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Just home from the hospital-advice please!!

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Hi guys,

So I went to the ER early Sunday morning because I was at a 90% position and took three breathing treatments but couldn't lay back at ALL. So they admitted me. It's weird because in some ways it went very smoothly- my pulmonologist showed up within a few hours and saw me every day, my GPs partner also follorwed me over the weekend, and then if I had to stay in over this weekend my actual GP was covering. So it was wonderful to have doctors who know me, as I'm complicated.

I also have a heart defect and a pacemaker, so I ended up on telemetry. Basically it was a test of how much asthma meds they could give me IV, and how not to speed up my heart rate too much because I get SVT.

The part that totally sucked is it took them the entire week to get my home meds straight, and that caused all kinds of stress and problems. And I was not feeling well, and my family is not supportive, so I had to put my foot down quite a few times as they didn't even have all the breathing treatments I was supposed to have in the system.

And then there was the IV sticks from h)((*ll. I guess because of the super high pred and the small dose of aspirin I take basically all my veins just blew. I was on IV potassium. Um, lets see, oh and my blood sugar is very high, but they told me not to worry about that part but to follow up with my PCP. But my friend who is actually diabetic was like ""I was in the ICU for a blood sugar of 320."" But I think they are saying that it will go down with the pred., and I think they don't want me worrying about one more thing. And if I do need treatment, that they kind of want to know my baseline.

So I'm home. I'm on 60 mg. pred. for 4 days then tappering down. Then I also have anti-yeast tablets, and anti- PCP pneumonia prophylactic antibiotics. I think it's because of the high pred, and the psoriatic arthritis meds I'm on. Oh and a bunch of nebs. He took me off of my preventive inhalers, which is kind of nice not to have to use those.

Anyways, sorry for the long post- but what I can really use is some encouragement. No one really seems to understand how sick I am and they keep pushing me to like- teach Sunday School class on Sun. I don't think I should leave my house until at least Mon.

When you come home from the hospital, what do you do and not do? How to do recover and set limits? I tried to ask my pulm. this but he keeps encouraging me to do things. I don't think he gets that I do a lot of things, and that one of my main issues in growing up in a household that didn't even acknowledge asthma is that I don't know what you're supposed to do when your sick. Sometimes this works to my advantage, but sometimes it just makes it so I don't rest up and do what I need to do to get better.

Bee

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Hi Bee!

Ugh, being in hospital never fun. Glad some parts went smoothly but it always takes them ages to sort out meds here too in my experience. And I usually don't have stuff with me! Sometimes it seems like they haven't even heard of some of it!

I completely get where you're coming from as I also find this confusing. The first time I was admitted I wanted to just go to London as planned the next day as I had stuff to do there. The doctors said oh no problem but the nurses and my family and the other patients etc were all 'err are you nuts?' And they were right as I woke up thinking hmmm everything is sooo much effort - no way I was going to get on a coach and go and have a busy day in London, going down the road was too much!

I've gone back to work right after an admission (I had one my first week in my new job so felt I had to) and was ok. I've also gone back right after a nasty attack which got me an ambulance and trip to A&E> I think it should perhaps have been an admission - I was let out with still quiet lung bases and bounced right back in a few days later for a 3 night admission. The paramedics were 'hmmm maybe not' when I was saying in ambo would go back to work the next day! After the admission which followed I had a nice dr give me a total bollocking and say I HAD to rest if she was going to let me home, be off work at least the rest of the week (was discharged on Tuesday) and possibly more depending on how I felt. I saw my GP that Thursday and nearly got sent back in by her! Really wasn't feeling great that week but went back to work on the Monday after about 3 hours'sleep (asthma keeping me up) - I shouldn't have done but didn't want to miss any more work, except I made a hash of it. I shouldn't have gone back till the Wed at least. GP asked me if I needed signing off work. We have a policy that you need a sick note for 7 business days off so I said no will be back next week and she gave me a bit of a look and a note anyway.

