It's enough (new buddy here)

Hi there,

I already apology for my poor english. I'm a french speaking guy from Québec (Canada) and I end up on your board because is the only active and interesting one I found about asthma.

I'm a 23 year old, severe asthmatic since I was 2 and in the last year it got worse. Until last summer, even if I'm experiencing symptoms all day long, it has been a long time since my last bad attack. In august last year, I got a very bad attack but it was rapidly controlled and I ended up just a couple of day at the hospital. In November, it continue to worsen. In addition of my asthma, this time I got the Influenza and a pneumonia. After a night on the BPAP and two weeks at the hospital, i can finally go home. In march this year, I got a REALLY bad one. A status asthmaticus. I needed to be intubate 2 times, passed 5 days on the ventilator and ended up in ICU. The ICU doctor said it almost killed me. I was released from the hospital 10 days after my admission. 20 days after I come back home, I had an other status asthmaticus. Needed to be intubate again, 24h on the ventilator and 3 days in ICU. I was released the Monday night and I had an appointment with my pneumologist the Tuesday.

When I saw my pneumologist, we had an confrontation about my medication. She finished the appointment by saying that I'm taking my Ventolin for ""psychological comfort"". She also wanted to reduce all my medication. I also did a monologue about how I'm unable to perceive my dyspnea and, although she was humming all the time, she doesn't listen to me. She always cut me in my explanations to try to propose another reduction of my meds.

At this time I take

-Atrovent, 2 puffs, 4x/day

-Seretide 250, 2 puffs, 2x/day

-Ventolin, 2 puffs, PRN, max 4x/day

-Prednisone, was on 50mg but I taper to 25mg tomorrow morning

-If my PF got down or I used too much Ventolin (more than 4x/week), I bolus with Flixotide 250, 1 puff, 2x/day for 3-4 weeks

-If the Flixotide bolus is not enough, I bolus with Prednisone, 50mg for 10 days, then 30mg for 5 days

Even with all this, I still feel short of breath and I feel my chest tight.

I'm sick of all this crap. My asthma is shutting down all my projects and need to find a solution before the next big attack.

16 Replies

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  • Hi and welcome!

    Sounds like you've been having a fairly bad time there...and it is really annoying when asthma messes with your daily life and things you want to do. I've not been in ICU etc so can only imagine how disruptive (as well as scary) that must be but I have had the 'asthma interfering with work' even without being in hospital and it's very frustrating.

    Just to check, when you say Ventolin no more than 4x day, is that what you are actually taking based on when you need it or has your doctor told you not to take more than that? You probably know this already but don't limit yourself if you feel you need the Ventolin and you've gone over this many puffs.

    I have no idea what your options are with healthcare or how the system is set up in Montreal, but if you possibly can I think a change in doctor might be a good idea! I think most of us on here have had problems with doctors not listening at one time or another. It's very frustrating but in your case it could be actively dangerous if your doctor is ignoring the fact that you've had such serious attacks and is trying to reduce your medication all the time instead of thinking of ways to deal with it!

    Do you have a general or family doctor you see as well as the pneumonologist? If so do you find he/she is easier to talk to and listens? Perhaps you could make an appointment to discuss what's been happening and ask if you can see a different specialist.

    Do you have any way to get in touch with the ICU doctor who saw you? This may not be possible but I thought perhaps you could get in touch with them and ask if they could speak to your pneumonologist and tell her what they told you about how serious the attack was. Over here everyone has to have a discharge letter when they leave hospital but perhaps your pneumonologist has ignored these and an actual person speaking to her would make the point better.

    In the UK (and I think in America) there are special centres for 'difficult asthma' that you can be referred to when asthma isn't under control even with a specialist. Do you have anything like that in Canada and could you perhaps ask your 'general' doctor about it?

    Also - I don't know if you have this but on this website there's a helpline you can call to speak to specialist nurses about asthma. You may not be able to call that from Canada (and they probably wouldn't know about the Canadian health system) but if you have anything at all similar it might be helpful to call or email them for some specific advice.

    Good luck! I hope this has helped and that you find a more helpful doctor and some solution as clearly you don't want to be in and out of ICU and hospital!

  • Welcome to the Asthma UK forum!

    So sorry to hear you are having a rough time: both with your asthma and your GP.

