I can well and truly eat my words after bragging about 2 weeks at home, which is the longest I've managed to be out in months!
Admitted to a&e via resus last night with awful blood gasses. Had the usual treatment and my ABGs improved. Was feeling quite optimistic as I bounced back quickly and went straight from resus to MAU - was really pleased with that
But started going downhill again very quickly in MAU, a registrar, F2 doctor and a student doctor all started having a panic about what my sats were doing and that my lungs are moving no air at all.
They have now decided that I need to move to HDU for closer monitoring. They are doing b2b nebs, getting 6 hourly hydro (why?!! This really confuses me ) and getting aminophylline :'-( plus on 4L+ O2
They have also just done another ABG as they are really concerned at just how tired I am becoming.
Feeling really really fed up and upset. I've already been told that I am in for at least another 2 nights and probably more. This is my first time of having aminophylline - will I just get the 1 dose or will they give it over a few days? I don't understand it.
If you've got to here, congrats listening to my total meltdown.
Hi Laura, have you asked your treating doctors about the aminophylline and hydro? It will vary case by case so they will be the best folk to ask. It sounds like if you are that unwell that HDU is going to be where you get the best monitoring - better there than on a busy ward where no one looks at you for ages!
I hope you start to feel better soon, tbh Im amazed you can go to the effort of posting if you're that unwell, I do nowt but sit and concentrate on breathing lol. Hope you dont have to have too many more ABG's - they never put you in a good frame of mind do they!!
Lynda x
Hi, I was really upset when they came this morning and didn't have the breath to ask tbh. Taken a lot of processing.
I'd rather be on the Internet or doing something rather than just thinking of what my lungs are doing. I'm still on oxygen and IV aminophylline and not even allowed to the loo! I want to send them back and demand a refund! Fortunately, while quite tachy the antiemetics are working and I'm not too shakey either at the min. I'm hoping that possibly I may be more stable after this admission?
Just to clarify, the aminophylline question was to see what I should expect. Just the 1 dose or more than 1? I want to use it to gauge how long I might be here - I like to be mentally prepred and I am struggling with this level of illness as up until fairly recently I have not ever been really ill.
Laura x
Hi Laura, sorry youre having such a tough time again. Hydro has a short half life, when Ive had it longerterm (last long admission) I was on 100mg 6hrly so I dont think its unusual. I do hope they get you stable, and then find something to help you stay stable longerterm. I really do feel for you, Im struggling terribly myself (physically and emotionally) but know I need to stick with it and not rush home however much I want to. Stay strong - we can keep each other company from our respective hospital beds!
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Thanks sparkly
I'm feeling better than I did earlier, when I felt horrendously ill and had a moment of thinking ""just what's the point?!"" then I thought of all of the other people going through the same and worse! Had a bit of a sleep now though and am almost a 5th of the way through the amino infusion and my lungs feel slightly more settled. Hoping to see the asthma nurse here later, she came to see me earlier and was gonna do LF and spiro etc, but the reg said I was just too unwell at the time, which I'm great full for as I don't think I'd have coped with spiro!
I don't actually know what hydro dose I am on! Due more about 4 so will ask then!
Are you being trialled on anything new? The cons is supposed to be coming to see me and she is meant to be lovely. Maybe she will have that magic wand?
Laura x
Laurs the two weeks is still an achievement.this is a nasty bump in the road, but two weeks is still two weeks. Hoping you'll get home soon and will be well taken care of in the meantime. Thinking of you.
Thanks Beth, was just feeling really down earlier. Feeling a bit more positive now!
They seem to have screwed meds up though because nothing has been prescribed properly. Or it says in my notes but isn't on the system! Not done any peak flows, which I'm pretty happy about as I hate to think about how low it was earlier!!
I'm a bit confused as earlier I was told to stick at 4L O2 and ask for more if I felt it nec, but in my notes it says I refused high flow oxygen? I'm managing to maintain 97% on 4L now but they crash every time I try to come down!
Hoping to sleep well tonight and not have any more interesting attacks as absolutely shattered. I'm sure everything will feel better in the morning!!!
I just wanted to send hugs Laura and I hope things improve very soon xx
Hi Laura,
So sorry to hear you are in again but, like others have said, remember that the two weeks without admission was still good. Hoping you are well enough to be home again soon.
I am so sorry that you are having such a rough time, I hope you start to improve soon.
Hugs to you.
How are you doing today Laura? Hope youre starting to feel a bit better x
Well done for 2 weeks out but sorry to hear you are back in again.
Do you think this was your lungs reaction to not absorbing your meds whilst you were being sick?
Hope the hospital are sorting you out and taking good care of you and your lungs x
Hiya, thank you everyone for all the support you have given. Surprisingly I have actually been allowed home today, with very strict instructions about what I am allowed to do and when I have to go back. I left it far too late to get help the other day, which I have had drummed into me ... alot!
