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Pulmonologist Apt. Today
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bpcookie posted:
Hello my fellow wheezers and sneezers, I havent posted on here for a few months and now Im bbbbbaaaaaccccckkkkk, like a bad penny.

I see my Pulmonologist today for the second time. First time was back in January and I was not impressed with this guy at all. He looked over some X-rays and some blood tests that my family Dr. had sent him, but while I was in the office, he didnt even touch me. He said he wanted me to get a blood test done to find out if my asthma is allergy related. Thats all he did. He didnt even put me on any medication to help me. Mean while Im making trips to my family Dr., ER and Urgent Care because of asthma attacks.

I finally got the blood test that he ordered done, BUT, the place who did the blood test messed up and said I needed to come back in and have it done again. ggggrrrrrr uuuggghhh. So when I see the Pulmonologist today, he is not gonna be happy that I dont have the test results yet.

Im going to have to be very insistent today and tell this Dr. that I need to be put on a daily med. that will help me. I can not live like this. Im on Singular, Symbacort, Pro air inhaler, breathing treatments every 2 to 4 hours, benadryl, and Musinex. My family Dr.s will put me on steroids which seem to knock it out, but not for long.

I do not like this Dr. at all, but he is supposed to be one of the best. My family Dr. asked me to give him one last try. But I think he has been doing this job for sooooooo long that he has forgotten that each patient is different. Each person needs different meds. I believe that he may know a lot about Asthma, but not alot about individual ppl, if that makes sense. I will have to crack the whip on this guy and if he doesnt give me some kind of prescription, he is fired!!!!

Is there some other meds that you guys have tried, that seem to work for you?

Thanks for any info you can give me.
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Aqua14 responded:
He didn't touch you? Didn't listen to your breathing? Weird. Did he have you perform spirometry (lung function test)?

First of all, allergy blood testing is not the most sensitive or specific or reliable. Really you should go to an allergist to get allergy skin tests performed and not mess around with the blood test again. (If the lab that analyzed the blood test "messed up," make sure they eat the charge so you and your insurer don't have to pay for their mistake.)

Second, it seems to me that there are other inhaled steroids that could be added on to give you additional control. What concentration of Symbicort are you on, and how many times a day do you take it? Ask the pulmo if the dosage (or concentration) of your Symbicort can be increased or if he should add on an additional inhaled steroid or other asthma med, and if not, why not.

Good luck in finding a better doctor than this one seems to be. Judy
 
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coughy16 responded:
Something that you can do yourself that will help the doctors help you is to keep a diary, if you haven't tried that yet. This will help you & the drs figure out what is setting your asthma off. When you get symptoms, record where you were/what you were doing before the attack came on. Also I found that it helped the dr to understand the extent of my symptoms if I put that in the journal. For example: " 8pm, violent coughing spell that lasted 4 minutes, during which I could hardly catch a breath. continued having these coughing spells every 10 minutes for the next 2 hours, used rescue inhaler and coughing stopped for 3 hours" I have found that doctors can't imagine what your symptoms are like unless you are extremely specific. I had so much trouble being diagnosed, and I think part of it was that I didn't want to sound hysterical so I minimized my symptoms. Hope your appt went well
 
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bpcookie replied to Aqua14's response:
Hello Aqua, Nope, to all three questions. The only reason Im going back to him is because my Dr. asked me to give him one last try.

I most def. with make the company who messed up on my blood test, pay for it. Ive already spent enough money on my asthma probs this year.

The Symbicort is 160/4.5 I take two puffs twice daily.

Thanks for your reply.
 
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bpcookie replied to coughy16's response:
Coughy, ooooooohhhhhh what a fantastic idea. Brilliant. I think my Dr.s would be pretty shocked to find out how bad my asthma really is and your suggestion is the perfect way for them to know.

Thank you for the reply. Im gonna start doing a diary right now.
 
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Aqua14 replied to bpcookie's response:
That is just really weird that a lung doctor wouldn't listen to your lungs.

Ok, so you're at the highest concentration and dosage of Symbicort so you couldn't take more. Another idea to discuss with the dr. is whether you could/should move to another combination medication like Advair or Dulera (which is new). We're all different and sometimes we do better on one med than another. It's pretty much trial and error.

I used to be on Asmanex Foradil (which is essentially what Dulera is, but they didn't have it combined back then) but then moved to Symbicort and saw a big increase in my lung function.

Good luck. Judy
 
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bpcookie replied to Aqua14's response:
Hello again Judy, I just got back from the Pulmonologist and he told me that Im on all the right meds. He wants me to get the blood test done to test for allergies that can cause asthma so that he can give me that injection (cant remember the name). I asked him what Im supposed to do right now about my exercise induced asthma and he said he wants to treat the allergy one first, then the other. He doesnt want to put me on a pill form steroid daily because of the side effects, but he will put me on a pill pack IF and when I start to have difficulties. uuuggghhhh. Same ole same ole. He said thats all that they can do. Im not a Dr. so I dont know what to think or believe.
 
