Grrrr!! Medical Mistakes

[BookNut]

My illness has taken a downturn recently, as I whined about in my post http://www.wegeners-granulomatosis.c...scouraged.html

Well...today I thought it must all be messing with my brain. I have been REALLY sick for over a week now. Very SOB. When I saw my primary care, she asked me what my specialist diagnoses were. I told her the multitude of them, including COPD. She did some research and suggested I take Zythromax 3times a week, as it has been proven to reduce COPD exacerbations.

So today I went for my regular appointment with my pulmonologist. My pulmy said emphatically. "You do NOT have COPD. You have never smoked, and your lung function tests are normal. It is all sinus related.". i told him I had seen the diagnosis on some official paperwork from one of my doctors. I thought I must be going crazy.

As soon as I got home, I looked on my online chart for my primary doctor and my allergist. Nothing there. So, I went to the online chart of the pulmonologist. You guessed it....there it was. Big as life. COPD. I remember looking at it when it first appeared there, and feeling startled.....but a little relieved that at least I had a diagnosis. Now I guess I don't have that one after all. Glad to not have it of course.

I emailed him immediately to point out that the diagnosis is right there in my online chart. He said he would fix it. But, he made me feel a little stupid and like I was overreacting when I was in the office.

Just goes to show....you have to QUESTION EVERYTHING!!!

[Alysia]

congrat for not having COPD. good news

[windchime]

Glad you don't have COPD Jacquie. Whew what a relief that must be. I've noticed that my pulmy puts things in my chart that he never talked to me about including different diagnoses. so it's important to read charts after visits with docs no matter how long you've been seeing them.

With all that being said I've never heard of sinus issues causing SOB. Do you know how they are related other than the stuff draining down into your lungs which would cause congestion, but not necessarily SOB.

Not to scare you Jacquie, but have they looked at your heart as a possible cause of the SOB. There are several different things that can cause it.

Again glad you don't have COPD and I hope the Zithromax works for you.

[murmur]

Don't let him make you feel stupid! You have every right to question your own health. Doctors aren't always right. You are the best judgement of your own health.

[BookNut]

Thanks everone!! Alysia, it is definitely a relief to not have COPD. I just wish i could put a stop to the endless rounds of infections which cause coughing and shortness of breath, and yet another round of prednisone. But you guys give me the encouragement to keep looking for a solution! And Cindy Windchime....I have a cardiologist. She says my heart is doing fine. I went to her because I have occasional heart palpitations. Next time I see her I will ask about the SOB. I think the situation is that the chronic sinusitis aggravates the asthma which then brings on the SOB when it all gets bad enough. Nd Murmur...Thanks for the encouraging word!!

[annekat]

Cindy, I do get SOB from my sinus issues, the stuff collects in my windpipe, and it doesn't take very much to make me start to feel SOB until it can be coughed up, and then the feeling goes away. I've had asthma in my life before, and this can feel just like it until the stuff gets cleared out of there.

Jacquie, I'm glad you don't have COPD. It sounds more like Wegs sinus involvement affecting your breathing, but then I know you also don't have Wegs! So I'm not sure what your pulmy thinks he's doing for you if it's all sinus and not lung related and he says your breathing function is fine. And how can he say it is fine, when you are so SOB? Of course I do know you have some other diagnoses such as bronchiectasis, which I'd think would cause quite a bit of SOB. So why is he saying it's all sinus related, then? Sometimes I think doctors just speak in a bunch of riddles.

[windchime]

Anne and Jacquie thanks for explaining the SOB and sinus thing. Couldn't figure it out on my own. Anne you bring up a good point regarding the PFT. Usually if you have asthma, as explained to me, it shows up on a PFT. Is this incorrect? Learning a lot here.

Jacquie so glad you have a cardiologist and all is ok, but a good idea to mention the SOB to them. Thanks for your patience and the explanations...

