Diagnose yourself?

[MCGrad2006]

I hate to say it but I agree with Jenn. My doctor, although sometimes is a bit awkward or agitated with the little things I think are problems...overall, my doctor is fantastic.

Try to think of it this way. Yes, we as patients are getting older and as that happens we get more complex problems, but as my mom says, my doctor is probably in his late 60s, maybe early 70s (if I had to guess) and I am only 25...so therefore he has been treating CFers a lot longer than I have been alive. And to top it off, he still participates in clinical research conferences and many other things. He is the head of CF clinic at my center and treats adults and children with CF.

And to answer whether doctors check out sites like this...I don't necessarily think the doctors do, but I would have to believe someone in (maybe not all, but at least some) clinics checks out these sites. I think many of the staffers know that CFers need support groups and I know myself, I have talked to my caregivers about online support groups and how helpful they have been to me. It would not surprise me if they check it out every once in a while, but maybe don't post or register as a user.

 

[MCGrad2006]

I hate to say it but I agree with Jenn. My doctor, although sometimes is a bit awkward or agitated with the little things I think are problems...overall, my doctor is fantastic.

Try to think of it this way. Yes, we as patients are getting older and as that happens we get more complex problems, but as my mom says, my doctor is probably in his late 60s, maybe early 70s (if I had to guess) and I am only 25...so therefore he has been treating CFers a lot longer than I have been alive. And to top it off, he still participates in clinical research conferences and many other things. He is the head of CF clinic at my center and treats adults and children with CF.

And to answer whether doctors check out sites like this...I don't necessarily think the doctors do, but I would have to believe someone in (maybe not all, but at least some) clinics checks out these sites. I think many of the staffers know that CFers need support groups and I know myself, I have talked to my caregivers about online support groups and how helpful they have been to me. It would not surprise me if they check it out every once in a while, but maybe don't post or register as a user.

 

[MCGrad2006]

I hate to say it but I agree with Jenn. My doctor, although sometimes is a bit awkward or agitated with the little things I think are problems...overall, my doctor is fantastic.

Try to think of it this way. Yes, we as patients are getting older and as that happens we get more complex problems, but as my mom says, my doctor is probably in his late 60s, maybe early 70s (if I had to guess) and I am only 25...so therefore he has been treating CFers a lot longer than I have been alive. And to top it off, he still participates in clinical research conferences and many other things. He is the head of CF clinic at my center and treats adults and children with CF.

And to answer whether doctors check out sites like this...I don't necessarily think the doctors do, but I would have to believe someone in (maybe not all, but at least some) clinics checks out these sites. I think many of the staffers know that CFers need support groups and I know myself, I have talked to my caregivers about online support groups and how helpful they have been to me. It would not surprise me if they check it out every once in a while, but maybe don't post or register as a user.

 

[MCGrad2006]

I hate to say it but I agree with Jenn. My doctor, although sometimes is a bit awkward or agitated with the little things I think are problems...overall, my doctor is fantastic.

Try to think of it this way. Yes, we as patients are getting older and as that happens we get more complex problems, but as my mom says, my doctor is probably in his late 60s, maybe early 70s (if I had to guess) and I am only 25...so therefore he has been treating CFers a lot longer than I have been alive. And to top it off, he still participates in clinical research conferences and many other things. He is the head of CF clinic at my center and treats adults and children with CF.

And to answer whether doctors check out sites like this...I don't necessarily think the doctors do, but I would have to believe someone in (maybe not all, but at least some) clinics checks out these sites. I think many of the staffers know that CFers need support groups and I know myself, I have talked to my caregivers about online support groups and how helpful they have been to me. It would not surprise me if they check it out every once in a while, but maybe don't post or register as a user.

 

[MCGrad2006]

I hate to say it but I agree with Jenn. My doctor, although sometimes is a bit awkward or agitated with the little things I think are problems...overall, my doctor is fantastic.
<br />
<br />Try to think of it this way. Yes, we as patients are getting older and as that happens we get more complex problems, but as my mom says, my doctor is probably in his late 60s, maybe early 70s (if I had to guess) and I am only 25...so therefore he has been treating CFers a lot longer than I have been alive. And to top it off, he still participates in clinical research conferences and many other things. He is the head of CF clinic at my center and treats adults and children with CF.
<br />
<br />And to answer whether doctors check out sites like this...I don't necessarily think the doctors do, but I would have to believe someone in (maybe not all, but at least some) clinics checks out these sites. I think many of the staffers know that CFers need support groups and I know myself, I have talked to my caregivers about online support groups and how helpful they have been to me. It would not surprise me if they check it out every once in a while, but maybe don't post or register as a user.

