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Newly Diagnosed, Just Don’t Understand…

Hi guys!I was being testing by my local pulmonologist for asthma or worse (lung disease). I was honestly thinking it would come back as lung disease because of how crappy I feel and from what I read about asthma, I didn't seem to fit!My HRCT was completely normal, my PFT's suck. I am consistently symptomatic, I don't have "attacks". I have acute times that are worse than others, but I can't seem to catch a break. He has prescribed me an inhaler and steroids.I guess… I'm just at a loss. How is this asthma? I have NO allergies (everything came back negative), and no wheezing. I'm 21 and have a mucus cough every morning and can't do normal activities anymore. Singing to the radio is a task.Does anyone else with asthma sound the same? No allergies, no wheezing?I would love to understand this diagnosis and how this can be! Thank you.

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  • Kathy P

    Welcome shelbyg – not all asthma looks the same. Not all asthma is triggered by allergies. Not all asthma causes wheezing. Asthma is not just "attacks" – it's a continuum – where you can feel anywhere from fine to struggling to breathe.

    I don't wheeze – I cough. I have either a juicy, mucus cough or a dry tight cough. I have different triggers too – exercise, mold. Allergies are a big trigger of mine, but not for everyone. This is a great video about . And this one about .

    Has your doc put you on a controller medicine to try to get things under control?

  • Pljohns

    Hi kathy-YES to most of your questions-I too don't wheeze, don't have "attacks" but have acute exacerbations where I just can't breathe right.  I'm also not allergic to ANYTHING (I've been tested for literally everything and it all comes back clean).  After 6 years, the only sure triggers we've found for mine are weather changes, cold air (either AC or wind) and strong smells, but not always the same strong smell-that's it-the other times, I never know what' s going to give me a hard time and what won't. 

    Mine was adult onset-never had a problem at all until 6 years ago then I got this mess.  Yes, it's a pain to manage BUT it can be managed and you can have a very normal life and do normal things.  I would encourage you to keep a journal of daily things to help you identify what gives you problems and what doesn't, keep a list of things to talk to your doctor about  try to be patient.  It may take a few tries to find the right meds for you but with a good doctor, you will find what works for you. 

    You have landed on a board that is absolutely AMAZING.  I can't say enough good about the people here-they have tons of experiences, suggestions and most of all SUPPORT.  

  • Jen

    @shelbyg Welcome to AAFA's support forums.  It's totally understandable that you have a lot of questions.  One thing that would be good to discuss with your pulmonologist is an , particularly since you are just now becoming familiar with what your asthma symptoms are.  Would you feel comfortable discussing a plan with your doctor?

  • shelbyg
    Kathy P posted:

    Welcome shelbyg – not all asthma looks the same. Not all asthma is triggered by allergies. Not all asthma causes wheezing. Asthma is not just "attacks" – it's a continuum – where you can feel anywhere from fine to struggling to breathe.

    I don't wheeze – I cough. I have either a juicy, mucus cough or a dry tight cough. I have different triggers too – exercise, mold. Allergies are a big trigger of mine, but not for everyone. This is a great video about . And this one about .

    Has your doc put you on a controller medicine to try to get things under control?

    Thank you Kathy!!

    I cough as well. I will check out the video, I really appreciate your reply. He has me on Arnuity once a day. I am also doing a dose of steroids. 

  • shelbyg
    Pljohns posted:

    Hi kathy-YES to most of your questions-I too don't wheeze, don't have "attacks" but have acute exacerbations where I just can't breathe right.  I'm also not allergic to ANYTHING (I've been tested for literally everything and it all comes back clean).  After 6 years, the only sure triggers we've found for mine are weather changes, cold air (either AC or wind) and strong smells, but not always the same strong smell-that's it-the other times, I never know what' s going to give me a hard time and what won't. 

    Mine was adult onset-never had a problem at all until 6 years ago then I got this mess.  Yes, it's a pain to manage BUT it can be managed and you can have a very normal life and do normal things.  I would encourage you to keep a journal of daily things to help you identify what gives you problems and what doesn't, keep a list of things to talk to your doctor about  try to be patient.  It may take a few tries to find the right meds for you but with a good doctor, you will find what works for you. 

