first doctor visit

Posted by ann0616 @ann0616, Wed, Feb 6 7:19am

Good morning! I had my first appoint at UW Health Pulmonary Clinic yesterday. I was anxious as I had no idea how bad my CT scan was. I did really well on most of the breathing tests. Much better than someone with asthma should do. They did a sputum test a week ago. All three came back negative for MAC infection in the rapid smear but they said they could not run the culture as the sputum was too old (I did get it to them in the proper time frame). I am not sure why they could run a rapid smear but not a culture. They said they wanted the doctor to collect for another. He did not feel he had to check as I am not coughing much and not getting anything up. He said that since I feel well overall he did not want to put me through additional tests and would just redo a CT scan at six months. He said there were nodules which were probably scar tissue from whooping cough and pneumonia. He said my bronchiectasis is not that bad at the moment. He said of course if I started not feeling well I should get in before the six months. He was very thorough going through the breathing tests and CT scan with me. I was just wondering what your opinion was of the wait and watch. Thanks so much for any input!

@ann0616 Like I told you before, I have also been going to the UW Pulmonary Clinic to see Dr. Ferguson. He has had pretty much the same approach as your doctor there. I've had chest X-rays, CT scans, breathing test, etc. I also had the rapid smear for the sputum test in the beginning which came back positive for MAC. But I have not had more sputum test since then. I do have one or two nodules that showed up in the chest X-ray, but he is not worried about them. He thinks since I don't have many symptoms (other than excessive mucus), my bronchiectasis is not severe and I can still be very active physically with no breathing problems, I can continue to live a normal life without the drug treatment. But he did leave that up to me whether I wanted to be treated or not. I said no. It has been over 4 year since my diagnosis and nothing has changed in the wrong direction. So although I have not had subsequent test to see if I'm still positive for MAC, I firmly believe I'm not. My doctor and I are on the same page with the "wait and see" approach with the provision that if I ever feel worse I should go see him right away. We have adjusted my follow-up frequency from every 3 months to every 6 months to now once a year. So far so good.

I can't tell you what you should do. It all depends on how you feel and whether you can live as normally as you'd like in your daily life. Whichever direction you choose to go, just make sure you keep up with your follow-up appointments and contact your doctor immediately if anything changes.

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@ling123 Thank you so much for your reply. I am seeing Dr. Cole at the clinic. I have heard good things about Dr. Ferguson and I was going to ask for him if I didn't like Dr. Cole. I do like Dr. Cole though. He spent a lot of time with me. Our situations sound very similar except my rapid smear did not come back positive. But honestly, I could not get hardly anything up and almost didn't send them in because there was so little. I am sorry you have this disease, but it's nice to have someone in the Madison area to talk to.

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@ann0616

@ling123 Thank you so much for your reply. I am seeing Dr. Cole at the clinic. I have heard good things about Dr. Ferguson and I was going to ask for him if I didn't like Dr. Cole. I do like Dr. Cole though. He spent a lot of time with me. Our situations sound very similar except my rapid smear did not come back positive. But honestly, I could not get hardly anything up and almost didn't send them in because there was so little. I am sorry you have this disease, but it's nice to have someone in the Madison area to talk to.

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@ann0616 It's a good news that your sputum test was negative for MAC/MAI. Although bronchiectasis is incurable, it is not life threatening. We just have to be careful and mindful about it because it causes the walls of our bronchial tubes to get rough with pockets where the sticky sputum accumulates creating hot bed for bacteria to fester. That's why people with bronchiectasis catches MAC/MAI a lot more easily than those who don't have it. My lungs were scarred in my early years. Doctors suspected that I was exposed to TB when I was a child because my TB skin test was positive. Although I never developed TB, the exposure scarred my lungs. I also have very bad case of allergies, which used to make me cough a lot and generate a lot of mucus. After a long period of treatment, the allergies are under control, but excessive mucus remains. Seeing that you don't have much mucus, it can be a good thing. Just be vigilant about any changes in your physical conditions. Let your doctor know any changes and make sure any kind of infections that can potentially go to your lungs get treated right away. If you have questions or just want to talk, you are welcome to send me private messages. Click on the link under my picture to open my page, where you should find a link that says private message. Not that I'm able to answer all your questions. But it never hurts to connect with people who can relate to your situation and your feelings better than those who don't share the same illnesses.

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How did you treat your allergies? Did you do allergy shots? Your history sounds similar to mine. I did shots 2 years once and one year another time – second time was cut short. These days I’m very interested in gut health, food sensitivities, etc. thx and wishing you good health.

