I finally went and saw my pulmonologist today, after my asthma attack that landed me in the ER on Friday. Well actually he was stuck at the hospital doing a procedure, and apparently I was better off not seeing him, as he's sick as a dog! LOL. So I saw his RN, who dragged out of me how sick I've been feeling, and his nurse practitioner NP, who was also terrific. I always feel a bit as if I'm ratting myself out for my own good, but it's sort of a good thing, because no one else if my life really knows how to help me with this.
But I'm kind of upset, because they are concerned about me. And really of course you want your doctor to care, but I would rather be healthy and doing all right!
I tried to post something longer a bit ago, so this will be a bit shorter, and I'll add to it as I have a chance. Basically I have really bad asthma, and it's out of control. Which was kind of relief to hear them say it, as I thought it was, but was worried I was making a mountain out of molehill. If I get most of the symptoms I've been getting I am to call them/and or go to the hospital. Basically because I can get in trouble by doing too many nebs at home, and since I live alone, they would like me there sooner rather than later!
Meanwhile she is going to look into Xolair for me. I think I was tested for this a few years ago, but my bloodwork didn't fit the parameters where they could use it. Who knows. Maybe they've updated some of the guidelines. But also I do take an arthrits med which is similar kind of biotech stuff, and I'm not sure I can take them together. But it was nice she is looking into things.
I'm also supposed to start tapering from 60 pred. tomorrow to 50 for 5, 40 for 4 etc. But it was nice because she said I can stay at the same dose, if I have problems. But to call her within a day or so if I get stuck at a dose, as they don't just want me to be taking a high dose pred. for days without them being aware. Meanwhile, I'm supposed to go back in two weeks.
By the way, I was sounding the best I've sounded in days, but she did hear several wheezes. LOL. Isn't it funny how grateful I was that she heard something!
I don't know it's a lot. I'm worried about my job as I have to keep taking off for apts. However, I don't know what else to do. I've just been stepping out for a few hours to go for the apt., then working around the time by staying late etc. But it's hard to push so much when I'm already sick.
It sounds like e en though you need to come to germs with your asthma javing worsened at least ot seems you jave a fab resp team who are looking thoroughly imto all tje possibilities that might work for ypu.
Also it sounds like youre pretty sick at the moment and might need some time off. Can that be arranged or are you too indispensable?
Hugs and I hope you fsel better soon.
Rose xx
It is kind of upsetting when they say that they're worried about you, cos it makes you feel like maybe they're running out of things to help, but it's also good that they care and want to see you whenever you're struggling.
I hope the pred taper goes well. X
But I'm kind of upset, because they are concerned about me. And really of course you want your doctor to care, but I would rather be healthy and doing all right!
I have a similar feeling. My doctor has been responding the same way and every time he gets all serious and worried sounding it sends me for a loop. It's hard to get one's mind around this sort of thing. We're the ones that are supposed to be worried and the doctor is the one who is supposed to be saying 'nah, its only this simple thing X that I've seen a million times, and here's a simple fix'.
Also agree about the 'ratting on myself' feeling.
Hoping you (and I) feel better soon.
Meanwhile be kind to yourself - if you need to rest, do. I know it is hard to ask for extra help, because i have a hard time too, but if you need time off or other work accommodations to give your lungs a chance to heal up and quit being so annoying, do try to get yourself to ask for them.
it's a naff feeling when the GP looks concerned and says sorry when treatments not working
Hi there,
Thanks so much for the comforting words. It's weird to me how I know my friends and family care, but in a weird sort of way this health journey is one we all do alone. And my body isn't cooperating!!
So I spoke to my NP again, who spoke to Dr. D. (lung dr.), who said something about needing to take my heart into consideration. So I called Dr. D. and my cardiologist and was like ""you need to talk."" LOL. My last pulmonologist (who I got rid of years ago at this point) got in a fight with my card. and my allergist. But I think these doctors will probably like each other...I hope. I think if they talk too, it will hopefully mean if I need testing, it will be what's necessary.
So the last several mornings, well and evenings, have been perfectly awful. Each morning is like a tiny bit better. Yesterday I could actually breathe just a little bit walking very slow.
But I must say my peak flow is about 220-270. Really low for me. And I'm making this crazy crunching sound in my chest when I breathe. Like I feel asleep on my sofa last night, and the noise woke me up!
Right now I've been at the 50 mg. pred. since Thurs. and figure if I am still ""crunching"" on Mon. I will call Dr. D. again.
