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Old 01-27-2008, 06:36 AM   #1
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silent asthma frustrations

I am 23 years old...

I have had asthma since I was a kid. I had a few older teen years when it seemed to 'go away...' but in the last two years it has reared it's ugly head once more.

I also (had?) severe GERD due to some premature birth defects...I've had 2 corrective surgeries and have been symptom-free since.

I've been on advair for awhile, with the usual albuterol rescue inhaler.

I caught the seasonal 'junk' just before thanksgiving...as is my wont, it settled into my chest and turned into bronchitis. I was on biaxin & prednisone for a couple of weeks..with no change. We tried dioxycycline and more prednisone, as well as increasing the advair dose. Again, no change. My doc decided the bronchitis had moved on, but that my lungs/passages were inflamed from a combo of the cold weather, bronchitis and coughing in general. He upped the advair again to the 50/500, started a 3rd prednisone taper (this one a 5-week deal), added singulair and zantac just for kicks. they also ran some labs to see if they could find an allergy...with no luck. Apparently I tolerate everything...but of course, I'd been on prednisone for over a month at this point, so who knows? Anyway, a few days later I ended up in the ER for one of those uncontrollable coughing spells...they gave me two albuterol treatments neb which did nothing, some lidocaine in the neb (which is wonderful, fyi), and finally an epi neb treatment. This did relieve most of the coughing...for the evening. They also gave me IV solumedrol. The day after I went back to the doc, who gave me more solumedrol and changed my alubterol inhaler to neb xopenenx. The xopenex gives me more relief than the albuterol (which was seemingly ineffective.)

Currently, I'm using the xopenex neb every four hours. I'm like clockwork...I start coughing more about 3.5 hours in. I get worse at night, and have trouble sleeping...I almost always wake up 2 and 5 hours after going to bed....typically, midnight and 3am. I finally sleep from 3 or 4 until I wake up at 6/7 for classes and work.

My chest is ALWAYS tight. The xopenex relives this somewhat..but only for an hour or maybe two. I never wheeze, frustrating the ER docs and RT's ... who all swear that asthma requires wheezing. My primary rolls his eyes and tells me they're wrong...but this does NOT help me during those ER visits! I actually had an RT last night tell me that, if I was going to cough I should cough like I mean it...that my short, very barky (deep) cough wasnt doing me any good and I needed to cough longer and harder. This was after a severe attack...I'd been coughing non-stop for over an hour, my pulse was in the 200's, my heart beat was tachy and my fingers/face were tingling from hyperventilation. Of course...my O2 sats are always 99/100...further stumping the practicers of medicine we call doctors...

I've been referred to an allergy/asthma specialist...who is apparently supposed to call me for an appointment. To say the least, I am exhausted. I have been coughing for over two months, with frequent paroxysms and attacks that leave me coughing and gagging. I am sore and bruised...on my last visit my primary said even my throat was bruised from coughing! I can't lay flat...my bed is a pile of pillows... and going outside, laughing or crying makes it worse. I get lots worse at night...

Anyone have any tips? I'm thinking of asking to try something other than the xopenex...while it is more effective than the albuterol, it's not totally effective. I'm exhaused and bruised...and I don't feel like the docs are listening anymore. Except to tell me that my O2 sats are fine and they dont hear any wheezing...and to cough like I mean it. Ugh.

 
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Old 01-27-2008, 12:11 PM   #2
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Re: silent asthma frustrations

Wow, what a drag that you're going through all of this.

Two questions - 1. Did they do a chest X-ray along the way somewhere to rule out pneumonia? 2. Who's the asthma/allergy specialist they referred you to?

I've been to most of the docs in K.C. and there are (in my opinion) a couple of great ones here in town.

 
Old 01-27-2008, 01:03 PM   #3
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Re: silent asthma frustrations

Yes, they've done two chest x-rays in the last month. They show a few small granulomas (which I was told is somewhat normal in asthmatics?) but no signs of pneumonia.

As for the referral...I work (breathe, live and go to school) at KUMC, so I'll see someone there. I haven't been givena name yet....

