Cavitary lesion and wall thickness ?

Posted by jewel8888 @jewel8888, Mar 15, 2017

Hi there, im new to this groip. Last year i had a 3 month review for an upper left lobe cavitary lesion. Bronchospy couldn’t reveal any information, the lesion isi5n difficult spot to get enough sample. Three months ago thr next CT scan revealed the size was the same but the wall thickness is a bit smaller than before. My next CT is soon and i want to be prepared with questions but dont know where to begin. I have RA and psoriatic arthritis, and also suffered a fall before all this started. Please let me know if you have any suggestions….i see the cardio/thoracic surgeon in a couple weeks and he said if not smaller they want to get me in surgery….thank you

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This is a question to the MAC/Bronchi group: has anyone tried to stop using their Symbicort for any length of time to see if it really makes a difference? I know this is best decided by ones doctor, but I just read in the little book on Bronchiectasis by Pecaut that the use of steroids on a regular basis wrecks havoc with the immune system by suppressing it. I wrote awhile ago that taking the 2 puffs twice a day really does not make me cough much. I have been on the Symbicort now for about 3 years. Why would anyone want a suppressed immune system?! Also, as an aside, I did not get my Connect today.. does this sometimes happen with any of you? Thank you, Pamela

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@pamelasc1, Pamela interesting that you should ask this question! I asked this VERY question re: the use of Qvar a steroid inhaler on my March 7 appointment. I have been using Qvar for quite a few years .. 2 puffs 2x per day for my MAC and Bronchiectasis .. questioning how it could be affecting my immune system. Dr. Aksamit’s answer for me? That dealing with MAC or Bronchiectasis .. the risk/reward was worth the continued use of a steroid inhaler. SO… I continue to use Qvar because I trust my Pulmonologist at Mayo Clinic .. BUT I think EACH of us must speak to our own Pulmonologist re our own particular health situation. Hope that info helps? Hugs! Katherine

(I will forward your ” did not get my Connect today.. does this sometimes happen with any of you? ‘ to Colleen .. maybe she can check on it?)

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@pamelasc1, Pamela, as I was just getting ready for bed .. your post came to my mind .. that ” that taking the 2 puffs twice a day really does not make me cough much ” about your inhaler. My question? Have you tried the Aerobika recommended by other of our members? After reading of their good experiences with the Aerobika I purchased mine .. and have had REALLY good experience getting up much more mucus than without it. I did this because I am so aware of the importance of getting the mucus up and out .. that the mucus becomes a breeding ground for more mycobacterium otherwise.

This is just a thought .. but I found the Aerobika really helpful. Hugs! Katherine

AEROBIKA http://www.aerobika-therapy.com/order-today/ https://www.monaghanmed.com/Aerobika

INHALERS/LUNG HYGIENE/AEROBKA
Below is my particular routine in using my Aerobika
1. use my 2 inhalers PRIOR to brushing my teeth
2. use a “huff” cough at least 3 times .. like you were cleaning your glasses and fog them with your breath .. only MORE forcefully. Then use the Aerobika device per the instructions. Do the huff cough along with the Aerobika until you feel you have gotten up as much sputum as you possibly can. I have found using the Aerobika you are able to ” pull” mucous out of those lower lung airways in a way you cannot without the device. Personally I do this twice a day.
3. using peroxide to dampen my toothbrush and toothpaste to brush (purchased a squirt dispenser for the peroxide)
4. rinse my toothbrush .. then using peroxide for toothbrush storage for sterilizing
I think this routine will help oral thrush by keeping my Sonicare toothbrush

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@pamelasc1

This is a question to the MAC/Bronchi group: has anyone tried to stop using their Symbicort for any length of time to see if it really makes a difference? I know this is best decided by ones doctor, but I just read in the little book on Bronchiectasis by Pecaut that the use of steroids on a regular basis wrecks havoc with the immune system by suppressing it. I wrote awhile ago that taking the 2 puffs twice a day really does not make me cough much. I have been on the Symbicort now for about 3 years. Why would anyone want a suppressed immune system?! Also, as an aside, I did not get my Connect today.. does this sometimes happen with any of you? Thank you, Pamela

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@pamelasc1, Pamela .. thanks for letting us know about the Daily Digest .. I let Colleen know and she sent me this message: “There appears to be a glitch in the delivery of the daily digest. I’ve reported it to the tech team to get sorted out.”

