Not sure what to do with current exacerbation

I'm feeling very frustrated with my current exacerbation: not sure what to do, when to go back to GP, when to make a fuss.I don't want to wear him out with my frequent flares, so trying to limit visits to really serious situations. But what the heck does ""serious"" mean when every day I'm spending at least some time with PF so low that ER guidelines would count it as severe or even life threatening? It can't acually be that though because I'm breathing, just not happily or easily.Not doing anyting about this means that I'm basically living in the upper regions of the red zone with occassional but all too short visits into yellow or sometimes even very bottom green. From time to time when PF is really low, I'm also getting a weird headache in reverse – instead of my head feeling tight, it feels full as if my blood vessels all became larger. I'm guessing that's my body responding to less than ideal O2 levels, but I don't really know since I don't have a pulse oximeter at home.This present exacerbation actually started at the beginning of August, but I didn't want to stop the pred taper so I just ignored it. That strategy was no longer possible about two weeks ago: the Jewish holidays were coming up, I had things to organize, and a health scare with my husband (he's ok) also drove home that I can't afford to be so ill day in and day out, that I spend most of the day sofa surfing between each of the days' tasks just so I have the energy and focus to get the tasks done. So I finally went to surgery walk in hours about 2 weeks ago and saw not-my-usual-GP - she wanted to send me to A&E, but I refused. Sent me home with a referral letter anyway and instructions to go back on 50mg of pred for three days, then down to 20mg until I saw my regular doctor. Five days later went to regular GP for follow up. He also wanted me to go to A&E - and sent me off with a letter for A&E asking them to consider hospitalization. Still didn't go because of my lousy experience last time and also because we were supposed to go on vacation. I finally gave in 36hours later after I realized I wasn't going to have much of a vacation when I was having so much trouble breathing I couldn't even sit at the beach comfortably and spent all of dinner talking in half sentences grabbing breaths in between. Finally called the after hours triage nurse who told my husband to take me to the hospital, which he did.... they were very nice, but confused since as per usual I wasn't wheezing and I wasn't silent and I wasn't bouncing off the walls scared and making a show of having difficulty. They sent me home several hours later after deciding I should just do nebs at home. I didn't want to stay in hospital for sure (we were on semi-vacation house sitting for a friend), but I don't really understand the decision given that my venous O2 was 7.8ml/dl and my venous sats were less than 50% - all of which suggests arterial sats in the 60-70% range which surely isn't good. Oh well.But I was such a mess the next day that when I went to the clinic to hand in paper work the nurse got worried, arranged an immediate appointment with the doctor, who sent me to the nurses's station for a steroid+ventolin inhalation treatment. The next time I saw my doctor, I was doing much better so I negotiated for a fast taper – he was leary of going down on pred at all. but I told him I was afraid my body would get used to the higher dose and then I'd need even more pred if things flared up again. So he agreed to a 5day/5mg taper. Since then things have stalled. Some days are better and I think things will turn around. Then I have a day like today where I woke with a sore chest from working hard breathing at night and have been sore on and off all day from muscle strain. On one hand I'm spending more time in the 40-60% PB range than I was two weeks ago, but I'm still dropping down below 30% PB at night and any time during the day when I let things go too long between doses of ventolin.I hate living off of ventolin. I just want to breath well on my own without some sort of ""crutch""..Under normal circumstances I'd make an appointment to see the pulmonologist and get his idea of how to get my breathing pre-ventolin out of the red-zone. But I'm between pulmonologists. So not sure what to do.Postscript: Just to give an idea of how messed up things are: 3 hours ago PF = 120=25% personal best (PB). Do neb. Things back up to 330 - just under 70% PB. But now three hours later, I'm back down to 150 which is 31% PB. My chest muscles are sore and I can hear that I'm not inhaling huge amounts of air, but I can still count to 10 out loud so I can't be too bad.

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  • I cant believe how many of us seem to be in very similar situations. I dont have any advice, you sound like youre about where I was a couple of weeks ago when I got to the point I literally left a cons app in tears after being rather ratty with her telling her I simply couldnt carry on as I was any longer! Ultimately that led to this admission, but I think I could compare it to dieting or getting out opf debt - you need to reach your own lightbulb moment and be ready to accept whatever it takes.

  • I cant believe how many of us seem to be in very similar situations. I dont have any advice, you sound like youre about where I was a couple of weeks ago when I got to the point I literally left a cons app in tears after being rather ratty with her telling her I simply couldnt carry on as I was any longer! Ultimately that led to this admission, but I think I could compare it to dieting or getting out opf debt - you need to reach your own lightbulb moment and be ready to accept whatever it takes.

    When you wrote a couple of weeks ago that you were thinking of going off meds just to speed up the inevitable eventual decline, I didn't post anything but I could really identify. There are definitely times I've felt like that. It is obvious where things are going, but I'm just not bad enough yet for people to look past the confusion of no wheeze+air movement to realize I'm really struggling - and possibly moving air that isn't actually bringing enough O2 into the blood stream.

    I think there is a lot of truth in your point about the lightbulb moment, but I fear that even when/if I reach that point I'm just not going to be heard as you were. But even in your case, did it not take a particularly nasty flare for people to wake up and smell the roses? And same with you, Laurs?