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@ling123

@ann0616 It's a good news that your sputum test was negative for MAC/MAI. Although bronchiectasis is incurable, it is not life threatening. We just have to be careful and mindful about it because it causes the walls of our bronchial tubes to get rough with pockets where the sticky sputum accumulates creating hot bed for bacteria to fester. That's why people with bronchiectasis catches MAC/MAI a lot more easily than those who don't have it. My lungs were scarred in my early years. Doctors suspected that I was exposed to TB when I was a child because my TB skin test was positive. Although I never developed TB, the exposure scarred my lungs. I also have very bad case of allergies, which used to make me cough a lot and generate a lot of mucus. After a long period of treatment, the allergies are under control, but excessive mucus remains. Seeing that you don't have much mucus, it can be a good thing. Just be vigilant about any changes in your physical conditions. Let your doctor know any changes and make sure any kind of infections that can potentially go to your lungs get treated right away. If you have questions or just want to talk, you are welcome to send me private messages. Click on the link under my picture to open my page, where you should find a link that says private message. Not that I'm able to answer all your questions. But it never hurts to connect with people who can relate to your situation and your feelings better than those who don't share the same illnesses.

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@ling123 Thanks so much!!

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@ncgirl

How did you treat your allergies? Did you do allergy shots? Your history sounds similar to mine. I did shots 2 years once and one year another time – second time was cut short. These days I’m very interested in gut health, food sensitivities, etc. thx and wishing you good health.

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Hi @ncgirl I assume your question is for me? When you reply to someone's post, it's best if you include their handle in your message so people know which post you are referring to. I knew I had allergies for many, many years but not sure exactly to what. And I didn't do anything until I got stung by wasps in summer of 2009. At the time I had no idea I was also allergic to bee venoms. The incident sent me to the ER. When I went to see an allergist afterwards, he suggested that I have a skin test to see exactly what I was allergic to as the first step, then get on a treatment regimen of allergy shots. The skin test revealed that I was allergic to the pollen from just about all trees common to Wisconsin as well as ragweed and court grass. And I was also allergic to dust mote (I always wondered why I was still coughing in the dead of winter). After the diagnosis, I went on the treatment regimen of 5 different shots each time, two for bee venoms and 3 for the other allergies. The frequency started out once a week, then once a month. The entire process took 5 years to finish. I used to have to bring water to every meeting and movie I went to so I wouldn't make a lot of noise. Cough drops in the mouth every night so I wouldn't wake my husband or even myself. Toward the latter part of the treatment, my coughing was pretty much stopped. And it stays that way to this day. Sorry for the rambling. I'm just very grateful that I no longer have that nagging cough that made me very self-conscious for so many years. Excessive mucus is also annoying, but compared to what I had been through before the treatment, this is nothing.

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@ann0616

@ling123 Thank you so much for your reply. I am seeing Dr. Cole at the clinic. I have heard good things about Dr. Ferguson and I was going to ask for him if I didn't like Dr. Cole. I do like Dr. Cole though. He spent a lot of time with me. Our situations sound very similar except my rapid smear did not come back positive. But honestly, I could not get hardly anything up and almost didn't send them in because there was so little. I am sorry you have this disease, but it's nice to have someone in the Madison area to talk to.

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@ann0616, ling123

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@ann0616 I am new to this site, but I see you are in Madison, WI? I am in Milwaukee. I was first diagnosed in 2010. The Pulmonologists at Froedert did not know the correct treatment protocol initially, so I had a recurrence within months. I saw an ID in Chicago, who out me on a more aggressive treatment for 18 month. I was good for 6 years! I just was rediagnosed last summer. My doctor at Froedert seems more educated this time, but he is recommending a lobectomy. I am pursuing a second opinion at National Jewish. What is your story? ~Angie

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@angiejohnson

@ann0616 I am new to this site, but I see you are in Madison, WI? I am in Milwaukee. I was first diagnosed in 2010. The Pulmonologists at Froedert did not know the correct treatment protocol initially, so I had a recurrence within months. I saw an ID in Chicago, who out me on a more aggressive treatment for 18 month. I was good for 6 years! I just was rediagnosed last summer. My doctor at Froedert seems more educated this time, but he is recommending a lobectomy. I am pursuing a second opinion at National Jewish. What is your story? ~Angie

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@angiejohnson, Hi there. Is there any way you can get to a Mayo Clinic for your second opinion on the lobectomy instead of NJH? I say that because I feel like NJH is quick to do lobectomies.

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@windwalker

@angiejohnson, Hi there. Is there any way you can get to a Mayo Clinic for your second opinion on the lobectomy instead of NJH? I say that because I feel like NJH is quick to do lobectomies.

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@windwalker I already had the lobectomy on April 8. I would consider Mayo for second opinion on my continued treatment.

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@angiejohnson

@windwalker I already had the lobectomy on April 8. I would consider Mayo for second opinion on my continued treatment.

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@angiejohnson, Oops!! I dee you did post that to tdrell. Had you gotten a second opinion before you did that? Just curious. Are you feeling a lot better for doing it? It sounds like you are healing nicely. My middle right lobe has a big dead spot from the result of mac. The majority of my middle lobe is severely damaged & non-functioning. I wonder what another institution's train of thought would be on it.

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