I completely get what you mean though about not being sure and wanting to set limits. I actually prefer, though don't like it at the time, to have someone like a dr say NO you need to rest for x days. Otherwise I feel really lazy if I do take more time off and like I'm making a big fuss over nothing and skiving. In March I had an admission, again let out on the Tuesday and wanted to go back on the Thursday but felt really ill just going to bus stop so decided not to and felt guilty even though really I couldn't have worked properly - btu when I got back we had a new project that I was needed on and my being off had delayed it so I felt bad.

The last time I was in, in April. I was lucky as we had holidays over Easter so I could use those for extra time off without taking sick days - that was a worse one, for me, and I did feel pretty much good for nothing. But still felt a bit like I could have done with someone saying no you're right, do x - don't know if that's a bit pathetic of me! I did have the asthma nurse at the hospital want me to take a week off for what really wasn't a bad one in January - she said I would just bounce back in if not but I didn't - that time it was ok. BUt shows I was probably right the other times. Part of it I think is that you don't get any proper sleep in hosp and need to catch up!

Basically I've found that I will feel pretty awful after admissions, that sometimes I'm warned about this (but not often) and don't believe it then just going to the supermarket will wipe me out. I worry about work even though they're supportive (small team, me being off is not helpful) but I have also found the work I do if I go back when I shouldn't is NOT good quality work and will need to be redone or will even land me in difficulties! I once stayed to finish something as I thought I'd need to go to A&E etc and I did but then had to basically redo it when I came back - I looked at ti and thought huh that makes no sense - was just glad I could fix it before someone else saw it! Also going back too early will make me more tired and less able to do stuff long term.

Ooops sorry for long post but guess I'm saying I do know what you mean, it's hard if you haven't got anything 'official' to wave and people are pushing you to do things but I would agree that after that you need to rest and not do things like Sunday school etc. It's taken me a while and I am still not really that sure but I've found in the end, if you can, it's easier and makes things better later if you do rest after you come out because you probably will be surprised how rubbish you feel and for how many days after an admission like that - I keep thinking oh it must be better now and it does get better but is always slower than I expect. Don't know if this helps or is just me but it's my experience - I think the dr in November who told me off a lot for how my lifestyle of rushing around wasn't helping me was probably more right than I like.

Hi Philomela,

Thanks so much for the lovely, long post! It's just what I needed. I don't know anyone with asthma like mine personally either, so I'm so sorry you're going through this too- but that's what it's like, I think my pulm. in a way is trying to help me, because he's afraid I will just sit and not do anything. The irony is I have the opposite problem- but it IS sort of nice. Like he's been telling me I can go outside if it's a nice day, etc. I think he just doesn't want me like wallowing. LOL. you know what's awful? When I'm in an attack and on doses of pred, and trying not to go mania nuts, I end up cleaning out closets and things. Kind of bad for the asthma. But what's really bad is I came home from the hospital to find this absolute STACK of medical records I was sorting out to shred. Yeah, I keep telling them I'm allergic to mail/records (it's the mold I think?) but no one gets how bad it is.

Long term my goal is to get rid of a bunch of paper, because I think this will be really helpful, but I think I'm going to have to pay someone to help me. Hard with the job thing. I'm going into private practice as a counselor which is going well, but I have like one client. But it's so helpful to hear what you say about work. It is a scary step for me, but half my friends are telling me to apply for disability. I actually don't find this helpful. If I need it short term, OK, but I want to be able to do as much as I can. But that's so true about doing stuff, and then realizing later it was messed up. Right now I'm on unemployment, which is good because if I have part time work, as I build, it supplements my income. So hopefully by the time it runs out- in 4-6 months, I will have a private practice up and running. It's been a mind shift but good. I can do paperwork and write sermons, at home while sick (even if I can't walk across a room), and if I'm a bit better I should be able to sit and do counseling with people (much better than running around a hospital like a chicken with my head cut off). It's been hard acknowledging I'm at this point though. But I think looking at things from a different perspective is a way I can move forward. A lot of well meaning friends don't get it though. It's nice to talk to you because you're living your life with everything.

