PDA

View Full Version : Unbelievable



ladybug
10-20-2009, 05:09 PM
Hey all...

I'm so frustrated and extremely depressed right now.

Remember how back in August I had to fight with my military doc to send in my culture for synergy testing? Well, she said she sent it in back on Sept. 10.

Today, my bronch results came back and I have a non mucoid p.a. that is resistant to everything. everything. wtf.

So, my nurse at my new clinic (I had switched from the military clinic cause we didn't exactly see eye to eye) called NY to see where we were with the synergy and guess what? It was never sent. Shocker. This was after I've been calling the nurse at the military CF center every week since that day to see the status on it and all she ever told me was that they hadn't gotten the results back yet.

So, now we're at square one and the nurse at my new clinic is saying there isn't anything they can treat with since I'm resistant to everything (well, except zosyn, to which i'm allergic, but they'd be willing to desensitize me)... But still, that would only be ONE medication.

Beside that, I feel absolutely helpless with regard to the synergy which I was assured was sent. It takes 6-8 weeks for this stuff and I'm sick NOW. We've already been waiting months when I should have been on treatment and now we'll have to wait another 2 months?!?

Do I have any rights? I'm thinking since its military healthcare, I don't. I mean, I can probably write a letter (which is absolutely worthless and will likely get someone a slap on the wrist), but to me this is negligent and malpractice. They assured me this was sent and I waited and waited and my FEV1 got lower and lower and now, when they want to admit me, the culture is no where to be found. My health will suffer because of this.

What are my options? Do I have any? If I"m resistant to everything and we won't have synergy for months, but I'm sick enough now to go in and getting worse (which the docs said I NEED to treat this exacerbation like now), what can I do???? Even my CF nurse said we're kinda "skrewed" if they don't have the synergy.

I'm just so depressed. All these couple months have been filled with has been awful awful news and sickness. I hate to whine, but I honestly don't know how much more I can take.... I mean, when you're essentially told you can't be treated due to a doc's mistake at another clinic, where do you go from there???

Thanks, everyone.

ladybug
10-20-2009, 05:09 PM
Hey all...

I'm so frustrated and extremely depressed right now.

Remember how back in August I had to fight with my military doc to send in my culture for synergy testing? Well, she said she sent it in back on Sept. 10.

Today, my bronch results came back and I have a non mucoid p.a. that is resistant to everything. everything. wtf.

So, my nurse at my new clinic (I had switched from the military clinic cause we didn't exactly see eye to eye) called NY to see where we were with the synergy and guess what? It was never sent. Shocker. This was after I've been calling the nurse at the military CF center every week since that day to see the status on it and all she ever told me was that they hadn't gotten the results back yet.

So, now we're at square one and the nurse at my new clinic is saying there isn't anything they can treat with since I'm resistant to everything (well, except zosyn, to which i'm allergic, but they'd be willing to desensitize me)... But still, that would only be ONE medication.

Beside that, I feel absolutely helpless with regard to the synergy which I was assured was sent. It takes 6-8 weeks for this stuff and I'm sick NOW. We've already been waiting months when I should have been on treatment and now we'll have to wait another 2 months?!?

Do I have any rights? I'm thinking since its military healthcare, I don't. I mean, I can probably write a letter (which is absolutely worthless and will likely get someone a slap on the wrist), but to me this is negligent and malpractice. They assured me this was sent and I waited and waited and my FEV1 got lower and lower and now, when they want to admit me, the culture is no where to be found. My health will suffer because of this.

What are my options? Do I have any? If I"m resistant to everything and we won't have synergy for months, but I'm sick enough now to go in and getting worse (which the docs said I NEED to treat this exacerbation like now), what can I do???? Even my CF nurse said we're kinda "skrewed" if they don't have the synergy.

I'm just so depressed. All these couple months have been filled with has been awful awful news and sickness. I hate to whine, but I honestly don't know how much more I can take.... I mean, when you're essentially told you can't be treated due to a doc's mistake at another clinic, where do you go from there???

Thanks, everyone.

ladybug
10-20-2009, 05:09 PM
Hey all...

I'm so frustrated and extremely depressed right now.

Remember how back in August I had to fight with my military doc to send in my culture for synergy testing? Well, she said she sent it in back on Sept. 10.

Today, my bronch results came back and I have a non mucoid p.a. that is resistant to everything. everything. wtf.

So, my nurse at my new clinic (I had switched from the military clinic cause we didn't exactly see eye to eye) called NY to see where we were with the synergy and guess what? It was never sent. Shocker. This was after I've been calling the nurse at the military CF center every week since that day to see the status on it and all she ever told me was that they hadn't gotten the results back yet.

So, now we're at square one and the nurse at my new clinic is saying there isn't anything they can treat with since I'm resistant to everything (well, except zosyn, to which i'm allergic, but they'd be willing to desensitize me)... But still, that would only be ONE medication.

Beside that, I feel absolutely helpless with regard to the synergy which I was assured was sent. It takes 6-8 weeks for this stuff and I'm sick NOW. We've already been waiting months when I should have been on treatment and now we'll have to wait another 2 months?!?

