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Learning Asthma and Going it Alone

Hi all, 

I'm still dealing with problems from the last thread about my wedding and being surrounded by triggers, but the situation has evolved and I'm undergoing what seems to be a new flare-up. For the past two days it's been inhaler every four hours, chest tightness, and waking up in the middle of the night last night, resolved with a nebulizer treatment. I called my doctor today and am hoping to get a call back and appointment soon.

I was diagnosed in July, and I'm still very much learning to deal…without much help. The PA I have been seeing through my asthma/allergist specialist's office seems to know very little about asthma. My next steps are asking if I can see the real doc only and going back to my PCP to ask for recommendations for other allergists/a pulmonologist. 

I've done testing for chemical and environmental allergies to try to figure out triggers, but the blood test they did for environmental allergies came up negative for everything…not very helpful. So I'm left sussing it out by symptoms, which is hard and scary. I think dust is a problem, as I work in a dusty bookstore, and after handling some particularly dusty books yesterday, I was using my inhaler and nebulizer late into the night. 

Right now I am using a symptom tracker, and because the PA did not seem to know what peak flow is or how to prescribe me a peak flow meter, I bought one myself. I'm three weeks from my wedding, and living in an airbnb to escape mold while we wait to move in to a new apartment…the move-in date for which keeps getting pushed back. Stress may be another trigger.

Has anyone else had to do a lot of management without much patient education? I'm trying to get a better medical support team (and quick), but for now, I'm forced to figure out how to manage the best way I can.

Thanks everybody.

 

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  • Brenda Silvia-Torma

    Hi Mandy, could you use a mask while you're handling dusty books? My daughter recently brought home a dusty book from the school library and I couldn't stop coughing. Moving away from the book helped me, but since you are surrounded by books, I thought that perhaps using a mask might help. 

    I definitely suggest getting a recommendation from your PCP for another allergist/pulmonologist. You can also get names from your insurance company and from the American College of Allergy, Asthma and Immunology's .

    You're smart to be using a symptom tracker! That will definitely help you and your medical team figure out what you're reacting to. Keep asking questions–you deserve to know the answers!

    Brenda 

  • K8sMom2002

    Hugs, Mandy. It sounds like you're doing all the right things. It is hard when you're starting out and trying to figure asthma. Plus, I agree, there are a lot of inconsistencies in what even some medical providers know about asthma. 

    For work, can you get an air purifier or ask your workplace to upgrade its filters in its HVAC unit? A good place to start researching is the . I may have shared about it before — I always like to just paste in a quote about it so I make sure to get it right:

    The asthma & allergy friendly™ Certification Program, administered by the Asthma and Allergy Foundation of America (AAFA) in partnership with the international research organization, Allergy Standards Limited (ASL), is an independent program created to scientifically test and identify consumer products that are more suitable for people with asthma and allergies. You can find certified products and services such as carpet cleaning, flooring, vacuums and more at 

    Also, AAFA's resources about asthma have been fantastic for me, not just for educating me, but also to share with medical providers and family and friends and my DD's school. 

    AAFA's  is a collection of 11 (really short) videos to help understand asthma and asthma research. You can actually share those videos with folks, too, via a link.

    And the booklet and the are GREAT. I like to share those with people who may not understand how hard asthma is — and you can get them in free download, and print off as many as you need when you need them. 

  • mandyg730

    Brenda and Cynthia, thank you so much for those resources. I'm going to take a look at those booklets tonight, and the Locate an Allergist site is quite a gift to me right now. I'm super frustrated after calling my doctor this morning, leaving a message for him specifically, and receiving a call back from the same nurse I've spoken to before, telling me the same thing: "use your inhaler and nebulizer every four hours" and reluctantly offering me an appointment with the same PA! Is it just me, or should my doctor also be concerned when my asthma gets worse and my controller meds aren't working? Throw me a bone, here! Time to call my PCP and read the Guide to Managing Asthma.

  • Brenda Silvia-Torma

    Mandy, you're most welcome!! It's hard when your healthcare providers are not listening. In the past, I've struggled with finding a dermatologist that was compassionate and patient-centered…I've had to change dermatologists multiple times over the years because of the lack of quality care I was being given. But, it's easier when living in an area with a lot of choices. 

    I hope you're able to get an appointment with a new doc that is supportive, compassionate, and knowledgeable! 

  • Deborah Bartlett

    I myself have had to switch doctors in the past. The young PA knew nothing about my illnesses. He would say….Ah,it's post nasal drip. Don't worry. See me in 2 months. What did that solve? You have to keep looking until you find the right doctor(s). Avoid triggers as much as possible. Wear a good mask as a preventative. Keep hydrated. If you can, cough up mucus to help keep your airway clear. I wish you the best of luck in your search for a good doctor. Take care as best as you can! 

    Debbie

  • Pljohns

    Mandy-I can SO relate!! I've have bounced from pulmo to pulmo to allergist/immunoligist and back to pulmo.  All of my allergy tests came back negative as well.  All of the blood work did too and I don't have high levels of eosinophils either.  The end diagnosis-adult onset, non allergic, moderate persistant asthma.  I've not had a single provider that gave me any education AT ALL.  I landed in the hospital 4 times in a year-5 days each time-and have pretty much gone it alone for 8 years now.  PCP's wont touch me because of the odd type of asthma and in this city, pulmonologist want the PCP's to handle asthma so you can't get in to see them. 

