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Old 06-30-2013, 11:18 AM   #1
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Need advice about asthma symptoms, dr's not helpful

I got sick in January with a sinus infection that settled in my lungs (they almost always do) and it look 5 rounds of antibiotics, 4 rounds of prednisone, and 2 1/2 months to start feeling better. I, use a nebulizer, twice a day when I'm working (because I don't want to pack it back and forth and use one of my precious breaks to do a breathing treatment) and 3 times a day when I'm off. I started using it daily during that infection - in the past I have only had to use it occastionally. Now its a continuous daily occurance. I finally started feeling better the end of March. In April we had a freak sand storm here in Arizona (we don't usually get them until summer) and that triggered my asthma again. Luckily, I didn't have to go on prednisone. (I hate the side-effects of that stuff!) The last (almost) two months have been a nightmare. I'm having symptoms almost everyday - chest tightness, short of breath, cough, fatigue, etc. The weird part is my peak flows have only been in the yellow a couple of times. But each time I go to Urgent Care or my Pulm my oxygen level is in the low 90s. If I'm at Urgent Care, they give me a breathing treatment with albuterol and duoneb mixed together, and that usually helps. If I go to my Pulm, she only looks at my oxygen and the lung function tests - which, according to her, are in the "normal range" - whatever that means. She's never explained the results to me and never tells me what my number is. At this point, I don't think she is taking me seriously and has basically told me nothing's wrong and to stop whining. Ironically, the last time I saw her (On June 19th) my oxygen was at 91%. I've never been that low. I was light-headed, dizzy, and my muscles felt extremely weak. Usually I sit in one of the chairs in the exam room and wait for her to come in, that time I laid on the table on my side gasping for air and curled up nearly in a fetal position. What did she do? Absolutely nothing. My oxygen was still "not low enough" to merit intervention, supposedly my lungs sounded clear, and she just said to "keep doing what I'm doing and to come back in September for follow-up". And, as an afterthought - If my oxygen falls below 90% I might think about going to the ER. JUST HOW AM I SUPPOSED TO KNOW THAT IF I DON'T KEEP COMING TO YOU TO CHECK IT? Its not like I have a pulse-oximeter at home where I can just check it whenever I want to. I can go to Urgent Care, but that's getting expensive as I pay 20% of whatever the final bill is. The worst part is I'm on disciplary action at work for "preventable mistakes" as they call them, and I KNOW its because of my asthma. I can tell I'm not getting enough oxygen just by the way I feel. I used to be able to walk 1 mile a day on a treadmill and I lost 25 pounds. With the prednisone, I've gained most of that back and I can't walk more than a few feet without getting extremely short of breath. To the point that I have to stop and catch my breath, everything goes black, and I feel like I'm going to pass out. So, I'm extremely frustrated and not sure where to turn or what to do at this point. I went to my PC dr last week, but that particular day I wasn't feeling too bad and my oxygen level was actually at 97%, so of course she didn't really take me seriously either - even though I was coughing so hard that I couldn't say more than just a few words at a time. She doesn't want to "change/override" anything that my Pulm is doing, as the pulm is the "expert" (I'm beginning to doubt that at this point) so I'm really back to square one. She did suggest I see my cardiologist again (for a a heart murmur I've had since birth) to see if that is having any affect on it. The problem, the soonest I can get in is the end of July. She wants me to have another echocardiogram (ultrasound of my heart) done, too, to see if anything has changed since last year - and of course I can't get the scheduled until I see the cardiologist. And then the girl at the appointment desk said they're scheduling out 6 to 8 weeks for those as well, and she won't put me on the schedule until I see the dr and she has the orders from him, so probably won't get to have that test until September. In the meantime, I'm probably going to loose my job - as I'm on "final notice" at this point, so I'll have to cancel everything anyway because I will no longer have any health insurance. Its a vicious cycle. I'm trying to find another job, but even if I do, it usually takes a couple of months before benefits kick in, so there again, without insurance! If it wasn't that I have to pay $150 plus 20%, I'd go to the ER now so I can get all of the tests done more quickly, but I'm also afraid that they, too, will say "there's nothing wrong" and send me home and I'll pay another $150 for nothing. At this point I'd just really like to have some answers and have someone listen to ME as a person, and not just look at the stupid tests and tell me I'm find while I'm sitting on the exam table shaking and gasping for air. If anyone has an ideas where to go or what to do next, I'd greatly appreciate it. At this point I'm afraid I'll either pass out driving and crash, or at work and end up having to go in an ambulance (which would be totally embarrassing and probably cost me my job because I don't have any sick time left). I really really need answers and for someone to take me seriously. I love my job (except for my bosses) and the last thing I want is to get fired because I can't get enough oxygen to even think straight!