[BookNut]

I will tell you that I am REALLY confused. My allergist and PCP were the first to list asthma as a condition for me. But my allergist keeps referring it to as my "asthma-like" disease. She referred me to the pulmy and he is the one who diagnosed the bronciectasis. He also lists asthma and chronic sinusitis on my record. My oxygen levels are good...though they were a bit down at this appt. My PFT's are generally good, although it is a real struggle to perform the test....leaving me in a paroxysm of coughing. I ALWAYS have the windpipe obstruction that Anne describes. I mean always. 24/7/365. When I am doing well, regular breathing is not a problem. If I breathe deeply, anyone in the room can hear the rhonchorus sound that is always there to a degree. When I have one of my recurrent sinus infections, then the wheezing sound is audible with regular breathing. At that point, albuterol will help. But eventually it all devolves and the mucus that Anne describes seems to solidify, my cough becomes non-productive, and the SOB starts. This all used to happen 2-3 times per year. It has markedly worsened, with 6 downturns in the past 9 months. Since they generally last at least three weeks, that does not leave me a lot of good time. My research does tell me that it is very possible to have good oxygen levels and still be SOB....and often people in the situation are dismissed as having nothing wrong with them...mostly by nurses who don't understand. It is all very complicated. My ENT is very reluctant to do surgery. I think he finds the long term success rate to be unconvincing. I certainly don't want to have surgery, unless my doctor is enthusiastic about it.

I see the ENT on Friday. He will probably want me to go on pred and an antibiotic. I think I will ask to try just the antibiotic this time. I am not taking the antibiotic that my PCP prescribed because it was based on a COPD diagnosis. I also will be contacting my allergist about starting theophylline...and old time remedy for asthma that my husband has used successfully for decades.

I also had elevated white blood cells and some other markers that indicate a battle against infection, and an under-active immune system. So...maybe that is an area to look at. the numbers were only slightly out of the normal range.

Well....I did not mean to put your teeth to sleep,with all my health details. But I so appreciate hearing ideas from all over. I keep thinking there must be an answer somewhere. THANK YOU SO MUCH. I appreciate your ongoing concern and interest. Love you guys!!!

[annekat]

Well, Cindy and Jacquie, I'm confused, too, about your issues and mine, and nothing my docs say ever seems to make me any less confused. I have never understood the PFT, and the only one I've gotten is very primitive looking, involving a cardboard tube like thing that I breathe in through and then blow out, at which point it is likely that I'll cough. I don't know if the ones you are getting are more sophisticated, but if they are supposed to measuring oxygen levels, as it sounds like you are saying, then I don't get why they would leave someone coughing and gasping for breath just because the measured oxygen level is OK. Maybe with true asthma it actually isn't. But what is true asthma? I was sent to this pulmy by my ENT, who thought I had asthma, even though I knew and told him that it was mucus caught around my vocal cords, at the time, all pre-WG dx. But it sounded like asthma to him. I had had asthma before and felt it could be partly that, as I guess the pulmy did too, and I was just kept on steroid inhalers and albuterol. Eventually the pulmy didn't think there was more he could do for me and "cut me loose". Well, then I went back to him later because I thought I had pneumonia, which turned out to be Wegs. He put me in the hospital overnight for a CT scan and other tests, suspecting some entirely different condition. The doc there suspected Wegs, which was confirmed by my ENT's biopsy while the pulmy was on vacation. When he got back, he still didn't believe I had Wegs, and thought my breathing seemed OK, at that moment while I was in his office, until I told him about the biopsy and he called the ENT to confirm it, as the results had just come in. Since my ENT doesn't treat Wegs, the pulmy has become my WG doc by default. So I'm getting the right meds, but otherwise, both he and the ENT say different things from one time to the next about what is going on in my sinuses or whatever.... it is just so frustrating, they are so rushed and have so little time to really talk about anything. So, I hope I didn't put YOUR teeth to sleep, just needed to vent, and your story about how hard it is to get real information about your condition got me going! We are all in this together even if we don't all have Wegs! Best of luck, Jacquie, in getting the infection whupped, and I hope things will improve greatly after that.

[BookNut]

Anne...it all makes me wonder how anyone gets a correct diagnosis! The oxygen level I am referring to is from the little clip they put on the end of your finger. Mine is usually around 96, which is quite good. It was 93 the other day. Still ok. The PFT I referred to might be called a spirometry test. Not sure. It involves looking at a screen with pictures of lit candles. I am then instructed to breathe out deeply, then breathe in and blow into a tube to extinguish as many candles as possible. I usually manage to put most of them out, in spite of coughing like crazy afterwards.

P.S. It sure was a lucky thing your regular doctor went on vacation when he did!!