Re: good for lungs, digestion -Cindi Sharyn

[Guest guest]

Subject: Re: good for lungs, digestion - NOT reflux!To: bronchiectasis Date: Tuesday, February 15, 2011, 9:46 PM

Thank you for the information. That is very interesting about being tested for CF. How is that done?

Cindi W

To: bronchiectasis Sent: Mon, February 14, 2011 9:04:11 AMSubject: Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told

them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor

can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in

bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

[Guest guest]

Hi Joy from WI.......I was so sorry to read about your problems. I have not heard of the white spots except one time after a Ct-scan there was a "mass" in my lower left lung and they sent me to the cancer center for a PET Scan of the entire body. Thank heavens it did not show it was cancer. Later I had another C-scan and it was clear. Rochester is the best place in the world and know they will help you. If you've read my other emails you know that I also have gone to the National Jewish Hospital for Respitorary Disease in Denver and that is another wonderful place. I am planning to go there again later this Spring to get an evaluation as I have not been there for over 3 yrs. and I've been having some additional problems. I am also anxious to get home

and talk to my local Dr. about starting the nebulizer as it makes sense that it will loosen the mucus. And am wondering why no Dr. has put me on that.? I have felt so alone with this disease (sometimes I can get pretty despressed - I look healthy and am in good condition - it is hard for people to understand why I can't always do things or be gone for a whole day etc. etc.) but finding this website has given me a lift. Good luck at Mayo and we will be anxious to hear about your results. Sharyn

To: bronchiectasis Sent: Thu, February 24, 2011 10:45:50 PMSubject: Re: good for lungs, digestion -Cindi Sharyn

Subject: Re: good for lungs, digestion - NOT reflux!To: bronchiectasis Date: Tuesday, February 15, 2011, 9:46 PM

Thank you for the information. That is very interesting about being tested for CF. How is that done?

Cindi W

To: bronchiectasis Sent: Mon, February 14, 2011 9:04:11 AMSubject: Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told

them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor

can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in

bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

[Guest guest]

Joy, My pulmonologist showed me very tiny white dotson the catscan when I first began with bronco. Are your spots real tiny or larger size. What I was looking at were popping of some of the grapes in some of the "grape clusters" (as I call them). Nona

To: bronchiectasis Sent: Fri, February 25, 2011 10:21:13 AMSubject: Re: good for lungs, digestion -Cindi Sharyn

Hi Joy from WI.......I was so sorry to read about your problems. I have not heard of the white spots except one time after a Ct-scan there was a "mass" in my lower left lung and they sent me to the cancer center for a PET Scan of the entire body. Thank heavens it did not show it was cancer. Later I had another C-scan and it was clear. Rochester is the best place in the world and know they will help you. If you've read my other emails you know that I also have gone to the National Jewish Hospital for Respitorary Disease in Denver and that is another wonderful place. I am planning to go there again later this Spring to get an evaluation as I have not been there for over 3 yrs. and I've been having some additional problems. I am also anxious to get home and talk to my local Dr. about starting the nebulizer as it makes sense that it will loosen the mucus. And am wondering why no Dr. has put me on

that.? I have felt so alone with this disease (sometimes I can get pretty despressed - I look healthy and am in good condition - it is hard for people to understand why I can't always do things or be gone for a whole day etc. etc.) but finding this website has given me a lift. Good luck at Mayo and we will be anxious to hear about your results. Sharyn

To: bronchiectasis Sent: Thu, February 24, 2011 10:45:50 PMSubject: Re: good for lungs, digestion -Cindi Sharyn

Subject: Re: good for lungs, digestion - NOT reflux!To: bronchiectasis Date: Tuesday, February 15, 2011, 9:46 PM

Thank you for the information. That is very interesting about being tested for CF. How is that done?

Cindi W

To: bronchiectasis Sent: Mon, February 14, 2011 9:04:11 AMSubject: Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told

them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor

can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in

bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

[Guest guest]

Sharyn sounds like your cat scan looked similar to mine except there was a lot of them,but not in clusters. I won't get the results back on them for another couple weeks. It sometimes takes six weeks to grow the sputum out. I had the middle lobe removed from my left lung about four years cause it had puss coming out of it all the time. I haven't seen a great improvement since that. We have to take it one day at a time. I am anxious to get back to the Mayo Clinic. I have heard many good things about the National Jewish Hospital I would love to go there someday for a good check up. Take care of your self and I will get back to you real soon. Thanks for replying back to me l

Subject: Re: good for lungs, digestion - NOT reflux!To: bronchiectasis Date: Tuesday, February 15, 2011, 9:46 PM

Thank you for the information. That is very interesting about being tested for CF. How is that done?

Cindi W

To: bronchiectasis Sent: Mon, February 14, 2011 9:04:11 AMSubject: Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told

them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor

can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in

bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne