So if you wake up coughing up mucous with blood...

[PeterPan]

24 minutes ago, Lecka said:

Is it possible for anyone to go with you?  Maybe they could help you to advocate for a plan.  

 

I don't know who I'd take. The irony is, I help other people with prethinking at their medical appoints and self-advocating, making lists, etc. I just don't seem to be very good at my own, lol. I think it's more that I'm not really an EXPERT at this yet.

What I should do is read a book on asthma care standards. That would be really smart. Then I'd be a little more boned up. I really just have an information gap. I just hadn't thought of it. When you're having pneumonia every few months, you're spending a lot of time recovering and getting back to living and not a lot of time researching it.

[PeterPan]

Ok, this is smart. Asthma for Dummies might be my speed, lol. Any other good books on it? Books that specifically go into these flow charts and safety plans.

[PeterPan]

Oh I figured out what "let's not mess around" meant. She put me on 50mg of prednisone a day, lol. It's not for very long, but wow am I hungry! The coughing is dramatically better and my lungs seem calmer. She rotated my antibiotic so it's not something I've been taking. It needs twice a day (no big deal), so I did that. I'm winding down to go to bed. I think that 50mg of prednisone was definitely to make sure I'm waking up alive. I'll set my arnuity with my glasses so I don't forget. We'll just hope for the best. Hopefully I'll be fine.

So yes, if anyone else ever reads this and has blood in their mucous, apparently docs REALLY don't like that. 

[Ottakee]

I agree with the poster above who mentioned the stress/emotions might be because your lungs were getting twitchy not that your lungs got twitchy because of the stress.  Something to consider.  For one of my daughters her stress level goes up when she has trouble breathing/oxygenating.

As to taking the meds, right now you NEED them.  Hopefully in the future you can get to a place where you can prevent the need more but for right now it is like tla doctor told me once, " if you can't breathe then NOTHING else matters".

 

[Lecka]

Once your lungs are irritated by getting sick, it’s going to be a long period of time where you can get sick again very easily and quickly.  For a period of time that’s likely.  You just can’t go from blood to “everything is totally fine” in a short period of time.  It’s going to take time for that to happen.

I think stress matters, but I think the state of your lungs also matters.  You can do everything right and still get sick quickly/easily when your lungs haven’t healed fully, because that is a process that takes time.  

I have two close family members who have very, very high pain tolerances.  However if they have a secondary effect, it can come out as stress/emotion in a way that they can register, but they don’t automatically know why.  

I think you may have a high pain tolerance, and it may make it difficult for you to recognize primary symptoms.  Then you have to use other clues like secondary symptoms, time of year, exposure, and really, really look for any evidence of primary symptoms.  

You may also have to adjust what “feeing bad” means to you.  For so many things being able to push through is great.  For this though, it’s not and you may need to make an extra effort.  

I had an incident recently where my son ripped off part of his toenail and got a tiny cinder stuck under his remaining toenail, and had a bloody flap of skin hanging off his toe, because he kicked the fire pit while he was playing..... and he came inside and put two bandaids on and then went back to playing, and then he didn’t tell me about it for an hour, and then I didn’t look at it until my husband asked me if I had cleaned it, etc, and it ended up with me taking him to UC.  

So I expect this to be an issue probably his whole life, for those times he needs to recognize an illness or injury.

The rest of the time it’s great, he is not bothered by too much!  

He can recognize being thirsty and being too hot, now, because those things happen so often and I have worked with him, and others have worked with him.  

I think being less hungry can be a clue, too.  If you are hungrier now, or maybe other things have lessened allowing the hunger to come through, then that can be another clue.

I know as a parent I look for all the clues and sometimes I will be proactive if realistically my son is probably sick (he’s very slightly grouchy, he seems a little tired at night, he doesn’t get up quite as easily in the morning) because those are all the signs I might have to go off of, when logically he is probably sick because my other two kids are sick and I know kids he had been around are sick.  But it’s obvious he isn’t feeling as sick as they are..... that doesn’t change that he is having the same process in his body as they are, probably.  

I also know for myself with my son, when I have less to go off of, I need to take what I CAN go off of more seriously.  It’s not just one or two little things, when those one or two little things are the tip of the iceberg.  With my other kids it is easier to see the whole iceberg.  That doesn’t change that there is an iceberg, only how much is visible to me.  So it takes more looking for clues, and taking small clues more seriously.  And then adjust any medical advice this way!!!!!!!!!  

[Lecka]

Also I have to advocate more at the doctor because he may look very nonchalant, and they go off of things like that.  

I need to advocate and say “he is acting like he’s fine, however, he has a very high pain tolerance and so we really can’t base much off of how he is acting.”  

With his toe I know his facial expressions, and I was telling the doctor when it hurt while she poked around his toe (before he got lidocaine), because *I* know what his facial expressions are.  But he doesn’t show the traditional reactions that doctors will look for.  

And, I think sometimes he shuts down a little bit so that it is hard for him to be aware, without realizing he is doing it.  

If that might be happening with you, you may want to look for any possible sign you may be unconsciously shutting out pain, and try to be as proactive as possible and take it as seriously as possible.  

I think with my son, he swings from not noticing it, to, if it’s fairly bad, then he swings into shutting it out, and there isn’t that big middle ground.  And then I only base this off of me, *as a mother,* trying to get a handle on this over a period of years.  

 

[PeterPan]

Boring morning update! Boring is good, lol. I was a little scared to go to bed last night, because I knew lying down or reclining was making it worse. I finally went to bed at 1 and woke up at 7. No coughing at that point but I realized my lungs were tight. I think my brain is screwy, because I was having this hyper-literal "you have something in your lungs and your lungs hurt" moment instead of saying GO TAKE YOUR READINGS, kwim? Anyways, no coughing till I did both inhalers. Reading was 440, which is down 10% from where I had been yesterday and a solid 20% from where I would normally, healthfully be. After the albuterol, my lungs opened up enough to start coughing and I had 4 coughs with blood. The first 3 were streaked with blood and the 4th was light pink (not quite to frothy) and had visible streaks. I feel tired and suboptimal.

These numbers are down from the apprx. 7 coughs with blood yesterday and they're down in category from frothy pink to streaked, which is good. And the decrease in my lung function overnight was not as precipitous. I would say the 50mg of prednisone is working and protective. I probably would have been very unsafe had what was going on gotten WORSE.

I'm glad y'all pushed me on the pulse oximeter. I think what I ought to do is make it a regular part of my morning routine and keep it at my bed. That way I'm not having to *guess* whether I should check my lungs or not. And maybe during safe seasons I could do it a little less often, but I think keeping it there as part of a morning routine would be safer for me. That way we get over the sensory junk, over wondering. It doesn't hurt, doesn't take more than 15 seconds. 

I'm pretty tired and now I'd be interested to know what my oxygen is. I'm visibly red in the face and groggy. I would think the numbers would show that. It will be interesting to see if it correlates to flow or to other things as well (what room of the house I'm in, whether I've been outside, whether I've exercised, etc.). Could be very informative. My nutritionist always had this huge thing about oxygen and how important it was for pituitary gland function, blah blah.

[PeterPan]

2 hours ago, Ottakee said:

I agree with the poster above who mentioned the stress/emotions might be because your lungs were getting twitchy not that your lungs got twitchy because of the stress.  Something to consider.  For one of my daughters her stress level goes up when she has trouble breathing/oxygenating.

As to taking the meds, right now you NEED them.  Hopefully in the future you can get to a place where you can prevent the need more but for right now it is like tla doctor told me once, " if you can't breathe then NOTHING else matters".

 

Well definitely the in the moment stress was, lol! Definitely. That's just a normal stress reaction to a situation your body is reading as dangerous. Other times when my breathing has dropped like that, my body has done that kind of stress. I start pacing and getting really intense and saying we need to go, blah blah. Then as my breathing goes back up that calms down. 

The kind of stress I was talking about was more long-term (1-3 months) stressful situations kind of stress, stress that involves lawyers and important stuff, kwim? 

Yeah, I'm really hoping the glutathione will make it easier for me to stay on the Arnuity when I need it. I can't work with the headaches either,kwim? Like it's both. My liver is really cantankerous. I used to have MCS (multiple chemical sensitivities). If I'm having headaches and can't think well to work with my son (who really needs people to be on their best because he has autism and doesn't have a lot of give and co-regulates), then I've ruined my quality of life and affected him. So it both has to work and keep me livable. But let's hope the glutathione takes care of it. More is coming Wednesday, so I just have to make it through till then. It seemed to be working earlier this week when I was pairing it with the Zyrtec. I probably just need to take more. I can also juice lemons to help with my liver, but they hurt my throat right now, sigh.