Thank goodness I actually have just a regular visit to see my allergist on Mon. She's been my asthma doc for 10 years (6 before I had a lung specialist). I don't really understand all of what my pulm. is doing, but I know Dr. S. will sort me out and give me some good advice. She's very through and cares about the details. Also it's weird, this attack they wouldn't give me any more than 15 mg. a day of pred., where when I'm bad Dr. S has always given me 60 mg. tapered. My acupuncturist pointed this out to me- that maybe if they'd given me more pred. I would have been able to stay home.

But anyways, I had such a struggle to decide to go in. My pulm. was being all indecisive, but it was my card who was finally like ""if you can't breathe and your heart rate is over 120 you really have to go to the hospital- but you sound OK right now."" LOL, but I knew when I got sweaty again and everything, that off I went. And yeah, it was really traumatic actually. I've made up my mind I'm not doing anything really until Monday. Like literally sitting in one place. LOL I keep telling my friends I can't do things, but I think they just don't understand how I feel. Yesterday my friend brought me dinner and I was like ""I'm sorry but you're going to have to do everything."" So I get up to stand in my kitchen to direct the setting out of food as she wasn't making a whole lot of order. Anyways, I was like ""No really I can't stand here. I can't even walk to the kitchen."" I am just so out of breathe.

I have this constant crackling sound in my chest, but I think this is the improvement! Before I couldn't get anything up, which I think is the silent chest thing. The scary thing is I pretty much go straight from coughing, to out of breathe, not wheezing, silent chest. I had something like this the crackling when I was out of work 2 weeks last year in Feb. When my pulm. was out too. yeah, he just kept saying ""I've never seen you this bad!!"" And I kept thinking, that's because you were out sick when I was sick!!""

So I tried to take a nap this morning but my like 15 pillows weren't doing it. So I've now moved to my arm chair with a heating pad, and two pillows. Ah- bliss. Except of course I can't stop coughing long enough to sleep. But I think a bit of snoozing may be my order for the day. And lots of water.

So nice to have you around.

Bee

Ahh I'm glad it helped. Really sounds like that was a nasty one so I would definitely agree with you resting as much as possible - if you can't even lay out the dinner, that's not good! I wonder if they should let you out really like that - but I guess you will get more sleep at home. The pred is madness though!

This last time I think I felt a little less ughh than sometimes when I leave as they were being good with me - basically I had to leave work early on the Thursday before and go to out of hours who said err what are you doing here and sent me to hospital. But they gave me hydro in the ambulance which is always a tricky one as it gets me to hospital better so they don't treat much but then it wears off if nothing else is given and I get worse again. It's happened a few times now. I don't think the nurse then was happy with me leaving and as I was trying to leave another nurse who I stopped to ask for the way out said err are you sure you should be going?! I persuaded them to let me stay on 20mg as well as I was trying to reduce pred AGAIN - bad idea. The asthma nurse I spoke to on the next day said to increase it to 40mg right away.

Worked from home that Fri but then back in Sat afternoon, which was a little scary as I couldn't talk properly and it was my best time of day, plus no coughing - I have got used to lots of coughing with attacks so was a bit hmmmm when I didn't get that warning, and landed up going straight to resus from triage. But they were really good with me and because of what happened on Thursday were saying they wanted to be sure I didn't bounce again and was ok to leave. But that it was harder to tell how I was doing when better - my chest goes from fine to quiet, so they can't use wheeze to assess! Makes it harder.