Do I have any rights? I'm thinking since its military healthcare, I don't. I mean, I can probably write a letter (which is absolutely worthless and will likely get someone a slap on the wrist), but to me this is negligent and malpractice. They assured me this was sent and I waited and waited and my FEV1 got lower and lower and now, when they want to admit me, the culture is no where to be found. My health will suffer because of this.

What are my options? Do I have any? If I"m resistant to everything and we won't have synergy for months, but I'm sick enough now to go in and getting worse (which the docs said I NEED to treat this exacerbation like now), what can I do???? Even my CF nurse said we're kinda "skrewed" if they don't have the synergy.

I'm just so depressed. All these couple months have been filled with has been awful awful news and sickness. I hate to whine, but I honestly don't know how much more I can take.... I mean, when you're essentially told you can't be treated due to a doc's mistake at another clinic, where do you go from there???

Thanks, everyone.

ladybug
10-20-2009, 05:09 PM
Hey all...

I'm so frustrated and extremely depressed right now.

Remember how back in August I had to fight with my military doc to send in my culture for synergy testing? Well, she said she sent it in back on Sept. 10.

Today, my bronch results came back and I have a non mucoid p.a. that is resistant to everything. everything. wtf.

So, my nurse at my new clinic (I had switched from the military clinic cause we didn't exactly see eye to eye) called NY to see where we were with the synergy and guess what? It was never sent. Shocker. This was after I've been calling the nurse at the military CF center every week since that day to see the status on it and all she ever told me was that they hadn't gotten the results back yet.

So, now we're at square one and the nurse at my new clinic is saying there isn't anything they can treat with since I'm resistant to everything (well, except zosyn, to which i'm allergic, but they'd be willing to desensitize me)... But still, that would only be ONE medication.

Beside that, I feel absolutely helpless with regard to the synergy which I was assured was sent. It takes 6-8 weeks for this stuff and I'm sick NOW. We've already been waiting months when I should have been on treatment and now we'll have to wait another 2 months?!?

Do I have any rights? I'm thinking since its military healthcare, I don't. I mean, I can probably write a letter (which is absolutely worthless and will likely get someone a slap on the wrist), but to me this is negligent and malpractice. They assured me this was sent and I waited and waited and my FEV1 got lower and lower and now, when they want to admit me, the culture is no where to be found. My health will suffer because of this.

What are my options? Do I have any? If I"m resistant to everything and we won't have synergy for months, but I'm sick enough now to go in and getting worse (which the docs said I NEED to treat this exacerbation like now), what can I do???? Even my CF nurse said we're kinda "skrewed" if they don't have the synergy.

I'm just so depressed. All these couple months have been filled with has been awful awful news and sickness. I hate to whine, but I honestly don't know how much more I can take.... I mean, when you're essentially told you can't be treated due to a doc's mistake at another clinic, where do you go from there???

Thanks, everyone.

ladybug
10-20-2009, 05:09 PM
Hey all...
<br />
<br />I'm so frustrated and extremely depressed right now.
<br />
<br />Remember how back in August I had to fight with my military doc to send in my culture for synergy testing? Well, she said she sent it in back on Sept. 10.
<br />
<br />Today, my bronch results came back and I have a non mucoid p.a. that is resistant to everything. everything. wtf.
<br />
<br />So, my nurse at my new clinic (I had switched from the military clinic cause we didn't exactly see eye to eye) called NY to see where we were with the synergy and guess what? It was never sent. Shocker. This was after I've been calling the nurse at the military CF center every week since that day to see the status on it and all she ever told me was that they hadn't gotten the results back yet.
<br />
<br />So, now we're at square one and the nurse at my new clinic is saying there isn't anything they can treat with since I'm resistant to everything (well, except zosyn, to which i'm allergic, but they'd be willing to desensitize me)... But still, that would only be ONE medication.
<br />
<br />Beside that, I feel absolutely helpless with regard to the synergy which I was assured was sent. It takes 6-8 weeks for this stuff and I'm sick NOW. We've already been waiting months when I should have been on treatment and now we'll have to wait another 2 months?!?
<br />
<br />Do I have any rights? I'm thinking since its military healthcare, I don't. I mean, I can probably write a letter (which is absolutely worthless and will likely get someone a slap on the wrist), but to me this is negligent and malpractice. They assured me this was sent and I waited and waited and my FEV1 got lower and lower and now, when they want to admit me, the culture is no where to be found. My health will suffer because of this.
<br />
<br />What are my options? Do I have any? If I"m resistant to everything and we won't have synergy for months, but I'm sick enough now to go in and getting worse (which the docs said I NEED to treat this exacerbation like now), what can I do???? Even my CF nurse said we're kinda "skrewed" if they don't have the synergy.
<br />
<br />I'm just so depressed. All these couple months have been filled with has been awful awful news and sickness. I hate to whine, but I honestly don't know how much more I can take.... I mean, when you're essentially told you can't be treated due to a doc's mistake at another clinic, where do you go from there???
<br />
<br />Thanks, everyone.

ladybug
10-20-2009, 05:26 PM
p.s. I think the worst part of this is that I try so hard. I exercise and am extremely compliant every day and NEVER miss a treatment unless I have a bleed.