    You have landed on a board that is absolutely AMAZING.  I can't say enough good about the people here-they have tons of experiences, suggestions and most of all SUPPORT.  

    I'm so happy to hear that you don't have allergies as well. It's frustrating! 

    Yes, I was just given an inhaler and a dose of steroids as well as ProAir if needed… but I don't get any relief from this. I am scheduled to see my doctor again in January. 

  • shelbyg
    Jen posted:

    @shelbyg Welcome to AAFA's support forums.  It's totally understandable that you have a lot of questions.  One thing that would be good to discuss with your pulmonologist is an , particularly since you are just now becoming familiar with what your asthma symptoms are.  Would you feel comfortable discussing a plan with your doctor?

    Jen, I truly appreciate your reply!!

    I do feel comfortable. I had no idea about such a thing until I found this community. I wish he had given me one off the bat, I will take it to him when I have my follow up in January. 

    What happens at the ER when one has to go? Are they able to give you something that I can't do at home? 

  • K8sMom2002

    Hi and welcome, @shelbyg … I'm one of those non-audible wheeze folks, too, but just because I don't hear myself wheeze doesn't mean I don't wheeze. Wheezing is sometimes something only a doctor can hear with a stethoscope.

    I didn't know that until the first time a doctor diagnosed me with asthma as an adult. I wound up not being able to breathe, coughing my head off, and my co-workers insisted I go to a nearby doctor. He took one look at me and proclaimed, "Oh, you're having an asthma attack."

    I said (between gasps of air and coughing), "I don't have asthma. This can't be asthma. I'm not wheezing. I'm coughing."

    He placed palms on my ribs and told me to breathe out. I whistled like a tea kettle. That's when he explained that with some people, that wheeze is usually heard only with a stethoscope. 

    You asked about what happens at the ER — what happens at the ER is that they have the equipment and medications to intervene if your asthma goes really south in a really big hurry. 

    Your lungs need to be able to take oxygen in and push carbon dioxide out, so that your body's organs — your brain, your heart, your other body systems — get the oxygen they need and get rid of the CO2 they don't. If your lungs aren't working and your O2 drops and stays down, you can get into serious trouble in a hurry. 

    In an ER, they can start an IV and push a lot of medications in a hurry. They can give you supplemental oxygen, either with a nasal canula or a mask, they can use a bi-pap, which supports your lungs in a less invasive way than a ventilator, or they can, if absolute need be, put you on a vent to get oxygen to your body. 

    That's why an asthma action plan is so important. It tells you what you need to do when, and when you need to call your doctor or head to the ER. But hopefully, with a good, solid action plan, you avoid the ER because you've caught your asthma before it can get really bad. 

    I know that before I understood my asthma triggers (upper respiratory infections are a BIG trigger), I thought I could just tough things out. Now I do all that I can to avoid those triggers, and if I do wind up with an upper respiratory infection, I have a "sick plan." With my asthma action plan and my sick plan, my asthma is much better and much more controlled. 

    Hugs … we're here for you! 

  • K8sMom2002

    Oh, drat … I forgot to link to some awesome videos that AAFA has just introduced. 

     is a great explanation of asthma … and then there are other videos like:

      These are GREAT and really helped me understand things better than I did. Plus they are super short, and the surveys that you take help sort of cement that knowledge in your head (at least for me!) I've also found that they are super for explaining things to friends and family and co-workers, so share widely!

    • CAPuttPutt

      @shelbyg Welcome Shelby!! You'll find a lot of amazing resources and help on this forum, and most of all you'll find support from others who are going through the same things Ask us anything and we'll help you as best as we can, and share our experiences with you.