 
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Old 06-30-2013, 01:12 PM   #2
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Re: Need advice about asthma symptoms, dr's not helpful

It was a little hard to follow your account but I didn't see where you said if you are on any daily meds besides the albuterol. What else are you taking and how much?

 
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Old 07-01-2013, 06:08 AM   #3
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Re: Need advice about asthma symptoms, dr's not helpful

Hi Titchou,

Sorry about that!

I'm on Symbicort 80/4.5; 2 puffs twice a day
Nasonex 1 spray in each nostril twice a day
Proair 2 puffs four times a day as needed
Abuterol nebulizer twice a day.
I used to take Singulair at night but my Pulmonologist took me off it because she didn't think it was helping.

 
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Old 08-17-2013, 07:17 PM   #4
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Re: Need advice about asthma symptoms, dr's not helpful

For starters, you can buy yourself a pulse ox meter so you can track it at home. It's not an expensive gadget so if I was you I'd get one. Do you have a peak flow meter? I'd get one of them too... Then check regularly and keep a record of both readings so you can show your doctor/s what's actually going on between visits.
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Old 08-18-2013, 01:23 PM   #5
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Re: Need advice about asthma symptoms, dr's not helpful

I do have a Peak flow meter and I check it daily, but I have not been logging my "numbers". I will start doing that - maybe keeping an asthma journal will help the doctor's see how I am feeling. I also just got a new job, so when I get insurance in a month, I'm going to look for a new PC, an allergist and a new pulmonologist to see if I can find some answers. Thank you, for the information. Kaji

 
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Old 08-22-2013, 09:16 AM   #6
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Re: Need advice about asthma symptoms, dr's not helpful

I've had similar issues with doctors and none of them got any better until I found a new doctor. I would also suggest writing down as much data and information you can. Doctors love that. Write down time of day, PF values (try to do 3), any symptoms you're having, anything you might have done or encountered that affected your asthma, etc. I have a pocket calendar that I use for this purpose and track all rescue meds, exercise, etc. This will help with the problem of not feeling well over time, but necessarily bad enough when the doctor sees you.

If I were you I'd also nebulize more often if you feel the need. I'm in a really bad spell myself right now, just got out of the hospital, and am doing 7-9 treatments a day. It shouldn't be a problem for you to nebulize every 4-6hrs if you need it. I wish you luck in getting this figured out.

 
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Old 08-22-2013, 12:17 PM   #7
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Re: Need advice about asthma symptoms, dr's not helpful

Thank you, Branfeld for the information/advice. It helps to know there's someone else out there that knows how I am feeling. I'll be getting a pocket calendar or a small memo pad in the next couple of days so I can track my symptoms. Hopefully this will help me get some answers.

I did finally get fired from the job that I mentioned in my original post. The good news is I was able to get a new job pretty quickly and I'm back to work now. The bad news: I won't have health insurance for about another six weeks. So I'm crossing my fingers that I stay healthy in the meantime. I've applied for state funded insurance (aka medicaid), but unless you are pregnant, there's a 2-month waiting list to get an interview to get approved! The good part is that I work in an actual pharmacy - for a mail-order pharmaceutical company - called Express Scripts. So, if anything goes wrong, at least they should have the meds available to treat me - ha ha! The other part that is an advantage is because of the size of the pharmacy and the need to keep things sterile, etc., they have a REALLY good filtration system. So, I have noticed that my breathing is a lot better when I'm in there at night (I work the night shift). I typically come in to work short of breath and feeling the usual symptoms, but once I've been in the pharmacy for about an hour, I start feeling a lot better. I've been tracking my peak flows, and they seem to be somewhat better as well - at least better than they are when I'm not in the pharmacy. So I'm thinking one of the things I may need to do is get one of those portable air purifies/ionizers and set it up in my living room at home and see if that makes a difference for me at home. I'm definitely counting down the days until my health insurance kicks in (October 1st) and then I'm going pick completely new doctors - both a PC, an allergist (to see if this is related to allergies), and a new pulm. Hopefully with the new information I have written down, I'll be able to get some answers. I've also gotten copies of the medical records from my previous pulm, including the results from all my lung function tests that I have taken in her office. I've been doing my own research and I think I'm starting to understand the numbers and hopefully with the help of a new doctor, I can come up with a new action plan. I certainly hope so - cold/flu season starts in just a few months and I DON'T want another winter like last year! (and I had the flu shot!)