It must be really hard to acknowledge you need to change things, but sounds like you have a plan which is good and that it would definitely be better than the running around a hospital! I've had people say they don't know how I do a full time job and sometimes I do think aghh need more stamina (it's ok but can need long hours and I get reallly tired and then worry about making mistakes) but at least it's not running around! There is the commute though which can be tricky - my boss often says oh you should work from home if not feeling up to the commute but I'm not yet well set up for it. And then I have the appointments. I have a new consultant at the same hospital which is such a relief as the old one was really driving me nuts. He did nothing, had an obsession with peak flow. told me off for going to hospital when PF was ok and went on about getting off pred ALL the time without actually offering any useful thoughts on how to do it. The new one so far seems much better and more practical (wants to go on symptoms, says it's about how it affects my life and is a bit more human!). I hope she stays that way...but she wants to see me much more regularly than the old one did to keep an eye on me and provide support. WHich is great but also a bit awkward with a full time job - I feel like I'm using up all my sick time and making things harder for work even though they have been great! So hopefully private practice for you will let you adapt things the way you want them. I do know what you mean about not necessarily getting it if you're not trying to do it yourself - especially with the stamina thing I find. Work leaves me sooo tired at times and it's frustrating as I want a social life as well. And old cons never seemed to get that the slightly higher doses of pred allowed that but at the moment the lower ones leave me good for nothing and then often I get an admission.

I think most of us really just want to get on with life and are probably more likely to overdo it than just sit around. i couldn't seem to get my old consultant to understand how disruptive the admissions etc were to life and how I wouldn't do it for fun but got to the point where even if I didn't think I was going to die I couldn't actually DO anything so felt it might be time for someone to help me out with that,,,, YOUr Dr S sounds like she's really good with helping you and realising the practicalities. I hope my new cons becomes someone like that for me.

I hope you manage to actually get some sleep and things improve! BUt definitely rest would be good at the moment.

Hi Bee,

I wrote a reply earlier but is seems to have disappeared so here it goes again...

I have always been told that no one can really say what you should and shouldn't be doing as it is so individual - to the person and the attack. My friend (who is a nurse) once told me to just trust my body and that is what I do - if I feel I can get up and do something then I do but if you feel rubbish then don't. I have also found it best not to plan - I will go to work on Tuesday etc. as you end up doing things to a schedule and not listening to your body. Like Philomela, I have found that if I return to work too early then I end up doing a rubbish job.

I was discharged nearly two weeks ago and this admission has taken me ages to recover from. Still on pred and have had a few moments where my GP has wanted to send me in again. I have no doubt that the emotional aspect (I didn't feel that bad so didn't expect to be admitted yet alone end up on HDU) and side effects of med play a part in this. I don't think it helps that my hayfever has been out of control the past few days too.

I have found work to be less than understanding about my asthma. I think this is because they see asthma as the mild blue inhaler only type (my boss is one of these asthmatics herself). I can also push it, take loads of reliever to get by and then literally collapse once I get home. I am in an active job so I think this just pushes me on. Despite this, I am currently trying to adjust to worsening asthma and the support I have had for this has not been great (both from my cons and my work). I am currently trying to get occupational health to make recommendations with regard to allergy avoidance etc (my boss still brings a guinea pig into my room regularly!)

Take care

Philomela.

Yeah I'm always worried my doctors etc. won't hear what I hear. I was wheezing yesterday a few times when they listened, but it was at the very end of the expiration, so they didn't hear it! I think I must get the silent chest thing a lot- coughing like crazy, and then just super tight.

Kind of weird. My pulm. took me off of all my preventive inhalers till I'm down on the pred. He said it's just too much steroid- which it probably is with the IVs. It's kind of nice though. It makes things simpler and my brain is just fried.

That's exactly the problems I end up with at work. It's like I wish there was a third way- um, working with a disability? My pulm. is pretty good about appointments. He has evenings which is marvelous, and I see him about every 3 months. But it gets tricky because if I'm sick I have to leave work. And I also have all these other doctors. But that's basically it. Too many doctors appointments for anyone to regard my work schedule as quite normal. I see the rheum. once a month. Recently got put out to every 6 weeks, but then had a major pain crisis and switch biologic meds. Yes, I take a low dose of chemo. for psoriatic arhtrits and actually had an RN from the cancer service come to give me my weekly pills!