      My son doesn't wheeze either, he's not your typical asthma kid. He wasn't diagnosed until just before his 3rd birthday; we didn't get an asthma action plan until we went to see a pulmonologist almost a year later. He typically starts coughing and won't stop for hours; he'll cough, cough, cough until he pukes, and then start the coughing all over again, until he pukes more. This is generally when we load up for the ER. Anytime he runs he starts coughing. Sometimes simply laughing too hard/much will cause him to start to cough and be short of breath. But while he's only 4, he's been on steroids more than I care to acknowledge, and in ICU and the ER several times for asthma exacerbation – they have medicines that we can't have at home that are like "super breathing treatments". Even an ambulance has medicines on board that can open your airways en route to the hospital, should you ever have to call one.

      Anytime our son gets a cold, his asthma flares up (as in he has to use a nebulizer every 4 hours around the clock). And sometimes out of the blue he'll start having breathing issues even when he doesn't have a cold. He's tested negative for all allergens, but his pulmonologist does acknowledge that he's allergic to "something, even if we can't pinpoint what it is exactly". His food allergy will trigger his asthma as well. We also think that dust (as in dusty dirt roads) trigger his asthma. 

      Just because you don't fit the 'poster child' description for asthma doesn't mean you don't have it. What type of inhaler did your pulmonologist prescribe for you? Was it a preventative such as Flovent?

    • shelbyg
      K8sMom2002 posted:

      Hi and welcome, @shelbyg … I'm one of those non-audible wheeze folks, too, but just because I don't hear myself wheeze doesn't mean I don't wheeze. Wheezing is sometimes something only a doctor can hear with a stethoscope.

      I didn't know that until the first time a doctor diagnosed me with asthma as an adult. I wound up not being able to breathe, coughing my head off, and my co-workers insisted I go to a nearby doctor. He took one look at me and proclaimed, "Oh, you're having an asthma attack."

      I said (between gasps of air and coughing), "I don't have asthma. This can't be asthma. I'm not wheezing. I'm coughing."

      He placed palms on my ribs and told me to breathe out. I whistled like a tea kettle. That's when he explained that with some people, that wheeze is usually heard only with a stethoscope. 

      You asked about what happens at the ER — what happens at the ER is that they have the equipment and medications to intervene if your asthma goes really south in a really big hurry. 

      Your lungs need to be able to take oxygen in and push carbon dioxide out, so that your body's organs — your brain, your heart, your other body systems — get the oxygen they need and get rid of the CO2 they don't. If your lungs aren't working and your O2 drops and stays down, you can get into serious trouble in a hurry. 

      In an ER, they can start an IV and push a lot of medications in a hurry. They can give you supplemental oxygen, either with a nasal canula or a mask, they can use a bi-pap, which supports your lungs in a less invasive way than a ventilator, or they can, if absolute need be, put you on a vent to get oxygen to your body. 

      That's why an asthma action plan is so important. It tells you what you need to do when, and when you need to call your doctor or head to the ER. But hopefully, with a good, solid action plan, you avoid the ER because you've caught your asthma before it can get really bad. 

      I know that before I understood my asthma triggers (upper respiratory infections are a BIG trigger), I thought I could just tough things out. Now I do all that I can to avoid those triggers, and if I do wind up with an upper respiratory infection, I have a "sick plan." With my asthma action plan and my sick plan, my asthma is much better and much more controlled. 

      Hugs … we're here for you! 

      I want to cry because of how much this means to me. Thank you for taking the time to write such a detailed post!! I relate to you so much.

      Thank you for explaining the ER as well. It's all so new to me, so I wasn't sure why one would go, that makes perfect sense. I will definitely force him to write up the action plan in my follow up in Jan! If something happens before then that is emergent, I'll make sure to get seen.

    • shelbyg
      CAPuttPutt posted:

      @shelbyg Welcome Shelby!! You'll find a lot of amazing resources and help on this forum, and most of all you'll find support from others who are going through the same things Ask us anything and we'll help you as best as we can, and share our experiences with you.

      My son doesn't wheeze either, he's not your typical asthma kid. He wasn't diagnosed until just before his 3rd birthday; we didn't get an asthma action plan until we went to see a pulmonologist almost a year later. He typically starts coughing and won't stop for hours; he'll cough, cough, cough until he pukes, and then start the coughing all over again, until he pukes more. This is generally when we load up for the ER. Anytime he runs he starts coughing. Sometimes simply laughing too hard/much will cause him to start to cough and be short of breath. But while he's only 4, he's been on steroids more than I care to acknowledge, and in ICU and the ER several times for asthma exacerbation – they have medicines that we can't have at home that are like "super breathing treatments". Even an ambulance has medicines on board that can open your airways en route to the hospital, should you ever have to call one.

