How is everybody doing?

Hello All! The forum has gone quite. Haven’t heard from some of you in awhile. I am hoping some of you will check in. As for me, I just got ALL of my sputem lab reports going back to 2013 as I had requested. My very last test from June came back negative for everything. Yay!!!! I still battle fatigue and shortness of breath though. There were some organisms picked up in the past that I had not recognized, so I am going to Google them. Look forward to hearing from everyone! -Terri M.

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

@windwalker

Jan, we are not saying you do not have asthma. Often times asthma and COPD go hand-in-hand with bronchiecstasis. It is called ‘co-morbid disease’. I have all three and then some! -Terri

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Hi Terry,

Sorry, I had to stay quiet for a week.
I think that there was a mixture of bad luck and later on, stupidity on my part when I went for the Bronchoscopy.
I was very nervous and told them that I have a very strong gagging reflex but nevertheless I wasn’t sedated enough and was conscious for way too long. I could hear myself panting and making and almost growling sound, I sounded like a dog in distress ,finally, lights out. I will never forget that experience.

When I went home I felt very tired so I told my friend to go and enjoy the day after thanking her.
Later on I got up and ate an omelette and shortly after that my system when into some kind of shock like state. I was so cold mi teeth were shaking. The end of my fingers tip were wrinkled like I had spent a long time in cold water, I was so weak ,had a hard time getting a hot water bottle and hot tea. I put 3 blankets on top of me and stayed there shaking for a few hours,
I did not wasn’t to call 911 but I unlocked the front door and carried a telephone with me for a while. Later on I started to get very hot so I might have had a fever, did not have the strength to look for a thermometer.
Luckily with rest ,the symptoms settled down hours later.
It was my fault ,the instructions did say to keep someone for 24 hours but I read that later when it was over.

I felt very weak for quite a few days and did spit out blood up to yesterday which I know is normal. I think that my nervous system was more affected as I suffer from anxiety and I imagine that it didn’t help things.
I seem to be OK today, thank God.
I will not have my results until September 11th as my specialist is on vacation, the test was done by someone else who mentioned that they would check my larynx as I have lost my voice since 8 months now.

When I go for my results appointment, a nurse friend of mine will come along to help ask questions. Thank God for good friends!

Thank you Terry for asking, hopefully I’m won’t be scarring anymore away from this test , I’m sure that there are easier experiences
than mine .

Andree

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Hi everyone thought I would check in again after my numerouse Dr appointments and give you an update. I went to get a second opinion at the Mayo Clinic at Rochester Dr Moua then saw my pulminologist here and also saw my infectious disease Dr. here. They are all on the same page that they would not start treatment yet for mycobacterium abcessus. My most current Ct scan was better that the last one that I had a couple months prior. They said my Ct scan looks pretty good.
Saw my pulminologist here and he wants to do a bronchialscope next week on me. He said that would help clean out the airways of trapped mucus and mycobacterium and that he has had patients do well getting a few scopes a year. Not that scopes are a cure but could be a big benefit to help your own lungs clear out bacteria. I have had scopes in the past not for mycobacterium and noticed a big improvement in breathing afterwards. I have had bad asthma since childhood so that is what started the spiral downwards. Saw my pulminologist the first time about 9 years ago with pneumonia that didn’t respond to antibiotic. Was diagnosed then with bronchectasis.
I do all the usual things saline nebs aerobeka and also The Vest airway clearance twice a day for half hour each time.
Do some of you have the special shower filter for showering and how much do they run?
I’m not to big on baths knees aren’t the best.
Thanks!!!
Shari

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@pfists

Hi everyone thought I would check in again after my numerouse Dr appointments and give you an update. I went to get a second opinion at the Mayo Clinic at Rochester Dr Moua then saw my pulminologist here and also saw my infectious disease Dr. here. They are all on the same page that they would not start treatment yet for mycobacterium abcessus. My most current Ct scan was better that the last one that I had a couple months prior. They said my Ct scan looks pretty good.
Saw my pulminologist here and he wants to do a bronchialscope next week on me. He said that would help clean out the airways of trapped mucus and mycobacterium and that he has had patients do well getting a few scopes a year. Not that scopes are a cure but could be a big benefit to help your own lungs clear out bacteria. I have had scopes in the past not for mycobacterium and noticed a big improvement in breathing afterwards. I have had bad asthma since childhood so that is what started the spiral downwards. Saw my pulminologist the first time about 9 years ago with pneumonia that didn’t respond to antibiotic. Was diagnosed then with bronchectasis.
I do all the usual things saline nebs aerobeka and also The Vest airway clearance twice a day for half hour each time.
Do some of you have the special shower filter for showering and how much do they run?
I’m not to big on baths knees aren’t the best.
Thanks!!!
Shari

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Hi, pfists —- I’m responding to your note because I too have Dr. Moua in Rochester.  I would like your email address if you would care to give it out……. I thought I might like to visit with you about him and how you felt about your session with him.

