Navigation

New here – frustrated with ED and clinics

Hello all, sorry to come to this forum immediately in need, but I feel frustrated and alone. I’m a mom of 3 and have had a lifetime of seasonal allergies + indoor allergies (my scratch test was very positive, weeds, trees, dust) and asthma that in the past had been relatively mild (flared up with exercise, colds). Recently however, the asthma has taken on a life of its own. I wake up several times per week at night struggling to breathe, and at times use my rescue inhaler daily. I’ve been sick for the last 3 months with recurrent colds, been on 2 bursts of prednisone and got out of the hospital 1 week ago for an asthma/bronchitis flare. Currently I’m slowly tapering off prednisone, and finally breathing easier on a combination of twice daily budesonide nebs, levalbuterol and ipratropium. 

What shocks and saddens me is how poor asthma care can be, even in 2019. I had an allergist and pulmonologist that I loved before I moved. However, here my primary care doctor never asks about my peak flows, rescue albuterol use or nighttime awakenings. All he does is listen to my lungs and if he doesn’t hear a wheeze, says everything must be ok. The same thing happened in the ED on the night I was admitted. I told them I couldn’t breathe and never have been much of a wheezer. The ED doctors told me but your o2 sat looks ok (90%) and your lungs sound ok, though diminished. My heart rate was in the 140s and my blood pressure in the 160s. They tried to explain away the vital sign changes on my steroids and nebulizers, even though I told them I have never been like this before on prednisone and nebulizers. I was too short of breath to lay down. Thankfully the admitting doctor recognized what was going on and got things under control with methylprednisolone, high dose inhaled steroids and aggressive q4h nebulizer treatments. The silver lining is I now have referrals to establish with allergy (ask about immunotherapy?) and pulmonology. It just pains me and frustrates me to fight to be believed when I can’t breathe and show people my peak flows are 60% of normal, and am simply told but your lungs sound ok. Is it really that rare to use peak expiratory flows to guide therapy? I thought asthma action plans with guideline directed step up and down management recommendations were the cornerstone of managing moderate to severe asthma.

Thanks for listening! I am excited to have found this community.

 

27
139

Comments 27

  • Melissa G

    Hi Emelina! Welcome to the AAFA support forums! 

    You have been through so much!  It is indeed incredibly frustrating when you are not taken seriously by medical professionals. 

    Do you know what your  are? What are you doing to control  

  • Emelina

    Hi Melissa, thanks for the welcome. I’m pretty sure my triggers are exercise, viral infections, cold/dry air, stress and the seasonal stuff (grass/trees) but wonder if I’ve developed some new trigger to explain this most recent spiral.

    For indoor allergies we got rid of carpets in the house, keep the bed and pillows covered with special sheets under our normal sheets that keep the dust mites at bay, try to do regular hot water washes and keep windows closed. I’ve tried Flonase (horrible nose bleeds) and singulair (nightmares) and cetirizine. Maybe immunotherapy (subq or oral) could be a next step to try? I’m cautiously hopeful for these appointments coming up.

  • LK

    Welcome Emelina!     

    Please don't worry about here when you are in need!  That's how almost all of us here first found these forums!  You are in the right company!      So many people here have been through similar circumstances and have a wealth of experience and great day-to-day suggestions for how to "live with asthma"  .

    I am so sorry you are having a rough time right now!  I have adult onset, cough variant asthma.  My lungs always sound clear even when I only have enough breath to get out one word at a time.  Sure confused some GP doctors and nurses over the years who haven't dealt with moderate to severe persistent asthma.  I am thankful that my pulmo pays attention to how I am doing and not just the numbers from the tests.   

    I am glad you have referrals to an allergist and a pulmonologist.  That is good that you are breathing easier now.  It is so frustrating when a doctor doesn't understand our types of asthma.  It isn't all that common so I just don't think they even know about it.

    I am allergic to dust mites so have encased our mattresses and pillows in dust mite proof zippered cases. The sheets get washed weekly in hot water and the blankets every two weeks.

    I have been battling a flare since last fall and don't think I was quite over one from the previous fall.  Have been on pred since the first of November and doing pred every 4 hours along with my maintenance meds.  When I am still getting my lungs settled down, my lungs are super sensitive to almost everything, especially my regular triggers – cold air, strong scents, dust, car and diesel exhaust, stress, windy days, high humidity, etc.  

