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Thread: Grrrr!! Medical Mistakes

  1. #11
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    To be honest I have read this and I have no idea what the h### is wrong with any of you ...just like the drs. !
    Jacquie, it is good to know you don't have copd. I am told i do along with empasema (sp ?) I get sob breathe sometimes but he doesn't seem to be as bad as you are. I think the ent would be the one to handle it better since it sounds like your pulmy doesn't have a clue. Did he even apolagize to you for making the mistake about the copd. I'm sure not. Have you ever had a ct scan of the lungs to see if your have lung involvement. If you mentioned it before and I missed it ..sorry.Just trying to figure this out. The pft test I have done in the past are pretty simular,but once I was put in a glass enclosure and told when to take deep breathes and then breathe out as long and hard as I could ,then they gave me albuteral to inhale then repeated the tests after that I had to walk a fast as I could for I believe 5 mins. up and down the hall in the hosp being timed on how far I could go.My tests came back good. Do you live around alot of pollen? That could raise havek on your sinuses ?
    I don't know..wish I could help. Hope you feel better soon and that the antibiotic you are going to try to get on helps.
    Life isn't about how you survive the storm, but how to dance in the rain !

  2. #12
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    Hi Debra! Thanks for your reply. You guessed right. No apology from the pulmy...just a terse "I will take care of it". Oh well. Other than that, he has been very funny, thorough and gives me lots of time.

    I had forgotten. I also did the glass enclosure thing and the walk around the hallway etc. It was back when I was just getting started, before I got this bad. I have had multiple CTs and xrays, which is where the bronchiectasis diagnosis came from. We ARE in a high pollen area, though my allergy testing showed an allergy to only grasses and goosefoot. BUT...the only good month I have had since September was October, which I spent in a dry area of California. I wish moving were an option...but financially and family-wise, that is not an option.

    I will let everyone know what my ENT has to offer in this big mystery! You guys get me through this!!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  3. #13
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    Yes, although I would have ended up at the ENT for a biopsy anyway, because I had just discovered my saddle nose, which was sort of a dead give-away that I had Wegs. I'm glad the jerk was gone and I could handle it in my own way. The ENT got me right in when he heard what was going on and stayed late that evening to do the biopsy. I'm wondering if the pulmy saw my saddle nose before I did and thought I was a druggie, because the condition he sent me to the hospital to check for was endocarditis, something that IV drug users get, and he had asked me right there in his office if I'd ever done that sort of thing. The answer was no. What a jerk. And he's still my WG doc by default until I find someone better.
    Anne, dx'ed April 2011

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    OMG! UNbelievable!! Hope you find someone you like soon!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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    Well, to give him a break, he didn't know me that well, and I'm only guessing about the saddle nose, as the people in the hospital didn't mention it either, and I don't know when it appeared. And he is a lung expert so does know about these things and only had a chest xray to go on, which didn't show much... in fact the radiologist hadn't seen anything and neither did he until he took a second look, and then I'm not sure what he saw, but he was right that the lung CT scan would show a lot more. As for the endocarditis, I assume it is something that not only IV users get, so can't assume he didn't believe me when I said I hadn't used IV drugs. But I do think it was crappy of him not to take the doc at the hospital seriously, who suspected Wegs. Part of why he doubted Wegs was that my ANCA reading was very low, and he didn't know that a Weggie can have a low or negative reading. I had already learned that on the forum and educated him. True, if I hadn't gotten a saddle nose and a swollen parotid gland, I wouldn't have gone to the ENT for a biopsy while he was gone, and he wouldn't have sent me for one, at least not right away. So what did he think those lesions on the CT scan were, anyway? I was sick, so I may be remembering it wrong. But anyway, you are right, it's a wonder we get diagnosed, and I do need a new doc. It's just that it's like shooting in the dark around here, knowing who there is locally who would be qualified to treat WG. But I do have some names to investigate and will keep asking around.
    Anne, dx'ed April 2011

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    Hi Jacquie.
    if you have Bronchiectasis please look at that list that wrote to Phil (he has that dx as well) on his thread. maybe you can find somthing useful. it is sure related to sob and infections.
    my list is at the bottom of that page. (page 249)

    http://www.wegeners-granulomatosis.c...ggren-249.html
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  7. #17
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    There are different types of PFT's. The one you're talking about Jacquie, with the candles is measuring how much air you take in versus how much is getting back out. That's the spirometry test. Then there is a diffusion test where you inhale a little harmless gas that tells them how well your lungs move the air to your blood stream. The other one is a lung volume test that is done in a little sealed chamber that looks like a telephone booth. They regulate the air pressure to see what your lung volume is. These are the three that I've done in the past. I think the spirometry is the most widely done, but the other two are useful and tell them different things. I found this useful, it's from the Cleveland Clinic. http://www.ccjm.org/content/70/10/866.full.pdf

    Jacquie instead of taking pred for several weeks(which I know you don't want to do) maybe try the pred dose pak that is only one week to just kick start the healing process. I would also try the theophylline as it certainly can't hurt. I use Theo Dur 24 which is a brand name. I only have to take two a day because it is extended release.

    Anne I get that mess hung up around my vocal cords too. Doesn't want to move up or down. That's when i find the mucinex works well to thin it and gets it to move.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


  8. #18
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    OK. Thanks Alysia, I have my evening reading all set!!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  9. #19
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    I've done the candles and the phone booth. Not the gas thing yet. I am interested in trying the thyopyline. I seemy allergist soon to discuss that. The full dose of pred usually takes a week or more to take effect. Don't know if the dose pak would work. Will ask on Friday when I see the ENT. Right now I am in the mood for firing both the pulmy and the ENT. My husband thinks they are just fine...but I am beginning to doubt that. I love my allergist...but then she is the one who referred me to these guys, so guess i shall perservere..

    I will check out the link tonight. I have a lot of research to do. I called my ENT doc today about prednisone. The nurse said my problems sound more like I should be calling my pulmy. The pulmy told me the problem was all sinus, and I need to see the ENT. So, I don't have much hope of getting help till I actually go in to the ent for my regular appt this Friday. I insisted that the nurse tell the ent doctor...but I don,t trust her. It is 4:30 now and I have not heard back. The office staff there is not very good. I DO like the doctor when I eventually get to see him.

    Thanks for all the good suggestions for me to research and think about.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  10. #20
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    I have had two PFT exams over the years. My last one in Feb. I think they were pleased to see some minor improvement, which I thought was impossible. Any way, I smoked cigarettes for almost 40 years and my chart says "never smoked". I left it that way.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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