Let me know if it you don’t get it within a couple of days! Hugs! Katherine

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@katemn

@pamelasc1, Pamela interesting that you should ask this question! I asked this VERY question re: the use of Qvar a steroid inhaler on my March 7 appointment. I have been using Qvar for quite a few years .. 2 puffs 2x per day for my MAC and Bronchiectasis .. questioning how it could be affecting my immune system. Dr. Aksamit’s answer for me? That dealing with MAC or Bronchiectasis .. the risk/reward was worth the continued use of a steroid inhaler. SO… I continue to use Qvar because I trust my Pulmonologist at Mayo Clinic .. BUT I think EACH of us must speak to our own Pulmonologist re our own particular health situation. Hope that info helps? Hugs! Katherine

(I will forward your ” did not get my Connect today.. does this sometimes happen with any of you? ‘ to Colleen .. maybe she can check on it?)

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Katherine – thanks so much for answering my question about the use of steroids and I am glad you asked the same question when you were at Mayo… I see a new ID doctor next week and am going to talk to him about this issue. I will get back to the group with what he feels I should do … I have given thought to buying the Aerobika and will talk to him about that as well. Many thanks. It was just one day I did not get the Digest, so hopefully that glitch has been resolved. Thanks! Pamela

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@katemn

@pamelasc1, Pamela interesting that you should ask this question! I asked this VERY question re: the use of Qvar a steroid inhaler on my March 7 appointment. I have been using Qvar for quite a few years .. 2 puffs 2x per day for my MAC and Bronchiectasis .. questioning how it could be affecting my immune system. Dr. Aksamit’s answer for me? That dealing with MAC or Bronchiectasis .. the risk/reward was worth the continued use of a steroid inhaler. SO… I continue to use Qvar because I trust my Pulmonologist at Mayo Clinic .. BUT I think EACH of us must speak to our own Pulmonologist re our own particular health situation. Hope that info helps? Hugs! Katherine

(I will forward your ” did not get my Connect today.. does this sometimes happen with any of you? ‘ to Colleen .. maybe she can check on it?)

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@pamelasc1, Hi Pamela please let us know what this doctor says about the inhalers .. AFTER he gives you an opinion .. tell him about the opinion of my Mayo Clinic doctor .. watch his reaction! See how he reacts .. would be interesting! I can only tell you for me .. the Aerobika gets up mucus that I can’t get up on my own with trying REALLY hard coughing! Keep us posted on how your appointment goes! Hugs! Katherine

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@katemn

@pamelasc1, Pamela interesting that you should ask this question! I asked this VERY question re: the use of Qvar a steroid inhaler on my March 7 appointment. I have been using Qvar for quite a few years .. 2 puffs 2x per day for my MAC and Bronchiectasis .. questioning how it could be affecting my immune system. Dr. Aksamit’s answer for me? That dealing with MAC or Bronchiectasis .. the risk/reward was worth the continued use of a steroid inhaler. SO… I continue to use Qvar because I trust my Pulmonologist at Mayo Clinic .. BUT I think EACH of us must speak to our own Pulmonologist re our own particular health situation. Hope that info helps? Hugs! Katherine

(I will forward your ” did not get my Connect today.. does this sometimes happen with any of you? ‘ to Colleen .. maybe she can check on it?)

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KateYou just use the plain Aerobika? How many breaths, 15?ThanksKay S

REPLY
@katemn

@pamelasc1, Pamela interesting that you should ask this question! I asked this VERY question re: the use of Qvar a steroid inhaler on my March 7 appointment. I have been using Qvar for quite a few years .. 2 puffs 2x per day for my MAC and Bronchiectasis .. questioning how it could be affecting my immune system. Dr. Aksamit’s answer for me? That dealing with MAC or Bronchiectasis .. the risk/reward was worth the continued use of a steroid inhaler. SO… I continue to use Qvar because I trust my Pulmonologist at Mayo Clinic .. BUT I think EACH of us must speak to our own Pulmonologist re our own particular health situation. Hope that info helps? Hugs! Katherine

(I will forward your ” did not get my Connect today.. does this sometimes happen with any of you? ‘ to Colleen .. maybe she can check on it?)