[PeterPan]

44 minutes ago, Lecka said:

Once your lungs are irritated by getting sick, it’s going to be a long period of time where you can get sick again very easily and quickly.  For a period of time that’s likely.  You just can’t go from blood to “everything is totally fine” in a short period of time.  It’s going to take time for that to happen.

I think stress matters, but I think the state of your lungs also matters.  You can do everything right and still get sick quickly/easily when your lungs haven’t healed fully, because that is a process that takes time.  

I have two close family members who have very, very high pain tolerances.  However if they have a secondary effect, it can come out as stress/emotion in a way that they can register, but they don’t automatically know why.  

I think you may have a high pain tolerance, and it may make it difficult for you to recognize primary symptoms.  Then you have to use other clues like secondary symptoms, time of year, exposure, and really, really look for any evidence of primary symptoms.  

You may also have to adjust what “feeing bad” means to you.  For so many things being able to push through is great.  For this though, it’s not and you may need to make an extra effort.  ...

I think being less hungry can be a clue, too.  If you are hungrier now, or maybe other things have lessened allowing the hunger to come through, then that can be another clue.

I know as a parent I look for all the clues and sometimes I will be proactive if realistically my son is probably sick...

Yes, I had data from my other times being sick and I thought maybe I was choosing not to eat. However this time I was eating noticeably small, abnormal amounts. It had been improving and we were tracking it (day 3 one egg, day 4 two eggs, day 5 three eggs), etc. and it seemed to be doing better. That's where bronchitis and pneumonia are tricky, because the process is brewing even as you THINK you're improving. You realize I ate 3 eggs and then the next day was coughing up blood and down again?? Actually it was turkey burgers. Day 6 I had improved and ate 2 4-oz turkey burgers (no bun) and green beans and quinoia. But still, I was eating more and then BOOM it crashed down. I don't know what to make of that. I need to figure out whether the turn point was, where I had symptoms that I wasn't catching that would have clued me to do something earlier. That's why I'm thinking I need to read some books on asthma. There was a definite turn point where my symptom went from improving to BOOM crashing down again, but something must have been happening earlier in that I could have caught. It's probably lung function or something, I don't know. Like you're saying, my extreme hypo-sensitivity makes certain things not a good gauge I'm going to be way better with numbers.

The nurse at UC asked me for a number for pain, and I was thinking what pain? My neck hurt. I had hurt earlier in the week, and I felt the pressure in my lungs was mild. I said a 2. My usual line is I birthed an 11 pound baby at home, does that sound like someone to ask about pain, lol. I didn't say that. So no, I don't do well just waiting for it to be so glaringly whatever that I figure it out. Much better with numbers and flowcharts. That's why my first pneumonia was so bad a few years ago, because I didn't realize how sick I was. I walked in to UC and they asked me if I wanted a WHEELCHAIR. I looked that bad. And I'm like no... I think they did finally put me in one, lol. 

And thing is, I TOLD the doctor this stuff. I think he just has no way to fathom it. He's young, really young, like probably only in his first few years out of med school. The appts too in-out to be conducive to sorting this stuff out. I like how efficient the office is and that he doesn't bother me. However for warm fuzzies, slowing down, digging in on how you feel, this ain't it, lol. I had looked for a nurse practitioner doing asthma at one point. I even think I found one. I had a lead from someone in the church as well. I could quietly make some calls I guess. If the new practice had a 24 on-call doc, that would be a reason to change, as long as they run their appts on time. I'm disappointed that a hospital office doc didn't have on-call docs even though it was in the system. Gave me no help whatsoever when I really needed some help.

I'm just not sure any of these specialists are warm fuzzy.

