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    amcate posted:
    I have weird spirometry readings, and was wondering if any of you have had similar issues.

    In essence, when I don't take any medicines, it does coorelate with symptoms, though at a higher level than normal. My records have it varying between 6.5 and 11.89 PEF, though both readings are interpretted as normal when compared to norms.

    There have been three times I've questioned how they are interpretted. First, when I was having a lot of symptoms, went to the family practice doctor, who said I was okay since it said 75% of expected value compared to norms. This is when my rescue inhaler was failing, and I would end up losing consciousness. When I got a second opinion, the allergist said I was not okay and started prednisone, with vast improvements in a week.

    The second time was when I was in a high pollution city and they increased the medicines, I felt better for a time, but then I felt worse. The spirometry said compared to norms I was fine, so they questioned if it was anxiety/stress. I moved to a small town, and within a month that is when PEF went from 6.5 (in the polluted city) to 11.89 (within 3 months of moving away). I went back, and the allergist in the polluted city was surprised, and I said, "I guess you really were being hurt".

    The third time: As time has progressed I've gotten better at knowing what my triggers are, and I've gotten better with my medicines and can react quickly. So, whenever I go to the allergist, the spirometry consistly reads the same numbers. It's complicated so this is not exactly true, but I'm simplying: Insurance has used this to deny benefits. I told insurance that the allergists does not control for the amount of drugs taken before the test, so with some of the spirometry I I had taken 160 mg of prenisone within 48 hours, and 2 neb treatments with the prior 24 hours, with one being 2 hours before spirometry, and other spirometry tests were with my controllers only on board. Still, insurance said that the baseline lung function and health of the lungs was stable and did not have exacerbations and remissions. The purpose of this was to get more testing to see if I can get my prednisone bursts down. I have not had a chance to verify with the allergist what they think, but according to insurance the allergist also interprets this as the baseline function of the lungs being good, and says that the amount of prednisone taken or rescue meds taken before spirometry is not important in interpretting it and that it is valid to compare spirometry done without any medicines taken before to spirometry done with high level of corticosteroids and bronchodilators taken before.

    I ask if anyone has had problems with this as I'm going to the pulmonologist next week, and get concerned with them using spirometry in a way that doesn't make sense to me. I've not had a workup by a pulmonologist before. Thanks.
    sgbl88 responded:
    Hi amcate,

    What you have to remember about being compared to norms is that a "norm" is a statistical computation based on a group of people who are hopefully similar in height and age to you. It is the average value for that group of people. Many of us on the board do not "fit the norm". The people who have the biggest problem with it are those of us who are well above the norm, like you and me.

    Your allergist at least is well aware that they shouldn't treat the numbers, but the person. Your GP needs a lesson on this.

    Will your pulmo be doing lung function testing? If so, have they given you directions on not taking certain meds before the tests? Bronchodilater use prior to testing can affect the results and give the impression that you are beter than you really are. When I am head to the doctor, I try to be at my "worst". I avoid using a bronchodilator 4 - 5 before the visit so that the doctor can tell exactly what I am dealing with at that time. I will use maintenance meds, but I avoid rescue meds and nebs if at all possible. Sometimes, you just gotta breathe though!!

    I hope that helps you some.

    Take care and
    God Bless,
    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]
    amcate replied to sgbl88's response:
    I have worked in a research team closely with statisticians, so I have suspected your explanation for a long time. I've learned about ANOVA and bell curves, multifactorial statistical techniques, etc. It's been awhile, though. The issue I'm having is that the allergist said (and I'm simplifying things somewhat here) that I don't need to go to National Jewish based on how spirometry compares to norms. Insurance denied access to National Jewish based on that. When I tried to explain statistics and how standardized tests are normed, neither one would listen to me.