 

[JazzysMom]

I have not encountered this issue for 2 reasons. Many, many issues I have I dont address with my CF doctor. I tolerate (good or bad is not in ??, just stating facts) things & figure its CF or getting older.

The few things that I do address with her are handled. If its not an area she is comfortable in or would rather have a specialist involved she will give me the name of who she wants me to see.....ENT, GI etc

She also knows that most of her referrals are difficult for me since they are all down near my clinic which is 3 hours away from me.

She follows up & asks if I addressed problem ABC with anyone or made appointments etc. She doesnt disregard them, but likes to find the answers from those more familiar rather then put a bandaid on things by her.

She will apply the bandaid until I get the answers depending on the issue etc.

As far as diagnosing myself.....I go with the facts. Together & with test results we try to determind the cause & what action to take.

It really bothers me that everyone isnt as fortunate to have a great CF Team as I do!

 

[JazzysMom]

I have not encountered this issue for 2 reasons. Many, many issues I have I dont address with my CF doctor. I tolerate (good or bad is not in ??, just stating facts) things & figure its CF or getting older.

The few things that I do address with her are handled. If its not an area she is comfortable in or would rather have a specialist involved she will give me the name of who she wants me to see.....ENT, GI etc

She also knows that most of her referrals are difficult for me since they are all down near my clinic which is 3 hours away from me.

She follows up & asks if I addressed problem ABC with anyone or made appointments etc. She doesnt disregard them, but likes to find the answers from those more familiar rather then put a bandaid on things by her.

She will apply the bandaid until I get the answers depending on the issue etc.

As far as diagnosing myself.....I go with the facts. Together & with test results we try to determind the cause & what action to take.

It really bothers me that everyone isnt as fortunate to have a great CF Team as I do!

 

[JazzysMom]

I have not encountered this issue for 2 reasons. Many, many issues I have I dont address with my CF doctor. I tolerate (good or bad is not in ??, just stating facts) things & figure its CF or getting older.

The few things that I do address with her are handled. If its not an area she is comfortable in or would rather have a specialist involved she will give me the name of who she wants me to see.....ENT, GI etc

She also knows that most of her referrals are difficult for me since they are all down near my clinic which is 3 hours away from me.

She follows up & asks if I addressed problem ABC with anyone or made appointments etc. She doesnt disregard them, but likes to find the answers from those more familiar rather then put a bandaid on things by her.

She will apply the bandaid until I get the answers depending on the issue etc.

As far as diagnosing myself.....I go with the facts. Together & with test results we try to determind the cause & what action to take.

It really bothers me that everyone isnt as fortunate to have a great CF Team as I do!

 

[JazzysMom]

I have not encountered this issue for 2 reasons. Many, many issues I have I dont address with my CF doctor. I tolerate (good or bad is not in ??, just stating facts) things & figure its CF or getting older.

The few things that I do address with her are handled. If its not an area she is comfortable in or would rather have a specialist involved she will give me the name of who she wants me to see.....ENT, GI etc

She also knows that most of her referrals are difficult for me since they are all down near my clinic which is 3 hours away from me.

She follows up & asks if I addressed problem ABC with anyone or made appointments etc. She doesnt disregard them, but likes to find the answers from those more familiar rather then put a bandaid on things by her.

She will apply the bandaid until I get the answers depending on the issue etc.

As far as diagnosing myself.....I go with the facts. Together & with test results we try to determind the cause & what action to take.

It really bothers me that everyone isnt as fortunate to have a great CF Team as I do!

 

[JazzysMom]

I have not encountered this issue for 2 reasons. Many, many issues I have I dont address with my CF doctor. I tolerate (good or bad is not in ??, just stating facts) things & figure its CF or getting older.
<br />
<br />The few things that I do address with her are handled. If its not an area she is comfortable in or would rather have a specialist involved she will give me the name of who she wants me to see.....ENT, GI etc
<br />
<br />She also knows that most of her referrals are difficult for me since they are all down near my clinic which is 3 hours away from me.
<br />
<br />She follows up & asks if I addressed problem ABC with anyone or made appointments etc. She doesnt disregard them, but likes to find the answers from those more familiar rather then put a bandaid on things by her.
<br />
<br />She will apply the bandaid until I get the answers depending on the issue etc.
<br />
<br />As far as diagnosing myself.....I go with the facts. Together & with test results we try to determind the cause & what action to take.
<br />
<br />It really bothers me that everyone isnt as fortunate to have a great CF Team as I do!