If you want and odd twist, I'm actually really sensitive on my breathing function. I don't know why. Maybe because I have data and trained myself with the peak flow meter and all my readings? I'm really attuned to being 10% down and I catch that pretty well. It's this 20% drop that I don't have experience with to know how it feels, and the 30% I had nothing to compare it to, kwim? So it was this totally new feeling at that point, with nothing to relate it to. I know what 10% feels like. I've had the asthma so controlled, I didn't know what the 30% felt like. That I know of, I was only below 20% one time this past calendar year, and it was very fast/precipitous. (I woke up from a nap choking with coughing, must have gotten into some dust or something, and my breathing was unexpectedly going down.) I had the pacing with that, but I the symptoms beyond that I noticed were the pacing and adrenal surge from the stress. This with the bronchitis went lower and slower, so I wasn't making the connection. That's why I'm saying I probably need to use the pulse oximeter, because that can arbitrate more quickly and give me a routine and baselines. I can know ok when my oxygen is at this level, this is how my brain functions. That would be objective data for me to work with. Tying it to breathing leaves a lot of variables (whether you've been exercising, whether you're already congested, etc.). The oxygen levels would be more absolute, because obviously your brain always needs oxygen to function, irrespective of those other variables.

So yes, it's the sensory making it harder. I had told the doc that two years ago, but he's young. I need to check, but I think my kids also had something in their genes about how they respond to inhalers. We're still waiting on my genetics results, so we'll see. It wasn't a not at all, but it was a decreased improvement. So there could be this assumption oh the person took their inhaler and then you don't get the normal/typical level of improvement. As a person of no experience, I wouldn't realize that. It would just be happening.

[PeterPan]

50 minutes ago, Lecka said:

Also I have to advocate more at the doctor because he may look very nonchalant, and they go off of things like that.  

I need to advocate and say “he is acting like he’s fine, however, he has a very high pain tolerance and so we really can’t base much off of how he is acting.”  

With his toe I know his facial expressions, and I was telling the doctor when it hurt while she poked around his toe (before he got lidocaine), because *I* know what his facial expressions are.  But he doesn’t show the traditional reactions that doctors will look for.  

And, I think sometimes he shuts down a little bit so that it is hard for him to be aware, without realizing he is doing it.  

If that might be happening with you, you may want to look for any possible sign you may be unconsciously shutting out pain, and try to be as proactive as possible and take it as seriously as possible.  

I think with my son, he swings from not noticing it, to, if it’s fairly bad, then he swings into shutting it out, and there isn’t that big middle ground.  And then I only base this off of me, *as a mother,* trying to get a handle on this over a period of years.  

 

Hmm, I don't play games with the docs. At home, nobody notices, so it wouldn't matter. But at the docs, I'm kind of dramatic and let it all hang out. Like I went in with very dirty hair, flip flops and a fleece jacket, and I slumped. I didn't try to pretend I felt better than I did. I made sure they could see it. If I had washed my hair, sat up straight, dressed properly, etc., it wouldn't have been as obvious. Yes, I've had enough other appts that I've learned these people can't guess. Sometimes I've gone in with people (my dh, my mother), and they'll say things. Just showing up with that person says a lot, because it says you weren't well enough to drive. I wasn't this time either, but I didn't have anyone easily, sigh. 

I don't know why I don't take someone to appts. If I had the right person, it would be useful to me, hmm. 

So yeah, I find ways on that. Like I knew it would have been more decent had I showered, but I wanted it to be informative. I didn't feel up to showering, and a person who hasn't showered in 5 days kinda looks like they're sick, lol. Adding: I feel well enough today to shower and will go do that in a bit.  

Yes, I used to dissociate with pain. I did some work with a counselor so I can be more present and in the moment. It basically takes mindfulness and saying to face the pain instead of walking away from it and turning it off. It was sort of a Spock thing, a strength in a way, because I could turn it off. But it wasn't healthy or safe. So now, if I have pain, I burrow into it and do mindfulness and embrace it and try to feel it. It sounds perverse, but it stops that sort of disconnect. As an adult I was ready to do that. There are ways to do guided mindfulness with a child. I don't know that it's any more painful to burrow in and feel the pain than it is to dissociate. LIke if you said oh that's hurtful, let him dissociate, I'm no sure it's more. It's different, but it's informative and doesn't make it last any longer. The task still feels the way it feels and the neurological stress of the pain is still the same. It's just more that I was ready to say ok I want to feel life and not be disconnected from it. Like Jesus on the cross said I want to feel it, don't take it away. 