    I would definitely follow up on Philomena's suggestion to take advantage of the asthma UK helpline.

    As for your doctor:

    a) do you keep a peak flow diary and take peak flow before or after ventolin? Sometimes having those numbers can help a doctor feel more comfortable about your using ventolin because you really need it and not for emotional comfort.

    b) what are your reasons for believing she's wrong? given you were upset by her thinking your ventolin use was for psychological comfort,, you probably have your reasons for thinking she's wrong. Sometimes it helps to write the reasons out.

    c) did your doctor give you reasons why she thought you were using ventolin for psychological reasons? is it possible your doctor was worried and saying more what she hoped is true rather than what actually is true? 50mg pred is supposed to keep major attacks at bay, so doctors get worried when it doesn't and start looking for things other than asthma that might be going on, even if it makes no sense.

    d) is it possible that your GP thinks your asthma is a lot more mild than it actually is? how much do you communicate with your GP between crisises? does your GP have a chance to see problems develop and perhaps take corrective action *before* you end up at A&E with an emergency situation?

    e) what is working well with your GP? can you leverage that to improve the communication between you and your doctor?

    Even really good doctors can sometimes fall into the ""maybe its anxiety/psychological"" line of reasoning. I had a really bad week about a month ago where i made two visits to urgent care - nothing even close to your experience - i was sent home after a dose of dexicort both times. But after the second ER visit, my doctor was NOT happy and launched into ""m'aybe its enxiety and not asthma"". It really upset me because at the time of the appointment I really didn't know if things were on the mend or I was on my way to urgent care visit #3. Instead of coming up with a game plan if things went bad again, we spent the entire meeting discussing why his anxiety idea made about zero sense to me and even after that i left feeling i wasn't getting through to him. I felt ""talked at"" rather than listened to and to make matters worse, I suspect he felt 'talked at"" too!

    In hindsight I think he was trying to think creatively, but had only partial information to work with. I also think that there might have been an element of ""I'm worried about my patient, I feel like I need to do *something* and all the usual things aren't working. So lets throw a hail mary pass over the psychological fence"". Increasing asthma medication isn't really a good option at this point because I'm already on high doses of both inhaled and oral steroids and we are trying hard to taper the pred. About the only option he had was to come up with a non-asthma problem and 'do"" something about that.

    However, a week or two later I made another appointment where we talked about our communication process and also briefly touched on it being hard for him to have a patient who wasn't getting well. I think the conversation has helped a lot, though only time will tell.

  • Just to check, when you say Ventolin no more than 4x day, is that what you are actually taking based on when you need it or has your doctor told you not to take more than that?

    My pneumologist is really against Ventolin. Weird but true. She said if I need Ventolin everyday is because I don’t take enough ICS. Before my big attack in March, she was trying to put me on the Symbicort SMART. I wasn’t pleased with that. 3 weeks later I ended up in ICU. In my « action plan », it’s not a real one made by her, but I take all she said in the last appointment to make one, if I need Ventolin more than 4 times in a week, I need to bolus with Flixotide. So for the max 4 times in a day, she really mean that I can’t take more than that, it’s 2 puffs 4x/day (total of 8 puffs) MAX.

    Therefore, I’m not dumb, if I need more, I’ll take more.

    At the last hospitalization, the ICU doctors put me on Atrovent. It was at higher doses at the hospital, but when I was released, they continue the Atrovent 2 puffs 4x/day, at regular hours. With the Atrovent, I need less Ventolin, but I still need it at least 4-5x/week. At the appointment with my pneumo, she wasn’t very pleased with the Atrovent, but because it help, I can continue.

    Her approach for my treatment is very weird.

    Do you have a general or family doctor you see as well as the pneumonologist?

    I have a family doctor, a good one. I have an appointment with him in May, I can’t get one sooner. Because he’s an internist, not a general practitioner, I think he can take the place of my pneumo if I can’t get another one easily.

    I have other health issues, it’s not life-threatening like my asthma but it needs treatments. My pneumo doesn’t look at the global picture of the situation, just my lung.

    To make a long story short, I’m a trans female-to-male and on testosterone for about 14 months. My hormonal system is literally flipped upside down. My pneumo continues to treat me like before the hormone replacement therapy.