 

[regina65]

I have a problem with my doctors not telling my sister about the cepacia bacteria and how easy it was to contract between cf patients . My sister always went to clinic . I on the other didnt go for a while . But in 2003 i was in the hospital for a tuneup .I had psuedomonas they said and that was it. I knew my sister already had psuedomonas. There was never any mention of us giving something to each other . We had the same doctor. And then in 2008 my sister says she has burkholderia cepacia.We worked together for 3 years. She got pregnant and they said if the meropenum didn't work they were out of options . Then she caught a staff in her iv that showed up in her blood when she was in the hospital. My sister said one of the nurses always came in without gloves or a cover up. The hospital didn't say that but how else could she have gotten it because she was in isolation and could not leave the room . I mean really what is that for . We have to be couped up and they bring it in to us .I had a nurse come in my room when i was in the hospital at 3 am without anything on and messing with my pic line . To say the least i was pessed. And the cleaning women had a cold and came in my room. The respiratory therapist was there and ran her out. It is really pathetic that the hospital doesn't stress to employess the spread of colds and viruses in the hospital to the patients . Well i guess i have vented enough for today. But i still think my sister would have lived longer if she hadn't got the staff while she in the hospital.

regina/44/w/cf/b cepacia/mrsa

 

[regina65]

I have a problem with my doctors not telling my sister about the cepacia bacteria and how easy it was to contract between cf patients . My sister always went to clinic . I on the other didnt go for a while . But in 2003 i was in the hospital for a tuneup .I had psuedomonas they said and that was it. I knew my sister already had psuedomonas. There was never any mention of us giving something to each other . We had the same doctor. And then in 2008 my sister says she has burkholderia cepacia.We worked together for 3 years. She got pregnant and they said if the meropenum didn't work they were out of options . Then she caught a staff in her iv that showed up in her blood when she was in the hospital. My sister said one of the nurses always came in without gloves or a cover up. The hospital didn't say that but how else could she have gotten it because she was in isolation and could not leave the room . I mean really what is that for . We have to be couped up and they bring it in to us .I had a nurse come in my room when i was in the hospital at 3 am without anything on and messing with my pic line . To say the least i was pessed. And the cleaning women had a cold and came in my room. The respiratory therapist was there and ran her out. It is really pathetic that the hospital doesn't stress to employess the spread of colds and viruses in the hospital to the patients . Well i guess i have vented enough for today. But i still think my sister would have lived longer if she hadn't got the staff while she in the hospital.

regina/44/w/cf/b cepacia/mrsa

 

[regina65]

I have a problem with my doctors not telling my sister about the cepacia bacteria and how easy it was to contract between cf patients . My sister always went to clinic . I on the other didnt go for a while . But in 2003 i was in the hospital for a tuneup .I had psuedomonas they said and that was it. I knew my sister already had psuedomonas. There was never any mention of us giving something to each other . We had the same doctor. And then in 2008 my sister says she has burkholderia cepacia.We worked together for 3 years. She got pregnant and they said if the meropenum didn't work they were out of options . Then she caught a staff in her iv that showed up in her blood when she was in the hospital. My sister said one of the nurses always came in without gloves or a cover up. The hospital didn't say that but how else could she have gotten it because she was in isolation and could not leave the room . I mean really what is that for . We have to be couped up and they bring it in to us .I had a nurse come in my room when i was in the hospital at 3 am without anything on and messing with my pic line . To say the least i was pessed. And the cleaning women had a cold and came in my room. The respiratory therapist was there and ran her out. It is really pathetic that the hospital doesn't stress to employess the spread of colds and viruses in the hospital to the patients . Well i guess i have vented enough for today. But i still think my sister would have lived longer if she hadn't got the staff while she in the hospital.

regina/44/w/cf/b cepacia/mrsa

 

[regina65]