    About a year ago I started on Xolair.  We gave it a good ten months and didn't see as much of an improvement as we had hoped for.  The end of January I was able to start on Dupixent.  It was amazing to me that in only three days or so I was able to breathe much more deeply and over the past several weeks have been able to reduce my nebs and then eliminate them almost completely.  Only need my ProAir rescue inhaler once every day or so.  Honestly, this is the first time since I was diagnosed over 6 years ago that I haven't needed to use my neb or rescue inhaler every day.

    I hope you are able to get in to see your new doctors soon so you can go over all your questions with them.  Please let us know how you are doing!

  • Emelina

    Hey, great idea Melissa re: nasal rinses. I had been using the Neti pot in the past during peak spring allergy season. Thanks for reminding me about this great & effective treatment. Thanks too for the list of other allergy treatment options. I’ve tried claritin and Zyrtec with incomplete relief. 

    Thank you LK for sharing your experiences with cough variant asthma and giving me something to read about with Xolair and Dupixent. It’s crazy how long these flares can last and how much havoc they can sow. It’s so hard when the lungs don’t behave … everything else comes to a screeching halt, plus the high dose oral steroids don’t make anything easier (I can’t decide if I should laugh, cry or try to eat my problems … prednisone makes it so hard to sleep, then I get irritable, emotional and hungry … bad combo right?)

    Good news, the allergist appointment is scheduled for late March! Hooray. Fingers crossed pulm isn’t booked months out. 

    Thank you both for helping this new leg of life’s journey be a little less lonely and intimidating.

     

  • Pljohns

    EMELINA-welcome to the board and we're glad you found us.  Like Lisa said, most of us found this board for the same reason you did so we're glad you found us.

    I have adult onset, non allergic, severe uncontrolled asthma-that's a mouthful-but like you, I don't wheeze, my O2 sat is generally good and I've been told by more than 1 doc that I was fine even though i couldn't breathe at all.  It's so frustrating.  I've landed in the hospital a few times from a flare and had a hospitalist try to discharge me-until my pulmo got hold of him.  I doubt he will EVER discharge one of her patients again.  It's a hard time finding a good pulmo but if you don't have one, keep looking.  I lost my really good one  (she quit seeing pulmo patients and is only doing sleep issues now) and I was without a decent doctor for almost 3 years.  I ended up taking care of myself as best as I could but it was tough going.  I finally have a good pulmo again.

    It sounds like you have already been on the pred roller coaster-you're right-can't sleep, can't decide to cry, scream, take everyone's head off or what.  My normal taper starts at 60mg and takes about 6 weeks to taper of.  I can't use inhalers-something in the propellent doesn't like my lungs so I use a neb all the time.  It makes it a challenge but it can always be worse.  Hang in there and hopefully your allergy appointment and pulmo appointment will go well.  

  • Emelina

    Thank you for the welcome pljohns and helping me keep it all in perspective. It sounds like you had one heck of a Pulmo on your side. I would have loved to see that conversation between the hospitalist and your pulmonologist. I think healthcare people sometimes forget that we don’t all present classically and don’t all fit one model of treatment either.

    Urgent care recently did a 80mg taper in 5 days which was way too fast, this time we started at 60 (after 2 days of iv methylprednisolone 125) and are tapering over 2 weeks. It’s odd the love hate relationship that develops with oral steroids. I love the quick resolution of the tight/squeezed/fish out of water feel, but gosh, all the other stuff is so tough (the restlessness and trouble sleeping is the worst). 

    Since you mentioned you nebulize all of your medicines, have you found a vendor for your nebulizer hand set that you like? I tried the Phillips side stream nebs and they seemed much faster than the disposable hand held ones with the long clear tube sticking off the end that are provided in clinic and the hospital. I’m curious if other vendors like Pari sprint are similar or faster? 

    Thanks! - Em

  • Shea

    Welcome Em, 

    I am sorry that the ER doesnt do a better job with recognizing asthma is not always a wheezing thing (and doctors too) and unfortunately Ive heard that same situation played out many times on the forum. I also have heard doctors not making referrals, or developing action plans, or listening to what is going on. It is frustrating!

    You coped well with it in the ER, I just wish theyd have recognized that you were struggling getting air in and that your peak flows were at 60% and given you the treatments then– I dont know what their parameters or checklist is for giving people treatments but I feel peak fliw, heaet rate, bp, and asthma history should all be on it . You, the patient struggling to breathe, shouldnt have to also fight to be believed just bc your not presenting with a wheeze– that is not a good situation. Im so glad the doctor came in, gave you steroid and neb treatments, and git you feelung well– and AND the referrals will help too. 