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@pfists

Hi everyone thought I would check in again after my numerouse Dr appointments and give you an update. I went to get a second opinion at the Mayo Clinic at Rochester Dr Moua then saw my pulminologist here and also saw my infectious disease Dr. here. They are all on the same page that they would not start treatment yet for mycobacterium abcessus. My most current Ct scan was better that the last one that I had a couple months prior. They said my Ct scan looks pretty good.
Saw my pulminologist here and he wants to do a bronchialscope next week on me. He said that would help clean out the airways of trapped mucus and mycobacterium and that he has had patients do well getting a few scopes a year. Not that scopes are a cure but could be a big benefit to help your own lungs clear out bacteria. I have had scopes in the past not for mycobacterium and noticed a big improvement in breathing afterwards. I have had bad asthma since childhood so that is what started the spiral downwards. Saw my pulminologist the first time about 9 years ago with pneumonia that didn’t respond to antibiotic. Was diagnosed then with bronchectasis.
I do all the usual things saline nebs aerobeka and also The Vest airway clearance twice a day for half hour each time.
Do some of you have the special shower filter for showering and how much do they run?
I’m not to big on baths knees aren’t the best.
Thanks!!!
Shari

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@auntnanny Jan, we are not supposed to post our phone numbers on this thread. It is not safe to do that. Please private message the person that you want to have it by clicking on there name. Thanks!

REPLY
@pfists

Hi everyone thought I would check in again after my numerouse Dr appointments and give you an update. I went to get a second opinion at the Mayo Clinic at Rochester Dr Moua then saw my pulminologist here and also saw my infectious disease Dr. here. They are all on the same page that they would not start treatment yet for mycobacterium abcessus. My most current Ct scan was better that the last one that I had a couple months prior. They said my Ct scan looks pretty good.
Saw my pulminologist here and he wants to do a bronchialscope next week on me. He said that would help clean out the airways of trapped mucus and mycobacterium and that he has had patients do well getting a few scopes a year. Not that scopes are a cure but could be a big benefit to help your own lungs clear out bacteria. I have had scopes in the past not for mycobacterium and noticed a big improvement in breathing afterwards. I have had bad asthma since childhood so that is what started the spiral downwards. Saw my pulminologist the first time about 9 years ago with pneumonia that didn’t respond to antibiotic. Was diagnosed then with bronchectasis.
I do all the usual things saline nebs aerobeka and also The Vest airway clearance twice a day for half hour each time.
Do some of you have the special shower filter for showering and how much do they run?
I’m not to big on baths knees aren’t the best.
Thanks!!!
Shari

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@ auntnanny Yes Jan I will call you… I wrote down your number so you can delete your number from this posting.
Thanks

Shari

REPLY
@pfists

Hi everyone thought I would check in again after my numerouse Dr appointments and give you an update. I went to get a second opinion at the Mayo Clinic at Rochester Dr Moua then saw my pulminologist here and also saw my infectious disease Dr. here. They are all on the same page that they would not start treatment yet for mycobacterium abcessus. My most current Ct scan was better that the last one that I had a couple months prior. They said my Ct scan looks pretty good.
Saw my pulminologist here and he wants to do a bronchialscope next week on me. He said that would help clean out the airways of trapped mucus and mycobacterium and that he has had patients do well getting a few scopes a year. Not that scopes are a cure but could be a big benefit to help your own lungs clear out bacteria. I have had scopes in the past not for mycobacterium and noticed a big improvement in breathing afterwards. I have had bad asthma since childhood so that is what started the spiral downwards. Saw my pulminologist the first time about 9 years ago with pneumonia that didn’t respond to antibiotic. Was diagnosed then with bronchectasis.
I do all the usual things saline nebs aerobeka and also The Vest airway clearance twice a day for half hour each time.
Do some of you have the special shower filter for showering and how much do they run?
I’m not to big on baths knees aren’t the best.
Thanks!!!
Shari

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You are welcome to Private Message me if that would be easier.  I’m lsorry I didn’t give you the email address earlier.  

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Gosh….. I’ll try to remember to do that. Never thought a thing in the world about it.

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@unicorn

terri how did you get rid of everything? Did you take the big 3 for 2 years, or do other things. I cant tolerate the pills anymore so just doing aeribica and exercise. Honestly, I know I am getting slowly worse. Kind of scared of choking because sometimes blood comes up and quite frankly would rather go another way (like Katherine) than choke to death. Please post others that have bloody sputum or Hemoptysis. Hearing how others cope with this maks me more comfortable. xo Christa

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@unicorn Hello Christa. I have not heard back from you in a very long time. Will you please, please, contact me? You can pm in private if you wish. I have been very concerned about your well being. BIG hug, Terri M.

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@windwalker

Jan, we are not saying you do not have asthma. Often times asthma and COPD go hand-in-hand with bronchiecstasis. It is called ‘co-morbid disease’. I have all three and then some! -Terri

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@mariposa Andree! OMG! I don’t know how I missed this post. I am so sorry! I am also not happy to hear about your awful bronch experience. I had the same thing happen to me when I had mine done; they didn’t even put me in the twilight anesthesia like they are supposed to. I was totally conscious and not sedated at all! It was the most horrific experience I have ever had. When done correctly; a bronch is supposed to be as tolerable as a colonoscopy. If you have a nightstand, it might be a good idea to keep your thermometer there. It is a good idea to be aware of fevers, as they tend to indicate infection. How are you doing know? What did you learn from your doctor visits? (if you want to share that.) Hugs, Terri M.

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