WHAT DID YOU DO

J

jfarel

New member
"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.
 
C

Chaggie

New member
I agree with amy on this, if you wnet from 75-100 fev to a 30 in 8 years and he only mentioned IV's once, there's something wrong with that.
 
C

Chaggie

New member
I agree with amy on this, if you wnet from 75-100 fev to a 30 in 8 years and he only mentioned IV's once, there's something wrong with that.
 
C

Chaggie

New member
I agree with amy on this, if you wnet from 75-100 fev to a 30 in 8 years and he only mentioned IV's once, there's something wrong with that.
 
S

Scarlett81

New member
I hope you can find a way to get through to her Seana-you're a good mom. fyi-I didn't mean to literally sit her down and yell at her face how the butt procedure is on her horizon-obviously I meant explain it in a calm but serious way. Only b/c if someone had told me the<b> hard </b>truth about not taking my enzymes years ago like that-I would have never stopped taking them. But that was my experience.
You know your child best. Hope you find a way to get through to her!

And reading post about your sit, jfarel-yes I also agree that your care doesn't sound good. That is a huge drop-huge. Unless I am mistaken-it is a 30% fev1 when they start considering you for a lung transplant. 75% fev1 is when according to cf foundation reccomendations say you should be at for (a female cfer) to consider pregnancy. See the HUGE difference? That is a massive drop for you. However-I wouldn't put all the blame on your doctor without knowing all the facts and knowing more about you. Perhaps I am totally wrong, but knowing my (old) personality and reading between the lines here-it sounds like you have had some big compliance issues. It sounds like you haven't been regular with your doc appointments. And you said you haven't been faithful with your chest pt and treatments.
For all we know-you doc could have been trying to drag you in to his office for ages to see you and try to put you on ivs and you ignored it and said no. But-yes, I do agree that your doc is hugely respinsible for Iv-ing you. There is no excuse for you not going on them. My opinion. Thats really really bad.
My advice to you would be to meet with your doc, go over your records from the past 5 years. See what it was you were doing when you were so healthy, and start doing it again. Go on ivs, get a good tune up. Start a healthy diet and supplements. And after you do all your part...............all of it......re-evaluate and see if you need a more aggresive doctor. I had to switch to a more aggresive doctor once. It was hard-but look, I am having a kid now and my pfts are high. So the work was worth it.
 
S

Scarlett81

New member
I hope you can find a way to get through to her Seana-you're a good mom. fyi-I didn't mean to literally sit her down and yell at her face how the butt procedure is on her horizon-obviously I meant explain it in a calm but serious way. Only b/c if someone had told me the<b> hard </b>truth about not taking my enzymes years ago like that-I would have never stopped taking them. But that was my experience.
You know your child best. Hope you find a way to get through to her!

And reading post about your sit, jfarel-yes I also agree that your care doesn't sound good. That is a huge drop-huge. Unless I am mistaken-it is a 30% fev1 when they start considering you for a lung transplant. 75% fev1 is when according to cf foundation reccomendations say you should be at for (a female cfer) to consider pregnancy. See the HUGE difference? That is a massive drop for you. However-I wouldn't put all the blame on your doctor without knowing all the facts and knowing more about you. Perhaps I am totally wrong, but knowing my (old) personality and reading between the lines here-it sounds like you have had some big compliance issues. It sounds like you haven't been regular with your doc appointments. And you said you haven't been faithful with your chest pt and treatments.
For all we know-you doc could have been trying to drag you in to his office for ages to see you and try to put you on ivs and you ignored it and said no. But-yes, I do agree that your doc is hugely respinsible for Iv-ing you. There is no excuse for you not going on them. My opinion. Thats really really bad.
My advice to you would be to meet with your doc, go over your records from the past 5 years. See what it was you were doing when you were so healthy, and start doing it again. Go on ivs, get a good tune up. Start a healthy diet and supplements. And after you do all your part...............all of it......re-evaluate and see if you need a more aggresive doctor. I had to switch to a more aggresive doctor once. It was hard-but look, I am having a kid now and my pfts are high. So the work was worth it.
 
S

Scarlett81

New member
I hope you can find a way to get through to her Seana-you're a good mom. fyi-I didn't mean to literally sit her down and yell at her face how the butt procedure is on her horizon-obviously I meant explain it in a calm but serious way. Only b/c if someone had told me the<b> hard </b>truth about not taking my enzymes years ago like that-I would have never stopped taking them. But that was my experience.
You know your child best. Hope you find a way to get through to her!

And reading post about your sit, jfarel-yes I also agree that your care doesn't sound good. That is a huge drop-huge. Unless I am mistaken-it is a 30% fev1 when they start considering you for a lung transplant. 75% fev1 is when according to cf foundation reccomendations say you should be at for (a female cfer) to consider pregnancy. See the HUGE difference? That is a massive drop for you. However-I wouldn't put all the blame on your doctor without knowing all the facts and knowing more about you. Perhaps I am totally wrong, but knowing my (old) personality and reading between the lines here-it sounds like you have had some big compliance issues. It sounds like you haven't been regular with your doc appointments. And you said you haven't been faithful with your chest pt and treatments.
For all we know-you doc could have been trying to drag you in to his office for ages to see you and try to put you on ivs and you ignored it and said no. But-yes, I do agree that your doc is hugely respinsible for Iv-ing you. There is no excuse for you not going on them. My opinion. Thats really really bad.
My advice to you would be to meet with your doc, go over your records from the past 5 years. See what it was you were doing when you were so healthy, and start doing it again. Go on ivs, get a good tune up. Start a healthy diet and supplements. And after you do all your part...............all of it......re-evaluate and see if you need a more aggresive doctor. I had to switch to a more aggresive doctor once. It was hard-but look, I am having a kid now and my pfts are high. So the work was worth it.
 
J

jfarel

New member
Scarlett,

Trust me compliance was not an issue. I "Worship" the doctors and have been going to my clinic 3 to 4 times a year since I was 3 months old. I almost never miss treatments, have maybe missed 1 this year and never missed treatments at college either. I've alwasy eaten three meals a day, I don't drink or smoke or stay out late partying. As I said, lots of people don't exercise like they should, Amy would say she is one of them, but her pft's are good. I now exercise 5-6 times a week, but when I was in college I did not. <b>That, and not getting enough calories were the only areas where I was not compliant.</b>

I've been very faithful with vest treatments. I told the doctor for years that the vest wasn't really helping me because I couldn't cough anything out. (not true this year) So I've always used the vest at least once a day. Until I got the vest I didn't really need it. I was pretty healthy, running playing basketball etc...

BTW, I'm doing everything I can to bring my pft's back up and have been doing so for about two years. Even more so this year and I've been on IV's three times.

<b>In case I didn't mention it Amy and others. I was not on IV's until this year. That was a first and my pft's and dipped into the low to mid 30's.</b> I did not mean I still had not been on IV's. This year was my first time since I was eight.
 
J

jfarel

New member
Scarlett,

Trust me compliance was not an issue. I "Worship" the doctors and have been going to my clinic 3 to 4 times a year since I was 3 months old. I almost never miss treatments, have maybe missed 1 this year and never missed treatments at college either. I've alwasy eaten three meals a day, I don't drink or smoke or stay out late partying. As I said, lots of people don't exercise like they should, Amy would say she is one of them, but her pft's are good. I now exercise 5-6 times a week, but when I was in college I did not. <b>That, and not getting enough calories were the only areas where I was not compliant.</b>

I've been very faithful with vest treatments. I told the doctor for years that the vest wasn't really helping me because I couldn't cough anything out. (not true this year) So I've always used the vest at least once a day. Until I got the vest I didn't really need it. I was pretty healthy, running playing basketball etc...

BTW, I'm doing everything I can to bring my pft's back up and have been doing so for about two years. Even more so this year and I've been on IV's three times.

<b>In case I didn't mention it Amy and others. I was not on IV's until this year. That was a first and my pft's and dipped into the low to mid 30's.</b> I did not mean I still had not been on IV's. This year was my first time since I was eight.
 
J

jfarel

New member
Scarlett,

Trust me compliance was not an issue. I "Worship" the doctors and have been going to my clinic 3 to 4 times a year since I was 3 months old. I almost never miss treatments, have maybe missed 1 this year and never missed treatments at college either. I've alwasy eaten three meals a day, I don't drink or smoke or stay out late partying. As I said, lots of people don't exercise like they should, Amy would say she is one of them, but her pft's are good. I now exercise 5-6 times a week, but when I was in college I did not. <b>That, and not getting enough calories were the only areas where I was not compliant.</b>

I've been very faithful with vest treatments. I told the doctor for years that the vest wasn't really helping me because I couldn't cough anything out. (not true this year) So I've always used the vest at least once a day. Until I got the vest I didn't really need it. I was pretty healthy, running playing basketball etc...

