Update on surgical procedure

[Guest guest]

Hi All,

Thanks for all your support and prayers for my surgical procedure. I am sorry this is so late, but within four hours after leaving the hospital I started feeling ill. I developed a fever and very achy body. During the night my temperature went up. The next morning I called my pulmonologist in Austin and went to that hospital. They ran numerous tests but did not find any cause so just gave me an antibiotic. I developed severe diarrhea which I do from some antibiotics. I thought that I might have viral gastroenteritis. I still feel very achy, but my temperature is normal. I am also still cold all the time so perhaps I have not totally thawed out from the freezer CT scanner room. I won't know the results of the procedure until I have my next CT scan in April.

With thanks to all,

Norma

[Guest guest]

hi Norma,

it's bad enough we have this disease and the awful way it can make us

feel but the side effects of treatments and investigations sometimes

really do not help do they? Am so sorry that it's hit you so hard, I

can emphathise, having had a few too many procedures in my life I'd

rather not have experienced.... I do hope you're feeling more

comfortable and back to you normal self soon,

hugs,

joy h

[Guest guest]

Glad you're back home Norma, and that your temp is now normal. Do you eat yogurt for the probiotics when taking antibiotics? Harder in the hospital, I imagine, but I sure find it helps an awful lot. Hope the achy feeling goes away.

Kay Update on surgical procedure

Hi All,

Thanks for all your support and prayers for my surgical procedure. I am sorry this is so late, but within four hours after leaving the hospital I started feeling ill. I developed a fever and very achy body. During the night my temperature went up. The next morning I called my pulmonologist in Austin and went to that hospital. They ran numerous tests but did not find any cause so just gave me an antibiotic. I developed severe diarrhea which I do from some antibiotics. I thought that I might have viral gastroenteritis. I still feel very achy, but my temperature is normal. I am also still cold all the time so perhaps I have not totally thawed out from the freezer CT scanner room. I won't know the results of the procedure until I have my next CT scan in April.

With thanks to all,

Norma

[Guest guest]

I am finally feeling much better. Tomorrow is my last day on antibiotics. I ate yogurt for years as I have osteoporosis; however, it did not prevent me from getting c difficile. For about the last ten years I have been taking Culturelle Lactobacillis GG. When I am taking an oral antibiotic, I take two per day at least two hours after taking the antibiotic. When I am not taking an antibiotic, I take one per day.

Thanks for your concern and support.

Norma

To: bronchiectasis Sent: Fri, March 4, 2011 12:49:13 AMSubject: Re: Update on surgical procedure

Glad you're back home Norma, and that your temp is now normal. Do you eat yogurt for the probiotics when taking antibiotics? Harder in the hospital, I imagine, but I sure find it helps an awful lot. Hope the achy feeling goes away.

Kay Update on surgical procedure

Hi All,

Thanks for all your support and prayers for my surgical procedure. I am sorry this is so late, but within four hours after leaving the hospital I started feeling ill. I developed a fever and very achy body. During the night my temperature went up. The next morning I called my pulmonologist in Austin and went to that hospital. They ran numerous tests but did not find any cause so just gave me an antibiotic. I developed severe diarrhea which I do from some antibiotics. I thought that I might have viral gastroenteritis. I still feel very achy, but my temperature is normal. I am also still cold all the time so perhaps I have not totally thawed out from the freezer CT scanner room. I won't know the results of the procedure until I have my next CT scan in April.

With thanks to all,

Norma

[Guest guest]

Hi Norma,

That's a really good brand. Whatever works. I was pretty sure you'd know all about probiotics! It'll be nice to be off the anti's . Have a good weekend. Is it warm in Texas yet? We've had some nice days in the 60's and move at about 50, a mixed bag this month.

Kay Update on surgical procedure

Hi All,

Thanks for all your support and prayers for my surgical procedure. I am sorry this is so late, but within four hours after leaving the hospital I started feeling ill. I developed a fever and very achy body. During the night my temperature went up. The next morning I called my pulmonologist in Austin and went to that hospital. They ran numerous tests but did not find any cause so just gave me an antibiotic. I developed severe diarrhea which I do from some antibiotics. I thought that I might have viral gastroenteritis. I still feel very achy, but my temperature is normal. I am also still cold all the time so perhaps I have not totally thawed out from the freezer CT scanner room. I won't know the results of the procedure until I have my next CT scan in April.