Right now I'm in a bit of a conundrum as it snowed last night (very pretty!), but I think my apartment has gotten rather dusty all of a sudden and needs some vacuuming. There's no way I can do that. It's very frusterating as I'm sure dust isn't helping, but I shouldn't do too much either. Grrr.
Oh, I feel sort of weird about this too, but relieved. I got an application for a handicapped parking pass which my doctor handed over with no questions. I think I need it at times, but not sure who I want to know about it!
Bee
Hope the heart-lung conversation goes better than the last time around - sounds like it will.
So sorry your lungs are being so naughty.
Agreed even with supportive friends and family, there is a part of this that just has to be processed/made sense of alone. Though I think it helps work through/face the alone processing part knowing that others are there for one. That's at least what I find.
May your slight improvement turn into a larger one day by day.
Hey Bee
I totally sympathize. Im followed by about 15 specialists and they are absolutely useless at telling each other whats going on in the other speciality. Hope your cons sort that out soon.
Sorry to hear that lungs still wont behave. I hope things improve for you soo..
Re A journey has to be made alone. I think in my case it is even more so. I tend to try to hide my pain/symptoms from my family as much as I can as I already feel like a huge burden on them and I dont want them to worry. However not sure this tactic really works as I just end up being stdoppy and they dont know why so that makes everyone miserable
Hugs for a fast recovery.
Rose xx
Ah yes, using my neb. again! Woke up a little bit better this morning, but now back to the crackling in my chest! Things also seemed to have turned a bit yellow.
I think I will have to call out sick tomorrow for work. Weird because I've never taken this many sick days, and don't know what to expect. Also did a few things...literally took out a bag of trash, and washed a few dishes.
Is this bad? I figured it would help cut down on the mold in my apartment. But everything is difficult at the moment.
Yes, I don't like to burden my friends either. I think I do share, but of course don't like to burden them either, as it is boring to have health be the only thing one talks about, but also I don't want to worry them either.
I try to ask for help when I need it, but am also very independent, so I find this hard. Also, I find it difficult sometimes because I have to ask several people and it's hard when people say no, to have the guts to ask a few more times until it works out!
I had a bit of an interesting day yesterday. I met an aquaintance from church, as it sounded like she was having a hard time and needed to talk. I figured I had to eat lunch anyways, and I could lend an ear for an hour. Well, it turned out she was losing her housing yesterday, so I ended up going along for her to look at a room to rent, and that took about 3 hours! Not really sure what to say about that, except not sure that was the best idea either with my current lungs, but she seemed sort of desperate. And it seems like every activity is a problem at the moment.
Bee
Not really sure what to say about that, except not sure that was the best idea either with my current lungs, but she seemed sort of desperate. And it seems like every activity is a problem at the moment.
I find that part the hardest - saying no to friends or else saying yes, but worrying about whether it was wise. Being there for the people I care about is so much a part of who I am.
Also what you and Rose said about not wanting to burden/worry friends, yet still sometimes needing to talk. For me, like Rose, if I don't talk that too eats at one and ends up burdening others in another way through crankiness/moodiness.
I do hope things improve for you soon.
Know you are in my thoughts.
Thanks Beth. That's a really nice thought...that's just it being there for others is such a part of who I am that it's really important to me.
So I called Dr. D. this morning, and am off to see him at 2:30. My lungs are still crackling away. Hopefully I get a some answers and a good plan.
Bee
So I saw my pulmonologist, who was really nice actually. He reiterated that I do have asthma...and he thinks that IS the problem. That he doesn't need to talk to my cardiologist, that things are really pretty straight forward asthma wise.
LOL. He was annoyed that the ER never did a chest x-ray...kind of incredulous actually. He sent me for a chest xray and said he'd call if I have pneumonia, but if I didn't hear from him it is an asthma exacerbation with bronchitis. Got antibiotics.
I also asked him what to do about work, as I know I can't barely walk at all right now. He put me out of work for a week. I've had pretty constant asthma problems throughout the years, but never actually had to take a week off. Sort of relieved though because I didn't know what else to do.
So I let my supervisor know. I suppose I wasn't expecting her to be happy, but it's not like I can help it! She said if my time off exceeds the 5 days I will have to apply for disability, as it is work policy. That sounds scary, but it might have been just a matter of fact statement anyways.
