WHAT DID YOU DO

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>wanderlost</b></i>

My mom still asks if I have remembered my enzymes. I know, as a mom myself, that this is out of love and concern, but it still annoys me and I still give snippy remarks like,"no, I've decided I just don't need them anymore." It's just because it's my mom...what can I say...my kids will probably do the same to me - but as moms we just keep plugging away.</end quote></div>

wow, i'm fortunate that my mom isn't annoying like that. that would drive me up a wall....

under 18, i can understand. after that, nagging is not all right.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>wanderlost</b></i>

My mom still asks if I have remembered my enzymes. I know, as a mom myself, that this is out of love and concern, but it still annoys me and I still give snippy remarks like,"no, I've decided I just don't need them anymore." It's just because it's my mom...what can I say...my kids will probably do the same to me - but as moms we just keep plugging away.</end quote></div>

wow, i'm fortunate that my mom isn't annoying like that. that would drive me up a wall....

under 18, i can understand. after that, nagging is not all right.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>wanderlost</b></i>

My mom still asks if I have remembered my enzymes. I know, as a mom myself, that this is out of love and concern, but it still annoys me and I still give snippy remarks like,"no, I've decided I just don't need them anymore." It's just because it's my mom...what can I say...my kids will probably do the same to me - but as moms we just keep plugging away.</end quote></div>

wow, i'm fortunate that my mom isn't annoying like that. that would drive me up a wall....

under 18, i can understand. after that, nagging is not all right.

 

[jfarel]

My only issues of non-compliance came w/ manual chest pt. After about age 8 or nine I really fought it. I was so active physically (and i was homeschooled, so I didn't have to sit in a classroom 8 hours a day) that I don't think it affected me as a child. Once I got the vest I always did it at least 30 minutes a day. Biggest issues for me was that I felt pretty normal until the last 4 or 5 years. I'm now 26.

Here the thing: I was never really hospitalized or on iv's until this last year. However, my pft's stink (30's) and have been declining several percentage points a year for the last 10 years I would guess. Until the last 2 or 3 year's I knew very little about cf or pft's even though I had done them religiously every 3 months at my clinic since I was a child.

The doctor's never explained (bluntly) the importance of pft's and I never saw a chart showing them dropping. I still felt fine (in my estimation). During college I did little to know exercise and was always afraid of doing research about cf because I knew I would start reading about death and get scared.

Since I've been sicker the last couple year I've been very proactive about research and treatments and have exercised religiously. We'll now my pft's are pretty stable and are starting to go up.

I just wish in hindsight I had understood this while I was in college. It would have scared the crap out of me, but I would have exercised and eaten right. The doctor's always told me to eat high cal, but I never understood the correlation between weight gain and pft's. Or even what pft's were for that matter. For all I knew 40 percent was almost normal. Doctor's were always quick to praise me say how well I was doing, I wish now they had tried to scare me.

I played every sport in high school and this no doubt kept me healthy, but as I said, in college I gave all this up (four years w/ very little exercise) I just wish I had known the consequences.

Regardless of how healthy you feel as a teen or young adult, realize it can change and go down hill if you don't take care of yourself.

 

[jfarel]

My only issues of non-compliance came w/ manual chest pt. After about age 8 or nine I really fought it. I was so active physically (and i was homeschooled, so I didn't have to sit in a classroom 8 hours a day) that I don't think it affected me as a child. Once I got the vest I always did it at least 30 minutes a day. Biggest issues for me was that I felt pretty normal until the last 4 or 5 years. I'm now 26.

Here the thing: I was never really hospitalized or on iv's until this last year. However, my pft's stink (30's) and have been declining several percentage points a year for the last 10 years I would guess. Until the last 2 or 3 year's I knew very little about cf or pft's even though I had done them religiously every 3 months at my clinic since I was a child.

The doctor's never explained (bluntly) the importance of pft's and I never saw a chart showing them dropping. I still felt fine (in my estimation). During college I did little to know exercise and was always afraid of doing research about cf because I knew I would start reading about death and get scared.

Since I've been sicker the last couple year I've been very proactive about research and treatments and have exercised religiously. We'll now my pft's are pretty stable and are starting to go up.