With thanks to all,

Norma

[Guest guest]

Norma - so glad you are feeling better. I also take Culturelle every day, BUT have not been taking 2 per day when I am on antibiotics..........thanks for that tip. Talking about antibioitcs......I was on Levaquin for 10 days last month and after being off for exactly 1 week and 2 days, I started getting the yellowish/light green mucus. This is right on schedule for me. I never seem to go past the 1 wk. 2 days. I am feeling okay and trying to stay on top of it so that I can at least go 3 weeks w/o another antibiotic.

I also take garlic capsules every day.......garlic helps fight infection. I know fresh garlic is better, but just can't do that continuously. Has anyone tried eating no sugar?....as bacteria feeds on sugar. I keep thinking there is going to be a miracle "something" that could help us all.

Another question: Do most of you use the little Acapella device and then the huff coughing? I always keep it with me and when I feel congestion, etc. I use it and it really works for me. However, it does not get the deep stuff out like the Vest.

Sharyn

To: bronchiectasis Sent: Fri, March 4, 2011 4:16:55 PMSubject: Re: Update on surgical procedure

Hi Norma,

That's a really good brand. Whatever works. I was pretty sure you'd know all about probiotics! It'll be nice to be off the anti's . Have a good weekend. Is it warm in Texas yet? We've had some nice days in the 60's and move at about 50, a mixed bag this month.

Kay Update on surgical procedure

Hi All,

Thanks for all your support and prayers for my surgical procedure. I am sorry this is so late, but within four hours after leaving the hospital I started feeling ill. I developed a fever and very achy body. During the night my temperature went up. The next morning I called my pulmonologist in Austin and went to that hospital. They ran numerous tests but did not find any cause so just gave me an antibiotic. I developed severe diarrhea which I do from some antibiotics. I thought that I might have viral gastroenteritis. I still feel very achy, but my temperature is normal. I am also still cold all the time so perhaps I have not totally thawed out from the freezer CT scanner room. I won't know the results of the procedure until I have my next CT scan in April.

With thanks to all,

Norma

[Guest guest]

Sharyn - Are you on any regular antibiotic regimen? I inhale 7 mL Tobramycin twice daily for the first 15 days a month after I inhale 2 mL Acetylcysteine (generic Mucomyst) mixed with 1 vial Xopenex in a nebulizer. I use the vest while I am inhaling the Acetylcysteine and Xopenex. Last May my infectious disease doctor added Azithromycin 500 mg that I take on Monday, Wednesday and Friday. It helps with the inflammation more than its antibiotic properties. I am allergic to Cipro and any antibiotics in the Quinolone family of antibiotics, which include Levaquin. I had tried the Acapella a few years ago while in the hospital, but the respiratory therapist set the level so high and I blew so hard that my blood pressure dropped to 70/30. When I

was in the hospital last December, the respiratory therapist set the level lower, and that helps. I have both the Acapella and Acapella Choice. The Acapella seems to help from within the body and the vest from outside. By using both I feel that I am getting as much mucus loosened as possible. I cough up most of the mucus later in the day. It also seems to come up more easily on warm and humid days.

The garlic capsules also help with inflammation. Since I was diagnosed with the kidney cancer and got the book, Beat Cancer with Nutrition, I have been watching the sugar I eat. It is hard to change ones eating habits at my age, but I am really trying.

Norma

To: bronchiectasis Sent: Sat, March 5, 2011 12:46:33 PMSubject: Re: Update on surgical procedure

Norma - so glad you are feeling better. I also take Culturelle every day, BUT have not been taking 2 per day when I am on antibiotics..........thanks for that tip. Talking about antibioitcs......I was on Levaquin for 10 days last month and after being off for exactly 1 week and 2 days, I started getting the yellowish/light green mucus. This is right on schedule for me. I never seem to go past the 1 wk. 2 days. I am feeling okay and trying to stay on top of it so that I can at least go 3 weeks w/o another antibiotic.

