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Feeling like a real freak of nature.....anyone else?
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pljohns posted:
I've posted here a few times, but just a quick about me. I have adult onset(less than 2 years now), non-allergic severe persistant asthma. I've been evaluated by a pulmonologist and see an allergist/asthma specialist for care. She has seen me for about a year. Tuesday, on my regular visit, things were REALLY bad-spiro in the dumps as usual and having a really hard time. She told me she's leaving to move back home and has assigned me to a new doc that is associated with the lung research center here at UAB. Because of some recent problems, she added back some of the meds I've been off of for over a year and flatly told me that she was out of options and if the new doc didn't have any, my only and last home was Jewish National in Denver. She actually has nick named me her "disaster patient" because of the condition of my lungs and difficulty with meds. She was joking and I laughed too, but it still hurt to be called that.

I had allergic reactions to TONS of meds including all of the combo meds, so I have to use a neb. About 6 months ago, all of my rescue inhalers quit working on me, so now I carry a neb everywhere. Thankfully, it is still working. Going to Jewish isn't an option. They are out of network for me and the expenses would be huge.

As if that's not enough, a lady that works for me has recently starting giving me a hard time. Every time I have to use my neb, she starts yelling "see anxiety!" Yes, I believe stress does play a roll, and I've been under a lot, but this has been going on for over a year and steadily gotten worse. I average using me albuteral neb 3-3 times a week EVERY week. I feel self conscious enough when I have to use my neb, and now to have this added makes me feel worse. She has asthma also, but it's controlled with 1 puff a day of Advair, so she doesn't understand what it's like. I'm glad her's is controlled, but a little consideration would be nice.

Guess I just needed to vent a little. I absolutely feel like a freak right now and feel like there is no one that can help me with the stupid type of asthma. Thanks for listening.
Lynn
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deluxehd responded:
Hi Lynn,

Sorry to hear of your health struggles. I can relate to your situation. I also have adult onset asthma and started to react to my asthma meds. I had seen a pulmonologist, allergist/asthma specialist along with out of state asthma/allergy specialists. Didn't receive much help. I also considered National Jewish but it is expensive. After seeing "I'm Allergic to Everything" on MTV, I decided to go to a doctor featured on the show. He does alternative medicine and I have had great results! My treatments involve: Applied Kinesiology, Chiropractic and Acupuncture.

If you would like more information, please contact me at debneric@ptd.net

I hope you get answers and start feeling better.
Debbie
 
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cwille responded:
Hi lynn,
my name is ed, i go by cwille in the community. I was reading your post and thought i was reading one of mine. I also have asthma, but my doctor say's it is cough variant asthma, plus
allergies. I have been seeing him now for 3 years, he calls me his problem child. He also told me just recently that we are out of options, that i need to go to the national jewish place in denver. But since i live in florida , my insurance company is sending me to the cleveland clinic. A little about me , i have been in the hospital 13 times since Nov, 2010. I have also been on all the meds and also off. I am now on prednisone again, it seems to be the only thing that works, i have a portable nebulizer that i use, i am a mailman so i have it in my truck , i use it usually 2-3 times a day. I am now on xolair, hopefully that works, i only have been on it for one month, it is a shot for people with allergies and asthma. suprisingly the insurance company approved it, it is a very expensive shot.
The cleveland clinic is supposed to be the second best resp clinic in the country , of course the first one is the national jewish, but i go where the insurance is going to cover. About work , some people just don't get it. I was embarrased at first , but now i don't care let them say what they want, i just go and do my neb treatment and hope they don't have to go through what we are going through. well i just wanted to let you know that there are people out there who know what u are going through and feel for u.
good luck
ed
 
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sgbl88 responded:
Hi Lynn,
(((hugs))) (((hugs))) (((hugs)))

That is a terrible story. Joking or not, the comments of the doctor are hurtful. My specialists have said some things you don't want your specialist saying, but nothing like that. I have had specialest call me an enigma, a challenge, say "I don't give up on my patients, and I won't give up on you." My allergist has admitted to thinking of tests and treatments to try on me while she was out shopping with her kids and writing my name all over her conference notes. It isn''t fun being the callenging patient, and less fun being told that you are that patient. When your specialist is bringing treatments home from conference for you, you know you have reached the end of what she knows.

You truly have my sympathies.

I am familiar with Debbie's history and some of her sucess with the alternative treatment. I suggest that you look into it.

Your new doctor may have more options for you especially since he/she is qualified and interested in working at a research center. He/she will be much more agressive and trying many more things with you. My allergist is the top research allergist in my area, and she still said those things to me. We did finally find answers for me, so hang in there and don't give up.

The last treatment she tried on me was Aspirin Desensitization for Aspirin Exacerbated Respiratory Disease. After ruling most every thing else out (Neutrophilic Asthma, fungal infection, bronchiecstasis), she resorted to this. This have been HIGHLY successful for me. I had been getting really sick every four weeks and at shorter intervals before treatment. I have not been sick since treatment over 7 months ago. At most I have spent maybe 4 days in yellow zone proactively (and that not agressively) as opposed to 2 weeks agressively for treatment on a regular basis.