    The question of when we let go and who will be there to catch us, it still a really good point and has triggered a rather long rant/reflection....

    You have a cons that seems to really get the importance of looking at the big picture. My hopefully former pulmo does not seem to be cut out of the same cloth. Numbers don't work: for months I've been trying to tell him that my intra-day variation in peak flow is way out of the normal range and he kept blowing me off. Symptoms don't work: I've told him about night wakening. I've told him about difficulty singing at my usual performance level (actually difficulty singing at any level for more than short stretches) despite ENT confirming that there are no ENT reasons for this and concluding that it is indeed an air flow problem due to asthma. I've told him about SOB and couging during activities that really shouldn't be causing SOB and coughing. He thinks I'm overreacting to non-existant stimuli. He was so confident of this, that he even talked about reducing my ICS once I got off pred at my last appointment.

    My allergist thought I should be given a trial of Xolair: pulmo refused because he doesn't think I really have asthma, and if I do, its just mild. When he's not attributing my symptoms to overreacting he blames it on pred withdrawal.... this even though I've had virtually NO classic symptoms of adrenal suppression. The one and only symptom during this summer long taper was a gradual worsening of two conditions that pred is known to treat: some eczema/psorisis on my leg and, of course, my asthma symptoms and numbers. I should have thought that itself would be a sign that I do have an underlying condition that pred is needed to control and that getting me off pred for any significant amount of time is going to take more than assuming I'm just over-reacting. But no.

    I got the distinct impression on my last appointment that he thinks the only reason I ever got on so much pred to begin with and have trouble tapering is that I just fooled myself and my doctors into thinking I was worse off than I was. But I really find it hard to believe my being back on pred right now is frivolous: this time around 5 different doctors reviewed my meds and everyone of them (two at my local practice, 2 at the hospital, + doctor at out of town clinic) agreed I needed to be on pred again. When one doctor says go up on the pred, that can be a personal opinion. But 5?

    Anyone who knows me well thinks I underreact rather than over-react: I'm the friend you remind to use the inhaler, the woman that makes people turn their heads and say ""are you OK? do you need some water?"" because I'm coughing so hard. (husband says my cough sometimes sounds like I'm dying: to me of course its just my asthma cough and simply means time for another few puffs - so maybe there is some truth to other people overreacting? still its not me that's saying things are really wrong.).. The first time I ended up in A&E this year, it took my doctor three days to convince me I had to go. The second time, it took two doctors and an after-hours nurse over the course of six days. What did one of my best friend say when I told her about my doctor referring me to A&E? ""And you didn't go did you?"" (She's unsuccessfully tried to get me to go to urgent care at least once).

    I'm the person who told the doctor during my recent A&E visit that I'm ""managing"" with a smile meant to reduce concern when in fact I'm working hard at every breathe, trying to read my body to figure out whether I'm over or under breathing because absolutely nothing about breathing seems automatic anymore.. I'm the person who told her pulmo that I was ""relatively healthy"" when in fact I simply meant that nothing was bad enough for doctors to be telling me to go to A&E. (my GP did in fact want to up the pred at least once during that time, but I refused).

    When I was in hospital in May, the woman in the bed next to me told me approvingly ""you look so relaxed"" - in fact I was struggling to make it through until the next neb - I had O2 which helped but some doctor had decided I could only have 3 nebs a day. Just to get through I was pulling out the stops with every relaxation and breathing technique I know (your nightmare when the doctor didn't come back reminded me of that experience). Sure I looked relaxed, but the reason behind it was anything but relaxing.

    On another occasion, a doctor came on rounds while I was having so much difficulty I couldn't really breathe and talk. I had just moved from the bed to a hard chair so that I could have more leverage and brace myself with my arms while trying to breathe. But I must have looked composed, because he couldn't see I was struggling and kept badgering me to talk, until I finally had to marshall my air and tell him, ""I can't breathe"". That did get attention, but I felt like a cheat: it wasn't technically true - of course I was breathing: I just couldn't manage both breathing and talking or even breathing and paying proper attention to another person who wanted to talk - but I wasn't really able to talk enough to be more accurate.

    A friend of mine said that part of my problem is that too much of Britain has rubbed off on me and I need to unlearn it. She said Israelis simply don't get British understatement and mannerisms. Israelis overstate, so doctors downrate my already understante self expression thinking they are getting closer to the truth when in fact they are getting further. But I really don't know any other way. I need to hold things together as much as I can: its the way I get through things and getting through things feels like it is more important even than getting help. I know I'm safe if I'm in charge of myself.

    There is probably some truth to her statement: in my most recent A&E visit, I was seen by two doctors: a young British one and her supervisor. I overheard them talking about my case: she seemed to be pushing for more treatment and tried to explain to him that I really seemed to be struggling to breathe and he didn't seem convinced by her subjective impression. I'm guessing she understood perfectly what I meant by ""managing"" and he didn't.

    But even if my friend is right, I don't see the point: health care shouldn't force us to be play actors making a show just to get attention. And it should also be attentive to our emotional coping mechanism. Acting ill when I am ill, just makes me depressed so I try as hard as possible not to because it makes me feel better even if I'm not actually better.