      Anytime our son gets a cold, his asthma flares up (as in he has to use a nebulizer every 4 hours around the clock). And sometimes out of the blue he'll start having breathing issues even when he doesn't have a cold. He's tested negative for all allergens, but his pulmonologist does acknowledge that he's allergic to "something, even if we can't pinpoint what it is exactly". His food allergy will trigger his asthma as well. We also think that dust (as in dusty dirt roads) trigger his asthma. 

      Just because you don't fit the 'poster child' description for asthma doesn't mean you don't have it. What type of inhaler did your pulmonologist prescribe for you? Was it a preventative such as Flovent?

      You guys are seriously the best. I feel better already. Your detailed responses were more than I could have asked for!! 

      I'm sorry to hear about your son. It's great knowing that I'm not the only one that isn't "poster child". You are such a great mom though for pushing through this!

      I am doing a dose of steroids and for the inhaler it's called Arnuity. Have you heard of this?

    • CAPuttPutt

      @shelbyg Thank you, I'm glad we can help! Sometimes just knowing you have a support line makes all the difference in the world! We're all in this together so feel free to pick our brains whenever you need to…I know I've leaned on @K8sMom2002 and @Jen several times since joining.

      I haven't heard of that particular inhaler, though I know there are many out there that work great. You'll have to keep us posted on how you fair with it. 

      Our son uses Flovent 110 now (2 puffs in the AM and 2 puffs in the PM) and takes a Singular tablet at night. He was on Flovent 44 but it wasn't holding him and he was getting sick pretty often, even without triggers (such as colds) so they upped him to the 110. 

    • K8sMom2002

      Caputtputt and Shelbyg, I can tell you that I have learned a LOT from this forum and this website. I now take asthma very seriously … and I understand more about it. So that means that I can ask our doctors (both mine and my DD's) detailed questions. 

      A lot of times, my questions go something like, "What happens if …" or "What should we do if …" Before I knew to ask those questions, we were sort of flying by the seat of our pants.

      Another thing that has helped me is to keep a detailed trigger/symptom diary. Even if you don't keep it for long or if you just sort of pay attention to patterns, it can really help you get to the bottom of things.

      For instance, my asthma seemed to flare kind of randomly … but then I read an AAFA blog post about , and I started paying attention. That's when I realized that sudden drops in barometric pressure — like when a storm is moving in or the weather is changing quickly — are a trigger for me. Even though I can't control the weather, I know to watch out for it, and it no longer catches me by surprise. If it gets worse or less controlled, I know to ask my doctor about pre-treating before a big drop. For now, I don't pre-treat, but it's good to know that it's an option.

      And I learn something new every day from folks like Caputtputt and @Pljohns, @GigiGibson,  @Nemo88, @Shea and @Mandy. New members, too, like @lindamarie, help me see connections between asthma and other autoimmune disorders. It's so good to know that I'm not alone in this journey … that I have folks rooting for me and ready to support me and who understand exactly what I mean when I say, "Well, today, I woke up with twitchy lungs."

    • Pljohns

      One thing that works for several of us here is to use Apps on our devices-there are several good ones that are free that let you keep track of peak flow number, symptoms, etc.  It's a great way to have a "portable diary".  You might want to check with your doctor about a peak flow meter if you don't already have one.  Some people don't use them and go totally by how they feel but I do both-sometimes my numbers tank and I feel OK but I know to throw something at it or it will get worse quickly.

    • shelbyg
      CAPuttPutt posted:

      @shelbyg Thank you, I'm glad we can help! Sometimes just knowing you have a support line makes all the difference in the world! We're all in this together so feel free to pick our brains whenever you need to…I know I've leaned on @K8sMom2002 and @Jen several times since joining.