BTW, I'm doing everything I can to bring my pft's back up and have been doing so for about two years. Even more so this year and I've been on IV's three times.

<b>In case I didn't mention it Amy and others. I was not on IV's until this year. That was a first and my pft's and dipped into the low to mid 30's.</b> I did not mean I still had not been on IV's. This year was my first time since I was eight.
 
N

NoExcuses

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


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

</end quote></div>

Ha! not if other docs heard your story....

I'm glad you are soliciting others' opinions. Hopefully this will help you see how alarming this doctor is and prompt you to ensure that others don't see this doc.

I know you said you were upset. I'm just as upset as you are about your care. I wouldn't wish your poor care on my worst enemy...
 
N

NoExcuses

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


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

</end quote></div>

Ha! not if other docs heard your story....

I'm glad you are soliciting others' opinions. Hopefully this will help you see how alarming this doctor is and prompt you to ensure that others don't see this doc.

I know you said you were upset. I'm just as upset as you are about your care. I wouldn't wish your poor care on my worst enemy...
 
N

NoExcuses

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


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

</end quote></div>

Ha! not if other docs heard your story....

I'm glad you are soliciting others' opinions. Hopefully this will help you see how alarming this doctor is and prompt you to ensure that others don't see this doc.

I know you said you were upset. I'm just as upset as you are about your care. I wouldn't wish your poor care on my worst enemy...
 
C

coltsfan715

New member
Sorry to high jack Seana's post to reply to Jfarel's post, but I didn't want to start a new thread for my reply.

I may be taking the less popular side in this but I would NOT post anything identifying about the center that you go to John or the doctor. I think that is a bad move and a wrong one at that. You do not have to justify anything about your care to anyone on here and just so you know Doctors and office staff DO frequent these sites and may very well come across your post - then how will that work for you when you go to clinic next time. I know my docs office has this web address and I know they mention reading things on the sites quite often and how it bothers them because alot of the stuff they see is wrong or is said with no real justification and no founding - no research and everyone just follows like lost puppies (but that is for another post).

People may ream me out for saying not to post any of the Docs info and that is fine ... start the line I don't care it IS WRONG. You are taking the treatment - as told by the patient (no offense John) and you are using that as a method and reason to pass judgement on this doctor and label him as a horrible doctor that would be justified in receiving a malpractice lawsuit. That is VERY narrow minded and ignorant in my mind. By hearing of his treatment of one patient you are willing to jump on the he is a horrible doctor take away his license bandwagon.

From what I gathered in J's post the doc suggested IVs but J' said he felt okay and did not think he needed them and the doc gave him oral abx. It is not as though the doc was refusing to give him any treatment at all. Though in a perfect world everytime a person needed IV abx they would know it and they would listen to the doc when the doc said hey you need these meds it doesn't happen that way all the time. A doc sometimes has to reccomend what he THINKS is best and then has to adjust what he thinks to fit the lifestyle of the patient. If the patient does not want IVs and says so then the doc may reccomend something that he thinks the patient will follow through with like oral meds. Something is better than nothing in that instance - he is getting some type of treatment though it may not be what everyone would choose.

As for decreasing lung function - my lung function was at about 60% when I was 20 and it is now at about 30% at 24. To me that is not satisfactory but can I say it is due to below par care - not really. There are things that my old doc did that bothered me but I went to several centers seeking other opinions on things and always got the same answers, so I know that what I was being given was the standard around the CF world. I ultimately changed offices because I was given the "there is nothing else we can do to help you" line and I didn't think that was a good attitude to have. My decline happened even WITH IV treatment I was in the hospital AT LEAST 2 times a year maybe 3 times even and still I had a decline. There were times that I asked for oral med treatment instead of IVs because I had something going on and needed to be out of the hospital for that. There are alot of factors that can alter a persons care and medical treatment it is not ALWAYS just what the doctor says.

I don't think that you should let anyone on here make you feel badly about your doctor if YOU do not think it is justified. YOU are the one who sees him YOU need to be happy with him not the people on this site. Everyone tends to think that what they have is better or if things aren't done the way their docs do it it is wrong. There are different ways to do the same things. Yes the decline is not so good - but do not ridicule a doctor for a patients decline when you hear the patient was only hospitalized once - even if you think the care was inadequate. There are always ALWAYS two sides to every story and not that J would intentionally lead people to the wrong impression on the matter but it is possible that not everything is being relayed in terms of why the doc made the decisions he made and so on.