    But even when I was making it clear I was having problems, they still didn't take on board the big picture. After the ""I can't breathe"" incident during the May hospitalization they finally did an ABG and not just a VBG - but only a couple of hours later when PF had already returned to normal and while I was on O2. During the flare I was off O2 and PF was < 40% PB, so they were hardly comparing like to like.

    Doing an ABG didn't change much - in fact they stopped treating me with hydro after that. Later on when I looked at it and knew more to analyze it, I realized why: PaCO2 was down, O2 was up.... but they clearly never calculated the CaO2 and took into account the hemoglobin : had they done so, they would have seen that my PaCO2 imbalance wasn't exactly unmotivated CaO2 was 14.5 mg/ml despite being on 2L O2 (lower limit of normal is 16 is it not?).

    And no surprise: pulmo didn't catch the oversight either... in fact it was my new GP, NOT my pulmo, who raised the issue of anemia possibly worsening asthma and stressed the importance of addressing the anemia as part of trying to improve the asthma.

    I do have an appointment with a new pulmo - but it won't happen until November 10. That's a long wait. But I don't really expect much. He's the head of the pulmonology department at my local hospital. That would be great if it weren't for the fact that he's also the boss of my own pulmo and another pulmo whom my pulmo asked me to see on consultation. The pulmo I saw on consultation took one look at my % predicted FEV1, ignored everything else, and said ""not asthma-get off the pred"". One pulmo in a department is a personal opinion. Two pulmos? I should think it either means (a) the apple doesn't fall far from the tree and the boss shared the opinion or (b) despite being department head, he doesn't have much influence on his colleagues.

    If I weren't so personally affected, I'd be embarassed. My local hospital is considered a world class hospital, but when it comes to asthma they are still in the asthma=reversible COPD model of asthma = all real asthmatics have low FEV1 school of thought. Studies of sensitive/specificity of objective criteria give FEV1 < 80% a very low sensitivity: estimates range from 20-30% of asthmatics showing low FEV1. GINA doesn't even include FEV1 in its list of diagnostic tests. It only uses a low FEV1 as a measure of exacerbation risk and acute flare severity. However, during acute flares and even during hospitalization, my local hospital doesn't do spirometry to assess progress: they go entirely by symptoms - which given my tendency to cover means I'm not going to be seen as ill when in fact I am.

    Sigh - not sure I've come up with any ideas here. I fell like I'm just rehashing old history, some of which I've already posted elsewhere here. But maybe just laying out my thoughts and letting them settle will give me some ideas?

    Thanks for reading if you managed to get to the bottom of this.

  • It can be so hard to push for what you need - we naturally assume the drs know what theyre talking about (and they generally do) and find it difficult to question them. Im sorry, Im not being helpful, but wanted to assure you I understand and hope you find something to help soon.

    Sorry for the short posts, its all I can do on my phone.

  • Hiya Beth,

    SO sorry that you are also having a rough time of things, and like Sparkly, I don't have any words of wisdom, only to say that I really can empathise with what you are going through the min!! I don't understand how with blood gasses like that you were allowed home!! In the UK, they don't like taking venous gasses as according to a consultant I once had in A&E said (after crying and saying that I just COULDNT deal with an other arterial) they are far less reliable than arterials other than to decide if you are retaining!That said, those numbers clearly aren't good, and if you felt that there was anyway that you could manage that flare at home, then you wouldn't be seeking medical help! I avoid it as much as possible and then really struggle when I am made to feel as though I am always there.

    The ""your chest is clear"" comment really makes me cross, sometimes I think that it would be amazing if they came onto here and saw just how many of us encounter the same issues. I think that if its not an easy fix they would rather consider another diagnosis rather than acknowledge that they are out of their depth!

    Sorry for not being much help, but sending HUGE hugs xxx

  • I don't understand how with blood gasses like that you were allowed home!!I really didn't understand either why they sent me home. I can give myself nebs at home, but I can't give myself O2.

    Maybe it was just oversight? For some reason, even though they did a VBG, the blood gas results were printed out on an arterial form with arterial ranges, so maybe they just disregarded the ""L"" for low on the O2 because they figured its *always* low on VBGs and didn't pay mind to how low?

    In the UK, they don't like taking venous gasses as according to a consultant I once had in A&E said (after crying and saying that I just COULDNT deal

    with an other arterial) they are far less reliable than arterials other than to decide if you are retaining!

    I think they do VBGs to minimize the pain and aggravation to the patient, but it seems to me that things get overlooked that way.

    Although its not terribly reliable (loads of assumptions) and probably involves more calculation than a busy A&E doc wants to do, it was my understanding that one could use the CvO2 to guess at the CaO2 using Fick's principle: O2 consumption rate = cardiac output * change in O2 concentration = heart rate * stroke volume * change in O2.

    Geeky details: Given a normal stroke volume (44*BSA, Cain(2009)) and oxygen consumption rate (108*BSA, Aitken(1986)), the difference between arterial and venous blood is CaO2-CvO2 = 276/HR and SaO2-CvO2 is approx 206/(HR*hemoglobin). The saturation follows from C = 1.34*Hemoglobin*SO2 + 0.003*PO2 and the PO2 term being so small that one can essentially ignore it.

    I don't think that is going to help you avoid ABGs though.

    That said, those numbers clearly aren't good,

    One doesn't need to do fancy calculations to see that. My SvpO2 was 45.7%, PvpO2 was 24.7 mmHg. There are published reference ranges for venous O2, and these numbers are below them.