 
Old 01-27-2008, 01:17 PM   #4
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Re: silent asthma frustrations

KUMC has some good docs but I'd share one warning - the med center doesn't have a separate immunology (allergy) or pulmonology department. Pulmonology is part of the critical care department and the few allergists are either in pediatrics or embedded in other departments. Based on the seriousness of what you're dealing with, be sure you're getting a doc who is well-versed in dealing with the ongoing treatment of asthma/allergies, not just one of the critical care docs.

Good luck.

 
Old 01-27-2008, 04:05 PM   #5
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Re: silent asthma frustrations

thanks...I'll keep it in mind. They do have docs listed specifically as pulmonologists or allergists...I think they're under internal med or, like you said, critical care. They do have a phone line which goes to the allergy/rheumatology 'department'...so hopefully I'll see the right person. If not, well...I dunno. I'm NOT impressed with the ED here, and as an employee, it is very disappointing. the unit i work on is amazing!

 
Old 01-27-2008, 04:31 PM   #6
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Re: silent asthma frustrations

Hi Celtic,

Let me first say - I am so sorry for your suffering - that must just be absolutely HORRIBLE what you are going through. Did they ever think of admitting you to a hospital for a few days to monitor you and try some other things? You are taking A LOT of medications and it does not seem to be helping you -- you must be so frustrated and scared.

I was wondering how well controlled your GERD is now? I have read that oral prednisone is very hard on the stomach and can really exacerbate Acid/GERD -- so I was wondering if maybe some of your tightness/breathing problems could be the medications you are on making your GERD lots worse.

Just a thought - I will pray for you and I hope you feel better RIGHT AWAY... Please keep us posted. Good luck with the allergy specialist.

Vanessa

 
Old 01-27-2008, 04:32 PM   #7
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Re: silent asthma frustrations

Have you been tested for Pertussis (Whooping Cough)? I went through a 3 month ordeal a couple years ago with a horrible cough that left me unable to breath frequently. After many many doctor's visits and treatments, it turned out I had multiple things going on at the same time.

1st--I had a sinus infection. Put on a couple rounds antibiotics in addition to my 4 allergy meds I take year-round. Developed cough that they thought was just caused by PND.
2nd-cough continued. They increased my allergy med dosages a couple times. I ended up on Singulair, Advair 500/50 and Albuterol. Went on a couple rounds of Prednisone. (I don't wheeze with my asthma either.)
3rd- cough continued. I went in for testing for silent GERD. Endoscopy showed nothing, but 24 hr PH confirmed I had GERD with coughing as my main sympton. Changed from once a day Protonix to twice a day Prevacid.
4th- Cough continued--I caught a virus and lost my voice and got the flu in the same week.
5th--received my third test for Pertussis. The first ones came back inconclusive which they attributed to having received the vaccine when young. The last one came back indicating that I had probably caught Pertussis early on. They figure all the antibiotics I was on for the sinus infection had treated the Pertussis. The cough remains even after treatment. It is nicknamed the "100 day" cough.

I can tell you I was thoroughly worn out during this entire time. One day, after about 3 1/2 months, the coughing just started decreasing in frequency.

Throughout this process, my doctors explained that there are several main causes of chronic coughs. (I did internet research to verify this.) Turned out I was dealing with all with a cough as my primary symptom. They are:
  • Post Nasal Drip
    Allergies
    Asthma
    GERD/ Acid Reflux
They also like to rule out any concerns with the heart as well.

I hope you find something from my experiences that is useful.

Good Luck finding your solution.

 
Old 01-27-2008, 04:40 PM   #8
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Re: silent asthma frustrations

Hi MountainReader,

Wow - I am so glad that you were able to finally find out what was happening to you - thank you for sharing it.

Is there anything that can be done for 'whooping cough' - or do you just have to go through it.

What medications do you take now for your asthma and GERD.

Glad you are doing better!

 
Old 01-27-2008, 05:03 PM   #9
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Re: silent asthma frustrations

I've had mixed experiences there as well - I think some of it is just the reality that all big hospitals have strong departments and others that are not so strong - if you run into trouble finding a pulmonologist and/or allergist that you feel good about just post something back on this board and I'll give you some names (sometimes I think I've seen every allergist and pulmonologist in K.C.).