I have always been careful about not going on abx unless necessary. Usually, this was once a year. The past few years it was every 6 months or so. I slowly saw my sensitivities worsen, but would never have expected a completely resistant strain after abx every 6 months. Aren't there people who go on abx. every 3-4 months and they're sensitive to lots of stuff? It makes no sense.

I think all of this is just so hard to take cause until this year I've stayed relatively healthy and now I'm having bleeds, fevers, de-satting, hypertension, tachycardia, infection, MAC, fungus, etc. I worked so hard all my life to maintain and was doing well with that and now this....

I know its the progression of CF, but such huge dips so quickly that cannot be treated and so many issues all of sudden.... Its just like all of a sudden I can't fight ANY part of CF anymore and its very frustrating!!!

Thanks for listening to me whine....

ladybug
10-20-2009, 05:26 PM
p.s. I think the worst part of this is that I try so hard. I exercise and am extremely compliant every day and NEVER miss a treatment unless I have a bleed.

I have always been careful about not going on abx unless necessary. Usually, this was once a year. The past few years it was every 6 months or so. I slowly saw my sensitivities worsen, but would never have expected a completely resistant strain after abx every 6 months. Aren't there people who go on abx. every 3-4 months and they're sensitive to lots of stuff? It makes no sense.

I think all of this is just so hard to take cause until this year I've stayed relatively healthy and now I'm having bleeds, fevers, de-satting, hypertension, tachycardia, infection, MAC, fungus, etc. I worked so hard all my life to maintain and was doing well with that and now this....

I know its the progression of CF, but such huge dips so quickly that cannot be treated and so many issues all of sudden.... Its just like all of a sudden I can't fight ANY part of CF anymore and its very frustrating!!!

Thanks for listening to me whine....

ladybug
10-20-2009, 05:26 PM
p.s. I think the worst part of this is that I try so hard. I exercise and am extremely compliant every day and NEVER miss a treatment unless I have a bleed.

I have always been careful about not going on abx unless necessary. Usually, this was once a year. The past few years it was every 6 months or so. I slowly saw my sensitivities worsen, but would never have expected a completely resistant strain after abx every 6 months. Aren't there people who go on abx. every 3-4 months and they're sensitive to lots of stuff? It makes no sense.

I think all of this is just so hard to take cause until this year I've stayed relatively healthy and now I'm having bleeds, fevers, de-satting, hypertension, tachycardia, infection, MAC, fungus, etc. I worked so hard all my life to maintain and was doing well with that and now this....

I know its the progression of CF, but such huge dips so quickly that cannot be treated and so many issues all of sudden.... Its just like all of a sudden I can't fight ANY part of CF anymore and its very frustrating!!!

Thanks for listening to me whine....

ladybug
10-20-2009, 05:26 PM
p.s. I think the worst part of this is that I try so hard. I exercise and am extremely compliant every day and NEVER miss a treatment unless I have a bleed.

I have always been careful about not going on abx unless necessary. Usually, this was once a year. The past few years it was every 6 months or so. I slowly saw my sensitivities worsen, but would never have expected a completely resistant strain after abx every 6 months. Aren't there people who go on abx. every 3-4 months and they're sensitive to lots of stuff? It makes no sense.

I think all of this is just so hard to take cause until this year I've stayed relatively healthy and now I'm having bleeds, fevers, de-satting, hypertension, tachycardia, infection, MAC, fungus, etc. I worked so hard all my life to maintain and was doing well with that and now this....

I know its the progression of CF, but such huge dips so quickly that cannot be treated and so many issues all of sudden.... Its just like all of a sudden I can't fight ANY part of CF anymore and its very frustrating!!!

Thanks for listening to me whine....

ladybug
10-20-2009, 05:26 PM
p.s. I think the worst part of this is that I try so hard. I exercise and am extremely compliant every day and NEVER miss a treatment unless I have a bleed.
<br />
<br />I have always been careful about not going on abx unless necessary. Usually, this was once a year. The past few years it was every 6 months or so. I slowly saw my sensitivities worsen, but would never have expected a completely resistant strain after abx every 6 months. Aren't there people who go on abx. every 3-4 months and they're sensitive to lots of stuff? It makes no sense.
<br />
<br />I think all of this is just so hard to take cause until this year I've stayed relatively healthy and now I'm having bleeds, fevers, de-satting, hypertension, tachycardia, infection, MAC, fungus, etc. I worked so hard all my life to maintain and was doing well with that and now this....
<br />
<br />I know its the progression of CF, but such huge dips so quickly that cannot be treated and so many issues all of sudden.... Its just like all of a sudden I can't fight ANY part of CF anymore and its very frustrating!!!
<br />
<br />Thanks for listening to me whine....

Ratatosk
10-20-2009, 05:50 PM
That is horrible! I guess if it'd make you feel better, send a nasty-gram. And maybe it'll help others who still attend the clinic and are gettng subpar care.