    Do you have pets in the home? I developed worsening allergies over time and pet dander (direct and indirect) are huge triggers for me. Perfumes, molds, chemicals, pesticide sprays, laundry detergents– anything recently changed on thise fronts? It can be detective work sometimes, so avoiding triggers when you are flared up can be tough, but once things start to get less irritated and heal more, you might be less sensitive too. 

    Oops I gotta run, good luck at your appointments!

  • LK
    Emelina posted:

     

    Since you mentioned you nebulize all of your medicines, have you found a vendor for your nebulizer hand set that you like? I tried the Phillips side stream nebs and they seemed much faster than the disposable hand held ones with the long clear tube sticking off the end that are provided in clinic and the hospital. I’m curious if other vendors like Pari sprint are similar or faster? 

    Thanks! - Em

    I have an older Phillips Respironics tabletop nebulizer and also the Pari Trek S. 

    I have tried the mouthpiece that came with my Phillips, the side stream one, and have tried these two from justnebulizers.com .  The Pari LC Sprint is better and the Pari LC Star is even better when I really can't move any air.

     

    Hope this give you some options!

  • Emelina

    Hi Shea, thanks for the welcome and kind words. It was just so eye opening and terrifying for me. You’d think with how common asthma is, care would be more uniform?! It’s like a heart attack – not all classically present with substernal chest pain and pain radiating down the left arm. Grrr. I’m also sad/dismayed no one has ever checked a peak flow in clinic, urgent care, ED or inpatient side. I’m also dumbfounded that no one has ever reviewed my asthma action plan. Ugh, so hard to go from an area with aggressive asthma care to this new reality. Maybe I could turn this frustration into something constructive … send the ED or clinics a letter? Like you said, it’s the mother hen in me, no one should ever have to fight to be believed when struggling to breathe.

    I’m so thrilled to finally have green peak flows again, I think I’m going to stay on this nebulized regimen until I see pulm. I think you’re right … the lungs are just super grumpy right now and should settle as time goes on. 

    Oh! Great question about pets. I do have a pet bird that I’ve had for almost 20 years. I keep him on the other side of the house and have house cleaners to help with the maintenance/vacuuming around the cage to minimize exposure. No other pets. No major changes either to cleaning supplies. No new perfumes/scents. I like your sleuthing eye. One thing that I was wondering about could be contributions from the bitter cold outside, the hazy and smoky air from wood burning stoves + temperature inversions, and maybe new mold growth (sometimes the windows sweat around the sills at home) or at work (symptoms 2-3 times worse there). The last 2 weeks have been very cold with poor air quality warnings. 

    Thank you Shea and all again for your warm welcomes and kindness and time. It’s wonderful to have a group of people to turn to who have been there. After a week of being stuck at home, and reeling from suddenly being hospitalized, embarrassed to tell friends/colleagues where I was, put on fmla medical leave and left sorting through piles of meds (antibiotics, boxes of nebs and trying to keep up with my steroid taper & neb schedule), you guys reminded me it’s all conquerable. Just take it one step at a time. 

    LK: thanks for the Pari nebulizer tips. I’ll check them out! 

    Thank you!

  • K8sMom2002

    Hi, Emelina and welcome! Lynn (plJohns) has a great phrase that I'm going to borrow (and probably mangle) — "We're sorry that you have the need to be here, but we're so glad you found us!"

    I'm glad you're getting referred to an allergist and a pulmo! I'm hopeful that will help get your asthma under control and keep you out of the emergency department. While the ED is definitely the place to go if I need help, I like having a detailed asthma action plan that will help me catch things before they go too far. 

    ED docs are great, but they're not MY doctor. They're kind of like a substitute teacher in the place of my asthma doc, and they've got a steep learning curve to learn me. 

    And feedback of any sort is always helpful, so maybe you could reach out to a patient advocate at the hospital and say something like, "This is what worked really well. This is what could have been improved. And this is how everyone responded and got me back on track." Could you phrase it that way?

    It sounds like your current flare kicked off when you got sick? That's something that happens to me as well … one thing I've learned from this community and from my own doctor is the need for a good "sick plan." What do I do if I get sick so that it doesn't get worse? And what can I give an ED doc (my own doctor's orders, for instance, or a letter) to help the doc know how to best manage my asthma?

    Another thing … while you haven't changed your cleaning supplies, have they changed on you? Companies can change the formulations at any time without notice. I keep an eye out for "new and improved" labels … because a lot of times that means that it is NOT new and improved for me.