    The estimated arterial gases don't look any better. Given my hemoglobin (12.5) and my heart rate (103 at arrival, but probably going between 90-110), and assuming a normal O2 consumption rate and a heart with a normal stroke volume, Fick's principle implies a CaO2=10.3-10.9 ml/dl and an SaO2=59-62% (!), It was my understanding that they are supposed to put you on O2 if saturation goes below 90%.

    To be honest I can't really believe the numbers myself. I do think things would have been easier with O2, but at the same time I really was managing. 36hours before when my GP wanted me to go to A&E, he told me that he thought that even if I was moving air, with a peak flow as low as I was going, I probably wasn't getting enough O2. I didn't really believe him, but the numbers suggest he was right.

    The ""your chest is clear"" comment really makes me cross, sometimes I think that it would be amazing if they came onto here and saw just how many of us encounter the same issues. I think that if its not an easy fix they would rather consider another diagnosis rather than acknowledge that they are out of their depth!

    They weren't dismissive. The British doctor really went out of her way I thought to take on board that I might not fit standard patterns. Still she was confused and I only wish I'd had a proper cons letter to help her and her supervisor along.

    I also wonder about listening technique. When she first listened to me, I took breathes as deep as I could without having to really struggle and she couldn't hear me breathing. Then she told me to try harder, but not so hard that I coughed. Then she did hear air movement but to get breaths loud enough for her to hear my entire upper body was shaking with the effort. That was what she recorded as ""good air movement"". If I only have good air movement by breathing with that much effort is that really good air movement?

    The one good thing about this is that at least now I have recent proof that I can sound clear, walk in with good sats according to the pulse oximeter and still be in trouble. It is one more piece of evidence to add to the pot. On the other hand, it is also a little scary because it means that simple standard assessment tools don't work with me. That ups my risk of misdiagnosis considerably, and not because anyone is being dismissive.

    I tend to agree with the ""find another diagnosis"" phenomenon. Last fall I had two ECG's because doctor thought heart attack was more likely than asthma. The other favorite diagnosis seems to be infection - and given that pred can send white blood cell counts that's an easy alternate diagnosis to fall back on.

    Sorry for not being much help, but sending HUGE hugs xxx

    You are a huge help and hugs very welcome! Unfortunately for all of us in this boat, the problem is sometimes bigger than the help. But it will all work out, eventually. I have to believe that.

  • Aw Beth, I'm sorry to hear you're having such a terrible time, I'm afraid I can't offer any advice either, it really seems like the best place for you is hospital though, sending hugs

  • So much of what youve written could be me talking. I too tend to underreact and I also have supranormal PF (best is 180% of predicted!) in fact, Im a singer too! It really, really shouldnt take us getting to this stage to be taken seriously, we should be able to get appropriate treatment at an earlier stage to STOP us getting here! I do hope you find a more understanding and open minded consultant soon - mine are great but Ive still felt like Im banging my head against a wall for far too long.

  • Another yucky day: been down to below 20% PB (below 90 L/m) three separate times today despite having done 4 nebs. I don't feel like I look awful on the outside but inside I feel as slow as a snail.

  • Really think that if pf is below 100 you ought to be heading to A&E. Know you don't want to but there really isn't much worse to get from there. Please keep yourself safe.

  • I agree about heading to A&E, that peak flow's really low. Had a pf that low once in my late teens and was really scary, I only just about managed to crawl to the phone to call my doctor. Hope you're feeling better now/got some help.

  • Hiya Beth,

    I really hope that you are feeling better now! I know that you will probably have some huge reservations about getting help, even with a PF of 90, what percentage of your personal best? I know that my best is 600 (I think my predicted is about 450, but like you I am also a singer, and a woodwind player - sax, clarinet, played a bit of oboe), which like you is above predicted best based on height and gender etc. I know that when I do get to 450, which is 75% of personal best, I start to feel pretty uncomfortable and am in fact into my yellow zone. I know that the lowest PF I have ever got was around 120, and felt dreadful as it was way below 25% of personal best. I find that if I linger at a peak flow of about 250 (or below) even after treatment I am probably in trouble, but my peak flow varies so much I.E. it can be at 200 before I do nebs, yet go to 400 and above after nebs, but then within an hour (when I am really beginning to struggle) it can be back at square 1 or best. So the relief is short lived.

    This is why (despite my old asthma nurse said), the absolute maximum amount of salbutamol I am allowed to use is 10mg within a 4 hour period. If I need this amount, then I really do need to be seeking extra help as purely using inhaled bronchodilators is not enough. However I DO always push these boundaries that I have, resist getting help and I am never able to string more than 2 words together by the time I do get help. I get into trouble for this and 99% of the time in A&E the doctors are very concerned. Arterial blood gasses then only prove the state things are in. What is my reasoning behind this? Like you, I don't display the ""textbook"" asthma traits: I never wheeze really in A&E, but this is purely because there is very little air movement - I am sure they would be quite happy to hear a wheeze! I tend to look very calm and collected, yet resp rate and pulse rate is always far too high - the last visit to A&E my RR was 46 and HR went upto 170, with a normal range pCO2 and low O2. Also my pulse ox sats said I was saturating at 98%, yet the ABG said otherwise - 72%. But it would be great sometimes just to follow the ""normal"" rules. Eventhough asthma shouldn't be excluded in the absence of a wheeze and normal sats as these stereotypes can be very deceptive and frankly dangerous!