Write a letter indicating the facts, that you've called weekly and were told by a specific individual that they were still waiting for the results. Could it be an issue with one individual dropping the ball.

How frustrating! Especially when you were doing everything you were supposed to and someone messed up big time.

Ratatosk
10-20-2009, 05:50 PM
That is horrible! I guess if it'd make you feel better, send a nasty-gram. And maybe it'll help others who still attend the clinic and are gettng subpar care.

Write a letter indicating the facts, that you've called weekly and were told by a specific individual that they were still waiting for the results. Could it be an issue with one individual dropping the ball.

How frustrating! Especially when you were doing everything you were supposed to and someone messed up big time.

Ratatosk
10-20-2009, 05:50 PM
That is horrible! I guess if it'd make you feel better, send a nasty-gram. And maybe it'll help others who still attend the clinic and are gettng subpar care.

Write a letter indicating the facts, that you've called weekly and were told by a specific individual that they were still waiting for the results. Could it be an issue with one individual dropping the ball.

How frustrating! Especially when you were doing everything you were supposed to and someone messed up big time.

Ratatosk
10-20-2009, 05:50 PM
That is horrible! I guess if it'd make you feel better, send a nasty-gram. And maybe it'll help others who still attend the clinic and are gettng subpar care.

Write a letter indicating the facts, that you've called weekly and were told by a specific individual that they were still waiting for the results. Could it be an issue with one individual dropping the ball.

How frustrating! Especially when you were doing everything you were supposed to and someone messed up big time.

Ratatosk
10-20-2009, 05:50 PM
That is horrible! I guess if it'd make you feel better, send a nasty-gram. And maybe it'll help others who still attend the clinic and are gettng subpar care.
<br />
<br />Write a letter indicating the facts, that you've called weekly and were told by a specific individual that they were still waiting for the results. Could it be an issue with one individual dropping the ball.
<br />
<br />How frustrating! Especially when you were doing everything you were supposed to and someone messed up big time.

Melissa75
10-20-2009, 06:04 PM
OMG grrrrrrr I am livid on your behalf.

Here is what you might do: write a letter from the point of view of your current, good doctor...e.g.

It has come to my attention that my patient Sonia ____ was misled into believing that her sputum was being tested for antibiotic.... She called numerous time to check on the status and was told... She has a severe infection which we are now delayed close to two months in treating....due to the negligence....

So then show it to your doctor and ask if he/she would be willing to sign the letter and send it. Explain that it will mean more coming from a medical professional.

I don't know if it will work, but most drs are too busy to write this sort of this, but if you make it professional, they might sign and send it.

Melissa75
10-20-2009, 06:04 PM
OMG grrrrrrr I am livid on your behalf.

Here is what you might do: write a letter from the point of view of your current, good doctor...e.g.

It has come to my attention that my patient Sonia ____ was misled into believing that her sputum was being tested for antibiotic.... She called numerous time to check on the status and was told... She has a severe infection which we are now delayed close to two months in treating....due to the negligence....

So then show it to your doctor and ask if he/she would be willing to sign the letter and send it. Explain that it will mean more coming from a medical professional.

I don't know if it will work, but most drs are too busy to write this sort of this, but if you make it professional, they might sign and send it.

Melissa75
10-20-2009, 06:04 PM
OMG grrrrrrr I am livid on your behalf.

Here is what you might do: write a letter from the point of view of your current, good doctor...e.g.

It has come to my attention that my patient Sonia ____ was misled into believing that her sputum was being tested for antibiotic.... She called numerous time to check on the status and was told... She has a severe infection which we are now delayed close to two months in treating....due to the negligence....

So then show it to your doctor and ask if he/she would be willing to sign the letter and send it. Explain that it will mean more coming from a medical professional.

I don't know if it will work, but most drs are too busy to write this sort of this, but if you make it professional, they might sign and send it.

Melissa75
10-20-2009, 06:04 PM
OMG grrrrrrr I am livid on your behalf.

Here is what you might do: write a letter from the point of view of your current, good doctor...e.g.

It has come to my attention that my patient Sonia ____ was misled into believing that her sputum was being tested for antibiotic.... She called numerous time to check on the status and was told... She has a severe infection which we are now delayed close to two months in treating....due to the negligence....

So then show it to your doctor and ask if he/she would be willing to sign the letter and send it. Explain that it will mean more coming from a medical professional.

I don't know if it will work, but most drs are too busy to write this sort of this, but if you make it professional, they might sign and send it.