I just wish in hindsight I had understood this while I was in college. It would have scared the crap out of me, but I would have exercised and eaten right. The doctor's always told me to eat high cal, but I never understood the correlation between weight gain and pft's. Or even what pft's were for that matter. For all I knew 40 percent was almost normal. Doctor's were always quick to praise me say how well I was doing, I wish now they had tried to scare me.

I played every sport in high school and this no doubt kept me healthy, but as I said, in college I gave all this up (four years w/ very little exercise) I just wish I had known the consequences.

Regardless of how healthy you feel as a teen or young adult, realize it can change and go down hill if you don't take care of yourself.

 

[jfarel]

My only issues of non-compliance came w/ manual chest pt. After about age 8 or nine I really fought it. I was so active physically (and i was homeschooled, so I didn't have to sit in a classroom 8 hours a day) that I don't think it affected me as a child. Once I got the vest I always did it at least 30 minutes a day. Biggest issues for me was that I felt pretty normal until the last 4 or 5 years. I'm now 26.

Here the thing: I was never really hospitalized or on iv's until this last year. However, my pft's stink (30's) and have been declining several percentage points a year for the last 10 years I would guess. Until the last 2 or 3 year's I knew very little about cf or pft's even though I had done them religiously every 3 months at my clinic since I was a child.

The doctor's never explained (bluntly) the importance of pft's and I never saw a chart showing them dropping. I still felt fine (in my estimation). During college I did little to know exercise and was always afraid of doing research about cf because I knew I would start reading about death and get scared.

Since I've been sicker the last couple year I've been very proactive about research and treatments and have exercised religiously. We'll now my pft's are pretty stable and are starting to go up.

I just wish in hindsight I had understood this while I was in college. It would have scared the crap out of me, but I would have exercised and eaten right. The doctor's always told me to eat high cal, but I never understood the correlation between weight gain and pft's. Or even what pft's were for that matter. For all I knew 40 percent was almost normal. Doctor's were always quick to praise me say how well I was doing, I wish now they had tried to scare me.

I played every sport in high school and this no doubt kept me healthy, but as I said, in college I gave all this up (four years w/ very little exercise) I just wish I had known the consequences.

Regardless of how healthy you feel as a teen or young adult, realize it can change and go down hill if you don't take care of yourself.

 

[NoExcuses]

what hospital do you go to and which doc have you had? i want to make sure i never go there.

having pft's in the 30s and never having IV's is malpractice.

i still can't believe what i just read...

please help the CF community on this board by warning us which physician is practicing CF medicine this way and at which CF center....

 

[NoExcuses]

what hospital do you go to and which doc have you had? i want to make sure i never go there.

having pft's in the 30s and never having IV's is malpractice.

i still can't believe what i just read...

please help the CF community on this board by warning us which physician is practicing CF medicine this way and at which CF center....

 

[NoExcuses]

what hospital do you go to and which doc have you had? i want to make sure i never go there.

having pft's in the 30s and never having IV's is malpractice.

i still can't believe what i just read...

please help the CF community on this board by warning us which physician is practicing CF medicine this way and at which CF center....

 

[jfarel]

Amy,

I really not sure if it is right to throw my doctor under the "bus" like this. I certainly am not pleased with where I am at and I agree that I should have been put on IV's sooner. But it is much more complicated than that.

It is absolutely true that my pft's were probably 75-100 percent when I left the children's cf clinic in my home state. I had a great doctor as a child and played high school sports without any trouble and was never really sick or hospitalized. The one exception was when I had aspergillosis as an 8 year old and was hospitalized for 16 days because they didn't know what the problem was. I also had bronchitis a couple times and was hospitalized as a 5 year old and again at 6 or seven, but they were short stays and I fully regained my lung function.

The first time my adult cf doctor mentioned IV's was when I had my fev1 drop between 5-10 percent. I really wasn't feeling that bad and at time (did not realize how grave the situation was. As I said in the message board post, this was before I really started researching cf) Anyway, at the time my pft's were high 20's low thirties. I was able to regain the 5-10 percent with exercise and cutting back on my regular work schedule. I also was put on cipro early in my college days for a flare up and I was fine after a couple days. I had a fever and my doctor said we would do IV's if I didn't feel better.