    The allergist, however, is good at looking at the whole picture, and not only the numbers, in terms of deciding medicine use. The GP who told I was okay I never returned to see him. I felt that if he didn't know, he should have said he didn't know and referred me out. My current GP is very good, and I recently visited him to discuss things, the lack of access to National Jewish, and he thought since the insurance would pay for pulmonary consult, it made sense. He has delivered babies, he's done punch biopsies on moles, and as we were talking, he mentioned some cases he's treated where the insurance did not allow access to an allergist, but did to pulmonology for severe asthma. He knew about the more severe asthma cases, and said typically when he consults with pulmonary he also tries to get a test done which the oxygen companies do for free where you wear a pulse ox all night to be sure the oxygen levels don't drop during the night. He asked how much pred I take a year, and said it was a lot compared to his experience. He has no problem referring out when he doesn't know. He's a very good GP. The GP I described above I left years ago.

    I've had trouble with asthma not responding well, and so in some situations to delay the bronchodilator would put me at risk safety wise. I have mild exacerbations, like right now, but then when it gets bad, it's really bad. Last summer, I was basically in bed for almost 1-2 months (yes, I walked around the block some, and so was not bed bound-you get sores and pneumonia if you don't get up at all). But I didn't have the energy to do laundry, I could spend a few hours cooking, but not carrying the clothes the laundry mat.

    I agree with you that the meds should be held constant if possible to attribute the spirometry readings to underlying lung function. My GP is the PCP for my insurance, and they are managed care. The issue is that the allergist and the insurance do not recognize that meds should be held constant to make the comparison valid, and I've been denied access to National Jewish based on that (ie, spirometry at point 1 with no meds before hand=540, spirometry at point 2 with 160 mg pred in last 48 hours and 2 hours prior had Duonebt=540). They are saying that it is valid to conclued no change in baseline lung function, and that meds taken beforehand don't need to be considered and are denying benefits based on that. My understanding is that allergist is backing that up, though I don't know for sure since I've not had a reason to go back and see the allergist. The PCP thought a referral to a pulmonologist might help since he said a pulmonologist should not make that error.

    I agree with what you wrote, but the allergist and insurance do not and as a result I can't get to National Jewish.

    The first appointment is on Friday. They don't know me, so I assume they'll be getting a basic history from me and then letting me know what to do. I'm sure they'll tell me what meds to hold.

    I just didn't know if anyone else has had experience with health providers denying access to care or not giving needed medicine based on the fact the patient doesn't fit the norms.

    Peak flow goes down when I don't feel well and goes up when I do, but it's at a higher number than the norms say, so insurance or doctors don't always listen to me and I end being denied meds or access to services.
    amcate replied to sgbl88's response:
    Thanks again for your comments and help, Sonya. You are very kind.

    This is just to let you know of how the pulmonology appointment went. I have a complicated history, so I wrote things out ahead of time, and she said, "well, you didn't exactly give me a note, you gave me a three page letter", but I don't know how to explain it all in a memo.

    Overall, she seemed nice and kind, and she seems like she has good basic pulmonology knowledge. Of course, she's a pulmonology PA for 13 years, so I would expect that.

    She said that I have a large rib cage and thoracic area and very broad shouldered and so she would expect the norms to not apply to me. She said it was wrong for insurance to deny benefits based solely on spirometry and when I showed her the old records from Houston, she saw the difference in PEF and said, "I would read this early one as saying you are in an emergency. It's showing values that are almost half of the values read after moving away from the pollution. You were in a pulmonary emergency. I don't care what the norms say and how you compair to norms. You had spirometry values almost half that of your personal best. You have a large thoracic area for a woman. Insurance was wrong to deny coverage."

    She asked a lot of questions, "have you been to an ENT? Do you rinse out your sinuses? Have you been evaluated for reflux? What about the airway obstruction in your throat? You you have problems swallowing?", etc, etc, etc.

    I said, "yes, all that has been covered. I've just never had a pulmonary workup to see if something else has been missed."

    She asked, "have you ever had a CAT scan of your lungs? Have you ever had a chest X-ray?" I said, "CAT scan, no they never did that. They did chest X-ray in Houston, about 10 years ago, but nothing since then. I have a known exposure to active TB since then." She also wanted to follow up with a modified barium swallow, but I told her that was already addressed when I had the TMJ surgery. So, she decided to hold off for now.

