im not aware you can buy theophylline over the counter...?? Certainly the BNF doesnt list any non prescription preparations (which it does when they are available). It would seem a bit odd if you can, particularly as there are issues with sticking to the same preparation of the drug..

  • Today is proving hard work already. New lady came to bay last night, quite elderly, and wouldnt let them turn her light out so I struggled to sleep. This morning, a beautiful warm sunny day, she wont let them open the blind and windows!! Its stuffy and horrible in here and Im tired and in pain and my infusion ran out hours ago but todays wasnt written up so waiting for the doctor. Also expecting a psychiatrist today and of all days I could do without it! Dont know when, or Id go back to bed!

  • Today is proving hard work already. New lady came to bay last night, quite elderly, and wouldnt let them turn her light out so I struggled to sleep. This morning, a beautiful warm sunny day, she wont let them open the blind and windows!! Its stuffy and horrible in here and Im tired and in pain and my infusion ran out hours ago but todays wasnt written up so waiting for the doctor. Also expecting a psychiatrist today and of all days I could do without it! Dont know when, or Id go back to bed!

    Oh dear.. maybe someone needs to point out that there is more than one individual in the bay.. think I would go with the bed option, they can always wake you ;)

  • Its called Chestease (or Chest Ease, not absolutely sure). My sister had bought it for a chesty cold and I was just reading the box and saw its theophylline! Think it was 100mg tablets to be taken 3xday but wouldnt swear to that.

  • Just seen my lovely cons (and about 50 students!) Basically all happy with how things are going. The pleurisy doesnt need antibiotics, just painkillers and rest. We are inc the subcut dose over the next few days to see if we can get to the stage where I only need salb nebs occasionally rather than every few hrs - I asked this and she says it makes more sense providing my heartrate doesnt shoot up - inc slowly for same reason. Feeling lousy still but positive! Plan is to go home on Monday :-D

  • YAY! :)

  • All day in a sunless room sounds very dreary, but glad to hear visit with cons and her troop of students was good. How are you feeling about the plan to go home Monday?

  • Im pleased, of course I want to go home, but to be honest Im a bit nervous. I will have been here nearly 5wks and even tho I had a couple of bad experiences waiting for drs, overall I have been extremely well looked after and know they would never allow anything to happen, even giving me meds before they were prescribed when I was very unwell. Its good that my usual cons is on the wards at the mo. I'll be on weekly appointments for a while and it helps that shes been involved with the subcut starting.

  • Im looking forward to getting into my own routine with the new medication etc, plus of course my own bed!!!

  • Psych meeting went okay yesterday, he doesnt feel I need to see him again but Im free to ask to see him if I want to. They are trying to get my home equipment sorted for Friday to ensure its definately here and give me a couple of days to get used to it before Monday (Im self medicating but cant do the subcut as its a big, locked syringedrive). Still a tad disappointed its not the dramatic results Id hoped for, but optimistic it will keep me at least more stable and out of hospital!

  • Glad to hear that the psych meeting turned out okay. I'm sad for you too that it wasn't the 100% miracle you were hoping for, but even a little improvement counts I hope, especially if it gives you more control over your life, and it sounds like it has that possibility. Hoping too they come up with something nicer than the bulky kit you have now!

    Wishing you a good day!

  • Had a giggle this evening. My drug chart was full (2nd 'normal' one of this admission plus theres a 'secret' one from the trial now not secret anymore!) so nurse left it out for dr with a note saying 'please rewrite'. The dr returned it with a 2nd note saying 'patient is fullt self-medicating, Im saving trees :-)'. I reckon theyre fairly confident that I know what Im doing then!

  • Oh Im cross with my body! After a really good day I was intending skipping my last neb of the day and then cutting them back further tomorrow, but Ive started coughing hard and my sats have dropped a bit (only to 95 but dont want it to go any lower) so Im going to have to have it. Really hope this is just a blip, I want so much to be able to drop the regular salb nebs and just have them as needed, would feel a step closer to being normal again. Also got horribly achey arm from the anticoagulant injections.

  • Believe it or not, I'm still here! I didnt go home on 14th as planned because I had a rough weekend resulting in needing iv mag and O2, so we decided to up the subcut a bit further and they wanted me to stay til Friday to monitor. That was okay and Thursday I was all set to go the next day, but I picked up a bug!! So instead of going home I got a top to toe examination from my consultant, blood and urine tests and a chest xray - tad overreaction for a little bug imo!! Gradually recovered over the weekend...

  • :( ah no Sparkly, you must be so annoyed! I've come back in here after a while though and pleased to see the subcut is working a bit.

    Hope you feel better soon and are out of there asap.

  • The bug raised my (already high) heart rate to 150 ish, so my cons dropped the subcut dose over the weekend as she was worried I could have a heart attack, and boy did I notice the difference. Inc dose again today, heart rate fine, so I finally get to go home tomorrow - yay!!! I'll have been here 6 weeks!!! Also just switched to Flutiform from Seretide as I had noticed the difference from formotorol to salmeterol when I changed from Symbicort. Too soon to know if it will help but worth a try.

  • Bit of a farce with the subcut pump - turns out district nurse has to sort it out! So my drugs etc have been sent up today ready, then DNs will phone ward to let us know when they will be at my house, and my departure from here will be timed to coincide! Cant say Im particularly happy with the situation but I dont have a choice. Bet I get lumbered with butterfly needles again tho, so will need to sweet talk my GP I suppose to get sofsets.