I attended college between 18-22 and never had a problem keeping up. I have to assume my pft's were declining because you just don't wake up one day with you're pft's in the 30's. I think my second year of college they were in the 60's. At the time I would not have known what that meant or even known what my numbers were. At the time, I wanted to be seen as normal, and I felt okay so I always told the doctor that I had been feeling fine. With the exception of running and climbing long steep hills, I really didn't have any shortness of breath until last year when my pft's fell into the low to mid thirties. I've been working for 4 years, a flexible schedule, and until this past year I had nothing to complain about as far as missing any days for sickness.

Until I was about 15 or 16 I never even had a cf type cough. I never once even felt congested or short of breath. I finally started seeing mucous in my cough at about 15 or 16. At this point, I wish we had done a course of IV's, because this is when I suspect I picked up the PA. I started TOBI at age 18 and the vest around that time as well. Both really helped.

I looked at the CF clinic rankings and mine comes in at about average. I think my doctor is a good, I think it was more of a communication issue than anything else. But I sure wish I could do it over again.

BTW, I haven't found anyone on this board who sees the same doctor, but from what I have read, it seems like his methods are standard practice.

With regard to my pft's, I will metion one more thing. I have only seen my charts from the last 7-8 years. I know there were times where it would fluctuate. I only saw these charts about two years ago, when they started handing them out, but usually when I was in college they would take a dip during classes and jump back up during the summer months. I also know at some point during 03 or 04 I missed pft's for at last one appointment and when I had them done again my fev1 had dropped significantly.

I always thought my health status was pretty much based on what the doctor heard when he listend to my chest. He usually said I sounded fine. If you had asked me two years ago I would have said my disease was mild and worst case moderate, I had know idea I was severe.

Amy, if you would be interested I could probably get a copy of my pft's from the last 8 years and post them. I could call my clinic and I'm sure they would send them to me. I'd like to get another look at them myself and let other see them, maybe even you're doctor, before I decide to reveal my doctor's name. If you think this is important I will do it. I want to be absolutely certain about my pft numbers before I would let anyone know about my clinic.

Here's what I wish the doctor's would say (hypothetically): "John, everytime you're pft's drop, you are closer to dying. You will eventually die of low lung function. You're pft's dropped 5 points this time and you are now at 75 percent. When you're pft's are below 40 you're disease has gotten severe. You will be listed for tx when they drop consistently into the 20's. This is why it so imporant that you work to keep those numbers near 100 percent for as long as possible. You can only do this by complying with exercise, HFCC, diet and antibiotic therapies....

 

[jfarel]

Amy,

I really not sure if it is right to throw my doctor under the "bus" like this. I certainly am not pleased with where I am at and I agree that I should have been put on IV's sooner. But it is much more complicated than that.

It is absolutely true that my pft's were probably 75-100 percent when I left the children's cf clinic in my home state. I had a great doctor as a child and played high school sports without any trouble and was never really sick or hospitalized. The one exception was when I had aspergillosis as an 8 year old and was hospitalized for 16 days because they didn't know what the problem was. I also had bronchitis a couple times and was hospitalized as a 5 year old and again at 6 or seven, but they were short stays and I fully regained my lung function.

The first time my adult cf doctor mentioned IV's was when I had my fev1 drop between 5-10 percent. I really wasn't feeling that bad and at time (did not realize how grave the situation was. As I said in the message board post, this was before I really started researching cf) Anyway, at the time my pft's were high 20's low thirties. I was able to regain the 5-10 percent with exercise and cutting back on my regular work schedule. I also was put on cipro early in my college days for a flare up and I was fine after a couple days. I had a fever and my doctor said we would do IV's if I didn't feel better.

I attended college between 18-22 and never had a problem keeping up. I have to assume my pft's were declining because you just don't wake up one day with you're pft's in the 30's. I think my second year of college they were in the 60's. At the time I would not have known what that meant or even known what my numbers were. At the time, I wanted to be seen as normal, and I felt okay so I always told the doctor that I had been feeling fine. With the exception of running and climbing long steep hills, I really didn't have any shortness of breath until last year when my pft's fell into the low to mid thirties. I've been working for 4 years, a flexible schedule, and until this past year I had nothing to complain about as far as missing any days for sickness.