I think my consultant thinks I'm obsessed with peak flow- which I'm actually not. I did take it maybe 4x at the hospital- just because I wanted to know what it was. It was very low yellow to yellow. At home it was the same except for the massive times I was wheezing like a chimney and it dropped very red. But it went back up I think after I caught my breathe- just want confirmation that I wasn't crazy, you know?

My pulm. also has this obsession with getting me off pred. too, but I can kind of reason with him. It occured to me, because of my heart issues, there was this like 5 year period where I got diagnosed and undiagnosed with asthma like 5 times. Because I had a negative methacholine challenge test, and it's like practically impossible to have asthma if your test is like that. But asthma meds really work on me, and they've proved that too. SO, in a way maybe this is a blessing- I think he is actually saying I do have asthma- REALLY. Which is a lot after that whole mess I went through.

""I think most of us really just want to get on with life and are probably more likely to overdo it than just sit around. i couldn't seem to get my old consultant to understand how disruptive the admissions etc were to life and how I wouldn't do it for fun but got to the point where even if I didn't think I was going to die I couldn't actually DO anything so felt it might be time for someone to help me out with that,,,, YOUr Dr S sounds like she's really good with helping you and realising the practicalities. I hope my new cons becomes someone like that for me.""

Exactly. I hope your new cons is like this for you too. one thing I'm finding is my friends are all mad at my doctors they can't fix me, but they are just human too. I think I get this, and you guys get this too.

Kayla,

Thanks so much for your words. That's really helpful the listening to my body- because you're right. It will tell me. The part about the guinea pig makes me cringe- yikes- that must be very frusterating, aqward, in your free air space? I'm kind of like that with people who smoke around doorways at work that say ""non-smoking area."" I don't have much against smokers actually- I figure they get a lot of criticism and it's hard to quit, but I need my air and there's a sign!

Like I said I'm a bit perplexed as a few of my friends- my age (mid 30s) and older (50s) seem to think my doctors should be able to help me more. But this is stressful to me, because I'm dealing with all my friend's feelings, and just trying to feel better myself. But that's what you're talking about I think. It's hard getting support that's understanding.

Bee

Just a quick question- I was thinking of packing a bag, or putting together a few things in case I have to run to the hospital again. Do you guys do this, and what do you find helpful to put in it?

Thanks,

Bee

Ahh Bee, I totally get you re the 'is it asthma?' I had all that and it drove me nuts. Also a negative methacholine challenge but I think it may be how they do it? It's claimed to be gold standard but if you don't come off meds soon enough... My current cons and others have said if I was diagnosed age 7, especially with a family history of asthma, it's incredibly unlikely to be anything else but they faffed SO much! I get it on one level as not typical but I do think they didn't really think or join up the dots enough.

Kayla :( re being in and in HDU - that would freak me out! I hope you recover soon but yes that would take a while to get over. And not good re work - I find it stressful enough even though they are good, and yours really sound like they are being rubbish. Have you been re-referred to cons then? Same one? I think sometimes they just don't seem to grasp about having a life etc and seem to treat us as though asthma is our whole life. What about GP re support for work? I guess having cons on board would be good for the 'big guns'. I just got so fed up with my cons acting like actually dying was the only thing to worry about with asthma - employment, life etc nah...and oh you're not dying so ah well.

Bee, re bag - I am always getting caught out! I never think I will be admitted and I don't want to turn up looking like I think I will be with a bag etc. I may hide knickers etc in a big handbag sometimes... But if I do have a bag etc I want:

-Clean underwear and socks (slippers also good)

-Own PJs to avoid gowns

-Poss clothes for sitting around in if don't want to wear PJs/gown all day. Of if you are up to leaving ward etc eg to go to hospital shop.