 
Old 01-29-2008, 09:10 AM   #10
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Re: silent asthma frustrations

Hi, celticdrag0n

I'm also 23 and I can kind of related to what you are saying. I have only had asthma for a year now. Mine started last Jan when I got the Norwalk Virus from working in the hosital. B/c my immune system was down I caught Bronchitis twice after that and it has just never cleared up so I finally went to a pulmonologist and he said I probably have asthma so he just gave me a rescue inhaler. I mainly had problems breathing when I would go to exercise so I would just use it 15 mins before and be fine. But about 6 months ago I caught another cold and it seems to have made my asthma worse. My chest constantly gets tight and sometimes makes it difficult to breath, but I have no wheezing at all. I also start to cough so much I gag or almost throw up and it usually starts early mornings, after laughing a lot or strong emotions in gerneral. I can usually take my albuterol and be ok but I am so sore, in pain and exhausted after all that coughing. I have broken ribs right now from a car accident so I hate when I have coughing episodes b/c it hurts even worse. I'm hoping to get back to the pulmonologist soon to see if I can get something else to help control this better. I just have to finish up with my doc appointments from my car accident first.

 
Old 01-29-2008, 07:09 PM   #11
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Re: silent asthma frustrations

to gcsmithjr... (and others)

I received a call from the specialist office today...my appointment is May 14th! I want to call someone else in the area...who do you reccomend? I cannot wait anymore!

I started to panic after that phone call...I have been coughing since thanksgiving, and I am very discouraged. A couple of doctor appointments ago, my primary was saying things like "this is the last thing we can do with you as an outpatient, and you know what that means." Well, here I am two ER visits, two boxes of xopenex and innumerable phone calls to doctors later...still coughing. I feel like they're doing nothing. They're not ruling other things out, or testing lung function...the ER tells me my O2 sats are fine and there is no wheezing, so go see the specialist...who cant see me for three months. My chest hurts every second, my BACK hurts from coughing...sleeping flat is something I dream about if I sleep at all...I'm up two or three times a night. the xopenex neb is only bringing temporary relief...may two hours before I start watching the clock for the that four hour mark! I'm anxious and jittery all the time from the meds (started my 4th prednisone "taper" this week). I guess I'm just venting here...but what do I do? I got an email from the head of my department (I'm in grad school) suggesting I take a break to get well, or try to work out a way to keep up while resting! My gosh! The messages are so conflicting...help!

 
Old 01-30-2008, 04:28 AM   #12
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Re: silent asthma frustrations

Wow - 3 months is crazy given what you're dealing with. Here's who I'd recommend you call in K.C. (site rules say I can't post their contact information but you should be able to find them in the phone book pretty easily):

Pulmonologist: Dr. Bruce Schwartz at Midwest Pulmonary Consultants (they're over by the Plaza so not too far from KUMC). I can usually get in to see him within a week or two and I've heard good things about all of their other docs so if you can't see Dr. Schwartz I'd see whoever is available first.

Allergist: Dr. Scott Frankel at Kansas City Allergy & Asthma Associates (they're further south in Overland Park near College Blvd. & I-69). I see him only for allergies but he could probably treat you for both allergies & asthma. Sometimes it takes a little longer to get in to see him - up to a month - but they actually allow some walk ins at their Overland Park clinic - I just don't know if you can walk in as a new patient (but it's worth a phone call to find out).

Both of these guys are excellent doctors and hopefully they'll be able to get you on the road to recovery.

Good luck.

 
Old 01-30-2008, 11:09 AM   #13
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Re: silent asthma frustrations

Thank you very much. I called my primary this morning, and they were (reassuringly) also upset about the 3 month wait. Apparently, my doctor had checked "urgent" on the referral form and was as surprised as I was by this news. They went ahead and made me an appointment with KC Asthma & Allergy for Monday. I'm cant remember which Doc they said I'm seeing. Thank you very much for your help. Sorry about the panicky venting I did last night...it was a bit of a shock.

 
Old 01-30-2008, 11:35 AM   #14
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Re: silent asthma frustrations

I am glad that they were able to get you in on Monday - I hope that you get the help you need and start to feel better REALLY soon.

 
Old 01-30-2008, 12:28 PM   #15
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Re: silent asthma frustrations

Glad I could help a little - there's nothing worse that being in limbo for that long (or waiting for a month to see a doctor and finding out that he/she isn't very helpful). I've heard good things about all of their doctors so hopefully you're just a few days away from getting on the right track.

Good Luck!

 
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