Until I was about 15 or 16 I never even had a cf type cough. I never once even felt congested or short of breath. I finally started seeing mucous in my cough at about 15 or 16. At this point, I wish we had done a course of IV's, because this is when I suspect I picked up the PA. I started TOBI at age 18 and the vest around that time as well. Both really helped.

I looked at the CF clinic rankings and mine comes in at about average. I think my doctor is a good, I think it was more of a communication issue than anything else. But I sure wish I could do it over again.

BTW, I haven't found anyone on this board who sees the same doctor, but from what I have read, it seems like his methods are standard practice.

With regard to my pft's, I will metion one more thing. I have only seen my charts from the last 7-8 years. I know there were times where it would fluctuate. I only saw these charts about two years ago, when they started handing them out, but usually when I was in college they would take a dip during classes and jump back up during the summer months. I also know at some point during 03 or 04 I missed pft's for at last one appointment and when I had them done again my fev1 had dropped significantly.

I always thought my health status was pretty much based on what the doctor heard when he listend to my chest. He usually said I sounded fine. If you had asked me two years ago I would have said my disease was mild and worst case moderate, I had know idea I was severe.

Amy, if you would be interested I could probably get a copy of my pft's from the last 8 years and post them. I could call my clinic and I'm sure they would send them to me. I'd like to get another look at them myself and let other see them, maybe even you're doctor, before I decide to reveal my doctor's name. If you think this is important I will do it. I want to be absolutely certain about my pft numbers before I would let anyone know about my clinic.

Here's what I wish the doctor's would say (hypothetically): "John, everytime you're pft's drop, you are closer to dying. You will eventually die of low lung function. You're pft's dropped 5 points this time and you are now at 75 percent. When you're pft's are below 40 you're disease has gotten severe. You will be listed for tx when they drop consistently into the 20's. This is why it so imporant that you work to keep those numbers near 100 percent for as long as possible. You can only do this by complying with exercise, HFCC, diet and antibiotic therapies....

 

[jfarel]

Amy,

I really not sure if it is right to throw my doctor under the "bus" like this. I certainly am not pleased with where I am at and I agree that I should have been put on IV's sooner. But it is much more complicated than that.

It is absolutely true that my pft's were probably 75-100 percent when I left the children's cf clinic in my home state. I had a great doctor as a child and played high school sports without any trouble and was never really sick or hospitalized. The one exception was when I had aspergillosis as an 8 year old and was hospitalized for 16 days because they didn't know what the problem was. I also had bronchitis a couple times and was hospitalized as a 5 year old and again at 6 or seven, but they were short stays and I fully regained my lung function.

The first time my adult cf doctor mentioned IV's was when I had my fev1 drop between 5-10 percent. I really wasn't feeling that bad and at time (did not realize how grave the situation was. As I said in the message board post, this was before I really started researching cf) Anyway, at the time my pft's were high 20's low thirties. I was able to regain the 5-10 percent with exercise and cutting back on my regular work schedule. I also was put on cipro early in my college days for a flare up and I was fine after a couple days. I had a fever and my doctor said we would do IV's if I didn't feel better.

I attended college between 18-22 and never had a problem keeping up. I have to assume my pft's were declining because you just don't wake up one day with you're pft's in the 30's. I think my second year of college they were in the 60's. At the time I would not have known what that meant or even known what my numbers were. At the time, I wanted to be seen as normal, and I felt okay so I always told the doctor that I had been feeling fine. With the exception of running and climbing long steep hills, I really didn't have any shortness of breath until last year when my pft's fell into the low to mid thirties. I've been working for 4 years, a flexible schedule, and until this past year I had nothing to complain about as far as missing any days for sickness.

Until I was about 15 or 16 I never even had a cf type cough. I never once even felt congested or short of breath. I finally started seeing mucous in my cough at about 15 or 16. At this point, I wish we had done a course of IV's, because this is when I suspect I picked up the PA. I started TOBI at age 18 and the vest around that time as well. Both really helped.