    She also asked, "what pulmonary function tests have been done?" I said, "spirometry, and then one time exhaled nitrogen oxide. The exhaled nitrogen oxide was barely acceptable after a burst of prednisone. I have not had any other test for the lungs, but a lot of allergy tests and IgE tests. Here are the copies."

    So, now the pulmonology office is going to talk to the insurance and tell them the CAT scan is needed and see it they can't get them to pay. The PA said she will also discuss the case with the pulmonology MD and pick his brain to see where to go from here.
    sgbl88 replied to amcate's response:

    That is awesome. It sounds like you have found a fire ball PA (who probably works under a FIRE BALL doctor) who will be on your side and really do their job - FIGHT for you to get the care you need!!!

    I wouldn't be surprised if you see the doctor next time and maybe everytime for quite a while.

    Please keep me posted.

    Take care and
    God bless.
    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]
    amcate replied to sgbl88's response:
    As always, thanks for your words of encouragement, Sonya.

    I got a new job, and asked coworkers who would be good to see from that office since insurance has a limited number of contracted pulmonologists. It's a frienge benefit of working in healthcare. My coworkers took different color of highlights, and color coded for really bad to really good. There are 8 MDs in that office, and only one they said was horrible, then 5 were competent, and 2 were wonderful and God's gift to pulmonology.

    The whole visit from beginning to end took about 1.5 hours, which is rather rare around here-normally you are rushed in and then out. I live in an area without many doctors, and there are so many other patients.

    I don't care if it's a PA or an MD who sees me, as long as they know what they are doing. The first GP who said I was okay was less competent in asthma than his nurse, an LPN because oprior to working at his office she had worked at a allergy, asthma, and immunology clinic.

    The only thing that concerned me is she seemed to not know for sure where to go from here, and I thought she was grasping at straws to redo a modified barium swallow, but maybe I'm wrong. It's does not reflect on her or her basic level of competency, because all of the people I've seen don't know for sure what to do to get the prednisone levels down.

    Still, it makes all the sense in the world to get the CAT scan done as I've never had a good picture of the lungs other than a few X-rays from over ten years ago.

    I'm also very thankful that I currently have a good GP.

    I don't know if they'll want to do more types of pulmonary function tests, but she thought for know just doing the CAT scan would be good and then she'll call me and tell me what to do after the results get in.

    She summarized the appointment by saying, "it looks like you and your allergist are doing a very good job of treating asthma. You do a good job of avoiding all possible triggers, and your medicines and action plan are very good. However, you've never had a general pulmonary workup, and I think it would be good given the amount of prednisone you take to make sure no other disease is present but not yet diagnosed." I agreed with her.

    So, the first step is the CAT scan, and we'll go from there.
    sgbl88 replied to amcate's response:
    It sounds like a good start. You may want to ask about a bronchoscooy as wellThat can find disease that will not show up on a CT. I just read your post about stat. I am a math teaher and I am well aware of how manypeople including older adults who don't under that. It sounds like you are in much better hands now. Your situation is exactly why I refuse to be a part of HMO's. Insuarance should not have that kind of authority on your care. 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]
    amcate replied to sgbl88's response:
    Thank you for the information on bronchoscopy. I do not know much about general pulmonary tests, only asthma related stuff.

    In terms of insurance, most people do not understand my situation. I don't just have lung problems. I also have a propensity toward cancer, I have a rare disease in which joints are destroyed, but it's not known to be autoimmune-they don't know the mechanism, I have orthopedic problems in my legs unrelated to that, and I forgot what else. I am 40 years old and single. I was working full time and traveling when I noticed a growth. I could not travel so I could get that addressed, so had to quit that job. Then, the joint disease was discovered. I was at the doctor's office so much that I didn't have the time to work full time. Therefore, getting insurance through the job was not an option. The surgery to correct joints had been completely destroyed took 24 months. COBRA only lasts for 18 months. So, I had no insurance for 6 months. No one else can cover me on their insurance. At the same time, I was dealing with cancer related issues and pulmonary issues. Before you jump in and say, "then you shouldn't have gone without insurance", what choice was there? I had to go to the doctor's, and the only way for insurance to be there was to work full time, which I couldn't do and also get treatment because I can't be in two places at once.