    More hugs and hoping that yet more ramblings are of some help, even if it is just to let you know that you are not alone!

    Laura xxx

  • spookymilo, lou, laurs: Just to be clear those lows are pre-neb. A single neb is still getting me to 40-70% personal best for an hour or so until things start dribbling back down to a baseline of 15-30%. I'm still able to keep the nebs spaced every three hours, and my heart rate is about 80.

    The informal action plan I discussed with my doctor a couple of weeks ago was that I'd seek help if I couldn't make it to 2hrs between nebs or my heart rate goes above 110. Neither of which is happening. So I'd rate myself as uncomfortable right now, but I don't think in any danger. Mostly, I find if I take things slow and easy and rest a lot I'm OK.

    I know standard practice is anything below 50% PB should trigger immediate help, but here in Israel they don't go by peak flow. If PF alone is the reason for going in I'm going to just look like a nut case to them. In any case, I really, really don't want to go to A&E without a referral letter from my GP in hand. It is much easier on me if he is the one saying that he has checked me out and is worried about me being at home.

    I really hope that you are feeling better now! I know that you will probably have some huge reservations about getting help, even with a PF of 90, what percentage of your personal best?

    90 L/min = 19% PB. Personal best is 480. Predicted for my age and height is 380. Like you I'm not feeling very good when I'm at predicted, hardly surprising given that its 79% PB. But in this case the difference between PB and predicted isn't really an issue 90 L/min = 24% predicted which in the UK would push me to the front of the queue as having a severe attack, but here doesn't mean anything.

    I find that if I linger at a peak flow of about 250 (or below) even after treatment I am probably in trouble, but my peak flow varies so much I.E. it can be at 200 before I do nebs, yet go to 400 and above after nebs, but then within an hour (when I am really beginning to struggle) it can be back at square 1 or best. So the relief is short lived.

    That's about where I am. I'm responding to nebs, sometimes better than others, but once it wears off I'm back to square one. It doesn't end the exacerbation it just relieves it for an hour or two, sometimes more. Going from 200-400 is not unusual for me either. Tonight I went from 80-340 (325% improvement!). But an hour or so later I was back down to 200 and two hours later I was back down to 130.

    As far as the lingering, I'm not sure where the danger point is. Its very confusing when PF varies so much. I also seem to be very good at accomodating. Several months ago when I was still having days that were mostly in the green zone, going down to 380 would make me very tired. Right now 380 seems like breathing heaven and can do a great deal more at that level than I would have been able to several months ago.

    I DO always push these boundaries that I have, resist getting help and I am never able to string more than 2 words together by the time I do get help. I get into trouble for this and 99% of the time in A&E the doctors are very concerned. Arterial blood gasses then only prove the state things are in. What is my reasoning behind this? Like you, I don't display the ""textbook"" asthma traits: I never wheeze really in A&E, but this is purely because there is very little air movement - I am sure they would be quite happy to hear a wheeze! I tend to look very calm and collected, yet resp rate and pulse rate is always far too high - the last visit to A&E my RR was 46 and HR went upto 170, with a normal range pCO2 and low O2. Also my pulse ox sats said I was saturating at 98%, yet the ABG said otherwise - 72%. But it would be great sometimes just to follow the ""normal"" rules. Eventhough asthma shouldn't be excluded in the absence of a wheeze and normal sats as these stereotypes can be very deceptive and frankly dangerous!

    I think you are reading me right that I'm trying to strike a balance between safety and the realities of the medical culture I have to seek help from. I'm not just pretending to myself that I'm invincible and nothing bad can happen to me. But even if certain stereotypes are dangerous, there isn't anything I can do about them.

    Fortunately, I've never had a heart rate or resp rate as high as yours. I think the highest I've gone is HR=130 and a resp rate in the high 20's. But as I said at the beginning of this reply, right now HR and RR are nowhere near that high.

    Like you, the pulse oximeter and the blood gases don't always agree.

    I think that may be because my lungs can open up and shut down rather fast? Or maybe the reading is very sensitive to how things are positioned on my fingers? Back in May when I was at A&E at a certain point, the pulse oximeter was reading 87% for a good while. A nurse came in and did a VBG. However, when she readjusted the pulse oximeter it was back up to 98% or so. When I later looked at the VBG results, the guestimated SaO2 was in fact 87% not 98%. Granted its a guestimate, but its the best data I have.

    I would so love to be a ""normal"" asthmatic. You shouldn't have to pull out your dusty physiology textbooks and start from first principles just to understand why all the data on me makes sense even if it is not standard.

    More hugs and hoping that yet more ramblings are of some help, even if it is just to let you know that you are not alone!

    Knowing I am not alone right now, is helping more than I can say.

  • Went to surgery for walk-un appointment this morning: saw yet another doctor at the practice. Pulse at rest was 120, but O2 sats were 98%. I hadn't used ventolin for 5 hours before I saw her, but in any case ventolin usually causes my heart rate to go down not up.