The reasons I was allowed home: home nebs - 4 times a day plus as required (2 in 4 hours, even if I can still talk (the guage I use!) I need to go in), my peak flow after nebs this morning doubled, I am already on uniphylline and at therapeutic levels, I dont live on my own, I responded well to the aminophylline, nebs and oxygen, but was able to be weaned off the oxygen and repeated ABGs showed that I was holding my own
I suspect that the sickness bug really didnt help things as I definitely wasn't absorbing properly and my theophylline levels had gone down, although I was still therapeutic.
Before leaving today, I had a chat with the lovely asthma nurse at the hospital. Made me chuckle as she went right back to basics and checked inhaler technique and all sorts!
I am really surprised and pretty upset that I got to the point where I needed IV aminophylline, I usually respond so well to being given mag and hydro, even if more than one dose of magnesium is sometimes required. Also pretty shocked that it came as a result of a rebound attack whilst I was already in. Only because there have been a few occasions where I have been discharged straight from resus after being given the works ... what if that had been one of those times?!! It wouldnt have been (and wasn't) as was so bad when I went in and blood gasses and everything, but still!!!
Everyone was pretty amazing during this admission, so a huge thank you to everyone who took care of me!!!
So, again, thanks everyone for your support! Hope everyone else is well and hope that I manage to have more than 2 weeks at home this time!
Laura x
Feeling REALLY sorry for myself and actually just want to cry at the min!! I am at home at the min, but only just got out and I don't think I am at home for long.
My GP sent me to A&E with a letter saying why I needed to be in A&E on Thursday. I knew that I was heading there at some point yesterday anyway, as managing at home was not working. I had been on antibiotics and pred upped to 40mg and things had been going downhill for a few days before, to the point that the treatment I could do at home wasn't having an effect. I did however go in at an earlier point than normal due to the GP letter, meaning that on presentation I could still talk (pretty difficult, but still ...) and what happened in A&E just confirmed why I DO leave it so late. Arterial bloods were done as usual (which weren't great), but wasn't causing a fuss, therefore meaning that I was given nebs and admitted. But nebs hadn't worked at home.
I went to the medical assessment unit and by the time I got there I had deteriorated to the point that I was unable to talk properly. Fortunately the team on MAU know me pretty well and knew that I was in pretty bad shape. There is an amazing nurse there, Graham who looked after me during my first ever admission and even when I went to ICU looked in on me. He said that he was fetching the dr immediately as he had never seen me on admission as bad, but does know how quickly I ""go off"", the dr was concerned and fetched the registrar and within 15 mins was being given the works which thankfully did its magic and sorted it. Graham put me onto 15L where I stayed for a long time, before a slow wean to be kind on my lungs - I have NO voice now though
Discharged with yet more and different antibiotics as have another infection and lungs and accessories are REALLY painful at the moment.
I got to see my own cons this morning who is lovely and was able to discuss at length, managed to convince him to let me do a fast pred taper, so tapering by 5mg a day over the next few days. Also I am stopping uniphylline fairly soon as day to day side effects don't seem to be worth not having any real improvement in control. It does however help in acute situations. My only concern is that while we are stepping back treatment, there is apparently nothing else which can be added. Which leaves me wondering how much longer I can deal with this lack of control and seriously considering whether I should ask to be transferred to a more specialist centre? Surely there is SOMETHING which can be done!!
I also have a much tighter action plan, I know its to avoid any danger, but it means that I will be in even more than currently, though it is going to be reviewed again in the next couple of weeks. I have to use 1 2.5mg salbutamol neb if PF is 50% of personal best. If it doesn't go up OR it goes to 50% or below within 4 hours, I have to use another 2.5 and then get to A&E. Not allowed to use 5mg anymore.
This leaves me in the position that while happy I have no grey areas, I WILL inevitably end up in again very soon as lungs are currently being awful. They don't like this infection :'-(
Well done if you have survived my rant. Laura xxx
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Feeling REALLY sorry for myself and actually just want to cry at the min!! I am at home at the min, but only just got out and I don't think I am at home for long...Well done if you have survived my rant. Laura xxx
Uncontrolled asthma is REALLY hard. I think those of us struggling with this would all go crazy if we didn't have a place to vent and people who care enough to listen to us. Also I just wanted to point out that sometimes feeling sorry for yourself is a form of self-compassion, which is a REALLY GOOD thing. I only think its a problem if w get paralyzed and stop actively seeking to either fix or work around the problems this causes. But compassion, including having compassion for yourself, is good. Massive (((hugs))).
My GP sent me to A&E with a letter saying why I needed to be in A&E on Thursday. I knew that I was heading there at some point yesterday anyway, as managing at home was not working. I had been on antibiotics and pred upped to 40mg and things had been going downhill for a few days before, to the point that the treatment I could do at home wasn't having an effect. I did however go in at an earlier point than normal due to the GP letter, meaning that on presentation I could still talk (pretty difficult, but still ...) and what happened in A&E just confirmed why I DO leave it so late. Arterial bloods were done as usual (which weren't great), but wasn't causing a fuss, therefore meaning that I was given nebs and admitted. But nebs hadn't worked at home.