    If you are single, no one else can cover you on their insurance, so if you get sick, you lose your insurance through your employer, you are too young for Medicare and make too much for Medicaid.

    The only other option I had was state coverage insurance, which doesn't pay for much. However, if I again get insurance through an employer, I end up in the same boat as I was before-if problems come back, I lose insurance. State coverage insurance is limited in what it pays for, but it does pay for medicines and it does pay for basic healthcare.

    I have a choice-I can really good insurance which I will lose if I ever really needed to use, or I can have a basic package that it not tied into my employment and will be there if I were to get sick again.

    I don't qualify for disability.

    Bottom line-I don't have a choice, and going with the state HMO is the best option I have because single people who are under 65 never get seriously ill according to our current system.

    In terms of buying individual coverage-one disease by itself is financially catastrophic, how can I pay the premiums for a PPO when I made less than the medical bills by themselves for years?

    It's the best option I have right now.
    amcate replied to sgbl88's response:
    A more concise way of saying the same thing: If you are 35-40 years old with several serious health problems and are single you do not have the time to work full time. No one else can cover you on their insurance. Since you do not have the time to work full time, you can not get insurance through your employer. COBRA lasts 18 months, but the medical conditions may take more than 18 months to complete treatment for. You will not qualify for disability, you are too young for Medicare, and you will make too much for Medicaid. You will be unable to pay for individual health insurance because you will financially depleted.

    To say that you would refuse to be part of the HMO in my situation is to say that you would go without insurance at all as opposed to taking part in my state's program designed to stop the gap by providing a basic health insurance program to people in my situation. You would end up going without any insurance at all.
    amcate replied to sgbl88's response:
    This is a general update. The pulmonology office took a few weeks to clarify with insurance that they will pay for the CT scan. It is scheduled for tomorrow, as insurance gave the okay. Wish me luck!

    I also just received results from alpha-1 testing in writing in the mail, and it said MZ carrier, meaning the protein that protects the lungs should be mildly deficent. Even though I gave them a second blood sample, what they sent still says they were unable to get an actual level of the protein. The pulmonologist and lab both said to replace it when it only mildly deficient is not recommended due to burden of treatment for the patient and the cost. Still, I guess it makes sense-my parents were heavy smokers-sister said once that there was a permanent cloud of smoke and God help you if you grew over three feet tall because you would pass out from all the second hand smoke in our home growing up. Plus, the city was highly polluted. That in combination with having low levels of a protein that is suppose to protect your lungs in those situations could have resulted in some type of pulmonary disease.

    Wish me luck for tomorrow!
    amcate replied to sgbl88's response:
    This is another update. The CT scan happened on the first really bad day of the year we got smoke from the fires. I was okay, then when I got into the CT room, for some reason the coughing started. It's usually hard to tell if it's asthma or not at that point-attacks normally start with coughing, but not all coughing is the beginning of an attack. So, I took the MDI 2 puffs to be safe as they were going to put me in the machine. I asked the technician if I should take more to be sure, and he said it was up to me, but if I did have to cough, to do so when the machine said "breathe", because the machine was then going to say, "take a deep breath and hold".

    I got in the machine, and I managed okay, with coughing when it said to breath and taking a deep breath and holding when it said. Still, I didn't have the time to take a huge deep breath, but at least I could hold it without spasming uncontrollably.

    They had a respiratory therapist there anyway. They said the pictures were acceptable, and in fact probably got pictures of what the lungs look like at the very beginning of an attack!

    The adventures of health care .
    sgbl88 replied to amcate's response:
    It sounds like the diagnostic process is moving along. It can take so long and be very frustrating. Hang in there. Once you have the right diagnosis, life can be much better.

    I would recommend doing a lot of research yourself. I brought neutrophilic asthma to my doctors. It was a part of my puzzle which my doctors missed because they were not aware of my history with mycoplasma pneumonea. My allergist had mentioned aspirin exacerbated respiratory disease and doing aspirin desensitization some time down the road. After I researched that, I pushed to have it done quickly. My history so mirrored the timeline for AERD that I thought it was a distinct possibility. One week after treatment I was so much better. It has be year since treatment and I haven't been really sick since then. That was the major issue for me.