      I haven't heard of that particular inhaler, though I know there are many out there that work great. You'll have to keep us posted on how you fair with it. 

      Our son uses Flovent 110 now (2 puffs in the AM and 2 puffs in the PM) and takes a Singular tablet at night. He was on Flovent 44 but it wasn't holding him and he was getting sick pretty often, even without triggers (such as colds) so they upped him to the 110. 

      How long did it take him starting the medicine to notice a difference?

    • shelbyg
      K8sMom2002 posted:

      Caputtputt and Shelbyg, I can tell you that I have learned a LOT from this forum and this website. I now take asthma very seriously … and I understand more about it. So that means that I can ask our doctors (both mine and my DD's) detailed questions. 

      A lot of times, my questions go something like, "What happens if …" or "What should we do if …" Before I knew to ask those questions, we were sort of flying by the seat of our pants.

      Another thing that has helped me is to keep a detailed trigger/symptom diary. Even if you don't keep it for long or if you just sort of pay attention to patterns, it can really help you get to the bottom of things.

      For instance, my asthma seemed to flare kind of randomly … but then I read an AAFA blog post about , and I started paying attention. That's when I realized that sudden drops in barometric pressure — like when a storm is moving in or the weather is changing quickly — are a trigger for me. Even though I can't control the weather, I know to watch out for it, and it no longer catches me by surprise. If it gets worse or less controlled, I know to ask my doctor about pre-treating before a big drop. For now, I don't pre-treat, but it's good to know that it's an option.

      And I learn something new every day from folks like Caputtputt and @Pljohns, @GigiGibson,  @Nemo88, @Shea and @Mandy. New members, too, like @lindamarie, help me see connections between asthma and other autoimmune disorders. It's so good to know that I'm not alone in this journey … that I have folks rooting for me and ready to support me and who understand exactly what I mean when I say, "Well, today, I woke up with twitchy lungs."

      Yes, that's so true. Thank you! Very interesting about the thunderstorms. I had never heard of that!

      I noticed today that it's worse after I shower. I'm guessing the steam. 

      Pljohns posted:

      One thing that works for several of us here is to use Apps on our devices-there are several good ones that are free that let you keep track of peak flow number, symptoms, etc.  It's a great way to have a "portable diary".  You might want to check with your doctor about a peak flow meter if you don't already have one.  Some people don't use them and go totally by how they feel but I do both-sometimes my numbers tank and I feel OK but I know to throw something at it or it will get worse quickly.

      I went ahead and ordered one off of Amazon, because I'm curious to see how that changes with treatments. Thank you!

    • K8sMom2002

      Oooh, do let us know how that works for you! Some of us are very numbers-oriented, while the rest of us kind of fly by the seat of our pants. I always like to hear of other folks' approaches. It gives me options, you know?

    • Megan Roberts

      Hugs on the diagnosis and the mystery of the asthma that is silent but frustratingly present nonetheless @shelbyg!  My spouse has just in the last two years been diagnosed with asthma that is similar to yours.  No identified triggers so far and no acute attacks.  Just a constant presence of symptoms (like fatigue from exercise), a persistent cough in the winter, things like that.  It makes it so hard to diagnose and grasp that asthma is the cause! 

      My asthma diagnosis was as an adult as well, it is allergy triggered sometimes but again, no acute symptoms except during exercise.  The rest of the time, I just have thickened mucous, other respiratory issues and shortness of breath for things that should be easy given my fitness level.  It took me about a year to get the right combination of medications to manage my symptoms, but I did finally do it!  SUCH a game changer.  I got hopeless for awhile and thought life would never be the same.  But being involved in this community and learning from AAFA's resources, I realized I didn't have to "settle" for the way things were with asthma.  I kept going back to the doctor until we got my medications right.  

      I can see that you're doing your homework just by being here and asking such great questions of this super supportive community.  They really know their stuff.  I have faith that you'll be able to make headway with your symptoms too.  Just keep researching your options and be persistent.  We are rooting for you. 

    • shelbyg
      K8sMom2002 posted:

      Oooh, do let us know how that works for you! Some of us are very numbers-oriented, while the rest of us kind of fly by the seat of our pants. I always like to hear of other folks' approaches. It gives me options, you know?

