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amcate posted:
I'm not sure how to write about this, so I'll explain the situation, then if people have something to say, they can.

The method to diagnose my asthma was, "it's the most likely explanation", but there were no tests to rule out other conditions. Since I don't respond so well to asthma medicines, last year I requested to have other diseases ruled out. I had a known exposure to active tuberculosis (TB), but the employer had not done a follow up PPD. A PPD is a test used to screen for tuberculosis.

I went to the pulmonologist, and told them of the exposure and requested to have TB ruled out along with other diseases, like obstructed sleep apnea (OSA), etc. They did a CT scan of my lungs, which came back good, and did nothing else. I actually had to call several times to ask why things like OSA had not been ruled out, especially since 2 immediate family members have it, and it can make asthma worse. Finally, she ruled that out. I assumed the CT scan of the lungs would have ruled out TB.

I'm now with another employer who is very aggressive with PPDs and I asked the pulmonology office if they could write that the CT scan ruled out TB so I could give that to my employer. They said it did not rule out TB and that I was seen for asthma, not for tuberculosis screening. I asked them, "wait, I was not seen for asthma per se, because my asthma treatment is actually good, but I was seen to rule out other pulmonary conditions that could aggravate asthma since I rely heavily on prednisone." They said they didn't rule it out.

So, right now, I'm very concerned about the quality of care. As it turns out, I'm okay...the current employer is so aggressive for TB screens they actually do at least 2 a year, so I've had 4 screens done in the last 15 months...all of which are negative. When I asked the pulmonology office what they ruled out, they said they did general, broad based pulmonary tests that would screen for many different things, but did not specifically screen for TB per se even though they knew I had a known exposure to someone with active TB and at the time of their visit last year had not had any screens done since the exposure.

There are other pulmonary cases I've heard about that were not handled well, but I'm unsure if it's the same clinic. I'm in an underserved area, and if you're mean to a clinic, they can refuse to see you. There aren't that many clinics, and it's very hard to get in to see anyone, period. So, I've been hesitant to being a pain, though I do call them and question things and am persistent in asking for things.

I'm concerned about the quality of the care I've received....if you had a patient who doesn't respond well to their asthma meds and they were at risk for TB, why wouldn't you test it....or if they are at risk for OSA, why wouldn't you screen for that, or why not screen for alpha-1? It's like they just do a CT scan, then blow you off.

They couldn't give me a good answer to why they didn't specifically screen for TB. Good thing is, like I said, I ended up getting a job with an employer who is super obsessive about TB screens a few months after the pulmonology visit anyway, so got screened that way and was negative.

Thanks if any of you have had similar circumstances and what you did, if anything.
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cwille responded:
just wondering isn't alpha -1 a free test, i really feel for you, i got very lucky with a real good pulmonologist, but i ran into a lot of doctors that didn't believe i had asthma. My pulmo just kept plugging along, until he was able to send me to the national jewish hospital in denver, they put me through a bunch of tests for a whole week, but like i said i am very lucky to have good insurance also ,after i was classified disabled i was able to keep my insurance, i have humana. I'm don't know who your insurance company is, but at humana they have a seperate department for asthma patients and they where always kind ,and gave me info as to what tests where etc, of course since they are paying for it i guess they will be nice. Anyway, everytime i was in the hospital they ended up doing tests to rule out other stuff, of course they didn't catch my myesthania gravis, oh well, i am praying that everything works out for you and hope you are feeling better.
 
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amcate replied to cwille's response:
As always, thank you for your support, cwille. Yes, alpha-1 is a free test. I was bringing that up as an example and wondering why a doctor would not have mentioned it to me. I learned about it from the local American Lung Association and that's how I found out I'm low in the protein and a carrier.

In my case, they believed very easily that I have adult onset asthma. The asthma drugs help me, but I still have to take a lot more prednisone than what is considered safe. To me the next step would be to rule out other medical conditions that could aggravate asthma, but to rule out each condition, I'm having to really advocate for it. So, the alpha-1 thing was just an example....turns out, though, that even that was something I found and it didn't come from any of my doctors.