 
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Old 08-22-2013, 12:24 PM   #8
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Re: Need advice about asthma symptoms, dr's not helpful

Brandfeld, as for you suggestion about my nebulizer, my current pulm told me I could use it up to 4 times a day, but I don't do that because of my work schedule and the fact that I don't want to have to haul that thing with me to work. We only work an 8 hour shift, so I only get a 20 minute and a 10 minute break - so not really enough time to do a neb treatment - plus the 20 min break is my "meal break" so I like to use that time to have a bite to eat to keep up my energy level for the remainder of the night. My supervisor may let me take an additional break to use it, if I had a doctor's note, but since I'm new, I don't want to make any waves yet until I get a better feel of how the management feels about that kind of stuff. I DON'T want to give them the impression that I am not capable of doing my job! So just kind of playing it by ear right now. We'll see what happens.

 
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Old 08-22-2013, 12:36 PM   #9
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Re: Need advice about asthma symptoms, dr's not helpful

If you need to take medicine at work, especially for a respiratory issue, that's totally covered under the Americans with Disabilities Act (ADA). Us asthmatics tend to have the mindset that we don't want to bother people, make a scene or cause fuss. Speaking for myself, this has often gotten me into trouble as I pretend I'm fine, wait an extra hour to take medicine, or wait as long as possible to call the doctor or go to the ER. It's up to you, but I would get a note from my doctor so I could take my medicine. Breathing is essential. It's not like you're asking for a smoke break.

 
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Old 08-22-2013, 12:39 PM   #10
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Re: Need advice about asthma symptoms, dr's not helpful

Also on the nebulizer issue - I used to have the same problem of lugging one around. I eventually bought a Pari Trek S, a small portable model, and started carrying it around. Now days I carry a small bag around with me everywhere containing a nebulizer and meds, inhalers, allergy meds, peak flow meter, pulse oximeter and my notebook. Then if I ever get into trouble I have most of everything AND if I end up in an emergency situation all my information is readily available if I'm so short of breath I cannot talk.

 
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Old 08-25-2013, 05:47 PM   #11
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Re: Need advice about asthma symptoms, dr's not helpful

Thanks for the information, Branfeld. I never thought about this being covered under ADA. I'll also look into the portable nebulizer. I didn't realize they made ones that small, or that would plug into the cigarette lighter in the car. I also didn't realize they were that inexpensive. The one I have now I got through insurance on a 'rent to own' type of deal, so since it took me a year to pay it off (my portion), I figured they were pretty expensive. Good to know!

I remember thinking a couple of weeks ago that I wished I could plug my nebulizer into the cigarette lighter in my car. I can't remember why now - probably because I was out running errands and had gotten short of breath. It seems like lately my rescue inhaler doesn't help when I start feeling like that. Its good to know that really is an option.

I like your idea of a backpack as well. Since I work in the pharmacy, all of my meds have to be in their original containers with my name on them. As you know, this becomes rather cumbersome and forced me to purchase a rather large purse in order to accomodate the size of the boxes for my inhalers - especially the symicort. And, even when I'm having mild symptoms, the weight of my purse feels like 50 pounds when its hanging on my arm! Maybe this will be a better option. When I get medical insurance again, I will have my doctor write a note explaining my asthma and my possible need to do a breathing treatment during my shift. Hopefully they will be willing to allow me to take an additional break, rather than having to use it during one of my regularly scheduled ones!

 
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Old 09-15-2013, 01:41 PM   #12
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Re: Need advice about asthma symptoms, dr's not helpful

You could also use a back pack with rollers or a laptop bag or small luggage that rolls to put your meds and gear in. That might make it easier to transport. If you don't want to carry a lot of meds with you ask your pharmacy to blister pack them by the week that way you only carry one week at a time plus inhalers....just a thought.

 
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