  • Shea

    Em, you found some good things to check more into.

    One thing is, things that didn't bother you before, you can become sensitized to when lungs are flaring. Like, we had let birds for a long time, my mom got real sick and they at first thought she might have some type of lethal lung disease — it freaked us all out– then she did more tests, it wasn't that disease, it was a very high allergy developed to the birds and it has wreaked a lot of having on her. My sister loved the birds so much. But my mom was too allergic. We found a really nice sanctuary nearby where my sister could visit the birds and they took really nice care of them there. So it is worth a mention and a test well at the allergist.

    Also, a lot of people on here mention wood-burning stoves as a huge trigger– they cannot go to people's homes with wood-burning stoves. So that is something to look into– if it is in your home then maybe it is good to look into other options?

    I am not sure about moisture around Windows and how to prevent that mold possibility… I live in Florida.. Mold from humidity and that can develop in older buildings, definitely affects me. My allergy tests are high to mold, cat and dog dander, dust, and others.  When I moved out of my old rental, my symptoms had some improvement– I think that would place may have had mold issues. There are things you can do preventative involving insulation, and it's worth looking into.

    Allergy tests can be helpful (skin prick were more accurate for me) because often you will test positive to what is in your environment that your body is really reacting to, and then you can find ways to avoid that, especially as your healing. 

    Also, I have a HEPA air purifier in my room and try to make my home as much of a sanctuary as possible, so that I have a safe place here to escape the triggers and spend the majority of my time here so it makes a big difference.

    I think writing a letter about pft  and allergy action plans can definitely help improvements in care in th ER, and also discussing them with your doctor's as a way to monitor… It is hard going from one place that does awesome to another— but you could be a great catalyst for improved care!

     

     

  • Pljohns

    Em-I don't think I've officially welcomed you to the board but WELCOME and yes, Cynthia got my phrase perfect-sorry you had to find us but glad you did.  

    I must say, I've only had awful experiences in ER's and not much better in clinic's.  Once hospital stay was so awful, I told them I wanted the head of nursing admin in my room before I left.  I gave them an ear full-I had gotten meds that were ordered STAT-4 hours later, no meds at all other times-it was awful.  I left in worse shape than I was when i got there-and was readmitted less than a week later for another week.  It was awful-

    When do you see the pulmo?  Several of us here try to have a list of questions (not more than 3 or so) to ask them.  It works for me to write them down and then i can put his answers under my questions so I have it look back on if it comes up again.

    Hope you are feeling better and can get some rest (and work leave you alone)!  Welcome to the boards!

  • Emelina

    Cynthia, thanks for the welcome! I am so grateful I found this group. I love your suggestion for constructive feedback and phrasing. It’s hard when you’re sick, sleep deprived and under the influence of prednisone to find the right words that will be well received. I love the idea of a sick plan, both for me, my regular doc and even ED. I had a pretty basic action plan previously, but worked then clearly isn’t now. 

    No, the cleaning supplies haven’t changed. We buy the supplies for the cleaning team. I feel spoiled having the service come every 2 weeks (when I grew up you did your own vacuuming, dusting) but oh my goodness, it’s the best $80/visit ever spent. No more arguing over who’s on toilet duty and sneezing/wheezing after cleaning. And after a long day, it’s so nice to come home to a sparkling house (it only lasts for like 20 min before the 3 boys destroy it, lol). Ty again for the welcome.

    Shea, great thoughts to ask about bird allergens. My primary doctor offered the blood testing for allergens before I see allergy, but I said I’d prefer to wait for the skin testing. I’d heard skin is better? My last skin test was 9 years ago and very eye opening (discouraging) to see all that I reacted to. Will be interesting to see what’s changed, particularly in a new town. I’ll be sure to ask about mold allergy too. Last time I was negative for mold … but my immune system is dumb and cantankerous and apparently loves to freak out over nothing!

    no wood burning stove in my house, but tons of houses have them around my work. I swear it was so bad one day I thought the building was on fire it smelled so thickly of wood smoke. We also have a back up generator that they test periodically that spews it’s output into the building intake. Ugh. Those days I just go hide in my office and dream of Phoenix or Hawaii!

    oh! I love the idea of adding a hepa filter to the bedroom and making it a sanctuary. Thanks for the positive spin on tough experiences: I like the idea of being a positive catalyst for change. 