    She actually seemed surprised by the O2 sats. She wrote on the referral form that air movement was moderate so maybe she was expecting less O2? (""moderate"" was with me using my shoulders and abs to get a deep breath). Why can't my lungs act like expected?

    Pred back up to 40mg at least until I see my own doctor next Monday. Have a referral letter for A&E in case things get worse.

    The doctor I saw certainly wasn't dismissive, but she gave me a clue about why A&E sent me home two weeks ago. I mentioned to her that the pulse oximeter might not match what's going on inside and mentioned the VBG. Unlike the doctor in Tel Aviv who told me ""this proves you weren't overreacting"", she responded ""not relevant, its venous"". I guess some people just completely disregard the O2 figures as irrelevant on VGBs and don't pause to consider how low is even too low for venous? If all they ever do here is spot check O2 with the pulse oximeter and use VBGs only for CO2 retention, things are going to have to get a lot worse before they get better. Or else I'm going to be stuck in limbo forever.

    How am I ever going to get off pred if this keeps happening? We've (Pulmo, ENT, and some things I've considered in addition) done all the usual differential diagnosis things and nothing turned up. This is the fall: we haven't even begun to get to the worse of my triggers.

    Meanwhile I feel like a fraud because I can't produce the right O2 sats. I have the referral letter, but to be honest, I'd have to be practically not breathing at all to use it.

    I think I'm still anxious too from my former GP who acted like every exacerbation when I was already on pred either meant I had some dread not-asthma disease or else I was just faking it and was really suffering from some sort of symptomless feelingless cognitionless anxiety. So now I feel like the mere fact I'm having trouble puts my self-awareness and mental health on the table as relevant for questioning.

  • Hi Beth, just got to work and read your posts. I will reply later properly, but just wanted to say keep safe and send you a hug!

  • Super glad to hear Laurs that you made it to work.

  • Hiya Beth, Hoping you're feeling better than you were!

    In Israel, if they don't use peak flow values, what do they use as a guage for an asthma attack? In the UK it can be a bit hit and miss about what they do. Last week when I was admitted, they didn't even do a peak flow until 36 hours after I was admitted. That said, I doubt I could have done a peak flow at the time! I can totally empathise with you regarding the point at which you would be struggling at a few months ago, but at where you are quite comfortable these days! I find that in my yellow zone I am ok to the point that I ignore symptoms and don't use my reliever, but in those brief forays into the top of my green zone (albeit far too short lived) I cant believe how good it feels actually being able to breathe properly and not feel uncomfortable!

    I think that in terms of the stereotyping of asthma and not being invincible etc, I think that is something that all of us (or too many of us!) who have had to seek help has experienced. Although I genuinely believe that you know when you need to do something. I certainly do. I think my decision comes when 1. I know that what I am doing at home is not working and 2. I am becoming tired and therefore my judgement is compromised. My HR and RR never used to go as high, but I think that as I have lost control and become more confident in managing attacks at home now things are worse on admission. (NOT something that I would advise or encourage!)

    When I enter A&E, the doctors and nurses always seem surprised by the contrast in my appearance as always look awful), the pulse oximeter readings and ABG results. Though fortunately as a ""frequent flyer"" they are now used to this.

    Surely (not questioning you, but the medical profession) if VBGs are only useful for if you are retaining CO2, then this puts you in stage 4 of an asthma attack, which is the ""near fatal"" end, surely something needs to be done before that stage and therefore treatment should be given. I also thought that all asthma was supposed to be treated as if this was what was happening until there was conclusive evidence that it isn't?

    Hope things are improving and you don't need to get help!!

    Laura x

  • Laurs, thanks for taking the time to respond. How was your day at work?

    Unfortunately, I'm still not doing well. On the good news front I was supposed to chant Torah (musical bible reading from the first five books of the bible) this morning for a Jewish holiday and I got there and read. That was a major victory because I've signed up to read several times this year and then had to back out because asthma made it hard to sing. This time I figured out a way to keep asthma under control enough to do what I'd promised and felt pretty good about it.

    But I also had to pre-treat with ventolin before I read because all morning after 5-10 minutes of on/off congregational singing I could barely support my singing voice with the amount of air I could push out.

    Even with the pred up to 40mg, I've so far racked up 10 puffs ventolin and 4 nebs since midnight and wll probably do another one as soon as I leave the cafe I'm sitting at and going home. If things aren't better in the AM I may need to go back to the GP tomorrow morning. That works out to about Q3 so i'm not ignoring the 2 hour rule, still it seems like a lot more ventolin than I should be using on 40mg pred. i'm beginning to think this is a case of needing more treatment than I can do at home if this is going to turn around.

    In Israel, if they don't use peak flow values, what do they use as a guage for an asthma attack?

    Observable distress, chest sounds, and blood gases.

    Last week when I was admitted, they didn't even do a peak flow until 36 hours after I was admitted....

    PF doesn't add that much if anything to treatment decisions if you are in obvious distress. I believe in those situations the recommendation in both US and UK guidelines is treat first and measure later after things calm down to assess progress. But here they don't even use spirometry to assess progress. Here it is all symptoms and blood gases even though the research suggests that one can underestimate risk of a return visit if one uses only those as discharge criteria.