Whatever, that was a total rabbit trail. I don't know your ds. Some mindfulness other times might let you see if that's a place he could get to at some point cognitively. It's a safer place, if you're actually feeling it. It's hard to put words to pain. The interoception book has some though I don't necessarily use them. Sometimes focusing on the location is enough. You know, i'm not sure I've done a lot with mindfulness of my lungs. I had been working on mindfulness with my arteries/veins, with my blood. I've gotten to where sometimes I think I almost feel my blood coursing. It's interesting. The things that are underneath are harder. Things on the surface are easier, because you can do tapping exercises to feel them and then know what you're feeling, where you're feeling it. So tapping exercises with mindfulness are a way to improve that sensory/mind connection, but it's harder to for something underneath like lungs, lol. 

[PeterPan]

3 hours ago, Ottakee said:

  For one of my daughters her stress level goes up when she has trouble breathing/oxygenating.

Can I bring this up again? So you're saying not EVERYONE has that stress reaction when their breathing drops? That's useful. I had no clue. It's kinda dramatic on me, because I start pacing and get really intense. But that's a 25-30% thing, a danger level, not just 10%. 

Well I'm glad I wrote all this stuff out. I've already forgotten a lot of the things, but I've got the paper right here. Good strategies like that help me. I can try to call on a new doctor. I'm just not sure anyone else would be more warm fuzzy. The on-time and appts, no hassle policies, them calling in the scrips so stuff is at the right location and ready, that stuff all matters too. I wouldn't want to give up those features. 

[Lecka]

I would guess everyone’s body is making a response to the difficulty breathing and releasing chemicals.

Different people will express or feel that in different ways.

Some people might notice a feeling and have thoughts like “oh I’m really sick” or “I’m not breathing good.”  Other people might not notice exactly but start pacing.

I think it’s like with anxiety, there is a connection between brain chemicals and physiologic responses and then how those are experienced.  

Where if your heart rate rises for any reason, that triggers physiologic responses, and those also trigger the same physiologic responses as with anxiety, so some people feel anxious.

Because when we are anxious we also can have our heart rate rise and start breathing more quickly and shallowly.....

[ktgrok]

When you drop even 10 percent you probably need to jump on things. 

For me, by the way, what I notice is being tired, and taking more pauses when I speak in order to breathe. 

[Pippen]

11 hours ago, PeterPan said:

And really, the doc had said they'd be aggressive. It's just with my screwy brain, I wasn't calling. I didn't want antibiotics, so I wan't calling. 

So I've got the 

-any sore throat

-any cough

-any allergies needing zyrtec

Are there more scenarios for my if-then page? Some of it I have down pat. I already know how to get pneumonia, lol. Don't need any charts for that. And for the treatment moments where it's low, that's just obvious stuff (meter, albuterol, meter, blah blah). It's more just the viral stuff that gets me. Would it be good to call BEFORE it goes into my lungs? I mean, honestly, I was so doggone sick, SO sick, it was totally obvious it was going to go into my lungs. You could tell that last Saturday night when it started. I was having horrible fevers, body pain. This was never going to be just a sniffle and move on. This was a dragged out war. So should I have called when it was in my sinuses, like before it ever migrated to my lungs?? Or just when it went to my lungs? 

Cuz really, he'll do anything. I just have to pick up the phone and ask, and it's realizing WHEN to ask. Which, you're right, for me means a stupid flow chart, lol.

Ok, seems to me my chart should say -any viral exposure while under severe stress---> immediate call. Because that's the difference. I kicked a virus a few months ago when I wasn't stressed. But this time I did all the same stuff but just with way more stress on my system. The prednisone could have made up the gap.

For me, I'd need any post-nasal drainage that isn't minor and/or lasts more than 2 day on that list.

I had the same situation as you where my normal peak flows were high. I had my doctor draw up a new set of ranges to tell staff when I called because I'd be feeling terrible and the nurses would be saying "Oh, you're at ____, that's not so bad."  For me, ____ was in the low end of the yellow range.

Also, do they have you using a nebulizer or just inhalers?

During the years when I was pregnant and nursing I was trying to avoid using medication as much as possible so I didn't jump on asthma symptoms right away and/or medicated less than I should have. I also didn't have a treatment plan that was working well. After my last baby was born it flared up in a big way and it took a year to bring it back under control to where I wasn't on meds most of the time. Every since that time  my motto has been DRUG EARLY, DRUG OFTEN. When it comes to asthma, I actually wind up needing less medication by medicating sooner and more frequently, than I do by waiting.