Melissa75
10-20-2009, 06:04 PM
OMG grrrrrrr I am livid on your behalf.
<br />
<br />Here is what you might do: write a letter from the point of view of your current, good doctor...e.g.
<br />
<br />It has come to my attention that my patient Sonia ____ was misled into believing that her sputum was being tested for antibiotic.... She called numerous time to check on the status and was told... She has a severe infection which we are now delayed close to two months in treating....due to the negligence....
<br />
<br />So then show it to your doctor and ask if he/she would be willing to sign the letter and send it. Explain that it will mean more coming from a medical professional.
<br />
<br />I don't know if it will work, but most drs are too busy to write this sort of this, but if you make it professional, they might sign and send it.

lilywing
10-20-2009, 06:16 PM
hi ladybug,
how completely frustrating!!! we rely on our medical professionals to do their job, to follow through on a timely basis, to do the things we can't. like synergy testing. i've been in a similar situation. last year, i was needing treatment and my doctors put me on the usual iv drugs (tobra and ceftaz). i struggled through 3 weeks with very little improvement. at the end, my final sputum sample showed resistance across the board, hence no significant improvement. "oh - it looks like you're resistant...hmmm", the answer given by my doctor. i had assumed that they prescribed the meds based on my sensitivities. turns out, things aren't always done they way they should be. and so was my lesson no. 267 on being an informed, proactive patient. but being informed and proactive is not always enough, unfortunately.

i TRY not to be a giant pain in the ass to my doctors and clinic, but sometimes i have to be!! The bottom line is: no one cares about my health as much as i do.

on the upside, my complete resistance to antibiotics has evolved into a few sensitivies. sometimes i've had great results, and other times, not so much.
sensitivity/resistance is not so black and white as it may seem.

please don't lose hope, and do whatever you feel you need to do to "fix" this.

i never underestimate the power of a well-written letter. whether it gets things done, makes people aware, or simply gets all your feelings out.

take care,
kelly

lilywing
10-20-2009, 06:16 PM
hi ladybug,
how completely frustrating!!! we rely on our medical professionals to do their job, to follow through on a timely basis, to do the things we can't. like synergy testing. i've been in a similar situation. last year, i was needing treatment and my doctors put me on the usual iv drugs (tobra and ceftaz). i struggled through 3 weeks with very little improvement. at the end, my final sputum sample showed resistance across the board, hence no significant improvement. "oh - it looks like you're resistant...hmmm", the answer given by my doctor. i had assumed that they prescribed the meds based on my sensitivities. turns out, things aren't always done they way they should be. and so was my lesson no. 267 on being an informed, proactive patient. but being informed and proactive is not always enough, unfortunately.

i TRY not to be a giant pain in the ass to my doctors and clinic, but sometimes i have to be!! The bottom line is: no one cares about my health as much as i do.

on the upside, my complete resistance to antibiotics has evolved into a few sensitivies. sometimes i've had great results, and other times, not so much.
sensitivity/resistance is not so black and white as it may seem.

please don't lose hope, and do whatever you feel you need to do to "fix" this.

i never underestimate the power of a well-written letter. whether it gets things done, makes people aware, or simply gets all your feelings out.

take care,
kelly

lilywing
10-20-2009, 06:16 PM
hi ladybug,
how completely frustrating!!! we rely on our medical professionals to do their job, to follow through on a timely basis, to do the things we can't. like synergy testing. i've been in a similar situation. last year, i was needing treatment and my doctors put me on the usual iv drugs (tobra and ceftaz). i struggled through 3 weeks with very little improvement. at the end, my final sputum sample showed resistance across the board, hence no significant improvement. "oh - it looks like you're resistant...hmmm", the answer given by my doctor. i had assumed that they prescribed the meds based on my sensitivities. turns out, things aren't always done they way they should be. and so was my lesson no. 267 on being an informed, proactive patient. but being informed and proactive is not always enough, unfortunately.

i TRY not to be a giant pain in the ass to my doctors and clinic, but sometimes i have to be!! The bottom line is: no one cares about my health as much as i do.

on the upside, my complete resistance to antibiotics has evolved into a few sensitivies. sometimes i've had great results, and other times, not so much.
sensitivity/resistance is not so black and white as it may seem.

please don't lose hope, and do whatever you feel you need to do to "fix" this.

i never underestimate the power of a well-written letter. whether it gets things done, makes people aware, or simply gets all your feelings out.

take care,
kelly

lilywing
10-20-2009, 06:16 PM
hi ladybug,
how completely frustrating!!! we rely on our medical professionals to do their job, to follow through on a timely basis, to do the things we can't. like synergy testing. i've been in a similar situation. last year, i was needing treatment and my doctors put me on the usual iv drugs (tobra and ceftaz). i struggled through 3 weeks with very little improvement. at the end, my final sputum sample showed resistance across the board, hence no significant improvement. "oh - it looks like you're resistant...hmmm", the answer given by my doctor. i had assumed that they prescribed the meds based on my sensitivities. turns out, things aren't always done they way they should be. and so was my lesson no. 267 on being an informed, proactive patient. but being informed and proactive is not always enough, unfortunately.

i TRY not to be a giant pain in the ass to my doctors and clinic, but sometimes i have to be!! The bottom line is: no one cares about my health as much as i do.

on the upside, my complete resistance to antibiotics has evolved into a few sensitivies. sometimes i've had great results, and other times, not so much.
sensitivity/resistance is not so black and white as it may seem.

please don't lose hope, and do whatever you feel you need to do to "fix" this.