Anyway, turns out that the pulmonology nurse practitioner I saw called me back on another issue, but I had to remind her of my case. She said, "I really think you should go to National Jewish, why haven't you?" I said, "because when I saw you last year, you indicated you didn't think it was needed and that made it difficult for insurance to approve it." She then indicated she had some new clinical experiences since I last saw her, and now understands some of what I was trying to tell her during my last visit. She's now going to send a letter recommending National Jewish to help with the insurance approval. She is very nice, and good as a nurse practitioner and she's very honest, which I respect. She said she just doesn't see rare conditions, and has only seen 2 alpha-1 people in her career, so it's not even on her radar most of the time since its rare. Good news is that she learns from her clinical experiences and is now sending me a letter to recommend that I go to National Jewish.

My insurance is through the state because it's my only option since it's hard for me to work when my peak flows drop down (I've lost full time jobs before due to having to miss work for exacerbations). I make too much for Medicaid, so my only option is the stop gap policy, which doesn't pay for much, and they make it hard to get services out of state. National Jewish wouldn't give me any financial help since they thought the state insurance should help out some. I pay part of the premium for the state insurance, and taxpayers pay the other part, so I guess they don't like money going out of state? Anyway, even with now having the pulmonology nurse practitioner's letter, it still doesn't guarantee the state insurance will approve it, especially since the allergist is still against it....but I now have the PCP and pulmonologist saying to go to National Jewish. In any case, the state insurance program ends in December to be replaced with the new stuff...so it's probably best to keep her letter and then pursue it with the new insurance.

My insurance was not kind to me. They told me to get appointments as soon as I could, but when I explained I had to work to pay bills so would have to take my work schedule into consideration and then also when I told them I wanted to get an estimated cost from National Jewish before getting services (which is customary to do if you have a PPO, which is the type of insurance I had before going on the state insurance), the case manager told me I was just playing games and got angry with me. I requested a change in case managers, but even after I had a new one, the old one still contacted the allergist's office to say they were angry at me....even though she was no longer involved in my care. Most other insurances I've had are much better in terms of case management.

My PCP understands what I'm asking for, and says its logical, but for some reason it's not done.
 
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cwille replied to amcate's response:
I was very (am) very lucky to have a good case manager, with humana, I think though the only reason i didn't have any problems was because they got tired of paying for all my hospital visits, i was staying in the hospital everymonth at one time for at least a week, so i think they wanted to find out too what was going on, as for work well i use to be a mailman, as of january this year i recieved my disability retirement, after all i was never at work , i had finally used up all my leave ,sick and vacation time halfway through the year,so everytime i got sick and was in the hospital i didn't get paid , that sucks, i finally had to get my congressman involved , because it was almost a year since i put in my disability papers and wasn't getting paid.
It was a mess, anyway to make a long story short (yea right) i stopped working in dec of last year and went to the national jewish in dec, i just took a chance with my insurance. luckly they covered it. but really i still didn't get any answers. I recieved my disability finally in january of this year , so far the asthma has gotten under control, i don't go out to much, and i pick my days, so i think it was enviromental and other things we just still can't figure out. but you know how that goes, I did want to ask you, don't remember if i did before, have you tried xolair, it didn't work for me , unfortunatly i had a reaction to it, but i have heard that it works wonders for some people, now insurance is a problem , but i have found a place called "healthwell" that helps with co payment etc. give them a look maybe they can help you, i know they help me with my pulmicort, well check them out see if they can help, as always god bless and talk to you later.
 
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amcate replied to cwille's response:
I laugh when to you say "to make a long story short (yea right)", because I tend to be long winded...maybe too much. Truth is, my medical history is complicated and I've never been good at writing in a clear and concise way. When I've tried, I end up leaving out information that the audience needs to know to understand what I'm saying...but when I write too much, I'm sure people lose interest mid way through.