    I think my decision comes when 1. I know that what I am doing at home is not working and 2. I am becoming tired and therefore my judgement is compromised

    In the final analysis that is exactly when I'd swallow my pride and fears and go in. I know I work hard to breathe and if I ever felt I was getting tired of trying that would be a really bad sign.

    When I was less severe on a day to day basis, I had a three neb rule: if three nebs didn't get me back to green and staying there, I knew I needed things I couldn't do at home and should get help. I never had a problem getting treated either when I did go in because I'd basically done at home exactly what they would have tried as a first line treatment in A&E. But I haven't been in the green zone and stayed there for more than five-six hours straight since May. Also in order to get me off the pred my cons didn't want people treating or upping the pred for anythign other than acute severe attacks. So I've gotten used to a really poor level of control and that rule is much less clear cut than it was. At the moment getting in the green zone and staying there seems like a pipe dream.

    Con's feeling was that I didn't have bad asthma - I was just stuck because my body was used to high doses of pred.  All of the volatility I was experiencing was nothing more than a bad reaction to going off the pred, similar to the volatility some people experience short-term in the days after being treated with hydro. It was worth a try since I really wanted to get off pred, summer is my best time historically, and I figured summer was my one and only chance to get a break from pred.so if he was authorizing a taper I wasn't going to be the one to fight it. Truth is, he wanted to taper even slower than i did.

    But i stopped believing in the this-isn't-asthma-its-just-bad-reaction-pred-reduction approach when (a) my peak flow started getting scary low on a regular basis (b) I couldn't manage being out and about running errands without using more ventolin than the 4xday PRN that is officially prescribed for me. (c) I found out that he was making treatment decisions without the slighest idea of what my PFT results were. He told me that I never had a positive bronchodialator response when in fact my February PFT had a 15.7% increase in FEV1 despite being given only 2 puffs and five minutes to respond. And that was on 30mg steroids and a day when I thought I was doing well. (the 12% cutoff for a positive response recommended by the ATS, ERS, and GINA is based on 4 puffs and 15 minutes.)

    All summer I watched the trendline in my peak flow diary go down, down, down. At first earlier this summer when I saw where the prediction line was heading I didn't believe it. My daily low had never been that low in my life, but it turned out the statistical prediction of my diary was right (I put the data in a spreadsheet which I programmed to do statistical analysis on trends).

    I do believe doctors have a professional right to dissent from standards if they've thought things through and can make a good argument for their position, but I draw the line at not even knowing the relevant facts of my medical history.

    So right now I am in fact feeling a bit confused about where the safety line is and how much suffering I'm supposed to endure before I seek help.

    Surely (not questioning you, but the medical profession) if VBGs are only useful for if you are retaining CO2, then this puts you in stage 4 of an asthma attack, which is the ""near fatal"" end, surely something needs to be done before that stage and therefore treatment should be given.

    That's why I wrote that I fear things are going to have to get a lot worse before they get better.

    But I also suspect my own reluctance to go to A&E is also part of the problem. I think there is something to your frequent flyer comment and them getting used to you and your patterns. Also eventually the evidence that there is a problem does accumulate. Eventually, there would be enough bad blood gases that would show I'm not just ""overreacting"".

    Hope all is well with you, Laurs.

  • Sorry to hear you are still bad Beth though glad to hear you managed to read at synagogue. I'm not at your singing level but I also find it very frustrating when asthma means I can't sing - I've had to have a lower bar than usual for this because of the incense, so that even if generally I figure I'd be able to sing ok, I know the incense will make me worse so I don't like to risk it if already having problems. (May be a rather ignorant question but is incense usually used in synagogues? I know it's not universal in churches of course, only certain Catholic and Anglican ones, but curious if it's used at all in Jewish services). I am hoping to rejoin my old choir when I move to London (going to be living in Hamptstead/Belsize Park btw, to answer your question on my earlier thread) and they don't usually sing in places with incense which will be a relief, though it is a struggle as to maintain a high standard they are strict about rehearsals missed and I find that hard when I have infections/lots of bad weeks in a row.

    So right now I am in fact feeling a bit confused about where the safety line is and how much suffering I'm supposed to endure before I seek help.

    Ooh get this so much! Every time I'm struggling. Though I have to admit there are often quite a few non-medical factors in the mix (I'm busy/got things on/moving this weekend and starting work next week) sort of thing.

    Really hoping you can get closer to a solution soon. I know how frustrating it is to be in this kind of position! I do think it's important for your doctor to know you well especially with more atypical asthma. Even when I didn't agree with what my cons was saying and felt frustrated, I did like that he would say 'that's what I'm thinking at the moment but I'm still getting to know you'. Incidentally, my medic friend, who is not MY doctor but is A doctor and used to live in the same house, is extremely sensitive to quite subtle markers that I'm struggling; he can tell when I think I'm hiding it and no-one would notice, and told me it's in the pitch of my voice, how quickly I speak, how I'm sitting etc. I expect other doctors, given time, could learn these (I wonder if my GP has learned them, shame I'm having to move GP!) but they are really quite subtle and he said it had taken a bit of time to notice them, though apparently the first time I met him, back when I was totally unmedicated and struggling but thought I hid it well and he was a med student, he immediately noticed there was something really off about my breathing.

  • Can't really offer anything except sympathy because I don't have experience of anything at this level.