i never underestimate the power of a well-written letter. whether it gets things done, makes people aware, or simply gets all your feelings out.

take care,
kelly

lilywing
10-20-2009, 06:16 PM
hi ladybug,
<br />how completely frustrating!!! we rely on our medical professionals to do their job, to follow through on a timely basis, to do the things we can't. like synergy testing. i've been in a similar situation. last year, i was needing treatment and my doctors put me on the usual iv drugs (tobra and ceftaz). i struggled through 3 weeks with very little improvement. at the end, my final sputum sample showed resistance across the board, hence no significant improvement. "oh - it looks like you're resistant...hmmm", the answer given by my doctor. i had assumed that they prescribed the meds based on my sensitivities. turns out, things aren't always done they way they should be. and so was my lesson no. 267 on being an informed, proactive patient. but being informed and proactive is not always enough, unfortunately.
<br />
<br />i TRY not to be a giant pain in the ass to my doctors and clinic, but sometimes i have to be!! The bottom line is: no one cares about my health as much as i do.
<br />
<br />on the upside, my complete resistance to antibiotics has evolved into a few sensitivies. sometimes i've had great results, and other times, not so much.
<br />sensitivity/resistance is not so black and white as it may seem.
<br />
<br />please don't lose hope, and do whatever you feel you need to do to "fix" this.
<br />
<br />i never underestimate the power of a well-written letter. whether it gets things done, makes people aware, or simply gets all your feelings out.
<br />
<br />take care,
<br />kelly

jdubbs
10-20-2009, 09:11 PM
Hi Ladybug (Sonia) -

That sounds awful. Keep fighting, so when you do get the synergy tests back, or your bugs become sensitive again, you'll be in the best possible shape. Don't give up. There was just a preclinical study released the other day about a new potential therapy against resistant bugs. The link is pasted below.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.nanowerk.com/news/newsid=13090.php
">http://www.nanowerk.com/news/newsid=13090.php
</a>
Who knows, maybe you could track down a clinical trial. I know that's not really much help, and if I were in your shoes, I'd be extremely angry. So, whine all you want to.

Hang in there.

-James

jdubbs
10-20-2009, 09:11 PM
Hi Ladybug (Sonia) -

That sounds awful. Keep fighting, so when you do get the synergy tests back, or your bugs become sensitive again, you'll be in the best possible shape. Don't give up. There was just a preclinical study released the other day about a new potential therapy against resistant bugs. The link is pasted below.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.nanowerk.com/news/newsid=13090.php
">http://www.nanowerk.com/news/newsid=13090.php
</a>
Who knows, maybe you could track down a clinical trial. I know that's not really much help, and if I were in your shoes, I'd be extremely angry. So, whine all you want to.

Hang in there.

-James

jdubbs
10-20-2009, 09:11 PM
Hi Ladybug (Sonia) -

That sounds awful. Keep fighting, so when you do get the synergy tests back, or your bugs become sensitive again, you'll be in the best possible shape. Don't give up. There was just a preclinical study released the other day about a new potential therapy against resistant bugs. The link is pasted below.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.nanowerk.com/news/newsid=13090.php
">http://www.nanowerk.com/news/newsid=13090.php
</a>
Who knows, maybe you could track down a clinical trial. I know that's not really much help, and if I were in your shoes, I'd be extremely angry. So, whine all you want to.

Hang in there.

-James

jdubbs
10-20-2009, 09:11 PM
Hi Ladybug (Sonia) -

That sounds awful. Keep fighting, so when you do get the synergy tests back, or your bugs become sensitive again, you'll be in the best possible shape. Don't give up. There was just a preclinical study released the other day about a new potential therapy against resistant bugs. The link is pasted below.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.nanowerk.com/news/newsid=13090.php
">http://www.nanowerk.com/news/newsid=13090.php
</a>
Who knows, maybe you could track down a clinical trial. I know that's not really much help, and if I were in your shoes, I'd be extremely angry. So, whine all you want to.

Hang in there.

-James

jdubbs
10-20-2009, 09:11 PM
Hi Ladybug (Sonia) -
<br />
<br />That sounds awful. Keep fighting, so when you do get the synergy tests back, or your bugs become sensitive again, you'll be in the best possible shape. Don't give up. There was just a preclinical study released the other day about a new potential therapy against resistant bugs. The link is pasted below.
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.nanowerk.com/news/newsid=13090.php
">http://www.nanowerk.com/news/newsid=13090.php
</a><br />
<br />Who knows, maybe you could track down a clinical trial. I know that's not really much help, and if I were in your shoes, I'd be extremely angry. So, whine all you want to.
<br />
<br />Hang in there.
<br />
<br />-James

Jeana
10-21-2009, 12:26 AM
Wow! I feel for you. Being a military brat myself, I have seen my share of military messups, but this sounds like deliberate misleading. Anyway, I would get the desensitization done for now. I have heard some positive comments about it in previous posts. I agree with Melissa, that I would write a professional sounding letter and see if your new doctor would be willing to sign it. I did that for my doctor and he made two tiny changes in wording and then sent that to my employer when I needed an exception on the sick leave bank (intermittant leave rather than in a row). Good luck!