I also take garlic capsules every day.......garlic helps fight infection. I know fresh garlic is better, but just can't do that continuously. Has anyone tried eating no sugar?....as bacteria feeds on sugar. I keep thinking there is going to be a miracle "something" that could help us all.

Another question: Do most of you use the little Acapella device and then the huff coughing? I always keep it with me and when I feel congestion, etc. I use it and it really works for me. However, it does not get the deep stuff out like the Vest.

Sharyn

To: bronchiectasis Sent: Fri, March 4, 2011 4:16:55 PMSubject: Re: Update on surgical procedure

Hi Norma,

That's a really good brand. Whatever works. I was pretty sure you'd know all about probiotics! It'll be nice to be off the anti's . Have a good weekend. Is it warm in Texas yet? We've had some nice days in the 60's and move at about 50, a mixed bag this month.

Kay Update on surgical procedure

Hi All,

Thanks for all your support and prayers for my surgical procedure. I am sorry this is so late, but within four hours after leaving the hospital I started feeling ill. I developed a fever and very achy body. During the night my temperature went up. The next morning I called my pulmonologist in Austin and went to that hospital. They ran numerous tests but did not find any cause so just gave me an antibiotic. I developed severe diarrhea which I do from some antibiotics. I thought that I might have viral gastroenteritis. I still feel very achy, but my temperature is normal. I am also still cold all the time so perhaps I have not totally thawed out from the freezer CT scanner room. I won't know the results of the procedure until I have my next CT scan in April.

With thanks to all,

Norma

[Guest guest]

Hi Kay:

It usually runs in the 70s for high temperatures in the afternoons. A cool front came in this morning and dropped our temperature into the 60s for the weekend. Now the March winds have started. The wind bothers me so I wear a mask when I go for a walk to help with all that is blowing around. I like the weather in this part of Texas except the hot and humid summers. Then I want to go to Colorado to cool off.

Norma

To: bronchiectasis Sent: Fri, March 4, 2011 4:16:55 PMSubject: Re: Update on surgical procedure

Hi Norma,

That's a really good brand. Whatever works. I was pretty sure you'd know all about probiotics! It'll be nice to be off the anti's . Have a good weekend. Is it warm in Texas yet? We've had some nice days in the 60's and move at about 50, a mixed bag this month.

Kay Update on surgical procedure

Hi All,

Thanks for all your support and prayers for my surgical procedure. I am sorry this is so late, but within four hours after leaving the hospital I started feeling ill. I developed a fever and very achy body. During the night my temperature went up. The next morning I called my pulmonologist in Austin and went to that hospital. They ran numerous tests but did not find any cause so just gave me an antibiotic. I developed severe diarrhea which I do from some antibiotics. I thought that I might have viral gastroenteritis. I still feel very achy, but my temperature is normal. I am also still cold all the time so perhaps I have not totally thawed out from the freezer CT scanner room. I won't know the results of the procedure until I have my next CT scan in April.

With thanks to all,

Norma

[Guest guest]

Hi Norma! Hope you are better and that your test results will be good.

I'm very interested that you say that you use inhaled Tobramycin. I was told by

my doctor that most insurance companies (and Medicare) here in the US will not

pay for this except for Cystic Fibrosis patients.

Where are you located? If in the US, how were you able to get your insurance to

cover this?

Cheers!

Suzanne

[Guest guest]

Hi Suzanne,

Thanks Suzanne, I am feeling better now.

I only pay $3.00 for a 15-day supply with Medicare Part D. Medicare will no longer pay for Tobi. I was getting it free from a pharmacy in Florida from 2005 to 2007. As I understand it, the difference is that Tobi is the brand and is only used for only for inhalation, and Tobramycin can also be injected.

I live about 25 miles north of Austin, Texas.