I looked at the CF clinic rankings and mine comes in at about average. I think my doctor is a good, I think it was more of a communication issue than anything else. But I sure wish I could do it over again.

BTW, I haven't found anyone on this board who sees the same doctor, but from what I have read, it seems like his methods are standard practice.

With regard to my pft's, I will metion one more thing. I have only seen my charts from the last 7-8 years. I know there were times where it would fluctuate. I only saw these charts about two years ago, when they started handing them out, but usually when I was in college they would take a dip during classes and jump back up during the summer months. I also know at some point during 03 or 04 I missed pft's for at last one appointment and when I had them done again my fev1 had dropped significantly.

I always thought my health status was pretty much based on what the doctor heard when he listend to my chest. He usually said I sounded fine. If you had asked me two years ago I would have said my disease was mild and worst case moderate, I had know idea I was severe.

Amy, if you would be interested I could probably get a copy of my pft's from the last 8 years and post them. I could call my clinic and I'm sure they would send them to me. I'd like to get another look at them myself and let other see them, maybe even you're doctor, before I decide to reveal my doctor's name. If you think this is important I will do it. I want to be absolutely certain about my pft numbers before I would let anyone know about my clinic.

Here's what I wish the doctor's would say (hypothetically): "John, everytime you're pft's drop, you are closer to dying. You will eventually die of low lung function. You're pft's dropped 5 points this time and you are now at 75 percent. When you're pft's are below 40 you're disease has gotten severe. You will be listed for tx when they drop consistently into the 20's. This is why it so imporant that you work to keep those numbers near 100 percent for as long as possible. You can only do this by complying with exercise, HFCC, diet and antibiotic therapies....

 

[JennifersHope]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sakasuka</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Scarlett81</b></i>



Explain to her how they'll have her lay on a table with her butt out for everyone to see, and stick a tube up it, while she's awake, to fill her with liquid and then drain it out b/c she has a blockage.



.</end quote></div>



i think that is FABULOUS. you have my vote for best idea on this whole thread!!!! <img src="i/expressions/face-icon-small-cool.gif" border="0"></end quote></div>



I AGREE THESE TWO SUGGESTIONS ARE THE BEST .... ALL IT TOOK FOR ME IS HAVING THAT TUBE SHOVED UP MY BUTT ONCE... ALL THOUGH MINE WAS NOT FROM NOT TAKING MY ENZYMES BUT I DID GET THE GASTROGRAPHEN ENEMA.. AND IT WAS THE WORST... IT HURT, WAS EMBARRASSING, AND WHAT A MESS..

I ALSO AGREE ABOUT THE COLOSTOMY BAG.. FOR A REAL SERIOUS BLOCK THAT LEADS TO A PERFORATION... THEY HAVE TO DO A COLOSTOMY BAG... I WAS SO CLOSE TO GETTING ONE THAT THEY MEASURED ME FOR ONE, MEASURED THE SPOT THAT THEY WERE GOING TO PUT IT ON... AND I TELL YOU IT WAS ENOUGH TO PUT ME OVER THE EDGE. THANKFULLY I DIDN'T GET ONE AND I JUST HAD THE SURGERY..BUT I AM A FANATIC NOW WHEN IT COMES TO MY STOMACH AND TAKING CARE OF IT....



MAYBE LET HER READ THESE BLOGS TO SEE..


GOOD LUCK

 

[JennifersHope]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sakasuka</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Scarlett81</b></i>



Explain to her how they'll have her lay on a table with her butt out for everyone to see, and stick a tube up it, while she's awake, to fill her with liquid and then drain it out b/c she has a blockage.



.</end quote></div>



i think that is FABULOUS. you have my vote for best idea on this whole thread!!!! <img src="i/expressions/face-icon-small-cool.gif" border="0"></end quote></div>



I AGREE THESE TWO SUGGESTIONS ARE THE BEST .... ALL IT TOOK FOR ME IS HAVING THAT TUBE SHOVED UP MY BUTT ONCE... ALL THOUGH MINE WAS NOT FROM NOT TAKING MY ENZYMES BUT I DID GET THE GASTROGRAPHEN ENEMA.. AND IT WAS THE WORST... IT HURT, WAS EMBARRASSING, AND WHAT A MESS..