Basically John - if you think that you could be receiving better care somewhere else ... go somewhere else and check it out. I did a few years ago and again this past year. I ultimately decided to change offices - like I said my old doc had the "there is nothing else we can do" attitude and this new office is more geared up to kick CF @$$ and I like that so I changed offices. I like my care and am happier with it now, but at the same time when I went a few years ago or a second opinion I came back to my old office with the same info the same answers the same everything.

Listen to your heart in regards to your doctor, do the research as well check out other centers before you pass the judgement that you have a bad doctor. Don't listen to people that have never really met YOU and have never seen your doctor - let alone dealt with the same CF situation you have.

Take Care John,

And to Seana - Sorry for high jacking the thread I hope you are able to get everything worked out with Courtney really soon.

Take Care,
Lindsey
 
C

coltsfan715

New member
Sorry to high jack Seana's post to reply to Jfarel's post, but I didn't want to start a new thread for my reply.

I may be taking the less popular side in this but I would NOT post anything identifying about the center that you go to John or the doctor. I think that is a bad move and a wrong one at that. You do not have to justify anything about your care to anyone on here and just so you know Doctors and office staff DO frequent these sites and may very well come across your post - then how will that work for you when you go to clinic next time. I know my docs office has this web address and I know they mention reading things on the sites quite often and how it bothers them because alot of the stuff they see is wrong or is said with no real justification and no founding - no research and everyone just follows like lost puppies (but that is for another post).

People may ream me out for saying not to post any of the Docs info and that is fine ... start the line I don't care it IS WRONG. You are taking the treatment - as told by the patient (no offense John) and you are using that as a method and reason to pass judgement on this doctor and label him as a horrible doctor that would be justified in receiving a malpractice lawsuit. That is VERY narrow minded and ignorant in my mind. By hearing of his treatment of one patient you are willing to jump on the he is a horrible doctor take away his license bandwagon.

From what I gathered in J's post the doc suggested IVs but J' said he felt okay and did not think he needed them and the doc gave him oral abx. It is not as though the doc was refusing to give him any treatment at all. Though in a perfect world everytime a person needed IV abx they would know it and they would listen to the doc when the doc said hey you need these meds it doesn't happen that way all the time. A doc sometimes has to reccomend what he THINKS is best and then has to adjust what he thinks to fit the lifestyle of the patient. If the patient does not want IVs and says so then the doc may reccomend something that he thinks the patient will follow through with like oral meds. Something is better than nothing in that instance - he is getting some type of treatment though it may not be what everyone would choose.

As for decreasing lung function - my lung function was at about 60% when I was 20 and it is now at about 30% at 24. To me that is not satisfactory but can I say it is due to below par care - not really. There are things that my old doc did that bothered me but I went to several centers seeking other opinions on things and always got the same answers, so I know that what I was being given was the standard around the CF world. I ultimately changed offices because I was given the "there is nothing else we can do to help you" line and I didn't think that was a good attitude to have. My decline happened even WITH IV treatment I was in the hospital AT LEAST 2 times a year maybe 3 times even and still I had a decline. There were times that I asked for oral med treatment instead of IVs because I had something going on and needed to be out of the hospital for that. There are alot of factors that can alter a persons care and medical treatment it is not ALWAYS just what the doctor says.

I don't think that you should let anyone on here make you feel badly about your doctor if YOU do not think it is justified. YOU are the one who sees him YOU need to be happy with him not the people on this site. Everyone tends to think that what they have is better or if things aren't done the way their docs do it it is wrong. There are different ways to do the same things. Yes the decline is not so good - but do not ridicule a doctor for a patients decline when you hear the patient was only hospitalized once - even if you think the care was inadequate. There are always ALWAYS two sides to every story and not that J would intentionally lead people to the wrong impression on the matter but it is possible that not everything is being relayed in terms of why the doc made the decisions he made and so on.

Basically John - if you think that you could be receiving better care somewhere else ... go somewhere else and check it out. I did a few years ago and again this past year. I ultimately decided to change offices - like I said my old doc had the "there is nothing else we can do" attitude and this new office is more geared up to kick CF @$$ and I like that so I changed offices. I like my care and am happier with it now, but at the same time when I went a few years ago or a second opinion I came back to my old office with the same info the same answers the same everything.