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sgbl88 responded:
I can SO relate to your visit with this doctor. My first pulmo did a complete PFT which took about 1/2 hour. That was good, but I think it was standard practice for the office. She had her stuff picked up and was headed out the door when she said, "Oh, I guess I whould listen to your lungs for a baseline." Quick listen, "You sound like an asthmatic."

I totally felt like I was a nuisance to her. The only thing I said that interested her at all was asking about Neutrophilic Asthma and telling her that I have had micoplasma at least twice a year for 13 years.

Second apointment with her - I was just getting over a cold. My peak flow that day was 20 ml/m higher than when I saw her the first time, so she declared me healed. Mind you that I told her what my peak flow what that day was, and that I had been up 100 ml/m and was back down 80 ml/m since the last time I saw her. I was coughing goo up in her pressence and she didn't listen to my lungs at all. When I told my GP that, he said, "That is like a cardiologist not listening to your heart."

All that added up to one FIRED pulmo. Remember that you hire your doctors to care for you. If they are not listening to you, don't seem to care about you, or fail to do their job in anyway - FIRE them.

So, you are not alone. That pulmo was my allergist's first choice. She only likes to work with three pulmos in the area. If that was her first choice, I would hate to find out what her other choices are like.

Some thoughts.
I assume that the blood work was an IgE test. Your pulmo may be thinking about Xolair for you. So, not listening to your lungs is bad, but try to get him to tell you what he is thinking and planning.

Symbicort may not be the best med for you. Have you tired Advair or Dulera? I nose dive on Symbicort, but Advair and Dulera work well for me. They come in Hfa version.

Do you use a spacer with your medication? That can make a big difference in how much medication actually makes it to your lungs and how effective it is. I highly recommend that you try a spacer. It will teach you the correct technique.

You are currently using Benadryl. Do you have a problem with other antihistamines? Benadryl is pretty mild. There are much more effective antihistamines available. Try Zyrtec or Allegra.

You may also want to try a sinus rinse.

Good luck and keep us posted.
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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bpcookie replied to sgbl88's response:
Hello Sonya, The entire thing is just so frustrating. Im not a Dr. so I cant tell if this guy knows what he is talking about or not. At least this time he listened to my chest and said "you sound clear". I may sound clear and my oxigen level may be good, but I feel as though I cant breath, or I cant catch my breath, or take a deep breath, or cough up whats in my lungs. I asked a bunch of questions, but it came out the same as it did the first time I saw him. He just told me to get the blood test for allergies, then he would treat the allergy related asthma and after that, then treat the exercises related asthma. Although I dont know why he cant treat me for the exercise related asthma now. *shrug*. So I left his office pretty much as confused and frustrated as when I entered.

He is talking about the Xolair injections and I hope to God that my ins. will pay for it. I already know that my allergies cause my asthma.

Ive tried Advair before and it didnt work. I told the Pulmo. today that the Symbicort wasnt working, but he insisted that it was and if I wasnt on it, my asthma would be worse. *shrug*.

Im not sure what a spacer is. Could you explain?

Im using Benadryl and I have tried so many other allergy meds, Benadryl seems to dry up my nose better than the rest. I have terrible Post Nasal Drip too and that adds to the mucus in my lungs. Lots of coughing and not being able to cough it up cause its so thick. Every single Dr. I have seen, tells me to use Musinex. Do you know of any expectorant that is a prescription?

I am on the look out for a new pulmonologist. I figure it cant hurt to have a second opinion.

Thanks so much for taking your time to reply and read my LONG post.
 
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coughy16 replied to bpcookie's response:
So the blood test was for ige levels for the xolair? Does the dr even know that you have allergies? Have you been tested to see if/what you are allergic to? It seems kind of extreme to jump right to xolair, many ins companies won't approve that unless all other options have been exhausted. My experience has been that they skin test to determine what if anything you are allergic to, & work first on trying to resolve that thru avoidance, medication or immunotherapy, then move on to xolair if allergies are a trigger & nothing else works. My asthma is mainly triggered by my allergies to grasses, trees, molds & cats. So I avoid cats, take shots for the other 3, and have seen my asthma go from totally out of control & debilitating to a mainly minor annoyance here & there.

Have you talked to the dr who referred you to the pulmo about your experience there? For me, one of the most important things about getting my asthma under control was a great relationship with the allergist who was treating me. I would go in sometimes with 3 pages of questions for him, & he would always patiently answer them all. I could call or email him at anytime & he would always answer me, & he made me feel that the 2 of us were working as a team to get control. When something new needed to be tried, he presented me with options, we discussed them & then made a decision together as to what to try next. That helped me so much. Have you thought about seeing an allergist if your asthma might be allergy induced, as opposed to this pulmo that you don't really feel at ease with? Best of luck to you!
 