I ALSO AGREE ABOUT THE COLOSTOMY BAG.. FOR A REAL SERIOUS BLOCK THAT LEADS TO A PERFORATION... THEY HAVE TO DO A COLOSTOMY BAG... I WAS SO CLOSE TO GETTING ONE THAT THEY MEASURED ME FOR ONE, MEASURED THE SPOT THAT THEY WERE GOING TO PUT IT ON... AND I TELL YOU IT WAS ENOUGH TO PUT ME OVER THE EDGE. THANKFULLY I DIDN'T GET ONE AND I JUST HAD THE SURGERY..BUT I AM A FANATIC NOW WHEN IT COMES TO MY STOMACH AND TAKING CARE OF IT....



MAYBE LET HER READ THESE BLOGS TO SEE..


GOOD LUCK

 

[JennifersHope]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sakasuka</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Scarlett81</b></i>



Explain to her how they'll have her lay on a table with her butt out for everyone to see, and stick a tube up it, while she's awake, to fill her with liquid and then drain it out b/c she has a blockage.



.</end quote></div>



i think that is FABULOUS. you have my vote for best idea on this whole thread!!!! <img src="i/expressions/face-icon-small-cool.gif" border="0"></end quote></div>



I AGREE THESE TWO SUGGESTIONS ARE THE BEST .... ALL IT TOOK FOR ME IS HAVING THAT TUBE SHOVED UP MY BUTT ONCE... ALL THOUGH MINE WAS NOT FROM NOT TAKING MY ENZYMES BUT I DID GET THE GASTROGRAPHEN ENEMA.. AND IT WAS THE WORST... IT HURT, WAS EMBARRASSING, AND WHAT A MESS..

I ALSO AGREE ABOUT THE COLOSTOMY BAG.. FOR A REAL SERIOUS BLOCK THAT LEADS TO A PERFORATION... THEY HAVE TO DO A COLOSTOMY BAG... I WAS SO CLOSE TO GETTING ONE THAT THEY MEASURED ME FOR ONE, MEASURED THE SPOT THAT THEY WERE GOING TO PUT IT ON... AND I TELL YOU IT WAS ENOUGH TO PUT ME OVER THE EDGE. THANKFULLY I DIDN'T GET ONE AND I JUST HAD THE SURGERY..BUT I AM A FANATIC NOW WHEN IT COMES TO MY STOMACH AND TAKING CARE OF IT....



MAYBE LET HER READ THESE BLOGS TO SEE..


GOOD LUCK

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i>

It is absolutely true that my pft's were probably 75-100 percent when I left the children's cf clinic in my home state.

The first time my adult cf doctor mentioned IV's was when I had my fev1 drop between 5-10 percent. Anyway, at the time my pft's were high 20's low thirties. </end quote></div>

I'm going off of what you have stated. You stated that when you left your children's clinic (i'm assuming at age 18), your PFT's were 75-100. Somehow they dropped to the 30s in this time frame, and only then were IV's mentioned.

As I said before, that's horrendous CF care. Again, I'm going off of what you have said. And if what you are saying is accurate, that's horrific.

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i> I think my second year of college they were in the 60's. </end quote></div>

A drop from 75-60 requires IV's. Any CF doc in their right mind would agree.


<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i>I think my doctor is a good, I think it was more of a communication issue than anything else. </end quote></div>

You think that your doctor is good when he let your PFT's drop from 100-75, as you said, to the 30s?????? Wow, I'm curious to know what your definition of a bad doctor is!!!!


<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i> it seems like his methods are standard practice. </end quote></div>

Standard practice where??? Are you kidding me? I feel like I'm taking crazy pills.

I've never heard of such a sad story as yours. I don't think it's your fault at all, don't get me wrong. As I stated earlier, I think your doc is liable for malpractice.


<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i>If you had asked me two years ago I would have said my disease was mild and worst case moderate, I had know idea I was severe. </end quote></div>

Right, but your doc knew your PFT scores. So part of treating a patient is how they feel but also the #s. This is just crazy.