Jeana
10-21-2009, 12:26 AM
Wow! I feel for you. Being a military brat myself, I have seen my share of military messups, but this sounds like deliberate misleading. Anyway, I would get the desensitization done for now. I have heard some positive comments about it in previous posts. I agree with Melissa, that I would write a professional sounding letter and see if your new doctor would be willing to sign it. I did that for my doctor and he made two tiny changes in wording and then sent that to my employer when I needed an exception on the sick leave bank (intermittant leave rather than in a row). Good luck!

Jeana
10-21-2009, 12:26 AM
Wow! I feel for you. Being a military brat myself, I have seen my share of military messups, but this sounds like deliberate misleading. Anyway, I would get the desensitization done for now. I have heard some positive comments about it in previous posts. I agree with Melissa, that I would write a professional sounding letter and see if your new doctor would be willing to sign it. I did that for my doctor and he made two tiny changes in wording and then sent that to my employer when I needed an exception on the sick leave bank (intermittant leave rather than in a row). Good luck!

Jeana
10-21-2009, 12:26 AM
Wow! I feel for you. Being a military brat myself, I have seen my share of military messups, but this sounds like deliberate misleading. Anyway, I would get the desensitization done for now. I have heard some positive comments about it in previous posts. I agree with Melissa, that I would write a professional sounding letter and see if your new doctor would be willing to sign it. I did that for my doctor and he made two tiny changes in wording and then sent that to my employer when I needed an exception on the sick leave bank (intermittant leave rather than in a row). Good luck!

Jeana
10-21-2009, 12:26 AM
Wow! I feel for you. Being a military brat myself, I have seen my share of military messups, but this sounds like deliberate misleading. Anyway, I would get the desensitization done for now. I have heard some positive comments about it in previous posts. I agree with Melissa, that I would write a professional sounding letter and see if your new doctor would be willing to sign it. I did that for my doctor and he made two tiny changes in wording and then sent that to my employer when I needed an exception on the sick leave bank (intermittant leave rather than in a row). Good luck!

ladybug
10-21-2009, 01:19 AM
thanks, everyone. it appears the culture was sent from the military hospital afterall. it has a tracking number AND was signed that it was delivered (overnighted) to columbia. so, now its columbia's issue, and whomever signed for it is responsible if somehow its lost. the fault is not the biggest issue here. it is the fact if they can't find this thing, i can't get treatment this week.

i'm still a little irked that i called and called to the military hosp. and no one bothered to just make a quick call to columbia to see the status, but i guess that's asking too much to make SURE they got it. let's just wait 6+ weeks and then find out that its lost.

thanks for your support. hopefully tomorrow columbia will have some answers but they looked up my name with several spellings (just in case) and nothing showed up today so i have a feeling tomorrow won't be any more fruitful. blah.

ladybug
10-21-2009, 01:19 AM
thanks, everyone. it appears the culture was sent from the military hospital afterall. it has a tracking number AND was signed that it was delivered (overnighted) to columbia. so, now its columbia's issue, and whomever signed for it is responsible if somehow its lost. the fault is not the biggest issue here. it is the fact if they can't find this thing, i can't get treatment this week.

i'm still a little irked that i called and called to the military hosp. and no one bothered to just make a quick call to columbia to see the status, but i guess that's asking too much to make SURE they got it. let's just wait 6+ weeks and then find out that its lost.

thanks for your support. hopefully tomorrow columbia will have some answers but they looked up my name with several spellings (just in case) and nothing showed up today so i have a feeling tomorrow won't be any more fruitful. blah.

ladybug
10-21-2009, 01:19 AM
thanks, everyone. it appears the culture was sent from the military hospital afterall. it has a tracking number AND was signed that it was delivered (overnighted) to columbia. so, now its columbia's issue, and whomever signed for it is responsible if somehow its lost. the fault is not the biggest issue here. it is the fact if they can't find this thing, i can't get treatment this week.

i'm still a little irked that i called and called to the military hosp. and no one bothered to just make a quick call to columbia to see the status, but i guess that's asking too much to make SURE they got it. let's just wait 6+ weeks and then find out that its lost.

thanks for your support. hopefully tomorrow columbia will have some answers but they looked up my name with several spellings (just in case) and nothing showed up today so i have a feeling tomorrow won't be any more fruitful. blah.

ladybug
10-21-2009, 01:19 AM
thanks, everyone. it appears the culture was sent from the military hospital afterall. it has a tracking number AND was signed that it was delivered (overnighted) to columbia. so, now its columbia's issue, and whomever signed for it is responsible if somehow its lost. the fault is not the biggest issue here. it is the fact if they can't find this thing, i can't get treatment this week.

i'm still a little irked that i called and called to the military hosp. and no one bothered to just make a quick call to columbia to see the status, but i guess that's asking too much to make SURE they got it. let's just wait 6+ weeks and then find out that its lost.

thanks for your support. hopefully tomorrow columbia will have some answers but they looked up my name with several spellings (just in case) and nothing showed up today so i have a feeling tomorrow won't be any more fruitful. blah.