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@pamelasc1,Pamela by the way I teased Dr. Aksamit when I saw him that I had to find out about the Aerobika on our Forum .. that he had not mentioned it to me! Hmmm!

I ordered my Aerobika through http://www.aerobika-therapy.com/order-today/ . Number of breaths? Kinda until I feel like I need to cough .. usually for me around 20 or so. Then I do it until I am no longer getting up any more sputum … that various .. sometimes using the Aerobika 2x .. sometimes several times. Hopes that helps! Katherine

REPLY
@pamelasc1

This is a question to the MAC/Bronchi group: has anyone tried to stop using their Symbicort for any length of time to see if it really makes a difference? I know this is best decided by ones doctor, but I just read in the little book on Bronchiectasis by Pecaut that the use of steroids on a regular basis wrecks havoc with the immune system by suppressing it. I wrote awhile ago that taking the 2 puffs twice a day really does not make me cough much. I have been on the Symbicort now for about 3 years. Why would anyone want a suppressed immune system?! Also, as an aside, I did not get my Connect today.. does this sometimes happen with any of you? Thank you, Pamela

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@pamelasc1, The glitch with the Daily Digest has been corrected. Are you receiving it daily again?

REPLY
@pamelasc1

This is a question to the MAC/Bronchi group: has anyone tried to stop using their Symbicort for any length of time to see if it really makes a difference? I know this is best decided by ones doctor, but I just read in the little book on Bronchiectasis by Pecaut that the use of steroids on a regular basis wrecks havoc with the immune system by suppressing it. I wrote awhile ago that taking the 2 puffs twice a day really does not make me cough much. I have been on the Symbicort now for about 3 years. Why would anyone want a suppressed immune system?! Also, as an aside, I did not get my Connect today.. does this sometimes happen with any of you? Thank you, Pamela

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yes, the Digest is now coming in each day – thank you for fixing this! Pamela

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@katemn

@jewel8888, Julie, PLEASE keep us posted! We will help in any way we can .. we are NOT doctors .. but will try to help. Keep asking questions! Sending you hugs and LOTS of positive energy! Katherine

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Thank you again Katherine. I will keep everyone updated about my April 4th visit with CARDIO/THORacic surgeon on April 4. It was difficult getting the ct scan, i wasnt feeling well from a hip/bursitis injection last Friday, where i had an allergy to it. I experienced extreme itching, cortisone flare, swelling along ankle and on top of right hand. Seems like ive gone down this journey with lung and increased inflammation, food allergies since i had several injections over a year ago. Its hard when so many things make it complicAted for doctors to diagnose and treat. Im picking up a short azithromyacin zpac today for new sinus infection. Im venting but know everyone understands.

Ill get the results tomorrow of ct scan and will definitely come here with the news. Is this thread in the mac group, i mzy have put it in wrong spot? Sincerely, jewel8888 julie

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@jenblalock

Hi. I have two cavitary lesions. Left lower lobe and upper right lobe. I also had NonTuberculosis Mycobacterium which has cleared up and have mild bronchiectasis. I went to National Jewish Health where they talked about doing surgery to remove the left lower lobe or section but after my second CT scan decided against it since the lesions are shrinking a bit now that the infection has cleared up. My local pulmonologist never wanted to do surgery. He says if I am feeling better (I am) that surgery was too aggressive just to prevent another infection since the surgery was serious and I can never get that part of my lung back. I have decided that there is no hurry to make any decision one way or another since I feel good and the lesions are no longer growing now that the infection is gone.

I would ask your doctors why they want to do surgery and what happens if you wait and see awhile. Have they done a bronchoscopy or sputum culture yet? I would also get a second opinion.

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Hi Jen:so glad you reached out to Connect!
This is a great group!
linda

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