I won't go to the hospital even when it's medically recommended as I've worked with people with brain injury from severe attacks and have seen how the nursing home system treats them. I would rather die than to risk that....so I stay at home and treat it aggressively and hope for the best. So, my insurance has no financial incentive to investigate things. My impression (perhaps wrongly) is that the allergist just doesn't want to mess with arguing with the insurance company. I spoke with a disability lawyer, who said he wouldn't waste his time since my state laws define asthma disability in relation to the norms on spirometry only and I'm a statistical outlier (I'm weird). This effectively locks me out of disability for asthma, even if I'm on a ventilator every month...no matter how bad it gets.

I'm allergic to things in Houston, like dust mites and mold. I then moved to the desert where those critters don't live. My allergist did recommend xolair, but I told him since moving to the desert, I don't notice allergy induced problems, though I did have that in Houston. I didn't think my IgE would be high since I wasn't being exposed to any known allergens once I moved to the desert. Sure enough, they tested the IgE and it was low. That being said, I surely had allergy related asthma when I was exposed to mold and dust mites in Houston, and the allergy shots in Houston could cause an asthma attack. Since my IgE is low, xolair wouldn't be treating anything.

When it was discovered my body had launched an attack and destroy mission against the jaw joints (those evil, evil things....we must destroy...we must destroy), I learned very quickly about how my PPO worked and balance billing. Between lost work and the medical bills, even with the insurance, I nearly ended up without a home or food or medicines. So, like many, I have to balance some real medical concerns with the other very real concerns of having enough money to pay the rent and save for retirement. If I hadn't put off some of the medical visits, I wouldn't have a roof over my head right now.

Since I've been surprised in the past with balance billing from the provider...I wanted to check with National Jewish on a cost estimate to avoid a surprise....especially since my family says they can't help me financially if I get into trouble and I need food. I had never worked with an HMO...which is what the state insurance is...so I didn't know that the provider is barred from balance billing...and evidently the case manager I first had never worked with PPOs, so was not understanding my concern. Anyway, I got the case manager switched and spoke to her boss. Her boss had more knowledge on the different insurance plans, so when I mentioned my experience had been with PPOs, she immediately knew what I was talking about and what my concerns were.

I get medical care if it's reasonably feasible in terms of money and work...if it's not feasible, then I don't. I don't want to end up without food or shelter or a safe car to drive and if it comes down to it, would rather have a good quality of life than quantity. If my doctors had been more united in saying I need to go to National Jewish, it would have made it more difficult for state insurance to deny and I would have had more power in the appeals process. For some reason, until recently, only the PCP was trying to rule out other conditions and was supportive of me going. I'm glad the pulmonology nurse practitioner changed her mind, and I'll see what happens with the change of insurance.
 
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amcate replied to cwille's response:
I forgot to mention that I did try to convince the state insurance that sending me to National Jewish was in their financial self interest since if it results in less prednisone use, then they would save on future spending for cataracts, osteoporosis/broken bones, diabetes, etc in my case. For some reason, they don't think that way, though.

They also are no longer paying for nebulizers for severe asthmatics to use at home. Instead, they say to go the ER every time the asthmatic needs a neb treatment. My father laughed at this, saying, "well, that's cost effective"....they'll pay $500 for an ER visit each time a neb treatment is needed, but they won't pay $100 for an infinite number of treatments done at home. They don't make much sense in terms of their own financial self interest to me, but that's how the state insurance I have operates. Fortunately, I have enough money to pay for my own nebulizer. Anyway, thanks again for your support and ideas.
 
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amcate replied to cwille's response:
cwillie: I think one reason the doctors tend to not help me with differential diagnosis is that my personal best peak flow and spirometry values are way higher than the norms would predict. However, if you take the numbers as a percentage of my personal best, then it acts like asthma, varying anywhere from 55% to 100% (anything below 55% I can get a reading on). They tend to underestimate what's going on.