Hang in there. I am sure your new doctor will be very agressive in treating you. Don't let the inability of your old doctor steel your hope. The right doctor will make a huge difference in your life!!!

As far as work goes, some people are just plain rude. Chalk it up to THEIR ignorance adn lack of compassion. I would like to know how they would react if they suddenly couldn't breathe as easily as they normally do!! It really is quite scary when you can't breathe properly.

I hope that helps you some.

Take care and
God bless.
Sonya
Jeremiah 29:11 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end... Ye shall seek me, and find [me]
 
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amcate responded:
Sometimes I bring in my own issues too much or write too long-forgive me if I go there.

In terms of work, it is hard. I've had people laugh at me during an attack, and then say I have no sense of humor. I was separated from my inhaler, which could have been dangerous if it was more severe. I no longer work there. A person with mild asthma can not understand severe asthma. I have had both in my history, and it is a completely different ball game. Stress may aggravate asthma, as it does with many diseases, but by no means would stress by itself account for severe asthma. Just know you are not alone.

In terms of the doc nicknaming you, I had a similar experience in that a person was very excited to meet with me because I was such a challenge diagnostically. I smiled, and said, "Wow! I'm a guinea pig now. I'm so honored!" I laughed, "I mean I'm not a person whose been financially and emotionally devastated by a breathing disease no one has an answer for." Again, laughing as I said it. She indicated, "no, I don't mean that. I just find so fascinating." The good thing was she was willing to find me free tests that could be done in the area and she was knowable and had connections. So, I go with it. When I had surgery a few years ago that was suppose to help asthma, I was treated the same way. "Wow, you have a rare disease...this is great!" The fact I got so poor due to not having time to work because all the medical appointments that I didn't know if I would have housing or food in a few months didn't seem to be a concern. I judge the individual situation, this person I just met is willing to spend time with me and willing to investigate free screenings that I can deal with it.

It has been suggested to me to go to National Jewish to rule out any and all other diseases. In 2006, I was between jobs, and decided to get many things medical addressed. I put that first priority, with all else including having a consistent income secondary. I had the surgery for the rare disease which was suppose to help my asthma. The whole process took 2 years, and so I was broke and without insurance at the end and did not have a safe car to drive. I decided that I would only agree to medical treatment if it was feasible from an economic standpoint, including not only direct costs but the amount of time. If I take 3 days a week to go to doctors and deal with insurance, then I lose the opportunity to work. I am my only support.

I contacted insurance to see what the process for approval is and if it's feasible. It is not an emergency for me since most of the time I'm fairly well controlled, but with a lot of pred annually unless I wear a mask. She told me that she would not do the preauth unless I agreed to go without knowing from National Jewish what they say the cost would be. They are out of network and I don't know if they have a contract with my insurance saying they accept the insurance rate as full payment. In addition, when I told her I'm trying to find a job so I can have an income and therefore may not be able to do everything she wants as quickly as she wants. She told me I was playing games with her, and that I didn't really want to breath. She kept telling me I would not have to pay anything, and I told her National Jewish was out of network, so how does she know if she doesn't know the contract the insurance has with them. Her supervisor told me that I was correct, and that she was wrong to tell it would cost nothing. They reassigned me, but if the new care coordinator can not understand that what is ideal is not always realistic, then I will not go at this time because I can not afford to take the time off from work and delay an income indefinitely while chasing down what they want.

Sometimes people do not know understand what it is like from a patient's perspective unless they've been a patient.

They could not keep me controlled one year, and I had to move to less pollution. Maybe it would help?
 
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amcate replied to amcate's response:
Sorry-for what's it's worth-I was saying I would need to hear from National Jewish directly that I would owe them nothing. Of course, they can't do that without knowing if insurance approved me going there.

If anyone has a PPO, if you go out of network the insurance might pay the "reasonable and customary" fee to the out of network provider that they would pay for someone in network. However, if the out of network provider has not agreed to accept that fee as payment in full, they will come after the patient for the difference. Let's say the "reasonable and customary fee" from insurance is $7,000. The out of network provider charges $10,000. If they have not accepted $7,000 as full payment, they will go after the patient for the additional $3,000. Don't ask me how I know this.

So, I was wanting to verify with National Jewish before I agreed to treatment what they said the cost estimate would be. I can not do this until insurance approves me going.

The care coordinator kept saying, "have you ever had to pay a copay?" I said, "no, but I've always gone in network. This is first time I've gone out of network." She said, "you won't have to pay anything." I asked, "has National Jewish agreed to accept your 'reasonable and customary fee' as full payment?" She said, "I don't know, but you have no copay." I said again, "would National Jewish accept your payment as payment in full? If they do not, they will come after me for the difference. They may not have a contract with you all agreeing that your payment is all they will charge."

When I spoke to the supervisor, she told me I was absolutely correct. She also said the care coordinator was wrong to refuse to process a preauth because I would not agree to go until National Jewish could give me a cost estimate from their viewpoint.

Just sharing insurance information for those who have never dealt with PPOs. What I currently have is not exactly a PPO, it's strange. But I assume it works like one. The supervisor said I was correct.


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