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Asthma has me confused and depressed.
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zulemars posted:
I'm in my early 20's and I've recently been diagnosed with asthma. I've been hospitalized three times in the last 6 months. I gallantly follow my asthma plan but I can't find relief. Just being outside irritates my lungs and giving me chest tightness and shortness of breath, cleaning cooking and even the smallest task causes me to feel like i've ran a mile. I bring this to the attention to my lung specialist and he checks my lungs tells me there's no wheezing you're fine and increases my medication. I've been to so many different specialists and they all tell me the same thing. I'm at the point where I burst into tears when a doctor asks me if I'm' fine because every-time I tell them how I feel they tell me there's no wheezing you're fine your oxygen is fine.

On my second hospitalization they did an X-ray and they though I have pneumonia and hyper-aerated lungs so did decided to do an MRI. It showed that what I actually had was air trapping caused by a mucus plugs. They tried to do a bronchoscopy to clear out the plug but as soon as he tried to enter my lung I nearly went into cardiac arrest and they had to stop. They only told me my lungs were very irritated and red and he couldn't do it in my condition. One day later I was released from the hospital because my insurance wouldn't cover any more days.

I've been to so many specialist and on so much medication I always feel weak. The solumedrol they gave me along with the prednisone makes me feel weak and terrible and causes me a lot of joint pain, moodiness, and makes my whole body puffy. I have horrible purple stretch marks all over my body I look like a monster.

I'm sorry If I posted this in the wrong place. But I can use any help or tips on what I can do or to get better help. I feel defeated...All the medication I take is destroying my body and not fixing the main problem. I'm so tired of feeling this way. I changed my diet and eliminate the foods that causes triggers, but I still can't find relief.

Medications that I take; Prednisone, singular, zyntec, pro air HFA inhaler, Advair, abuterol sulfate, levofloxacin, and a Tussi Pres-B liquid (to help my dry cough).

I've tried making an appointment with an allergist but I have to wait over a year in every place i've tried to make an appointment.

Thank you for taking the time to read this... It means a lot especially when I have doctors who won't ask my questions.
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amcate responded:
You posted in the right place as there are many folks here with more severe asthma forms.

Sounds like the doctors you saw who said, "there's no wheezing, you are okay" weren't really listening to you. I hear not only on this board but also on the asthma UK's youtube account that although some medical professionals believe wheezing is necessary to say someone is having trouble, it simply isn't true. I also spoke to a nurse who I worked with, and she said it isn't true, because if a person isn't exchanging air, they are definitely in trouble, but there would be no wheeze because there's no air present to wheeze with. There's also cough variant asthma. Did they ever get the mucus plugs out?

It sounds like you are in an under served area, like I am, since you mention it taking a year to see an allergist. If that's true, I know very well the fustrations with that.

I assume you already know common asthma triggers and have tracked what seems to aggravate your asthma and avoid the triggers as much as you can. If you haven't, webmd has various articles on common asthma triggers. I usually just type things in the search box and it comes up, but let me know if you need the link.

If you have allergic asthma, some have found Xolair injections to be helpful, usually given by allergists in my area. It works by interferring with IgE, which is involved in allergic reactions. There's also bronchothermoplasty, which there are many threads on this board about....its for folks who don't respond well to the medicines, but it's not reversible. They go in and burn off some of the muscle in the lungs so the airways don't bronchoconstrict as much...when you have asthma and are exposed to a trigger, the airways tighten up as the muscles tighten up and there's inflammation as well as mucus. Bronchothermoplasty seeks to lessen the tightening of the muscles. Again, I'm sure webmd has some general information on asthma and the physiological components of an asthma attack if you put the words in the search box...again, let me know if you need a direct link.