      I will. I'm going to be very curious to see what the difference is during certain times of day.  

    • shelbyg
      Megan Roberts posted:

      Hugs on the diagnosis and the mystery of the asthma that is silent but frustratingly present nonetheless @shelbyg!  My spouse has just in the last two years been diagnosed with asthma that is similar to yours.  No identified triggers so far and no acute attacks.  Just a constant presence of symptoms (like fatigue from exercise), a persistent cough in the winter, things like that.  It makes it so hard to diagnose and grasp that asthma is the cause! 

      My asthma diagnosis was as an adult as well, it is allergy triggered sometimes but again, no acute symptoms except during exercise.  The rest of the time, I just have thickened mucous, other respiratory issues and shortness of breath for things that should be easy given my fitness level.  It took me about a year to get the right combination of medications to manage my symptoms, but I did finally do it!  SUCH a game changer.  I got hopeless for awhile and thought life would never be the same.  But being involved in this community and learning from AAFA's resources, I realized I didn't have to "settle" for the way things were with asthma.  I kept going back to the doctor until we got my medications right.  

      I can see that you're doing your homework just by being here and asking such great questions of this super supportive community.  They really know their stuff.  I have faith that you'll be able to make headway with your symptoms too.  Just keep researching your options and be persistent.  We are rooting for you. 

      Thank you SO much!! This was such a relief to hear. 

      How many times did you have to change your meds until you found the one that worked?

      I'm getting through my steroid treatment. Finished day 2 today… haven't noticed anything so far with this and the inhaler. Hoping in a couple weeks I will!

    • K8sMom2002

      Fingers crossed that things continue to go well with the steroids … and each person's asthma is unique, so definitely talk with your doctor and let the doc know whether the treatment plan is working or not.

      Another thing I've learned is to ask a doctor, "Okay, when should I start feeling better? And what do I do if I'm not feeling better by that time?"

    • shelbyg
      K8sMom2002 posted:

      Fingers crossed that things continue to go well with the steroids … and each person's asthma is unique, so definitely talk with your doctor and let the doc know whether the treatment plan is working or not.

      Another thing I've learned is to ask a doctor, "Okay, when should I start feeling better? And what do I do if I'm not feeling better by that time?"

      I wish I had thought of that when I was diagnosed on Monday! But, I know now to ask in January. 

      Did my first full day of the peak flow monitor. I guessed I would stay in the "yellow zone". Interesting how my number is the same in the morning and at night, and the same after doing ProAir, both got some better but still not out of the yellow zone. 

    • K8sMom2002

      Could you call the doctor's office and speak to your doctor's nurse? Or is there a patient portal that you can email questions? 

      Doctors assume that no news is good news, and they sort of expect that we will call them if things aren't getting any better. But it took me a long time to get over my hesitation to call and ask a follow-up question. Still, my doctors have told me they really appreciate me not waiting to ask what could be a super important question.

      So go for it — call that nurse!

      And yay for getting solid numbers — when you go back in January, can you ask your doctor to test your monitor against theirs to see how in synch they are?

    • shelbyg
      K8sMom2002 posted:

      Could you call the doctor's office and speak to your doctor's nurse? Or is there a patient portal that you can email questions? 

      Doctors assume that no news is good news, and they sort of expect that we will call them if things aren't getting any better. But it took me a long time to get over my hesitation to call and ask a follow-up question. Still, my doctors have told me they really appreciate me not waiting to ask what could be a super important question.

      So go for it — call that nurse!

      And yay for getting solid numbers — when you go back in January, can you ask your doctor to test your monitor against theirs to see how in synch they are?

      Yes!! You are very smart. I will call on Monday – I didn't even think of that. There should at least be a nurse that I can call. Sadly, no patient portal. But at least a nurse should be able to ask the doctor and get back to me.

      So, I will be asking, "When should I start to feel better? And what do I do if I'm not by then?"

    • K8sMom2002

      ShelbyG, hoping you got some good answers! I've found that nurses can be a great ally … they've really helped me over the years.