<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i>Amy, if you would be interested I could probably get a copy of my pft's from the last 8 years and post them. </end quote></div>

No need. I trust you. But post if you want. I would just shake my head in horror. No CF patient should be subjected to such horrible care.


<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i> If you think this is important I will do it. </end quote></div>

Uh, ya. I think you should post the doc's name. And the clinic. I would hope that no patient would ever see him again if what you are stating is accurate. You might as well have not beeing seeing a doctor. He didn't treat you. Your PFT #s were cut by 2/3 and you were on antibiotics once.

I must be missing something in this story.

Regardless of your compliance, if your PFT's were dropping, you should have had treatment. Ya the explaining to you why home treatment is important is a good thing, but regardless of patient compliance, if your lung function is plummeting, you need IV therapy (unless you have 0 bacteria in your sputum culture).

Please, for the sake of other CFers, tell us who this horrific doctor is.

And I'm sorry that you had such poor CF care. I'm devistated to hear your story.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i>

It is absolutely true that my pft's were probably 75-100 percent when I left the children's cf clinic in my home state.

The first time my adult cf doctor mentioned IV's was when I had my fev1 drop between 5-10 percent. Anyway, at the time my pft's were high 20's low thirties. </end quote></div>

I'm going off of what you have stated. You stated that when you left your children's clinic (i'm assuming at age 18), your PFT's were 75-100. Somehow they dropped to the 30s in this time frame, and only then were IV's mentioned.

As I said before, that's horrendous CF care. Again, I'm going off of what you have said. And if what you are saying is accurate, that's horrific.

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i> I think my second year of college they were in the 60's. </end quote></div>

A drop from 75-60 requires IV's. Any CF doc in their right mind would agree.


<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i>I think my doctor is a good, I think it was more of a communication issue than anything else. </end quote></div>

You think that your doctor is good when he let your PFT's drop from 100-75, as you said, to the 30s?????? Wow, I'm curious to know what your definition of a bad doctor is!!!!


<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i> it seems like his methods are standard practice. </end quote></div>

Standard practice where??? Are you kidding me? I feel like I'm taking crazy pills.

I've never heard of such a sad story as yours. I don't think it's your fault at all, don't get me wrong. As I stated earlier, I think your doc is liable for malpractice.


<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i>If you had asked me two years ago I would have said my disease was mild and worst case moderate, I had know idea I was severe. </end quote></div>

Right, but your doc knew your PFT scores. So part of treating a patient is how they feel but also the #s. This is just crazy.



<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i>Amy, if you would be interested I could probably get a copy of my pft's from the last 8 years and post them. </end quote></div>

No need. I trust you. But post if you want. I would just shake my head in horror. No CF patient should be subjected to such horrible care.


<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i> If you think this is important I will do it. </end quote></div>

Uh, ya. I think you should post the doc's name. And the clinic. I would hope that no patient would ever see him again if what you are stating is accurate. You might as well have not beeing seeing a doctor. He didn't treat you. Your PFT #s were cut by 2/3 and you were on antibiotics once.

I must be missing something in this story.

Regardless of your compliance, if your PFT's were dropping, you should have had treatment. Ya the explaining to you why home treatment is important is a good thing, but regardless of patient compliance, if your lung function is plummeting, you need IV therapy (unless you have 0 bacteria in your sputum culture).

Please, for the sake of other CFers, tell us who this horrific doctor is.

And I'm sorry that you had such poor CF care. I'm devistated to hear your story.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i>

It is absolutely true that my pft's were probably 75-100 percent when I left the children's cf clinic in my home state.

The first time my adult cf doctor mentioned IV's was when I had my fev1 drop between 5-10 percent. Anyway, at the time my pft's were high 20's low thirties. </end quote></div>

I'm going off of what you have stated. You stated that when you left your children's clinic (i'm assuming at age 18), your PFT's were 75-100. Somehow they dropped to the 30s in this time frame, and only then were IV's mentioned.

As I said before, that's horrendous CF care. Again, I'm going off of what you have said. And if what you are saying is accurate, that's horrific.