Listen to your heart in regards to your doctor, do the research as well check out other centers before you pass the judgement that you have a bad doctor. Don't listen to people that have never really met YOU and have never seen your doctor - let alone dealt with the same CF situation you have.

Take Care John,

And to Seana - Sorry for high jacking the thread I hope you are able to get everything worked out with Courtney really soon.

Take Care,
Lindsey
 
C

coltsfan715

New member
Sorry to high jack Seana's post to reply to Jfarel's post, but I didn't want to start a new thread for my reply.

I may be taking the less popular side in this but I would NOT post anything identifying about the center that you go to John or the doctor. I think that is a bad move and a wrong one at that. You do not have to justify anything about your care to anyone on here and just so you know Doctors and office staff DO frequent these sites and may very well come across your post - then how will that work for you when you go to clinic next time. I know my docs office has this web address and I know they mention reading things on the sites quite often and how it bothers them because alot of the stuff they see is wrong or is said with no real justification and no founding - no research and everyone just follows like lost puppies (but that is for another post).

People may ream me out for saying not to post any of the Docs info and that is fine ... start the line I don't care it IS WRONG. You are taking the treatment - as told by the patient (no offense John) and you are using that as a method and reason to pass judgement on this doctor and label him as a horrible doctor that would be justified in receiving a malpractice lawsuit. That is VERY narrow minded and ignorant in my mind. By hearing of his treatment of one patient you are willing to jump on the he is a horrible doctor take away his license bandwagon.

From what I gathered in J's post the doc suggested IVs but J' said he felt okay and did not think he needed them and the doc gave him oral abx. It is not as though the doc was refusing to give him any treatment at all. Though in a perfect world everytime a person needed IV abx they would know it and they would listen to the doc when the doc said hey you need these meds it doesn't happen that way all the time. A doc sometimes has to reccomend what he THINKS is best and then has to adjust what he thinks to fit the lifestyle of the patient. If the patient does not want IVs and says so then the doc may reccomend something that he thinks the patient will follow through with like oral meds. Something is better than nothing in that instance - he is getting some type of treatment though it may not be what everyone would choose.

As for decreasing lung function - my lung function was at about 60% when I was 20 and it is now at about 30% at 24. To me that is not satisfactory but can I say it is due to below par care - not really. There are things that my old doc did that bothered me but I went to several centers seeking other opinions on things and always got the same answers, so I know that what I was being given was the standard around the CF world. I ultimately changed offices because I was given the "there is nothing else we can do to help you" line and I didn't think that was a good attitude to have. My decline happened even WITH IV treatment I was in the hospital AT LEAST 2 times a year maybe 3 times even and still I had a decline. There were times that I asked for oral med treatment instead of IVs because I had something going on and needed to be out of the hospital for that. There are alot of factors that can alter a persons care and medical treatment it is not ALWAYS just what the doctor says.

I don't think that you should let anyone on here make you feel badly about your doctor if YOU do not think it is justified. YOU are the one who sees him YOU need to be happy with him not the people on this site. Everyone tends to think that what they have is better or if things aren't done the way their docs do it it is wrong. There are different ways to do the same things. Yes the decline is not so good - but do not ridicule a doctor for a patients decline when you hear the patient was only hospitalized once - even if you think the care was inadequate. There are always ALWAYS two sides to every story and not that J would intentionally lead people to the wrong impression on the matter but it is possible that not everything is being relayed in terms of why the doc made the decisions he made and so on.

Basically John - if you think that you could be receiving better care somewhere else ... go somewhere else and check it out. I did a few years ago and again this past year. I ultimately decided to change offices - like I said my old doc had the "there is nothing else we can do" attitude and this new office is more geared up to kick CF @$$ and I like that so I changed offices. I like my care and am happier with it now, but at the same time when I went a few years ago or a second opinion I came back to my old office with the same info the same answers the same everything.

Listen to your heart in regards to your doctor, do the research as well check out other centers before you pass the judgement that you have a bad doctor. Don't listen to people that have never really met YOU and have never seen your doctor - let alone dealt with the same CF situation you have.

Take Care John,

And to Seana - Sorry for high jacking the thread I hope you are able to get everything worked out with Courtney really soon.

Take Care,
Lindsey
 
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