In end it was me who came up with the asthma treatment plan that my doctor didn't hit on. The key to reducing medication use for me was to start both my albuterol and my steroid immediately when any symptoms started up that were my triggers (allergies, cold, chest congestion, post nasal drip, etc.). My allergist had me starting the steroid only after the asthma symptoms started and by then  most of the time it was late to avoid lengthier medication use. This means that I have unexpired prescriptions for albuterol and my steroid on the shelf at all times so I don't get caught needing them when the doctor is on vacation or it's a holiday. It means sometimes I wind up disposing of expired prescriptions that I didn't need. I rarely have asthma flare-ups any more and when I do they're less serious and settle down quickly.

[PeterPan]

1 hour ago, Ktgrok said:

When you drop even 10 percent you probably need to jump on things. 

For me, by the way, what I notice is being tired, and taking more pauses when I speak in order to breathe. 

I think I have big lungs or something. Well that and my peak flow went up 10% or more when I started working out more vigorously (weight lifting, etc.). So my peak flow is normally around 540 or higher now. I've actually had days when I was lifting a lot (more than my body weight) that I was hitting 560 as my norm. So for me, 10% just doesn't feel good and means I'm not getting the oxygen I need to feel good and function, but I won't be breathless. I'm sitting here thinking about it, and breathless with stairs for me is 15-20%. Breathless in the shower, 20%. Breathless walking on level ground is 25-30%. But other ladies here on the board seem to run 250 as their norm. So 10% down on that would be really tight, not as much wiggle room as I have. I think maybe 340 was average per the charts for my height and age when I looked. But when my lung function is healthy, I'm at 540-560. 

I really think the pulse oximeter is a wise move, because the tissues need oxygen, whether I'm panting or not.

[PeterPan]

3 minutes ago, Pippen said:

For me, I'd need any post-nasal drainage that isn't minor and/or lasts more than 2 day on that list.

I had the same situation as you where my normal peak flows were high. I had my doctor draw up a new set of ranges to tell staff when I called because I'd be feeling terrible and the nurses would be saying "Oh, you're at ____, that's not so bad."  For me, ____ was in the low end of the yellow range.

Also, do they have you using a nebulizer or just inhalers?

During the years when I was pregnant and nursing I was trying to avoid using medication as much as possible so I didn't jump on asthma symptoms right away and/or medicated less than I should have. I also didn't have a treatment plan that was working well. After my last baby was born it flared up in a big way and it took a year to bring it back under control to where I wasn't on meds most of the time. Every since that time  my motto has been DRUG EARLY, DRUG OFTEN. When it comes to asthma, I actually wind up needing less medication by medicating sooner and more frequently, than I do by waiting.

In end it was me who came up with the asthma treatment plan that my doctor didn't hit on. The key to reducing medication use for me was to start both my albuterol and my steroid immediately when any symptoms started up that were my triggers (allergies, cold, chest congestion, post nasal drip, etc.). My allergist had me starting the steroid only after the asthma symptoms started and by then  most of the time it was late to avoid lengthier medication use. This means that I have unexpired prescriptions for albuterol and my steroid on the shelf at all times so I don't get caught needing them when the doctor is on vacation or it's a holiday. It means sometimes I wind up disposing of expired prescriptions that I didn't need. I rarely have asthma flare-ups any more and when I do they're less serious and settle down quickly.

When you say albuterol and a steroid, you mean like prednisone? Or you mean the inhaled steroid like the Arnuity? 

And yeah, that's why I'm reluctant to change, because this doc's office is really easy to work with. It's more just, like you're saying, figuring out exactly what would work to stop it. If you're saying you go on prednisone any time you hit 2 days drainage, that's significant. That's before it turns into a cough. It's more precise, because maybe I'm not really noticing my coughs or perceiving them well. But more than 2 days of that drainage where you feel it going in, that's over the line from yeah we're gonna kick this and into it's gonna settle in. If it was minor, it would be fast. But to wait for prednisone until it's already settled in and you're coughing, well that's asking for help to get unburied during a cave-in.

[Pippen]

4 minutes ago, PeterPan said:

When you say albuterol and a steroid, you mean like prednisone? Or you mean the inhaled steroid like the Arnuity? 

