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What am I supposed to be doing here?

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Old 06-30-2012, 01:19 AM   #1
Join Date: Jun 2012
Location: Philadelphia
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sawhoof HB User
What am I supposed to be doing here?

Long story short, the last 2 years for me have been an asthma doctor nightmare. Even though I come from a family with a strong medical background, finding a good doctor has eluded me. I have had 2 years of dealing with really incompetent practices.

I was diagnosed with asthma the end of my junior year of high school. From that point on it got progressively worse. I was put on low dose Advair and singular. I go to college and I end up getting pneumonia that was misdiagnosed as a cold by an idiot GP until I end up in the hospital for a day. Antibiotics clear up my pneumonia, thank god, but my asthma still got worse. I ended up in the ER for attacks seven times my Freshman year. I end up being put on Dulera, on the highest dose. I finally get an appointment to go see a doctor that claims to be an asthma specialist, who decides my Asthma is allergic. I get testing and I am allergic to all tree pollen in existence, cats, dogs and horses. He pushes allergy shots, which I am hesitant to do, and Xolair. I get the Xolair bloodwork done and my IgE levels come back normal, so insurance will not approve me for it. Nor do I think I need it, yet the doctor keeps pushing that it is allergic.

I grew up on a horse farm, but all of my asthma problems have happened in the middle of Philadelphia irregardless of season. I don't have any animals up here, and I go back home; hugging my horses doesn't do a thing. I go outside in the spring, smell flowers and I am fine. Not even a wheeze.

I tell them this, but he is hooked on the allergy diagnosis. I take a daily allergy med now and a steroid nose spray. I don't notice a difference, but at least Alavert tastes good.

I also get yelled at for not keeping my asthma under control by the practice's nurse practitioner. I get accused of not taking meds, or feigning a more serious case than I actually am. All because I get sudden asthma attacks that require prednisone or ER trips. Beforehand my PEFR is fine. 350-410 like normal for me, and then out of nowhere I start to cough. Two hours later I'm at 250, have taken my rescue inhaler and it does nothing. Then after a couple days I'm back to being fine and having absolutely no symptoms. I can't even figure out a definite trigger. I know that spray paint will cause me to have an attack, and illness, but I could have a week in February where I stayed inside most of the time, perfectly healthy, and then all of sudden I can't breathe.

I also do not feel that any doctors have considered my ER visits as serious, however when in the ER I have always been treated as a serious patient. Yet I'm treated as being less serious, or worse, a faker by other doctors. Which honestly, I have no idea why I have to defend myself on this issue. I have tests that say I have asthma, but apparently that is not enough. Yet most doctors have been really nasty to me when I have frequent attacks.

I know I will go to the hospital this year for asthma and I can't do anything to stop it or find a doctor who listens. Better judgement tells me this isn't normal.

Is this what controlled asthma is supposed to be like?

TL;DR: I'm being told I'm over-reacting but my occasional and severe inability to breathe is not an overreaction.

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Old 06-30-2012, 02:16 PM   #2
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Re: What am I supposed to be doing here?

How were you tested for allergies? Skin tested? It is possible that you weren't allergic to horses before but you are now. But even so, you can easily avoid cat, dog & horse allergens by staying away from them. And you are saying that you aren't having allergy symptoms in the spring when tree pollen is high? Allergy testing has to be combined with your medical history and your symptoms to properly diagnose allergies. Allergy shots are extremely lucrative for doctors, and the fact that he is pushing them as well as xolair when you aren't having allergy problems would seem to be a danger sign in my book that you need a second opinion. Do you have any friends/family with asthma that you could ask for a referral? You really need a dr who will listen to you, work with you to tweak your meds, figure out your triggers and give you an action plan so you will know exactly what you should be doing according to your symptoms. A pulmonologist or allergist would probably be best. The purpose of the action plan is to reduce emergency room visits and help you keep your asthma under control. Also important, you have to take your steroid inhaler as directed, consistently, not just when you aren't feeling well. I'm sure you know that, but I say that just in case. Also you don't smoke or anything like that which might be contributing to your problems, do you?