National Jewish is a good place for asthma care, and it's located in Denver, Colorado. I've heard from others the care there is good, and they act as a second opinion source when local doctors can't get the problem fixed. You go up there for a few days, they run different tests, etc. The feedback I get from folks who've been is of two kinds: 1. The care is good, folks are nice there, but they weren't able to add anything to my care and just said my asthma is bad, so sorry, nothing more can be done 2. The care is good, folks are nice there, and they found I have asthma, but I have this other medical conditions (for instance, a rare pulmonary infection) that my doctors missed, and they started to treat me for that....so I'm feeling much better now. You can google them, and again let me know if you need a direct link. I believe Cleveland Clinic is also supposed to be good, but I've only known one person who went there.

Asthma is oftentimes misunderstood, even by healthcare professionals. Even by those who are knowledgeable...generally those who are Board Certified in Asthma, Allergy, and Immunology...there is just so much the science doesn't yet know about asthma. Of course, doing things that improve general health, good nutrition, exercise, rest, stress control, etc should make it less severe....but some folks still have problems even so.

Oh, and Dr. Sally Wenzel is doing research on the more severe forms of asthma which is another option if you meet research criteria. If you go to www.breathinstephen.com he has the links.

It's late, I've been busy today, so a bit lazy with the links....but again let me know if you run into trouble accessing and I'll look more into it and post links if you need them.

Best of luck, you're not alone.
 
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cwille responded:
hey zulemars, i just read your post, actually i just typed a whole lot of info to you , than my internet stopped working and i lost it all ,lol soooooo let me start all over , I know how you feel, i have cough variant asthma and have tried just about everything there is, i did the xolair shots, but had a reaction to the medincine, so that got stopped, i had allergie shots , yep got reaction to those also, stopped them, and i did the bronchial thermoplasty, unfortunatly it didn't help any. Now that's not saying it won't help for you, i highly recommend you doing research and decide for yourself, i have read , on this site nothing but good things about the xolair, and a few bad things about the bronchial thermoplasty, it seems to help alot of people, just not me lol. I also have been on a ton of meds, prednisone alot , it really screwed me up, the same , gained a lot of weight, shakes , massive sweating, cataracts in both eyes, but i also am on alot of steroids. I know how you feel about the docs not believing you, in the beginning whenever i went to the emergency room if i didn't get a nurse of doc who hadn't dealt with this type of asthma they would tell me , " oh your vitals are fine so there is nothing wrong with you" only to send me home and the next day i would get put in the hospital for 7 days, i do spend alot of time there, i have been in the hospital this year 6 times already , usually for up to 7 days, the last time i was in it was 2 weeks. I have gone to both the cleveland clinic and the national jewish clinic in denver, i highly recommend the national jewish , if your insurance will cover it, the cleveland clinic not so much. The cleveland clinic i went to is down in ft. lauderdale, i live in tampa so it was a 5 hour drive and a stay over night. They would only do one appointment a day , and than when i got ready to go they would call me the day before and cancel it . Plus the docs there weren't very good, they didn't tell me anything. Now the national jewish i do recommend , i went out to denver for a week and they scheduled everything for that week , although they didn't tell me anything i didn't know already , that i had asthma, but it was nice at that time to have a second opinion that agreed with my doc.
I am now disabled due to my asthma, i use to work as a mailman but the last year that i worked , 2012, i was in the hospital every month. Finally my doc put me out of work in dec of that year, and i got my disability from the post office january of 2013. I am having a hard time getting social security, but it is what it is. I really wish you the best of luck, it is hard but you have to keep fighting , especially because you are so young, i am 47 and was diagnosed when i was 40, but started have real bad problems when i was 42. I wish i could tell you what meds would help , but all the meds i have been on don't seem to. I am on an inhaler now called aerospan ,that seems to be helping, i also do pulmicort and atravent in an nebulizer, and if my cough is bad i mix it with liquid lidocaine. My doc and i are so desperate that we are using amitriptomine (spelling ?) which is a nuerological drug, it seems to be helping. I still get my spells but not enough to put me in the hospital just yet. Keeping my fingers crossed. My cough gets so bad that the only thing that seems to help is morphine, i don't recommend it but i am just letting you know what i take, oh wow i just looked and seen i only have 530 letters left to type, well i wish you all the best and will keep an eye out for your posts, keep doing all the research you can , good luck and god bless,


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