The pulmonology nurse practitioner ended up seeing a few people over the last year who had readings like 110% of predicted value, she then gave them albuterol, and it went to 125% of predicted value. She was telling me she was surprised since this is consider a positive result or supportive of airway obstruction. She was surprised someone with 110% of predicted value would indeed have an airway obstruction.

I learned statistics as part of my own education since my field uses standardized tests a lot. This nurse practitioner changed her mind due to seeing in practice what I was trying to tell her a year ago, but it often results in me not getting access to things. My allergist stills treats my asthma by the symptoms, with a nebulizer and prednisone, as if it were moderate persistent asthma (or moderate to severe persistent). However, their office still believes a trip to National Jewish is not needed due to my spirometry readings when compared to the norms. Their recommendation is for me to keep taking high levels of prednisone.

So, that's the main issue that gets in the way of me being able to access services, whether it's medical or social support.

Even the pulmonary nurse practitioner said, "I doubt you have anything with alpha-1, since your spirometry is so high compared to the norms." I said, "actually, I do, and I have the test results to show it. You would have missed it due to your interpretation of spirometry and use of norms." I've also spoken to folks at my work and also have listened to patient stories, and it seems a lot is missed around here until it's too late.

Anyway, if your spirometry is low compared to norms, it may explain why your pulmonologist is more interested....but I don't know. I also don't know why my normal is higher than the norms...I only know I have problems with breathing that nebulizer and prednisone help, but it won't stay stable very long. So, maybe my idea of normal variation in a population is wrong.

As I'm sure you can relate to, I just want a normal life. Best of luck to you.
 
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cwille replied to amcate's response:
have to say , everytime i do a spirometry it comes back normal, all the other tests come back normal also , vary rarly
does my peak flow go low, of course i don't usually pay attention to it.My pulmonologist was at wits end just trying to figure out what was causing the coughing, i did the pulminary function test and they came back with asthma, but we knew that , we just can't figure out what gets me going, i got my disability from the post office in january and have been better asthma wise since than, i have only been in the hospital once since than with me asthma, but now my myasthania gravis is kicking in and i noticed that i am starting to cough more, oh no, last saturday i woke up coughing and having an attack , haven't done that in awhile. now my nuerologist is talking about puting me back on prednisone for the myasthania gravis, its a nuerology disease that i was diagnosed with in april. i have been pretty much steroid free for about 2 months and to tell you the truth, i feel like garbage,so i don't know what to do , my apulmonogist doesn't want me to go back on steroids and niether do i. aaaaaaaaaaaa, so confusing, anyway now im ranting, sorry , thanks for letting me rant hope get to feeling better , god bless
 
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amcate replied to cwille's response:
Don't worry about the rant. You do it much less than me.

I just saw your post, which is why a late response. Thanks for letting me know of neurological conditions as a possible reason for breathing problems.

Right now, its hard for me to respond in a thoughtful way. My medical POA is a minister who has meant the world to me in my life, and in fact acts like a father to me and I'm like an adopted daughter. He's done this for me in my life as my parents love me, but are limited in their capacity to be loving. He was diagnosed with pancreatic cancer, which normally isn't caught until it's too late. The tumors are growing despite the chemo, so the doctors estimate he has weeks to live. So, I'm going to where he lives this weekend to say goodbye. He was crying and saying he feels like he's abandoning me since he knows I have no one else to act as a medical POA in the event I can't make decisions for myself. Since I'm mentally competent right now, I make my own medical decisions. Anyway, so that's the background of why I've not seen your post until now and why it's a bit difficult to respond well. I have to get ready to go see him.

I hope you didn't have to go on prednisone. Thanks also the information on your spirometry readings. I keep hearing back, "good news, you're perfectly fine and we don't need to do anything more" and then I'll say, "yes, I'm perfectly fine other than my asthma crashing once or twice a year, peak flows going below 55% of normal best, pigging backing nebs so I don't become unresponsive, etc."

Hope you feel better.


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