    Do you have any way to get in touch with the ICU doctor who saw you?

    I was lucky in my bad luck. It was the same ICU doctors every time I need to go in ICU. Luckier, I was the same one who intubate me the 3 times. At the last attack, the emergency doctor asked if he want to try the BPAP before the intubation. His answer was that I’m too far in the attack, he know me and will continue to tired out even with the BPAP. They know my case and they order a stricter management by my pneumologist. They also want me to go back in the “asthma learning center”.

    And to add more fun in this mess, I’m a “poor sensor” or “poor perceiver”. I don’t feel the difference between a “little” dyspnea and a “very bad” dyspnea. It’s all the same for me. The only clue I have to say it’s a very bad attack is the fatigue. When I get tired to breathe, I know it’s not good, but it’s also too late. I need more objective information to evaluate my dyspnea, I can’t go with the feeling. I don’t have the alarm signal that said “Dude, we’ve got trouble breathing”. I just got one that said “Dude, if you don’t do something NOW, we’ll stop breathing, it’s too hard”.

    do you keep a peak flow diary and take peak flow before or after ventolin? Sometimes having those numbers can help a doctor feel more comfortable about your using ventolin because you really need it and not for emotional comfort.

    what are your reasons for believing she's wrong? given you were upset by her thinking your ventolin use was for psychological comfort,, you probably have your reasons for thinking she's wrong. Sometimes it helps to write the reasons out.

    I keep a trace of my peak flow before and after Ventolin. I also note the morning/evening peak flow. I don’t have my « normal values » for the peak flow. But I know that under 300 is very bad. The week before my last attack, I was around 300-280 and dropping. I show her this number and she continues to say that I take Ventolin for psychological comfort.

    did your doctor give you reasons why she thought you were using ventolin for psychological reasons? is it possible your doctor was worried and saying more what she hoped is true rather than what actually is true? 50mg pred is supposed to keep major attacks at bay, so doctors get worried when it doesn't and start looking for things other than asthma that might be going on, even if it makes no sense.

    I only take prednisone when I have an attack. I’m not on steroid in regular basis.

    is it possible that your GP thinks your asthma is a lot more mild than it actually is? how much do you communicate with your GP between crisises? does your GP have a chance to see problems develop and perhaps take corrective action *before* you end up at A&E with an emergency situation?

    When I saw my pneumologist in February, she schedules the next appointment in 2014. It’s really hard to have an appointment and I can’t call her easily. She doesn’t give me much information about the corrective action and when I do something to correct the situation before ending up at the emergency, she’s always unhappy when she’s not frustrated by what I did.

    what is working well with your GP? can you leverage that to improve the communication between you and your doctor?

    Nothing work well with my pneumologist. She thinks I’m just a little stupid patient and she’s know everything. She kicks me out of her office after about 4-5 minutes; sometimes I managed to stay for 20 minutes. More than that it’s barely impossible, even if I need more time, more explanation or if the situation/treatment is unclear.

  • what is working well with your GP? can you leverage that to improve the communication between you and your doctor?

    Nothing work well with my pneumologist. She thinks I’m just a little stupid patient and she’s know everything. She kicks me out of her office after about 4-5 minutes; sometimes I managed to stay for 20 minutes. More than that it’s barely impossible, even if I need more time, more explanation or if the situation/treatment is unclear.

    Sorry, didn't mean to confuse the pulmo with the GP. If nothing is working well, is there any possibility of a new pulmo? I think with difficult or brittle asthma, communication is everything. There aren't cookbook answers, so your doctor listening to you and what you know about your patterns is very, very important.

    I'm still feeling my way around on this one, but my impression is that my GP is suspposed to manage the day-to-day issues with asthma and the pulmo is there primarily as a esource for my GP to consult with. My pulmo isn't as unreachable as yours i (really 2014?!), but he isn't as easy to make appointments with as my GP is. In my case though, this is an easy arrangement because my GP and pulmo know each other. Would it be possible for you to find a pulmo that your internist could work together with?

    '

    As for the ICS - as I'm sure you know, the preferrred treatment is prevention and that can only be done with ICS or pred or both. Normally the goal is to get ventolin use down to a big fat 0 per week. Usually when ventolin use is higher than they want it to be, doctors raise the ICS dose or add other treatments like monoleucast/singular. Did your pulmo explain why she hasn't raised your regular maintenance dose of ICS? 2x250 isn't a huge dose.