ladybug
10-21-2009, 01:19 AM
thanks, everyone. it appears the culture was sent from the military hospital afterall. it has a tracking number AND was signed that it was delivered (overnighted) to columbia. so, now its columbia's issue, and whomever signed for it is responsible if somehow its lost. the fault is not the biggest issue here. it is the fact if they can't find this thing, i can't get treatment this week.
<br />
<br />i'm still a little irked that i called and called to the military hosp. and no one bothered to just make a quick call to columbia to see the status, but i guess that's asking too much to make SURE they got it. let's just wait 6+ weeks and then find out that its lost.
<br />
<br />thanks for your support. hopefully tomorrow columbia will have some answers but they looked up my name with several spellings (just in case) and nothing showed up today so i have a feeling tomorrow won't be any more fruitful. blah.

ladybug
10-21-2009, 06:49 PM
Just a quick update... They found my culture at Columbia!!! It was received Sept 10. They are still working on it so its not done and this is the 6th week. So, will keep waiting. I'm just so happy someone found it!

ladybug
10-21-2009, 06:49 PM
Just a quick update... They found my culture at Columbia!!! It was received Sept 10. They are still working on it so its not done and this is the 6th week. So, will keep waiting. I'm just so happy someone found it!

ladybug
10-21-2009, 06:49 PM
Just a quick update... They found my culture at Columbia!!! It was received Sept 10. They are still working on it so its not done and this is the 6th week. So, will keep waiting. I'm just so happy someone found it!

ladybug
10-21-2009, 06:49 PM
Just a quick update... They found my culture at Columbia!!! It was received Sept 10. They are still working on it so its not done and this is the 6th week. So, will keep waiting. I'm just so happy someone found it!

ladybug
10-21-2009, 06:49 PM
Just a quick update... They found my culture at Columbia!!! It was received Sept 10. They are still working on it so its not done and this is the 6th week. So, will keep waiting. I'm just so happy someone found it!

Ratatosk
10-21-2009, 07:09 PM
Yea! Hopefully they'll get back to your clinic with answers soon!

Ratatosk
10-21-2009, 07:09 PM
Yea! Hopefully they'll get back to your clinic with answers soon!

Ratatosk
10-21-2009, 07:09 PM
Yea! Hopefully they'll get back to your clinic with answers soon!

Ratatosk
10-21-2009, 07:09 PM
Yea! Hopefully they'll get back to your clinic with answers soon!

Ratatosk
10-21-2009, 07:09 PM
Yea! Hopefully they'll get back to your clinic with answers soon!

ladybug
10-21-2009, 07:16 PM
nevermind... the nurse just called and synergies are in! we're starting tobra and ceftaz (i'm ALWAYS on these two) probably on monday (when DH is back from training). they suggested this over desensitizing at this point since that would involve more risk than just doing the synergistic abx.

since this is from my culture in august and NOT the bronch, i'm hoping the results are the same and the p.a. causing problems is treated successfully.

thanks everyone for all your comments and warm wishes. will keep you posted.... <img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
10-21-2009, 07:16 PM
nevermind... the nurse just called and synergies are in! we're starting tobra and ceftaz (i'm ALWAYS on these two) probably on monday (when DH is back from training). they suggested this over desensitizing at this point since that would involve more risk than just doing the synergistic abx.

since this is from my culture in august and NOT the bronch, i'm hoping the results are the same and the p.a. causing problems is treated successfully.

thanks everyone for all your comments and warm wishes. will keep you posted.... <img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
10-21-2009, 07:16 PM
nevermind... the nurse just called and synergies are in! we're starting tobra and ceftaz (i'm ALWAYS on these two) probably on monday (when DH is back from training). they suggested this over desensitizing at this point since that would involve more risk than just doing the synergistic abx.

since this is from my culture in august and NOT the bronch, i'm hoping the results are the same and the p.a. causing problems is treated successfully.

thanks everyone for all your comments and warm wishes. will keep you posted.... <img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
10-21-2009, 07:16 PM
nevermind... the nurse just called and synergies are in! we're starting tobra and ceftaz (i'm ALWAYS on these two) probably on monday (when DH is back from training). they suggested this over desensitizing at this point since that would involve more risk than just doing the synergistic abx.

since this is from my culture in august and NOT the bronch, i'm hoping the results are the same and the p.a. causing problems is treated successfully.

thanks everyone for all your comments and warm wishes. will keep you posted.... <img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
10-21-2009, 07:16 PM
nevermind... the nurse just called and synergies are in! we're starting tobra and ceftaz (i'm ALWAYS on these two) probably on monday (when DH is back from training). they suggested this over desensitizing at this point since that would involve more risk than just doing the synergistic abx.
<br />
<br />since this is from my culture in august and NOT the bronch, i'm hoping the results are the same and the p.a. causing problems is treated successfully.
<br />
<br />thanks everyone for all your comments and warm wishes. will keep you posted.... <img src="i/expressions/face-icon-small-smile.gif" border="0">