Norma

To: bronchiectasis Sent: Sat, March 5, 2011 10:32:36 PMSubject: Re: Update on surgical procedure

Hi Norma! Hope you are better and that your test results will be good.I'm very interested that you say that you use inhaled Tobramycin. I was told by my doctor that most insurance companies (and Medicare) here in the US will not pay for this except for Cystic Fibrosis patients.Where are you located? If in the US, how were you able to get your insurance to cover this?Cheers!Suzanne

[Guest guest]

How interesting that Medicare Part D will pay for the inhaled Tobi, but most prescription plans will not. They will, however pay for IV tobrymician which must be done on an outpatient at the hospital for 14 days. Not nearly as cost efficient! Sent from my iPadSuzanne R Brown

Hi Suzanne,

Thanks Suzanne, I am feeling better now.

I only pay $3.00 for a 15-day supply with Medicare Part D. Medicare will no longer pay for Tobi. I was getting it free from a pharmacy in Florida from 2005 to 2007. As I understand it, the difference is that Tobi is the brand and is only used for only for inhalation, and Tobramycin can also be injected.

I live about 25 miles north of Austin, Texas.

Norma

To: bronchiectasis Sent: Sat, March 5, 2011 10:32:36 PMSubject: Re: Update on surgical procedure

Hi Norma! Hope you are better and that your test results will be good.I'm very interested that you say that you use inhaled Tobramycin. I was told by my doctor that most insurance companies (and Medicare) here in the US will not pay for this except for Cystic Fibrosis patients.Where are you located? If in the US, how were you able to get your insurance to cover this?Cheers!Suzanne

[Guest guest]

Hi Norma,

Not very cold where you live, which must be nice for you. That summer humidity would do me in. I think being raised in the southern SF Bay area has made me suffer in high hot humidity. It has one of the most perfect climates in the U.S. (that's why all the big tech companies located there: easy to draw employees to such a temperate year-round climate). By all means, spend summers in Colorado. We hope to go on a long RV trip with one daughter and her family this summer. They want to show their kids Yellowstone and the Black Hills. We took our kids all over when we lived in Utah for four yrs while they were young. Love the Inter-mountain area except that their beautiful snowy mountain winters lasted too long into Spring for us Californians!

Glad you're feeling more like yourself and working on your diet. Sweet things are so tasty, especially home made ones, darned difficult to cut back .

Kay Update on surgical procedure

Hi All,

Thanks for all your support and prayers for my surgical procedure. I am sorry this is so late, but within four hours after leaving the hospital I started feeling ill. I developed a fever and very achy body. During the night my temperature went up. The next morning I called my pulmonologist in Austin and went to that hospital. They ran numerous tests but did not find any cause so just gave me an antibiotic. I developed severe diarrhea which I do from some antibiotics. I thought that I might have viral gastroenteritis. I still feel very achy, but my temperature is normal. I am also still cold all the time so perhaps I have not totally thawed out from the freezer CT scanner room. I won't know the results of the procedure until I have my next CT scan in April.

With thanks to all,

Norma

[Guest guest]

Suzanne: Medicare, Part D will pay for the injectable Tobramycin that I use but not Tobi. I believe that Tobi is reserved for cystic fibrosis patients.

To: "bronchiectasis " <bronchiectasis >Sent: Sun, March 6, 2011 3:06:38 PMSubject: Re: Update on surgical procedure

How interesting that Medicare Part D will pay for the inhaled Tobi, but most prescription plans will not. They will, however pay for IV tobrymician which must be done on an outpatient at the hospital for 14 days. Not nearly as cost efficient! Sent from my iPad Suzanne R Brown

Hi Suzanne,

Thanks Suzanne, I am feeling better now.

I only pay $3.00 for a 15-day supply with Medicare Part D. Medicare will no longer pay for Tobi. I was getting it free from a pharmacy in Florida from 2005 to 2007. As I understand it, the difference is that Tobi is the brand and is only used for only for inhalation, and Tobramycin can also be injected.

I live about 25 miles north of Austin, Texas.