  • Did your pulmo explain why she hasn't raised your regular maintenance dose of ICS? 2x250 isn't a huge dose.

    I take 2x 250 morning and evening. According to my pneumologist, is the maximum dose of Seretide due to the salmeterol in it. That's why I can bolus with the Flixotide.

    I understand the big fat 0 objective for the Ventolin, but if I have to choose between Ventolin and intubation; I'll take the Ventolin. As I said, I'm a poor sensor for my dyspnea. Most of the time, it's my friends at school who force me to take my Ventolin. I don't feel my symptoms but they see the signs (accessories muscle use, retractions, tachypnea, wheezing, difficulty talking). I study to be a paramedic, so they're aware of what asthma is.

    Our health system in Quebec is really bad. I'm VERY lucky to have a GP AND a pneumologist. To have an appointment with a specialist, is about 3 to 15 months waiting. I want to change my pneumo but it's very complicated. I took the last week to mature my decision and I conclude it's the only solution I've got. Tomorrow I'll call the asthma nurse to see my option. I know witch pneumo I want, the problem is to have my case transfer to her. No matter how hard it will be to get a new pneumo, I will get one. I just don't want to end up in ICU and be intubated again.

  • Did your pulmo explain why she hasn't raised your regular maintenance dose of ICS? 2x250 isn't a huge dose.

    I take 2x 250 morning and evening. According to my pneumologist, is the maximum dose of Seretide due to the salmeterol in it. That's why I can bolus with the Flixotide.

    Here in Israel, you can also get Seretide in 500/60 dosage (500 ICS/60 salmeterol). Maybe it isn't available in Quebec?

    Even with the extra flixotide, you are still aren't on a very high dose of ICS. 250x2 seretide plus 1x250 flixotide is 750/day, which is more like a medium-high dose rather than a high dose. A high dose would be 1000mg/day. A very high dose would be 2000mg/day.

    I've never been intubated or even hospitalized, but to keep it from ever happening, my doctor has me on a lot more steroids than you are on:

    * 2 x 500/60 Seretide (500=ICS, 60=salmeterol)

    * 2 x 500 Flixotide

    * 30mg pred - to be reduced to 25mg next week if I'm not having another exacerbation

    Also as Philomena points out there are other therapies as well: physio for example.

    I'm still puzzled why she isn't doing more to help you avoid the need for ventolin, intubation, or the fear that you have to make the choice between them. It doesn't seem fair to me that she would give you a hard time about ventolin use if she isn't doing anything to help you use less.

    Tomorrow I'll call the asthma nurse to see my option. I know witch pneumo I want, the problem is to have my case transfer to her. No matter how hard it will be to get a new pneumo, I will get one. I just don't want to end up in ICU and be intubated again.

    Sounds like a plan. Do follow through! It would not be good at all to get intubated again. I'm so sorry you are having to go through this.

  • Therefore, I’m not dumb, if I need more, I’ll take more.

    Sorry, I didn't mean to imply that you were, and thought probably you knew this anyway and were just taking it as needed - but your pneumo seemed so set on your NOT taking it and sometimes people can get very misinformed about the 'dangers' of taking too much ie about it indicating poor control rather than it being dangerous in itself (given you've been intubated it's not as though you need to be told that you don't have good control!). Given the odd way your pneumo is approaching things I thought I would add that just in case, but I definitely didn't mean to suggest you were dumb or might not be able to figure it out for yourself. I am always learning new things about asthma that seem simple and that I somehow didn't know - mainly on here.

    It's good that you have a good family doctor though sounds like he is fairly oversubscribed if you have to wait till May. I hope you can sort things out with getting a new pneumo but at least you have someone there in between.

    Given what you say about not being able to sense dyspnea, would you be able to see someone like a respiratory physio or respiratory therapist (I don't know what you'd call them in Quebec?) to perhaps help with this? Or is that the kind of thing that the 'asthma learning centre' that you mention deals with (that sounds interesting, I don't know what it is exactly but from the name it seems like a good idea. I don't think we have those here; I pick up all my information from this forum and sometimes from my physio who is very knowledgeable about general breathing things).