What rotten luck.to have your ""go-in"" rules tightened just at the point you are remembering the problems that go along with coming in early. As you know from my thread I'm really struggling right now with when to go in. Sometimes I think we're damned-if-we-do and damned-if-we-don't. If we stay home, we suffer physically and put ourselves at avoidable risk. If we go in, we'll eventually get taken care of physically, but we risk a certain amount of emotional fall-out.
it is good you eventually ran into Graham and got the help you needed, but I wish you hadn't had to go through the preliminaries. Sometimes I find that nurses are MUCH more clued into what people actually need than the doctors are. They seem much much more aware of the patient (ward duties permitting - often they are too overworked to give the kind of individual care they want to). Glad to hear you are home and hoping the lung pain and sore accessories end soon.
I also have a much tighter action plan, I know its to avoid any danger, but it means that I will be in even more than currently, though it is going to be reviewed again in the next couple of weeks. I have to use 1 2.5mg salbutamol neb if PF is 50% of personal best. If it doesn't go up OR it goes to 50% or below within 4 hours, I have to use another 2.5 and then get to A&E. Not allowed to use 5mg anymore. This leaves me in the position that while happy I have no grey areas, I WILL inevitably end up in again very soon as lungs are currently being awful. They don't like this infection :'-(
Earlier I had been wondering about whether I should ask to be able to do more nebs at home. (also only allowed 2.5mg), but I think maybe the more conservative approach is better for me too.
I can appreciate the relief not having grey areas must bring. I'm a little envious. I think I would find that plan hard though: I haven't managed to stay above 50% for four hours straight for at least three days. Then again, maybe if things weren't so grey for me and I'd actually gone to A&E for treatment on Wednesday (doctor who saw me gave me a referral to A&E in case I got tired of toughing it out but didn't say it was a ""must do"") rather than staying at home hoping that putting the pred back up to 40mg would improve things, maybe I'd be feeling a lot better than I am right now.
Over the long run, do you think coming in early on a regular basis will mean shorter stays even if you have more frequent A&E visits?
Take care. Hoping you are feeling less overwhelmed today.
Ive been thinking about you today Laura, glad youre home but completely understand your frustration.
Have you asked about/your drs mentioned bambuterol or roflumilast? Both of these helped me. Roflumilast is a fairly inknown drug, lisenced for severe copd but one cons here has trialed in it asthma - Im only the 23rd asthmatic to have it I think and was given it because I cant tolerate theophylline. Since starting it Ive only stopped breathing during a nightime attack once whereas it had been far too often.
Bambuterol is basically oral terbutaline, and its because Ive had some success with it that Im now trialing subcut. It caused a lot of cramp and made me tachy to begin with but that settled reasonably quickly.
If youre feeling that you need a specialist referral then do ask - personall Im trying to avoid it because I love my cons, but if youre feeling so stuck it might be what you need to do.
Holding you close in my thoughts, Sparkly x
Thank you sparkly. I think it's hitting home so much this eve as know things again aren't good. I as much as walked past a smoker and went into a full on coughing fit which was difficult to sort. And now they won't let me lie down and just soo tired!
I'm not gonna give up on my cons yet as he's lovely but can't continue at this level. Will give him a little longer though xxx
Aww Laura, I'm so sorry your struggling again sending massive hugs!!!
When I was really bad the last time my cons put me on triamcinolone injections every 3 weeks and at the time it did wonders for me, I went to being pretty much house bound to being able to live a normal life. Triamcinolone (kenalog) is a steroid injection but it did mean that I could have a much lower dose for the same effect as being on high dose pred with much much fewer side effects. It's quite an old drug but it might be worth considering.
I really hope you manage to get some rest tonight.
Becca xx
Laura, don't be afraid of asking for a referral to a tertiary specialist centre. Before I went to Papworth I was spending more time in hospital than out - and the amount of ambulances being called was embarrassing. I had been so continuously unwell that I had also gone down to six stone, my body was constantly fighting respiratory infection. My hubby later told me - after Papworth had stabilised me, that he was concerned I wouldn't survive (he's a doctor so didn't say that from a lack of understanding, quite the opposite).
I simply cannot compare the level of care at Papworth to a general respiratory department. Both in the ongoing support and management but also in the depth of their work up. My management plan means that since going there I have had no A&E admissions, no ITU admissions and no situations where I've been almost ventilated. Change can be scary but sometimes it's necessary...
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) and getting aminophylline :'-( plus on 4L+ O2 
listening to my total meltdown. 
First Hospital Admission 
Soo bored
Post hospital admission 