    Lynn, thanks for the formal welcome. Holy cow, 4 hour delay for a stat medication! No seriously, stat means stat not after lunch. Ugh! I’m glad you talked to the nursing leadership. Incredibly sad that you can check in to heal but leave feeling worse!

    still waiting to hear back from pulmo. I heard a rumor that they are 2-3months out but sometimes you can get in sooner by jumping into a cancellation. I really like the idea of 3 questions to go in with. I hate it when I go to appointments and my mind goes blank … well until I get into the car and drive away!

    im feeling much better this morning back on higher dose pred. I even had the energy to drive one of the kids to school! No coughing fits, no near vomiting episodes and the sun was out … and we are supposed to get to near freezing today as the high. Woohoo. On Monday there was -40 windchills. Lol. Hawaii is seeming like a better and better option everyday!

    Thank you all! Em

     

  • Pljohns

    Em-I joke with a very dear friend of mine that we need a deserted island with perfect weather year around and no triggers!  Now, if only we could find that place-

  • LK
    Emelina posted:

     

    still waiting to hear back from pulmo. I heard a rumor that they are 2-3months out but sometimes you can get in sooner by jumping into a cancellation. I really like the idea of 3 questions to go in with. I hate it when I go to appointments and my mind goes blank … well until I get into the car and drive away! 

    Em,  That's me, too!!    Unless I write my questions down as soon as my pulmo asks me I go blank and remember when I get in my car!  

  • Emelina

    Island, perfect weather, crystal waters … bora bora!! 

    Seriously, I’m like deer in the headlights. Questions, no questions until the doctor’s hand touches the door. Nuts, can’t blame that on prednisone brain. 

  • K8sMom2002

    I write my questions down, too — I figure I have time for three questions, and a lot of times, I just hand my sheet of paper with all of my questions over to the doc so that she can read them and answer them. She knows then that the end is in sight and I'm not going to keep her past time for her next patient.

    The idea of a HEPA filter in the bedroom is a good one! And here's a great AAFA resource on how .

  • Shea

    I had my appt with my new GI doctor today, went over my long history– after it all I told him I really threw the book at him this time (between prior Ulcerative colitis resolved with surgery, and now with Churg-Strausd Syndrome)– he thinks it could be Churg-Strauss or an ulcer (possibly a from long-term steroid use) since Ive been having Gerd as well. So of course I have to get scopes done– early next month. I have my heart cath procedure this month. At least I will have more info on what is going on to help decide the next step.

    Besides that, just dealing with fatigue as usual. Around noon I always have high fatigue– like I have to lie down and my feet and legs hurt and Im just feeling like a ton of bricks. Could be a sugar/caffeine crash, and also is about 4 hours after my prednisone. Ill have to see if I can do something about that. Oops gotta run! Ill catch up with everyone later!

     

  • Emelina

    Fingers crossed the scopes and heart cath get you the answers you need. Any reason to suspect sleep apnea? Sometimes that can cause wicked day time fatigue. 

  • LK

    Shea,  Good for you for pursuing getting all these tests and procedures done.  I know it is no fun but you are right in that it is easier to deal with the known than worrying about the unknown.  Will keep you in my prayers!

  • Emelina

    Holy cow, I think I finally found the right medication combo. I feel normal and the peak flows keep going up. 500 in clinic today, blood pressure is normal and HR normal. And I was stunned, the doc that I saw instead of my regular doc was awesome. He uses peak flows and action plans, validated what a crap shoot the last 3 months have been and made a very specific plan to keep things under control while waiting for pulmonology! We’re adding spiriva, retrialing singulair and trying Allegra. He even discussed the eventual options for getting off budesonide nebs when I feel ready. 

    Amazing! I didn’t realize how good it can feel when not fighting to breathe. Seems like a major storm is now partially in the rear view! 😁. Thank you all for lending your ears and support while in the thick of one hot mess! Literally, life and sanity savers. I hope I can return the favor for you all in the future. But until then, let’s keep the memes flowing.

  • LK

    SO HAPPY for you Emelina!!!    What awesome news!!  Isn't it just amazing when you can actually BREATHE again!!!  It's like you have parts of your lungs that you didn't know you had.  Sounds like that doctor is a good fit for you.  Hope you keep improving!!

  • Emelina

    Thank you again guys for your support, advice and wisdom while in a dark place. Thanks too for putting up with so many questions and predn-somnia-emotional me. I’m headed back to work with nebulizers in tow, but feeling more at peace with this disease, the steps to recovery, the prospect of hunting for a better job and less alone. You guys have been instrumental in my recovery. Thank you so much! -em

  • LK

    Wishing you the best of luck Em!!    Let us know how your day goes please!