  • Therefore, I’m not dumb, if I need more, I’ll take more.

    Sorry, I didn't mean to imply that you were

    Don't worry about that. English is not my first language and sometimes I struggle to find the right word to express my ideas.

    Given what you say about not being able to sense dyspnea, would you be able to see someone like a respiratory physio or respiratory therapist (I don't know what you'd call them in Quebec?) to perhaps help with this?

    I have an appointment with the respiratory therapist in June at the asthma learning centre. I don't know if it can help but I will try.

    My lack of sensation for my dyspnea is way more than just the dyspnea. I work on that with my psychologist but before I can get all my defence mechanisms down, I need to find another way to perceive my dyspnea. The peak flow is an easy way but I need my normal values range to use it accurately.

    Another thing that definitely doesn't help to have a good sensation of my dyspnea is the fact I wore a chest binder for about a year and a half until I got my top surgery in January this year. Feeling short of breath or feeling my chest tight was due to the binder. I doesn't wear a binder anymore but when I feel my chest tight, unconsciously, is related to the binder. And even when I'm feeling short of breath is like a diminished sensation. I know I'm not very clear in my explanation.

    For example, a dyspnea of 1/10 is a little and a dyspnea of 10/10 is the worse. When I'm at 10/10, I feel like I'm at 3/10.

  • I realize my explanations are not clear.

    I'm on Seretide 250/25, 2 puffs, 2 times/day. total of 4 puffs/day. 1000mg/day.

    I can bolus with Flixotide 250, 1 puff, 2 times/day. total of 2 puffs/day. So a bolus of 500mg/day.

    With the Seretide + Flixotide I'm on 1500mg/day of ICS.

  • That makes more sense (your clarification of your meds).

    Sometimes even with all the meds in the world there is just no way to get rid of all the symptoms.

    I too am not fully controlled with loads of steroids. I consider myself doing very well right now (pf's after ventolin are regularly making it up to personal best in the last 6 months and sometimes I even get there without ventolin). All the same, if I run into enough triggers, I still have at least mild problems. Not all triggers are avoidable: I can't very well ask the whole world to stop smoking on the street and stop wearing perfume. I can't ask the skies not to rain and the wind to stop blowing. And I'm certainly not willing to sit in bed all day hiding from a world full of triggers.

    I end up using ventolin a lot more than just 3 or 4 times a week. On a good day, it might be 0-2 puffs. On an occasional bad day, more like 6--8 puffs or even 10.

    I do hope you can get the pulmonologist you want, even if getting the pulmonologist you want will require a lot of patience and persistence. .

  • My pneumologist finally believe me. After over a week of bad peak flow and a pulmonary function test, she believe me when I say my breathing is not good.

    Monday, she add me more ICS (2000 µg/day) and today, she add me 15mg of pred until my next appointment with her.

    Now, I'm on:

    -Atrovent, 2 puff QID

    -Seretide 250, 2 puff BID

    -Flixotide 250, 2 puff BID

    -Prednisone 15mg

    -Ventolin, 2 puff PRN

    I hope it will help, I'm just tired of this

  • I'm glad that you're getting somewhere with your pneumologist. I hope the increase in ics helps, along with the pred. xx

  • Have you tries singulair or theophylline tablets?

  • I cannot take theophylline because it interact with other medication I take and Singulair is not a option for me. It have to much risk of psychiatric side effects like suicidal behaviours. With my antecedents, I cannot take the risk to take Singulair.

    Zafirlukast could be an option to explore.

  • After few days on pred, my peakflow improve allot.

    I was around 320 to 350 before pred. With the highest dose of ICS (2000 µg/day) and 15 mg of pred, my PF is around 480 to 510.

    I think we found the best mix for my meds. It's like I got new lungs, I feel so good.

    I'm on

    -Seretide 250, 2 puffs AM and 2 puffs PM

    -Flixotide 250, 2 puffs AM and 2 puffs PM

    -Atrovent, 2 puffs, 4 times/day (AM, 11:00, 16:00, PM)

    -Ventolin, 2 puffs PRN

    -Prednisone 15 mg

  • That's great to hear. Really glad that your lungs are feeling like new, I hope they stay that way.

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