Unbelievable

ladybug · Oct 20, 2009

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 · Oct 20, 2009

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 · Oct 20, 2009

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 · Oct 20, 2009

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 · Oct 20, 2009

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 · Oct 20, 2009

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 · Oct 20, 2009

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 · Oct 20, 2009

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 · Oct 20, 2009

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 · Oct 20, 2009

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....

Ratatosk · Oct 20, 2009

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 · Oct 20, 2009

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 · Oct 20, 2009

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 · Oct 20, 2009

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 · Oct 20, 2009

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.

Melissa75 · Oct 20, 2009

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 · Oct 20, 2009

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 · Oct 20, 2009

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 · Oct 20, 2009

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 · Oct 20, 2009

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.

Unbelievable

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