    I was sure to read all lab and test reports myself and ask about them. My original CT said that I had minor bronchiecstasis. My allergist requested a second look at that to clarify the report. The second look cleared me of that. If I did have bronchiecstasis, that would have meant an entirely different treatment plan. I had to keep bringing that report up though until it was dealt with.

    I had a sputum sample that showed two fungii present. One was "normal". The second had to be identified by state health - obviously not something that is normally seen. My allergist wasn't concerned about it, but my GP was very concerned about it and was referring me to a infectious disease specialist. My allergist treated the infection then. It was another part of my puzzle.

    I share this to encourage you to take a very active part in your care. If one doctor doesn't give you a solid answer to questions regarding something in your reports, don't drop it. Talk to all your doctors about things on your reports to get a full picture and broader view of your situation. I also took copies of all reports to my different doctors so that they could read them. It is a lot of work, but in the end it really is worth it to get the best care possible.

    Take care and
    God bless.
    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]
    amcate replied to sgbl88's response:

    Thank you for your encouragement. You represent Christ well. Thank you also for sharing your story.

    I have gotten to the point where I'm learning there are things I can control and things I can't, so I just do the best I can with what I've got.

    I think over the years health care has changed to where a patient has to take an active role. At the same time, sometimes I get tired of a health care system, and those within it, who consistently put money before human welfare. This is not to say that everyone in the healthcare system does this, but some practitioners do. This is why I like my PCP. He really is a good doctor, and I get the sense that he does care.

    The question I struggle with is at what point does a person accept that there is no answer? That's why I wanted to go to National Jewish. I knew that if they didn't know, probably no one would, and so it could all end.

    But, for now, I just do things one step at a time, slowly and gradually, because I prefer to go slow right now. As it is, I only have so much energy, and it's easier energy wise. For some unknown reason, I've not as much overall energy as I did before. It's one reason why the pulmonary PA thought I might have a deteriorating condition, as she said that is not normal with asthma.

    I'm glad you found an answer for your condition.
    amcate replied to sgbl88's response:
    I realize that my last post may have been misleading. The pulmonology PA never said I don't have asthma, and in fact seemed to think that it was highly likely I do indeed have asthma. However, she was saying the fact that my overall level of energy has deteriorated gradually through the years, more than would be expected for someone my age, points to a possible secondary pulmonology disease. It's a situation of, "just because you have asthma doesn't mean you don't also have something else." She was just saying that if lungs only have asthma, then you don't see a chronic long term deterioration, like you do with emphysema.

    Anyway, thanks again for sharing your experience and encouragement, Sonya.
    amcate replied to sgbl88's response:
    I also wanted to add that I've been going for second, third, fourth opinions and seeing other specialists to figure things out for twelve years now. It's one reason I had the surgery when they found out my body attacked it's own joints and destroyed some of them since then part of the airway was structurally obstructed.

    This is the first time, though, anyone sent me to pulmonology. I don't know very much about their diseases or tests, so your information is valuable to me.

    I live in a rural health care system, so there aren't many doctors and the ones here are good at picking up "in the box" diseases, but not "out of the box" problems. Unfortunately, the bottom line is that insurance values human life at less than $15,000, the cost of National Jewish. On the other hand, I only pay $3 for each medicine each month, and once they approve something, I don't pay anything. So, they are good in that the CT scan didn't cost me anything. My situation is complicated, but bottom line is that it's this insurance or no insurance at all, so I am thankful the state has the program. Reality is that the state is a poor state, though. Still, it logically makes no sense since prednisone gives you diabetes, then they would have to pay for diabetes which in the long term would be more expensive.

    Anyway, this way the insurance is paying for all the preliminary stuff, like CT scan, then maybe National Jewish will be less expensive since the preliminary stuff would already be done. We'll see how it goes.

    All I know is I just want to fully live as long as I'm alive.

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