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sgbl88 replied to bpcookie's response:
I am with coughy16. If you have not had allergy testing and been on allergy shots for about 2 years, the insurance won't consider Xolair (unless you did not tolerate the shots). Also, an insurance company will want to know that you have tried differenct antihistamines and they didn't work. If your doc is really good at writing the requests for those things, they can still get them aproved, but the doc has to WORK at it. My doc got a 9 year old on Xolair when it says for 12 and up. So, a persistant doc can make a huge difference.

I still think working with an allergist is a great idea because they would have other options for drying the PND better. Various nasal spray options may be right for you. Treating allergies is essential if you have allergic asthma and an allergist is the best person to do that.

Many times if the allergic component of asthma is well controlled, the lungs become less reactive. Then exercise induced asthma may not be a problem anymore.

A spacer is a plastic tube with a mouth piece and the other end has a rubber (or silicone) fitting for the inhaler to go into. It is basically a holding chamber that allows for maximum effectiveness of the medication. The spacer will teach you the propper rate of inhalation because if you inhale to quickly it squawks at you. You want to be on the fine line of silence and very quiet sound. Ask your pharmacist about it.

I don't know of a prescription expectorant. Drinking TONS of water is helpful. I always have a 32 oz bottle of water with me and it gets refilled about 3 - 4 times a day. I have been told that b5 is an expectorant, but I haven't seen any research to support that.

Did you ask the pulmo about Dulera? That is a relatively new combination med that combines Asmanex and Foradil, if I remember correctly. It has the same type of ingrediants as Advair and Symbicort. A pulmo may not know about it yet. Personally, I find that Advair works, but Dulera seems to be working MUCH better for me. Some times it isn't a matter of is the med working or not, but how well it is working and could another one work better. It would be worth talking over with your doctor.

I would look for an allergist if I were you. Then, if needed find a pulmo. Check out the physician referral page at www.aaaai.org That is a great place to start a search for an allergist if your dr isn't referring you to one.

Feel better.
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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bpcookie replied to coughy16's response:
I had a blood test done, but the place that did the test messed up. So I have to go in once again and have it done. If they test results come back positive and my ins. will pay for it, then he wants to start those Xolair injections right away.

I left a msg. for my primary care Dr. and asked for a referral to an allergist and a different Pulmo. I want to be treated for my allergies and I want to see a different Pulmo. because I just dont like the one that I have. He isnt even willing to treat my exercise related asthma, until he treats the allergy related asthma. My opninion is, thats totally wrong. I dont know why he cant treat the exercise related asthma. I just dont trust or like this Dr. much.

I wish I had your Dr. A good Dr. is so very hard to find. Once again, thank you for your kind reply.
 
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bpcookie replied to sgbl88's response:
Hello Sonya, yup, I called and asked my Dr. for a referral to an allergist and also asked for a referral to see a different Pulmo. I would really like to fire this one. I dont like him at all.

Wow, the spacer sounds interesting. I dont know why my Dr.'s never suggested it before.

I didnt get a chance to ask my Pulmo. about other meds because he told me that all the meds that I was on now, are what I needed to be on. This Dr., in my opinion, is a lazy whacko. He kinda looked annoyed with me because I brought in all my meds, laid them down on the table and said "none of these work". He insisted that they do work, that I would be more ill if I wasnt on those meds. Then I had a piece of paper will all kinds of info. and question on it and I went over most of it with him and once again he kinda brushed it all away.

Im gonna see an allergist and a different pulmo. I will go to as many pulmo's as needed, in order for me to find a great one who is willing to help and work with me, instead of against me. What a pain in the butt. lol

Thank you so very much for your continued help.
 
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coughy16 replied to bpcookie's response:
Glad to hear you asked for a referral! You really may find that you won't need both an allergist & a pulmo. Allergists are well versed in handling asthma because they go hand in hand so often. I have never seen a pulmo, because my allergist is doing a great job of taking care of me. I have heard other posters say that many pulmos prefer to treat patients with more serious lung problems (not that asthma is not serious, but things like copd, cancer, etc) I really hope that you can find a doctor that will work with you like mine did. I honestly don't think that I could have gotten thru those first couple of years trying to get my asthma under control with a less understanding dr. Whenever I was discouraged, he refused to let me throw in the towel, & kept stressing that I would get better, and that once I did, I would be able to do whatever I wanted again. He was right! I wish the same for you!
 
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sgbl88 replied to coughy16's response:
Again, I agree with coughy16. I doubt that you will need both an allergist and a pulmo. I went to that one pulmo I told you about twice and another one once. Then he became a hospitalist so I am back to my allergist only. I really believe that she is about to finally get every thing figured out and treated effectively.

One thing you may want to ask your allergist about when you get to see them is Aspirin Exacerbated Respiratory Disease (AERD). Just an idea. About 20% of all asthmatics have it, but it is highly under diagnosed. Do you ever take an NSAID? If you do, do have issues start up to 3 hours later?

Just some thoughts.

Take care,
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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