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i> I think my second year of college they were in the 60's. </end quote></div>

A drop from 75-60 requires IV's. Any CF doc in their right mind would agree.


<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i>I think my doctor is a good, I think it was more of a communication issue than anything else. </end quote></div>

You think that your doctor is good when he let your PFT's drop from 100-75, as you said, to the 30s?????? Wow, I'm curious to know what your definition of a bad doctor is!!!!


<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i> it seems like his methods are standard practice. </end quote></div>

Standard practice where??? Are you kidding me? I feel like I'm taking crazy pills.

I've never heard of such a sad story as yours. I don't think it's your fault at all, don't get me wrong. As I stated earlier, I think your doc is liable for malpractice.


<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i>If you had asked me two years ago I would have said my disease was mild and worst case moderate, I had know idea I was severe. </end quote></div>

Right, but your doc knew your PFT scores. So part of treating a patient is how they feel but also the #s. This is just crazy.



<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i>Amy, if you would be interested I could probably get a copy of my pft's from the last 8 years and post them. </end quote></div>

No need. I trust you. But post if you want. I would just shake my head in horror. No CF patient should be subjected to such horrible care.


<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i> If you think this is important I will do it. </end quote></div>

Uh, ya. I think you should post the doc's name. And the clinic. I would hope that no patient would ever see him again if what you are stating is accurate. You might as well have not beeing seeing a doctor. He didn't treat you. Your PFT #s were cut by 2/3 and you were on antibiotics once.

I must be missing something in this story.

Regardless of your compliance, if your PFT's were dropping, you should have had treatment. Ya the explaining to you why home treatment is important is a good thing, but regardless of patient compliance, if your lung function is plummeting, you need IV therapy (unless you have 0 bacteria in your sputum culture).

Please, for the sake of other CFers, tell us who this horrific doctor is.

And I'm sorry that you had such poor CF care. I'm devistated to hear your story.

 

[jfarel]

"I must be missing something in this story."

Well, the only thing I've thought of that I didn't mention, is that I didn't have very good nebulizer cleaning practices while I was in college. I'm sure that didn't help things any. If I think of something else I will add it.

I would be afraid to post my doctor's name and still continue to see him, even if I did it anonymously.

It really upsets me that you think I was getting poor cf care or no cf care. I always thought I was seeing the best doctor in my state. Its a certified cf clinic and that's what he specializes in. He even oversees the transplants at the hospital.

Certainly before I post his name, or even decide to see someone else, I would like to here others opinion on this topic. Not that I don't trust you Amy, I do, but its always best to hear others opinions--particulary other cf doctors.

I'm certain my doctor is well respected in his circles.

Please feel free to ask me any questions Amy, as you now have me really concerned about my cf care. So Amy, even though my 8 year pft drop was gradual, you still think I should have been on IV's. Let's say it was an average of 5 percent drop per year?

Until this past year I never had an exacerbation or clinical visit where my pft's dropped more than a few percentage points. Still, in hindsight I tend to agree with you and the more I think about it, the more upset I get.

 

[jfarel]

"I must be missing something in this story."

Well, the only thing I've thought of that I didn't mention, is that I didn't have very good nebulizer cleaning practices while I was in college. I'm sure that didn't help things any. If I think of something else I will add it.

I would be afraid to post my doctor's name and still continue to see him, even if I did it anonymously.

It really upsets me that you think I was getting poor cf care or no cf care. I always thought I was seeing the best doctor in my state. Its a certified cf clinic and that's what he specializes in. He even oversees the transplants at the hospital.

Certainly before I post his name, or even decide to see someone else, I would like to here others opinion on this topic. Not that I don't trust you Amy, I do, but its always best to hear others opinions--particulary other cf doctors.

I'm certain my doctor is well respected in his circles.

Please feel free to ask me any questions Amy, as you now have me really concerned about my cf care. So Amy, even though my 8 year pft drop was gradual, you still think I should have been on IV's. Let's say it was an average of 5 percent drop per year?

Until this past year I never had an exacerbation or clinical visit where my pft's dropped more than a few percentage points. Still, in hindsight I tend to agree with you and the more I think about it, the more upset I get.