And yeah, that's why I'm reluctant to change, because this doc's office is really easy to work with. It's more just, like you're saying, figuring out exactly what would work to stop it. If you're saying you go on prednisone any time you hit 2 days drainage, that's significant. That's before it turns into a cough. It's more precise, because maybe I'm not really noticing my coughs or perceiving them well. But more than 2 days of that drainage where you feel it going in, that's over the line from yeah we're gonna kick this and into it's gonna settle in. If it was minor, it would be fast. But to wait for prednisone until it's already settled in and you're coughing, well that's asking for help to get unburied during a cave-in.

By steroid, I mean inhaled steroid (nebulizer delivered, which I prefer). I haven't needed prednisone in years. 

My doctor told me it took a week for the inhaled steroids to kick in. Also, some work better for different people, so she had me try a few before settled on one that worked best (in my case Pulmnicort). Eventually she also had me switch from albuterol to Zoponex.

[PeterPan]

21 minutes ago, Pippen said:

By steroid, I mean inhaled steroid (nebulizer delivered, which I prefer). I haven't needed prednisone in years. 

My doctor told me it took a week for the inhaled steroids to kick in. Also, some work better for different people, so she had me try a few before settled on one that worked best (in my case Pulmnicort). Eventually she also had me switch from albuterol to Zoponex.

Ok, I had looked into portable nebulizers last fall, and they weren't actually too expensive. So you're saying I could have a scrip for the med that goes in the nebulizer, use that as soon as it seems to be going into my lungs, and boom? That would be way smarter than asking for prednisone every time. I can totally see where if all I had to do was say it's going into my lungs, use the nebulizer with the steroid, boom done. That would work. That I would get done and not feel badly about. It's when you say well is this going to turn into a cough that leads to bronchitis and needs prednisone and a call to the doc, well that's more complicated.

So I thought the nebulizer was only to deliver a better version of albuterol more potently. It hadn't occurred to my pea brain they could put something else in it. THAT would unlock a lot of possibilities. I'd be HAPPY, more than happy, to plunk out for a nebulizer if I could put a steroid in it and stop this stuff that happens to my lungs. I'd plunk out the money for that, no problem, definitely.

Why Zoponex? 

Also, this is a GP or a pulmonologist? The pulm I see is just like this is the chart, here's where you're at in the chart, this should work. When I said I wouldn't take Singulair (which has a significant history of psychiatric side effects, not a good idea for me), he just wasn't offering up other options. There's not that let's dig in, let's sit down together and plan. And I don't care as long as my plan works, but if some other kind of doc is good at making plans and there was a way to know I'd be finding that kind of person, I could try.

[PeterPan]

The library has Asthma for Dummies as an ebook. That would be a start, lol. It has tons about the meds. I don't know why I didn't read anything before. I must have been swamped and not caring for myself. It's pretty obvious I could advocate for myself better if I did some reading, lol. 

If you have a book you really liked holler. Otherwise, I'm starting with DUMMIES. 

[Pippen]

1 minute ago, PeterPan said:

Ok, I had looked into portable nebulizers last fall, and they weren't actually too expensive. So you're saying I could have a scrip for the med that goes in the nebulizer, use that as soon as it seems to be going into my lungs, and boom? That would be way smarter than asking for prednisone every time. I can totally see where if all I had to do was say it's going into my lungs, use the nebulizer with the steroid, boom done. That would work. That I would get done and not feel badly about. It's when you say well is this going to turn into a cough that leads to bronchitis and needs prednisone and a call to the doc, well that's more complicated.

So I thought the nebulizer was only to deliver a better version of albuterol more potently. It hadn't occurred to my pea brain they could put something else in it. THAT would unlock a lot of possibilities. I'd be HAPPY, more than happy, to plunk out for a nebulizer if I could put a steroid in it and stop this stuff that happens to my lungs. I'd plunk out the money for that, no problem, definitely.

Why Zoponex? 

Zoponex because it doesn't raise heart rates as much as albuterol.

I use nebulizer solutions for both of my asthma meds, I use them both preventatively (not just one or the other), and nebulize with the steroid after the albuterol or Zoponex. I also have an albuterol inhaler which is easier to stow away to always have with me at work. 

[PeterPan]

Pippen, you're seeing a GP or pulmonologist for this?

[Pippen]

6 minutes ago, PeterPan said:

Pippen, you're seeing a GP or pulmonologist for this?

At the time it was my allergist, because I was needing allergy shots . Now my GP just writes it, according to the plan worked out with my allergist. 

[school17777]

How are you feeling now?