Norma

To: bronchiectasis Sent: Sat, March 5, 2011 10:32:36 PMSubject: Re: Update on surgical procedure

Hi Norma! Hope you are better and that your test results will be good.I'm very interested that you say that you use inhaled Tobramycin. I was told by my doctor that most insurance companies (and Medicare) here in the US will not pay for this except for Cystic Fibrosis patients.Where are you located? If in the US, how were you able to get your insurance to cover this?Cheers!Suzanne

Su

[Guest guest]

Okay - I'm totally confused, Norma!!! It's been that kind of day - turned off

the alarm and fell back to sleep for 2 more hours - missed church.

I thought you said you paid $3 for a 15-day supply of Tobi with Medicare Part D

(the prescription part). So this is the kind (Tobramycin) given through an IV?

Suzanne

[Guest guest]

MORE and MORE proof that U.S. insurance companies only care about MAKING money and the gov't run Medicare is @ least looking at ways to SAVE money.

My own 8yr old son has been denied his med in the 3rd appeal, citing the cost: My little boy is just "Not cost effective". He has been on the med for 2 years and now NOTHING!

We are self pay now for a drug called HypoTonic Saline. It brought on terrible coughing fits for the first month on it. All of a sudden, he seems to be coughing alot less. I wonder if there was a build-up of mucous from not having any med for 6 weeks, and the saline solution has been clearing it out?? I would guess that's likely. Maybe this HypoTonic Saline is actually going to allow us to continue seeing a positive change, as we were definitely seeing with the other med, Pulmozyme. I just want to go on record as saying:

I hate U.S. insurance companies, Especially United Health Care!! Not cost effective! We'll see about that!

Breathe Easy e

Hi Suzanne,

Thanks Suzanne, I am feeling better now.

I only pay $3.00 for a 15-day supply with Medicare Part D. Medicare will no longer pay for Tobi. I was getting it free from a pharmacy in Florida from 2005 to 2007. As I understand it, the difference is that Tobi is the brand and is only used for only for inhalation, and Tobramycin can also be injected.

I live about 25 miles north of Austin, Texas.

Norma

To: bronchiectasis Sent: Sat, March 5, 2011 10:32:36 PMSubject: Re: Update on surgical procedure

Hi Norma! Hope you are better and that your test results will be good.I'm very interested that you say that you use inhaled Tobramycin. I was told by my doctor that most insurance companies (and Medicare) here in the US will not pay for this except for Cystic Fibrosis patients.Where are you located? If in the US, how were you able to get your insurance to cover this?Cheers!Suzanne

Su

[Guest guest]

I'm sorry that I confused you. Since last May I am back on Tobramycin (the kind that can be given intravenously). Medicare (Part D) prescription drug plan covers all except $3.00 which I pay.

Where I probably confused you is when I mentioned that I was on Tobramycin from 2003 to 2005 and had to pay a high price for it as my insurance did not cover it. From 2005 to 2007 I was able to get Tobi free from a pharmacy in Florida. I located Tobi on the Internet and called and got it. They would have had to know that my diagnosis was not cystic fibrosis. Perhaps it was due to the fact that the economy was not as bad as it is now.

I know that there are some people who make their own hypertonic saline themselves. I would not try to do that. Last year when I was in the hospital with pseudomonas pneumonia one of the pulmonary doctors in my group of doctors prescribed it for use in the hospital. I found it irritating at first but later on it did not bother me.

I agree with you about insurance companies.

Norma

To: bronchiectasis Sent: Sun, March 6, 2011 5:57:50 PMSubject: Re: Update on surgical procedure

Okay - I'm totally confused, Norma!!! It's been that kind of day - turned off the alarm and fell back to sleep for 2 more hours - missed church.I thought you said you paid $3 for a 15-day supply of Tobi with Medicare Part D (the prescription part). So this is the kind (Tobramycin) given through an IV? Suzanne

[Guest guest]

Hi Suzanne,

My husband Barry is the one with bronchiectasis, and he had a sever infection about 1.5 yrs. ago and was given Tobramycin.  He had to have it approved and the Dr. verifying the reason for it's use before the rx insurance paid for it, otherwise we would have still been paying for it.  We live in NC

 

Jackie/Barry