    I do understand the confusion about when to get help, as pretty much every time I am ill I need more ventolin than is advised to stay symptom free just when sitting still on the sofa. For example, this time have needed 10 puffs to calm things down a couple of times, and on worst days 4+ puffs every two hrs for lengthy periods because symptoms were getting pretty uncomfortable after even less time than that. However, once on pred the only option seems to be ooh for a neb, so unless too breathless to speak no point sticking to seeing someone if 2puffs every 2hrs isn't enough. When I saw gp this week at best time of day I was noticeably breathless from just walking down the corridor and talking, and gp commented on it but didn't seem bothered even though I'm still like it after 3 pred doses. Not saying I actually need more help, as I'm coping fine if I just take as much ventolin as I need and sit still, but am aware that I'm ignoring guidelines.

  • Lungs still being very annoying. Haven't been able to keep PF above 50% for more than a few hours and when it goes down its going down to 25% or 20% of PB. Also developing a chesty cough though still dry so probably just the asthma and not an infection. Chest is also getting sore from working too much. Slept nearly all day, and am still tired.

    I didn't go in on Friday though. I decided though to wait until my scheculed appointment with my regular doctor since I think right now this is more of a ""what next"" issue rather than a crisis. I think it is better for my regular GP to make that decision so that a single person's philosophy is guiding my asthma management.

    Despite being back on 40mg pred for 4 days (up from 25mg), I'm not really any better. And if I look at the past month, I haven't made much progress either. I first went back on pred a week into September. I peaked in terms of wellness mid-month, didn't really make much progress after that, and have been going back downhill ever since we had our first rain. (no rain here all summer, rains only in fall and winter). Humid low pressure systems and my lungs are not friends.

    Don't know what he is going to say. But I really need to get things to a better place.

  • I saw my GP yesterday: decided I should stay on 40mg for a few more days and is going to try to get my appointment with the new pulmonologist pushed forward. He thinks waiting until November 10 is too long.

    We also had a really good conversation about the impact this is all having on my life. It started when I thanked him for raising the issue at my last appointmnt, because he really was the first doctor who has ever even expressed an interest in what living with this might be like for me. Thinking about what Philomena had said on another thread, I told him that the only thing I'd like to change was that when he raised the issue of how this was impacting me at my last appointment he had focus on anxiety. But really anxiety was only one possible response. Instead of the binary question ""is it/isn't producing anxiety"" I thought it was important to look at the bigger picture because when something is a regular part of one's life, (as chronic asthma is), then one brings to it all of the coping mechanisms and strategies one would normally bring. For each person that will be a little different. He really took that on board. I am really impressed with this doctor, but also it was really helpful just to brainstorm a bit about solutions, to talk about how this is impacting me and people I love at a practical level and also to talk about how my being a problem solver sometimes makes it look like I'm in a lot less difficulty breathing wise than I really am.

    Also really appreciated that when he listened to my chest he didn't just notice that air was moving - it was - but also that I was working really hard to make it move. That's usually my problem. I CAN keep the air moving. It just I work really hard at it and then it makes me tired and it is hard to get a lot done.

  • Pleased to hear the appointment went well and the doctor really listened to you. I think its really important to be treated as a whole person and not just a pair of lungs, and while many drs seem keen to use the anxiety card, few recognise other factors - like over calmness, carefully controlled breathing, underreaction etc which can all disguise symptoms.

  • while many drs seem keen to use the anxiety card, few recognise other factors - like over calmness, carefully controlled breathing, underreaction etc which can all disguise symptoms.

    How true.

  • This just reminded me of being in a&e the other day! The staff were concerned that I was attending unnecessarily (despite being sent by my gp with a letter) as though I was sob and clearly struggling my chest was clear and my sats fine. However on admission to the ward and where the staff there know me - have seen me both good and bad commented on how much I was struggling and queried the treatment in a&e. There is a nurse who has seen me a few times and he made sure the drs on the ward have the treatment which was necessary and also despite having apparently good sats, my ABG wasn't good so he also put me on 15L and then a very slow wean also giving b2b nebs etc.

    It's definitely good to feel understood and not dismissed. Both physically and mentally - the nurse I am talking about spent ages with me discussing the impact it must be having on mine and my family's lives. There was no magic wand but feeling acknowledged helped more than anything!!

    Kind of just thinking out aloud!! Laura x

  • Thinking out loud is good!

    I'm really glad that nurse was so helpful. I think in some ways feeling acknowledged is a little bit of a magic wand. At least for me it is. Not of course in the sense that all the issues will go away, but I think it gives me more energy to deal with them.

    I know when I feel acknowledged it is actually easier for me to push myself to try harder to solve problems.

    I don't have to spend the same emotional energy on affirming that I really do have a problem that deserves to be fixed. I feel like I have a right to try hard because the very fact of a problem is validated along with how much effort is involved in coping with it. And also I feel more like I have the right to get temporarily tired when trying is hard. So much of this is trying, trying and picking oneself up over again to try some more.

    I also don't have to spend emotional energy fighting off my wanting to deny the problem myself rather than validate it. When other people in a kind way say ""yes, the problem is real. What are you going to do about it? Who are you going to ask for help?"" then they are dong some of the fight against denial for me and so once again there is more energy left to actually work through how I feel about things and what I want to do.

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