But really, my lungs are crackling away, and it's pretty un-nerving!
I did get permission to do an extra neb. treatment or two. I usually only do an extra one if I'm really tight or something. Do you think constant wheezing would be a reason to add in an extra neb? Some times of day the noise just never stops. Well I guess it is good I am breathing :).
Bee
Glad to hear the appointment went well and that you now have official permission to rest up for a few days. It must be a relief to know its just asthma as other things added in do make life complicated.
Re neb treatments. I should think that constant wheezing would call for anpther neb. If nothing else it will loosen up all that gunk in your chest and help you to cough it up easier thus hopefully relieving the wheeze somewhat.
I wouldnt worry too much aboutthe disability application. You can cross that bridge if and when you come to it.
Take care and feel better soon.
Rose xx
Drinking tea while I'm doing a second neb. now. LOL. Also researching online how to make healthy and easy meals (low salt). Made a short trip out to buy a slow cooker. I haven't had one in years, as they are so darn heavy! But my friend got one that is very light, you can do some of the cooking on the stove to start, and then leave it to cook itself for 5-8 hrs. I figure I will make soup and freeze it. Which will help too once I go back to work, if I can get an easy/convient system down.
But right now I'm back to sitting. Feeling a bit like it can't be my lungs making all that noise! I am grateful though that my doctor is supportive, and employee health seemed a lot more helpful than my supervisor.
Thanks for the advice to cross the disability bridge when that comes. Just trying to relax right now and rest up, but the pred. makes it hard.
I was supposed to go down a dose on the pred. today, but decided not to, as I'm still wheezing almost contantly, and I figure tomorrow might be better, after the antibiotics have kicked in a little bit. Although, luckily, they already do seem to be helping.
Bee
Hope you got some decent sleep.
Take care.
Rose xx
Also hoping you got a good night sleep.
Hi guys,
Between being at my wits end, and feeling like crap! Went down to 40 pred. on Wed., but by Thurs. it was just bad. Now back up to 50. Really can't do anything, as even getting dressed makes me horrifically out of breathe, and makes me cough continously.
I got a refill on pred. yesterday, and my friend was nice enough to go and pick it up for me, as I have to use the hospital employee pharmacy, and there was no way I could have walked that far! Something is just not right on the rt. side of my lung. I can hear this gurgling/crackling sound.
I'm nervous and or uncertain if I'm going to make it into work on Mon. If I still feel like this, it just doesn't make sense! I left two messages for my pulmonologist, so hopefully he will call me back today and give me input. I do think I'm on the right meds and stuff, and I've been eating lots of soup!
I also had a small nose bleed so went to the ENT yesterday as I had a really bad nose bleed about a month ago, and figured it was good to nip it in the bud. LOL. Coughed continously all the way there and generally felt like crap. Pulled out my portable neb. in his exam room. He was really nice about it though...I guess how you'd want your doctor to be! He checked on me, and actually ended up looking at my vocal cords, which was actually really helpful, as he completely ruled out VCD as a possibility. I mean it sucks it's all asthma, but that was useful as I had been sent at some point to do speech therapy by one specialist who openly told me I was crazy. LOL. But I tried it, and it really didn't seem to do much, other than when I loose my voice it can kind of bring it back. So at least that's one thing ruled out I don't have to worry about :).
I also went and saw my Allergist, who is one of my favorite people. I've been having all kinds of problems with contact dermatitis. I have a safe list, but I've had the worst time in the last few months finding certain things on it! Like toothpaste with fluoride, antifungal cream, and cream that helps with cracks on my feet. That and I can't use any of the hand sanitizer/soap at work, so carry my own, and I was starting to feel paranoid as they keep an eye on that sort of thing, and it can appear like I'm not washing my hands because I'm not using the dispensers on the wall etc. So it was just nice as she was like ""if they bother you...show them this 40 page list I gave you that says what you can use!!"" What a relief.
So anyways, I don't know. I guess I will do my best to sit still and hope I feel better by Mon. It's so hard to sit still when I feel wired on pred. and that nebs. And I guess this sort of thing just takes time, right? It's funny. I can be very patient until I'm not.
Bee
Sorry to hear youre still feeling so rubbish. Yes I think it just needs time wich can be very annoying! Hoping you feel better soon.
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Prednisolone dependent - considering controlled reduction in hospital
tapering off steroids
Asthma with fixed airways?
Peak Flow doesn't always drop despite being symptomatic. 