Old 06-30-2012, 03:42 PM   #3
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Re: What am I supposed to be doing here?

I've never smoked, never will. Haha not worth it I had a skin test and I know I reacted the strongest to pine trees, oak trees and horse saliva and mildly to cat, and all the trees they tested for. I disclosed that I lived on a horse farm growing up and the doc suggested that my asthma is allergic. That made no sense to me being a contributing factor for my asthma though, because I have lived in the city for the past two years. I haven't lived with pets and I haven't had allergy symptoms in the spring since I've lived in the city. Philadelphia does have a lot of street trees, but I haven't gotten my usual symptoms. Spring at home meant itchy watery eyes, runny nose and sneezing. I sneeze occasionally in the spring now, but not enough to warrant even thinking about going to an allergist for.

I know allergies probably are a factor, but I've never been able to point at seasonal allergies and say yes you are my trigger for asthma.

My biggest problem is that I've been seen by the two largest "asthma care" practices in the city already. They are combo allergists/pulmonologists. I do love the medications I'm on, my new corticosteroid did markedly stop me wheezing after laughing too hard. I did go for a second opinion and they told me that it was allergic based on my skin test and Xolair could work despite the contradictory bloodwork. Insurance(not surprisingly) denied to pay for it and so they considered it being caused by acid reflux. Which for awhile looked like it could make sense, so I took Prilosec, but the absence of other symptoms and a normal endoscopy led them to decide it was not acid reflux.

Both were also unwilling to go over an action plan with me, and both would not let me talk to a doctor when my asthma was clearly getting worse. Mostly because both had wanted me to make an appointment when things started to get bad, so after one or two sudden attacks I was labeled irresponsible. So I do need to find another doctor, that I know.

My biggest possible contributing factor is my work. I am a sculpture major at school, specifically a metals major and an apprentice caster/jeweler. I wear a lot of protective gear, but I know I work with very very hazardous chemicals and compounds. I handle daily solutions that contain cyanide, nitric acid and heavy metals. I know that this very well could be the root of all my problems, but I can't stop doing it. It's what I do. I wear a respirator with a fine particulate filter when filing/sawing, and a full face mask when casting. Everything is also ventilated with gas and chemical alarms.

I'm not quick to call this a trigger though either, my asthma first started getting worse before I had done this kind of work. I also don't find it difficult to breathe in the studio, and I never have. I don't get symptoms after work either. I also wear that respirator.

Things I do know that cause an instant and sometimes severe reaction are:
Spray paint and similar chemicals
Wood dust
Nail polish
Fine powders (clay dust, flour, plaster, etc)

I stay away from them though, and so they are not usually triggers for attacks.

Wow I ramble. I don't even know what to tell doctors anymore. I just take my meds and the most of the time I'm okay. I guess I'm trying to figure out if this is just how my asthma is going to be.

Any advice on how to talk to my doctor, once I find a new one, to avoid the xolair/allergy shot cycle and just get an action plan?

Old 07-01-2012, 06:47 PM   #4
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Re: What am I supposed to be doing here?

You know, it's possible you may just have brittle asthma.

Do you actually record your peak flows? Can you show the record to a doctor, that you actually are monitoring what's going on and your attacks are sudden?

Bad city air might be part of it, although Philadelphia really isn't that bad.

If you wind up in the hospital again, make sure you get some documentation of exactly what happened and how you were treated. Possibly the ER doctors can communicate with your regular doctors more directly.

Old 07-01-2012, 08:15 PM   #5
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Re: What am I supposed to be doing here?

I live in your area (and actually majored in metals in college too, oddly enough) and I have been going to the Pulmonolgy Associates at Paoli Hospital. I have had a good experience there. They have respiratory therapists you can talk to during business hours and the Dr has me come in every 4 months to check in. I was newly diagnosed and a hot mess when I started going there last year.

Old 07-01-2012, 08:21 PM   #6
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Re: What am I supposed to be doing here?

I should also add that I found an Allergist I love out in West Chester if you wanted a second opinion on the allergies, but that is a bit of a hike for you from Philly.

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