    I had one really good pulmo that I got by accident one time in the hospital-I saw her for almost 2 years before she changed to sleep disorders and have been bouncing around ever since.  I tried to see someone else in her practice when she left because I'd seen them all in the hospital but the first available for an estabilished patient was 9 months out-a new patient slot was 14 months out!  That's when I had to change and i've had the worse luck and care-since then.  I finally decided after a round with no help at all getting ready for surgery 3 weeks ago that I was going back to that group no matter how long it took-they have new providers and I was able to get and appointment in 6 weeks.  

    Even my good pulmo didn't do much education-guess she assumed someone else had.  I would encourage to use the AAFA's resources and video's-they are really good-but you have to be an advocate for yourself.  I track my peak flow/FEV1 daily and can tell when something isn't right.  I've learned by taking very good notes what to add when something isn't right.  Unfortunately, most of that has been on my own.  I won't add prednisone without seeing a doctor but I'll throw extra nebs and extra inhaled steroids at it when i can tell from my notes that it's what we did the last time it happened.  

    I'm so sorry you are having to go it alone-it's tough.  I wish I had a good care team but i don't.  I'm hoping the new doc will be-I'm staying with that group no matter what thought-they are the best in town and i've seen and experienced what the others are like that aren't in that group.  I'm not a doctor by any means, but for the last 6 years, I've mostly ended up managing my own asthma and seeing someone for med refills only.  I do a lot of research to keep up with what's out there and am just tired of having to do it all by myself. 

  • mandyg730

    So, I have some updates and further questions! 

    After the couple of days of trouble, I talked to the doctor's office and they had me come in right away. Of course, the doctor himself was completely booked, so they wanted me to see a PA. They told me it would be a different PA this time, but lo and behold, once I got there, they were so overbooked that I ended up seeing the same PA again.

    They were ready with a NIOX test — I wonder if any of you have gotten one of these? It measures inflammation…and of course, my results were well within the normal range. The PA prescribed me prednisone and told me to use my nebulizer every four hours if possible during the flare up. 

    I have had terrible reactions to prednisone in the past–heart racing and pounding (tachycardia?). I have mentioned, I think, that I have generalized anxiety disorder. The prednisone and side effects make me REALLY anxious.

    I've still been waking up in the middle of the night every night, but most nights it's only for a few minutes. My immediate thought is, "HOW IS MY BREATHING?" and if it's ok, I can fall back to sleep. If not, I use my nebulizer and am usually able to sleep. Most nights, my breathing is pretty much ok. I think that some of what is waking me up is panic…and that anxiety might be a big trigger for me.

    Today I saw my PCP. I asked him about alternative doctors and the anxiety situation. My therapist suggested mild anxiety medication, like lexapro or prozac, but my PCP wants me to take lorazepam because I'm waking up in a panic, and he didn't want to prescribe me something that could affect my weight and sex drive so close to my wedding. He also told me to make my next appointment with the actual doctor at the asthma/allergy office I've been going to, even if it has to be a few months out, and use the tools I have (nebulizer, inhaler, controller meds) and the PAs to help in the interim.

    (He also infuriatingly told me to lose weight, which looking at my chart could have told him I'm already doing — 10 pounds in the last few months, 80 pounds over the past year and a half.)

    I'm continuing to journal my symptoms. I haven't started the pred or the lorazepam because both of those drugs scare me–serious side effects, habit forming properties, and because I don't really know how "bad" my asthma is. I have normal spirometry and niox, but there was a 17% FEV difference when they tested me a month ago. Any advice from anyone? I want to take the anxiety out of the equation a bit, but I'm scared of the drugs they prescribed. I try lots of natural remedies (meditation, breathing exercises, acupressure), but I feel like it's a lot of time and work to keep the anxiety at bay. I am trying to be kind to myself in the anxiety and not let my brain get carried away with worry about what "could" happen, but I'm still scared. I've read that benzos like lorazepam are not good with asthma…just looking for help or advice if anyone has been there.

  • K8sMom2002

    Mandy, I can understand feeling so at sea trying to figure out all these different docs' advice. And woohoo on losing that weight! I can tell you, I've been trying to lose the equivalent of a pants size for a year now with not much success. 

    A thought, especially since you're trying to figure out whether it's panic or asthma waking you up: It sounds as though you are going back to sleep after you wake up and either do a neb or realize your breathing is okay.

    Could you talk to your doctor about a sleep study? Sometimes it could be something else waking you up — sleep apnea, restless leg syndrome or something else. 

    I know that's one more thing to add to your already booked schedule, and it might be pretty hard to get a restful night's sleep in a strange bed. But there are at home sleep studies available — they don't give you as much info as an in-patient sleep study. The National Sleep Foundation has some .

    You don't have to do all this at once. I think you're wise to talk with your docs about what works for you, and you are moving in the right direction. 

  • Melissa G

    Oh my Mandy! I really don't like when dr's bring up losing weight, they are not very tactful.  You are doing amazing!

    Cynthia, had a great suggest about doing a sleep study. I had no idea that my youngest dd has restless leg syndrome, and that was waking her a lot at night.