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Thread: First visit to Cleveland Clinic

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    Default First visit to Cleveland Clinic

    Interesting visit today with Dr. Daniel Culver, a pulmonologist at the Cleveland Clinic. I forgot to follow up with a why question, but the first thing he asked me is if I was a premature baby. I was not....but we got talking other things before I remembered to ask about it. Anyway...he ordered a chest CT and a methacholine challenge test to solidify the diagnosis of asthma. He is also talking another ENT referral referral. It would be my third....so I am not sure that will be productive...but I will go along with it. He is also talking perhaps Xolair, which scares me a little as it seems to have a higher than usual incidence of anaphylactic shock.

    Also, I have been MUCH better since starting on 500 mg of clarithromycin three times per week. The mucous production is down at least by 75%. For months I have waken up every morning feeling as if I have been a punching bag for Mike tyson all night. For the month I've been on clarithromycin, I feel so much better. I still have my 24/7/365 wheeze.....but that is livable since I am only aware of it if i take a deep,breath. My shortness of breath has also improved ... thought it is not where I want it. I have a SOB guage that works pretty well. From Least intrusive to most intrusive, it goes like this:
    4. Shopping Mall (Hard to walk from one end of shopping mall to the other)
    3. Supermarket (hard to walk from one side of supermarket to the other.)
    2. House ( hard to walk from one side of house to the other)
    1. Chair (SOB while sitting still in my chair)

    up till I started the long term antibiotic, I was at level 2 most of the time, and level 1 some of the time. Now I am at level 4, but really want to get back to being able to walking at LEAST a mile a day, and maybe some day getting back to my 4 mile walks.

    So I have my tests next week and he will call me to talk about the results and make a plan.

    I have this forum to thanks for recommending the Cleveland Clinic, and Dr. Daniel Culver. I am hoping we will find a solution that will work for me. I can live with the wheeze if I can just get rid of the shortness of breath!

    I will post again when I find out more.
    Last edited by BookNut; 08-20-2014 at 01:24 PM.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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    This is good news. Its great to hear that you are feeling such improvement and it sounds like you have good new doctor and are making progress- yay!!

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    Glad the appointment went well for you. I hope you are feeling better soon.
    ~ Bob

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    Good to hear something came out of this appointment, Jacquie, and that you'll be seeing Dr. Culver again. So glad to hear that you won't get out of breath unless you go to the shopping mall, or something equivalent. I'm hoping this doc will make things more clear as to what exactly is going on and get you on a plan that will further improve things. I don't know what Xolair is but will look it up. Interesting that the antibiotic has helped so much. That seems to imply an infection of some sort? Here's to being able to take your 4 mile walks again.
    Anne, dx'ed April 2011

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    That's a great report Jacquie. I'm so glad that you got to go to the Cleveland Clinic.

    How was the stay with your daughter and more importantly, how is the new grandchild?
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Quote Originally Posted by mishb View Post
    That's a great report Jacquie. I'm so glad that you got to go to the Cleveland Clinic.

    How was the stay with your daughter and more importantly, how is the new grandchild?
    Both are doing very well. Baby has stretched her sleep time to a little over 5 hours at night which is a bonus. She has mostly gone 4 hours, so is really a good baby. We are having a blast with her. Alas! Things have not gone as well with my husband. He fell a week ago and broke his collarbone. The Urgent Care folks were nice - but incompetent. They did not give him any pain meds, and they gave him a totally wrong type of brace. We were finally able to get him to an orthopedist and he is not in an immobilizing brace. Bummer. And his dominant hand of course. I just ordered him 2 pairs of elastic waist pants so he can get them up and down easily. Hope they fit! Good thing I am feeling much better right now so I can do the driving and other things he can't do.

    I have more testing done next week. I am not looking forward to the methacholine challenge test. Evidently you get to inhale a substance that will trigger an asthma attack. If the lung spirometry (?) does not drop significantly, then they rule out asthma. that is what my diagnosis is right now - but I barely respond to asthma meds...so they are looking into something else.

    To be honest - I think my solution is the long term antibiotics I am on now because I have not been this good in over a year. Still a cough and an expiratory wheeze that NEVER goes away - but it is livable. My sinuses are much much better. Still somewhat SOB - so maybe there is something out there to help my odd case.

    So happy to be healthy enough to enjoy my new granddaughter. She is SO cute and SO sweet! Thanks for asking!!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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    Jacquie, it sort of sounds like the antibiotics are part of the key to the puzzle! I know I've heard some things about some of us with chronic sinus problems harboring certain bad strains of bacteria. You may have asthma, but with the sinus problems, too, it would be hard to tell the difference sometimes, I'd think, with the post nasal drip getting into your lower airways. I'm glad the doc there is willing to spend some time and effort on you and explore different avenues. It sounds like going to CC was a step in the right direction. I'm glad to hear about the sweet baby, too. I'm just not happy to hear about your husband's fall and injury and being treated in a sub-optimum fashion at Urgent Care. I wish him the best in getting this healed and getting back to normal!
    Anne, dx'ed April 2011

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    Glad to hear that your new granddaughter is doing all the right things
    I'm sorry to hear that your husband had a fall - ouch I hope his recovery is quick and it mends correctly
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    I'm glad that you are going to get some further testing, from Dr. Culver. He is a very attentive doc and not bad to look at either. I think he will get to the bottom of your health problems. I'm glad that you are getting to spend time with your newest family member. Sorry your husband is having such a bad time, I hope he heals quickly. I wish you and your family all the best. Keep us posted.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Interesting you were asked about being a premature baby. My daughter who has WG was a premie and I wondered about the connection shortly after she was diagnosed at age 25. She was only estimated to be about 3weeks premature, but it was her lungs and respiratory system that was distressed. She started developing major sinus issues about the age of 13, but doctors at the time judged it to be allergies.
    I wonder if the Cleveland Clinic is doing studies looking at a connection ( at least in some cases) with premature birth.

    Glad you had a good experience at the Clinic. Wish you continuing progress.

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