  • Philomena, I was absolutely gutted, but actually felt to ill this weekend to stress over still being here - and as it looked touch and go whther Id manage to take my meds orally (did manage it eventually, the most important ones anyway) I was better here where they could have given them iv if necessary. Ate nothing Fri, a little bread Sat, bread and cornflakes Sun and today have managed simple but more normal food. Had jinxed myself saying I never catch sicky bugs just the day before I got it!!

  • I am so glad this thread didn't get lost in all the server problems.

    Sorry to hear about the bug, but glad to know that you are recovered and going home soon. Fingers crossed that nothing further gets in the way. And hoping you have something more pleasant than butterfly needles for the subcut.

  • Crossing fingers for the subcut too! And ughh, sicky bugs are just horrendous full stop but esp on top of all the things you have to deal with! Glad you're back eating again.

    HUgs and hoping escape v soon.

  • Well Im home but its been a pretty rubbish day. Firstly hospital had less than 2 days terbutaline to send me home with! Have promised to send rest by courier tomorrow so really hope they do. Discharged me without any painkillers either and still really sore with the pleurisy. District nurses came and the pump is exactly the same as the hospital one, a huge cumbersome thing. Im still stuck with butterfly needles too, and the dressings are ones Im allergic to but 'the only ones we use'. They rushed me...

  • doing it too so its really uncomfortable. Got senior diostrict nurse coming tomorrow, and going to email my resp nurse. Its ridiculous and I cant stop crying just now - combination of frustration, tiredness and pain. I was in 6 whole weeks, and should have been discharged last week except I got sick. There is absolutely no excuse for this disorganisation, it should have all been sorted out well before now.

  • I'm so sorry you are getting caught up in someone else's management mess. This really isn't fair, whatever the reason. Hoping it gets sorted *very* quickly. (((Hugs)))

  • Awww hun! Deep breaths (as far as possible) remember you're going to have to REALLY look after yourself for a few days. I always find I feel very shakey after a few weeks in. There is something very reassuring in the routine, and consistency, and safety of being in hospital that makes it feel very strange when you first leave. i find that having people around really helps. as well as spoiling yourself a bit, long baths, takeaway, online shopping etc all make you feel a bit more human. I also have a great GP practice and sometimes have a few appts with a nurse who is lovely and I see her daily or every other day for a few days and she gives me 20mins to say how im doing, discuss any little niggling concerns that are not enough to get an appt for but weigh on your mind, I find that really helps!

    you might also find it psychologically helpful to write a list of things you dont want to put up with in the long term (big sub-cut pump, butterfly needles, allergicky-plasters, DN who rush you etc.)so that when you're feeling up to it again, because it will take a while, 6 weeks is a long time, then you can work through the list, and in the short term it'll help to say 'when im feeling better i wont have to put up with this' in the same way as when you were in you could say 'when i go home i wont have to put up with this'

    take time as well sometimes to think 'its good that im home because i can do this.......' which i find helps, i always lie awake in hospital thinking of lying in my lovely comfy bed, in the dark, watching a film, and I like to lie in bed at home and be glad im not in a hospital bed!

    It depends how stressy you feel. My mate was once in for 6mnths, and she found it very hard when she first got home. she got her hubby to sort her meds for a few weeks afterwards. If im having a rough time when i get out (if been discharged a bit too early sometimes my (lovely) flatmates will sort me out for a bit. they know what to do. when i was on IM hydro rather than PO, i had a day or two where i just slept 24hrs a day, and my flatmate (a biomed student) just came and stabbed me every 6hrs, bless him! but i fuind it helps. One of the things that is good about hospital is its just all sorted, and you dont have to think, esp with PRN stuff, so it does take more brain power when you get home!

    sending lots of hugs! xxx

  • Soph, your flatmates soumd lovely <3 Im lucky in that I have some good support too.

    Senior DN came today, shes going to liase with my resp nurse to try and get a small pump, sodsets etc. Little progress with dressings tho she says she will prescribe once I know which ones I want to try - does anyone happen to know the gentlest? My skin is so sensitive. Sure I had one like big micropore once but cant remember the name. The terbutaline arrived as promised too so I have 2wks worth...

  • There are so many different types - and sensitivities are so individual it will just be trial and error.... I would let the district nurse suggest where to start. Have you tried mepore? I tolerate that but am allergic to micropore.

  • Breathing-wise Im actually feeling pretty good. Just had a salb neb and have had about 20puffs of salb today too, but before/while first in I was on 1-2hrly nebs so a massive improvement! Ive not done much I must admit, just so tired, but Im being really careful, taking it slowly and giving myself time to get over the admission (plus the pleurisy which doesnt seem to want to go :-()

  • SO glad that you are home Sparkly, and that so far things seem to be stable :-) no comment on the neb and 20 puffs of salbutamol ... I know my GP is horrified when I say how much salbutamol is used even on a *good* breathing day! They just don't understand that severe level!

    Its good that you have a good support network around you, it makes things so much easier to deal with!

    Glad that the subcut has come, the discharge sounds a bit of a farce! But you must feel amazing being home and able to sleep in your own bed and (while having to be careful!) getting on with *normal* (if things can ever be normal as a brittle asthmatic!) life!!

    you have coped amazingly with what has been thrown at you, and I really really hope that some stability is gained!!

    Hugs!!! Laura xxx

  • Just added my thanks for for sharing your journey with us these last six weeks. Realized I should have done that long ago. Hoping this morning is treating you better than last night.

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