I have a problem with my doctors not telling my sister about the cepacia bacteria and how easy it was to contract between cf patients . My sister always went to clinic . I on the other didnt go for a while . But in 2003 i was in the hospital for a tuneup .I had psuedomonas they said and that was it. I knew my sister already had psuedomonas. There was never any mention of us giving something to each other . We had the same doctor. And then in 2008 my sister says she has burkholderia cepacia.We worked together for 3 years. She got pregnant and they said if the meropenum didn't work they were out of options . Then she caught a staff in her iv that showed up in her blood when she was in the hospital. My sister said one of the nurses always came in without gloves or a cover up. The hospital didn't say that but how else could she have gotten it because she was in isolation and could not leave the room . I mean really what is that for . We have to be couped up and they bring it in to us .I had a nurse come in my room when i was in the hospital at 3 am without anything on and messing with my pic line . To say the least i was pessed. And the cleaning women had a cold and came in my room. The respiratory therapist was there and ran her out. It is really pathetic that the hospital doesn't stress to employess the spread of colds and viruses in the hospital to the patients . Well i guess i have vented enough for today. But i still think my sister would have lived longer if she hadn't got the staff while she in the hospital.

regina/44/w/cf/b cepacia/mrsa

 

[regina65]

I have a problem with my doctors not telling my sister about the cepacia bacteria and how easy it was to contract between cf patients . My sister always went to clinic . I on the other didnt go for a while . But in 2003 i was in the hospital for a tuneup .I had psuedomonas they said and that was it. I knew my sister already had psuedomonas. There was never any mention of us giving something to each other . We had the same doctor. And then in 2008 my sister says she has burkholderia cepacia.We worked together for 3 years. She got pregnant and they said if the meropenum didn't work they were out of options . Then she caught a staff in her iv that showed up in her blood when she was in the hospital. My sister said one of the nurses always came in without gloves or a cover up. The hospital didn't say that but how else could she have gotten it because she was in isolation and could not leave the room . I mean really what is that for . We have to be couped up and they bring it in to us .I had a nurse come in my room when i was in the hospital at 3 am without anything on and messing with my pic line . To say the least i was pessed. And the cleaning women had a cold and came in my room. The respiratory therapist was there and ran her out. It is really pathetic that the hospital doesn't stress to employess the spread of colds and viruses in the hospital to the patients . Well i guess i have vented enough for today. But i still think my sister would have lived longer if she hadn't got the staff while she in the hospital.
<br />
<br /> regina/44/w/cf/b cepacia/mrsa

 

[nu65]

Yes, I feel that as we get older there are less options for us. Therefore, doctors don't like to bring it up as a new problem. I tend to attribute a lot of my problems to progressive lung disease, like JazzysMom. Just getting older and such. But when I feel like something new needs to be tried or whatever, I bring it up to the doctors, who usually end up agreeing with me. We are experts on ourselves. It sucks that there is still such limited care for adult CFers besides transplant. It's so frustrating.

 

[nu65]

Yes, I feel that as we get older there are less options for us. Therefore, doctors don't like to bring it up as a new problem. I tend to attribute a lot of my problems to progressive lung disease, like JazzysMom. Just getting older and such. But when I feel like something new needs to be tried or whatever, I bring it up to the doctors, who usually end up agreeing with me. We are experts on ourselves. It sucks that there is still such limited care for adult CFers besides transplant. It's so frustrating.

 

[nu65]

Yes, I feel that as we get older there are less options for us. Therefore, doctors don't like to bring it up as a new problem. I tend to attribute a lot of my problems to progressive lung disease, like JazzysMom. Just getting older and such. But when I feel like something new needs to be tried or whatever, I bring it up to the doctors, who usually end up agreeing with me. We are experts on ourselves. It sucks that there is still such limited care for adult CFers besides transplant. It's so frustrating.

 

[nu65]

Yes, I feel that as we get older there are less options for us. Therefore, doctors don't like to bring it up as a new problem. I tend to attribute a lot of my problems to progressive lung disease, like JazzysMom. Just getting older and such. But when I feel like something new needs to be tried or whatever, I bring it up to the doctors, who usually end up agreeing with me. We are experts on ourselves. It sucks that there is still such limited care for adult CFers besides transplant. It's so frustrating.

 

[nu65]

Yes, I feel that as we get older there are less options for us. Therefore, doctors don't like to bring it up as a new problem. I tend to attribute a lot of my problems to progressive lung disease, like JazzysMom. Just getting older and such. But when I feel like something new needs to be tried or whatever, I bring it up to the doctors, who usually end up agreeing with me. We are experts on ourselves. It sucks that there is still such limited care for adult CFers besides transplant. It's so frustrating.