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Thread: Feeling frustrated.....

  1. #1
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    Default Feeling frustrated.....

    I was informally diagnosed by my pulmonologist in my hometown. I did the research and requested a referral to Cleveland Clinic. I saw Dr. Villa Forte 10/25. She did a bunch of new bloodwork and also sent off my lung biopsy slides for the people at CC to evaluate. She said she would call me when she got all the results, but she was also going out of town shortly after. She referred me to Dr. Gildea because I have lung issues and a narrowed opening on my left side. I've seen him a few times for bronchs. He placed a stent and then removed it. I'm scheduled to go back 1/31 to let him check it again. In the meantime, I've heard nothing from Villa Forte's office. I sent a couple messages and then finally called and left a message. She called me in the evening on 1/6 and talked to me for about 15 minutes. I feel like I got lost in the shuffle with all of the holidays in between and her being out of town. I feel like she's back at the starting point and had no plan for starting treatment yet. I had some infection in my lung and she said they wanted to make sure that is cleared before they do any of the meds that will deplete my immune system. I get that, I do. I'm just frustrated that it's been so long and I haven't even started any type of treatment.

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  3. #2
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    Default Re: Feeling frustrated.....

    I soooo understand your position. I've been told my current delays are 'because of the holidays' also. It doesn't help to hear that- it just doesn't. Our illness doesn't observe the holidays.
    It sounds like you are getting back on track (I'm hopeful that I am too) and that is the main thing right now. I met Dr Villaforte at a WG conference once while we were at the airport. She was very kind and generous with her time- I hope you start getting the same treatment.

    I have suffered from lung infections in recent times and started a new treatment for it that I had never heard of previously. I have no idea if it would ever be appropriate for you but it would be good for you to know about.

    I do breathing treatments with inhaled antibiotics. Tobramycin is what I am using. I don't know if there are others that could be specific to particular bugs. I am a farm for pseudomonas. I was hospitalized with pneumonia a couple of times and I credit these treatments for keeping me out of the hospital. They are easy to do twice a day.

    Take good care to keep your sinus clean with saline/soda rinse as stuff in there easily ends up in your lungs. I also use Alkalol in my sinus rinse once in a while as it is very soothing and supposed to be mildly antibiotic. There are also antibiotic capsules to add to sinus rinse if you end up needing to treat sinus infection.

    The holidays are over- lets get better

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  5. #3
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    Default Re: Feeling frustrated.....

    That is great info! Thank you! I feel confident that the pulmo at CC is getting me straightened out. I was just very disappointed that it felt like Dr Villa Forte had not really even looked at my information until I had to call and leave a message.
    I use a sinus rinse 1-2 times a day and I use alkalol a few times a week. I have tons of issues with my sinuses as well.
    I have not heard of the inhaled antibiotics, so maybe that will be on the horizon.

    Thanks for the words of encouragement. I hope that you get back on track as well!!

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