-Chargers for phone etc

-Toothbrush/toothpaste (though they do have these so I have little caches everywhere lol)

-Shampoo/shower gel - again they usually provide these but they are tricky to get open over here!

-Face wipes

-Moisturiser as skin feels icky

-Lens solution and case (if you wear contacts -I've spent a few nights where I couldn't remove mine as didn't have the stuff on me and would then have had to chuck them!)

-Glasses etc

-Food (never any in A&E. Had argument lol with dr once 'can I have some food if you are giving more pred' 'We'll get you some omeprazole' 'Great thanks...though actually also kind of hungry so could have some food anyway if possible?' 'No we want to sort your breathing'. Always hunngrry lol so snacks are good. And chocolate ;)

-Books or Kindle (seriously the Kindle is AMAZING, I don't know how people did admissions before it! Advise one with 3G as can't usually access wifi)

-Eye mask to block out light

-Earplugs for noise

-Headphones etc (if you want to listen to music but also poss for if people want to talk when you don't. Haven't tried this yet but thinking of it if there's a next time though determined there won't be!

Am sure I'll think of others and perhaps other people can add to this!

Hi Kayla,

Sorry I was trying to follow the lingo as things are called a bit different in the US. I went to the ER and got triaged, and put in a room with a heart monitor. Is HDU like our ICU? If it is I can totally see being especially wiped out by that admission.

I've already decided I need to take it easy for at least a week. And I was just on the floor!

Philomela.

Thanks for the list- these are great suggestions. That's how I feel about my pulm. He's pretty patient, but I think maybe he needs to keep a bit of distance? Like I am kind of confused what I'm supposed to do during the week becasue he told me to get back to life, but I'm not that well.

I am feeling a bit better this evening though. Yeah I totally have asthma. But I also have a swallowing issue (I figured out how to crush certain pills this evening), and finally took some codeine cough syrup- that stopped that never ending cough.

I don't know how people did admissions without a Kindle either. There's this cool thing here where I should be able to check out e-books from my local public library too, so I was going to try to look into that.

Ear plugs are a great idea. I took head phones, and they were awesome.

I know what you mean not wanting to show up with a bag. LOL. It's good to let your doctor think he's making the decision :).

I'll write more later. I'm really tired right now.

Bee

Hi,

Yes HDU was a bit of a surprise and I don't think entirely necessary. (Bee HDU is the High Dependancy Unit - not quite ITU but they monitor very closely). I ended up there because after arguing with 111 that I needed OOH, I walked to A&E and then deteriorated so needed nebs and magnesium. Then had 2 attacks the following night - the first off which the doctor said it was not asthma because my SATs were ok (97) and I wasn't wheezing. Then half an hour later but SATs were 82 despite being on oxygen! I quickly recovered though.

I'm with you on the bag - after that surprise admission (the worst thing was not having meds as it took them over 24 hours to find inhalers etc for a respiratory patient and I ended up relying on salbutamol, pred and Adcal) I ended up in A&E last week with a large handbag of stuff and felt rather daft when I was sent home. However, that feeling was much better than being stuck in hospital gowns and paper underwear using soap which makes my eczema flare up!

Philomela - I was referred back to the same cons at the beginning of the year. Turned out to be fairly easy because I had been discharged within the last 6 months and my Lung Function tests were a bit ofF this time. They still think I def have asthma and something else but can't find that something else yet (had bloods, CT and pH monitoring done so far). My asthma nurse is helping with the work thing-she told me that I need to check their sickness policy which I did and they are not acting upon triggers (4 absences in 12 months) therefore they can't really say much. My GP has also suggested occupational health referral but when I mention it to my line manager, she'll make a small temporary change and then not act upon the bigger picture. It is totally frustrating and not helped by the fact I don't see eye to eye with the manager on a lot of things!

Ug. Yeah that's why I took all my meds. I think they thought I was nuts, but I've been in the hospital before for heart stuff. When I had surgery to fix the artery that was wrapped around my trachea and esophagus, at Johns Hopkins no less, they never did find my inhalers! The first day I saw- the pharmacy student, the pharmacist, and the head of pharmacy. They didn't have levabuterol on their formulary, or both inhalers I was taking. I think I did have them from home so just started taking them! The best was when they finally brought in the respiratory therapist, who I asked about my montelukast sodium, who said ""I don't do pills."" And walked out. I of course was pretty sharp, but also out of it being sick and on major pain medication. I never did get even a neb. treatment. So yeah, thanks guys for making me feel better about taking all my meds. That's why I did it.

About the job thing. It's really hard. Saw my GP yesterday, who was very helpful. Aqward though- I saw his Nurse Practitioner the day before due to profuse sweating/diarrhea, low fever. I never get a fever. Anyways, I was walking out and the NP student rushes up to me. I worked with her for a year on ICU. They set me up to get fired. I was the last person hired, and my co-worker case manager had a major personality issue. She totally bullied me. Oh, and I told my supervisor I was applying for Family Medical Leave. What it does is it lets you flex your schedule and they aren't supposed to be able to fire you if you have it. I have paperwork from 4 doctors in my file. I was fired the day after. Oh, so this NP student rushes up to me and was like ""I just wanted you to know I saw your name and you are an excellent social worker, and I was so upset at what happened, and the case manager is a (can't repeat what she said :). I of course had laryngitis, and was dizzy, and couldn't hear out of one ear. It was sort of wonderful and overwhelming all at the same time. I told her I'd been in the hospital last week, but that I'm going into private practice. So totally should have given her my card- but didn't.

Yeah I was on telemetry (heart monitoring unit) when they finally gave me a bed three days in.

Sorry have to go. I have this really early doctors apt. with infectious disease. A lot has happened on the doctor front. I will post more later.

By the way, have any of you gotten sweats/chills from the prednisone that are so bad you have to change your shirt 4 times? They said the sweats were the pred. But i'ts never been this bad before.

Yours,

Bee

Sorry to hear what happened to all of you, hope that you get better,

For me now its monthes that I took off from work I run a business a private school but without me its closed :c so yes I take ages to recover. Up until now I haven't recovered. Drs too don't knkow what to do, so just sitting at home soo bored. In hospital they want to keep me but I do not stay as they will just give me more attacks. I am severly allergic to perfume and for some reason respiratory nurses have to have too much perfume.

Regarding bag I will take a plastic bag which got my meds in it nothing more. That is always helpful. Oh and my phone charger. I always go with earphones as well and I LISTEN TO STUFF WHEN i can as sometimes I can't either due to the noisy neb or as I am too bad.

Regarding sweating I sweat too much. But its because of me breathing too hard as my lung function is little. So as my rib muscles work too hard I get sweating NOT because of pred. The only thing that pred does is gives me diabetes which is awful. But hey ho will get better at some point hopefully.

I hate early appointments like 11 as I wake up maybe at 12. Just cannot sleep in the night. So I sleep in the morning. I do not know how you manage but seems like you are managing pretty well. I so much want to go back to work but its not happening unfortunately.For me it will be back to hospital.I just keep going and coming from hospital, maybe thats why I hate it so much.

I am the type who has absolute phobia of seeing the docs. They just almost let me die in many waiting areas of hospitals so I just panic if I have to go. I even collapsed in a number of hospitals and according to what I heard the nurses just kept going and coming as if everything were normal until a patient spoke to a doc about me. I can literally sit at home and use a full puffer of salbutamol and refuse to go to hospital like last night. Yes thats 200 puffs roughly.

Anyway hope you get better, and if you have any tips on managing severe (and I mean severe) asthma at home let me know. And any ideas of jobs that I might be able to do would be great as I am a bit lost this is the second time when I will require home nebs. So its a rather chronic problem.

Have a nice day!

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