I was just diagnosed with B. Cepacia! What is B. Cepacia???

S

Sweetness81

New member
I am based out of Oregon. We only have one clinic in our whole state. It is the Oregon Health Science University. This new information makes alot of sense to me. When I called to ask what strain I had, I also asked when I first cultered positive for it. The dr.s said 9-5-2000. So yes, I apparently have been testing positive for it for years and they didn't tell me. That is very frustrating. Stuff like that has happened all of my life. The cf doctors rotate out of our clinic every 2 years. The only doctors that stay are the pediatricians for the children with cf. The adult ones are always moving. So I never know who I see when I travel 250 miles up to portland, OR. In my state I dont have a choice about who I go see. I wish I did though. I don't know what medicine it will be yet. This health care is all that I have known, I have never been to any other clinic. Except for 2004 when I traveled over to bethesda, Maryland for a clinical trial at the NIH! besides that? I have always been here in oregon.

Yeah, the doctor told me that I had cepacia complex with multivorans. Now that I have read some of your responses, I don't understand all of this. I just know that I keep culturing positive for two bacteria in my lungs, that always cause gram negative bacteria in mylungs as well as fungal bacteria. So, because of the test results showing that. I think I am really confused now...I don't know what to think. I just know what I was told over the phone.

Am I supposed to be getting something different?
Am I missing something here that I should know for my health care?
 
S

Sweetness81

New member
I am based out of Oregon. We only have one clinic in our whole state. It is the Oregon Health Science University. This new information makes alot of sense to me. When I called to ask what strain I had, I also asked when I first cultered positive for it. The dr.s said 9-5-2000. So yes, I apparently have been testing positive for it for years and they didn't tell me. That is very frustrating. Stuff like that has happened all of my life. The cf doctors rotate out of our clinic every 2 years. The only doctors that stay are the pediatricians for the children with cf. The adult ones are always moving. So I never know who I see when I travel 250 miles up to portland, OR. In my state I dont have a choice about who I go see. I wish I did though. I don't know what medicine it will be yet. This health care is all that I have known, I have never been to any other clinic. Except for 2004 when I traveled over to bethesda, Maryland for a clinical trial at the NIH! besides that? I have always been here in oregon.

Yeah, the doctor told me that I had cepacia complex with multivorans. Now that I have read some of your responses, I don't understand all of this. I just know that I keep culturing positive for two bacteria in my lungs, that always cause gram negative bacteria in mylungs as well as fungal bacteria. So, because of the test results showing that. I think I am really confused now...I don't know what to think. I just know what I was told over the phone.

Am I supposed to be getting something different?
Am I missing something here that I should know for my health care?
 
S

Sweetness81

New member
I am based out of Oregon. We only have one clinic in our whole state. It is the Oregon Health Science University. This new information makes alot of sense to me. When I called to ask what strain I had, I also asked when I first cultered positive for it. The dr.s said 9-5-2000. So yes, I apparently have been testing positive for it for years and they didn't tell me. That is very frustrating. Stuff like that has happened all of my life. The cf doctors rotate out of our clinic every 2 years. The only doctors that stay are the pediatricians for the children with cf. The adult ones are always moving. So I never know who I see when I travel 250 miles up to portland, OR. In my state I dont have a choice about who I go see. I wish I did though. I don't know what medicine it will be yet. This health care is all that I have known, I have never been to any other clinic. Except for 2004 when I traveled over to bethesda, Maryland for a clinical trial at the NIH! besides that? I have always been here in oregon.

Yeah, the doctor told me that I had cepacia complex with multivorans. Now that I have read some of your responses, I don't understand all of this. I just know that I keep culturing positive for two bacteria in my lungs, that always cause gram negative bacteria in mylungs as well as fungal bacteria. So, because of the test results showing that. I think I am really confused now...I don't know what to think. I just know what I was told over the phone.

Am I supposed to be getting something different?
Am I missing something here that I should know for my health care?
 
S

Sweetness81

New member
I am based out of Oregon. We only have one clinic in our whole state. It is the Oregon Health Science University. This new information makes alot of sense to me. When I called to ask what strain I had, I also asked when I first cultered positive for it. The dr.s said 9-5-2000. So yes, I apparently have been testing positive for it for years and they didn't tell me. That is very frustrating. Stuff like that has happened all of my life. The cf doctors rotate out of our clinic every 2 years. The only doctors that stay are the pediatricians for the children with cf. The adult ones are always moving. So I never know who I see when I travel 250 miles up to portland, OR. In my state I dont have a choice about who I go see. I wish I did though. I don't know what medicine it will be yet. This health care is all that I have known, I have never been to any other clinic. Except for 2004 when I traveled over to bethesda, Maryland for a clinical trial at the NIH! besides that? I have always been here in oregon.

Yeah, the doctor told me that I had cepacia complex with multivorans. Now that I have read some of your responses, I don't understand all of this. I just know that I keep culturing positive for two bacteria in my lungs, that always cause gram negative bacteria in mylungs as well as fungal bacteria. So, because of the test results showing that. I think I am really confused now...I don't know what to think. I just know what I was told over the phone.

Am I supposed to be getting something different?
Am I missing something here that I should know for my health care?
 
S

Sweetness81

New member
I am based out of Oregon. We only have one clinic in our whole state. It is the Oregon Health Science University. This new information makes alot of sense to me. When I called to ask what strain I had, I also asked when I first cultered positive for it. The dr.s said 9-5-2000. So yes, I apparently have been testing positive for it for years and they didn't tell me. That is very frustrating. Stuff like that has happened all of my life. The cf doctors rotate out of our clinic every 2 years. The only doctors that stay are the pediatricians for the children with cf. The adult ones are always moving. So I never know who I see when I travel 250 miles up to portland, OR. In my state I dont have a choice about who I go see. I wish I did though. I don't know what medicine it will be yet. This health care is all that I have known, I have never been to any other clinic. Except for 2004 when I traveled over to bethesda, Maryland for a clinical trial at the NIH! besides that? I have always been here in oregon.
<br />
<br />Yeah, the doctor told me that I had cepacia complex with multivorans. Now that I have read some of your responses, I don't understand all of this. I just know that I keep culturing positive for two bacteria in my lungs, that always cause gram negative bacteria in mylungs as well as fungal bacteria. So, because of the test results showing that. I think I am really confused now...I don't know what to think. I just know what I was told over the phone.
<br />
<br />Am I supposed to be getting something different?
<br />Am I missing something here that I should know for my health care?
 
T

theLostMiler

New member
Have you ever considered Boise, ID for a CF center (I am trying to think of other CF centers that might be within reason to travel to in a different state) or is there any on the Washington border? I live in Nevada (Northern, Vegas has a CF center but its 6-8 hours away) and my clinic is 4+ hours away, in San Fran (Sacramento is closer, but my ped doctor is part of a Cf Center where the pediatic hospital is in Oakland, so in transition I saw adult docs across the bay as the adult center). Growing up I had to drive 2 1/2 hours to where I live now (for college) to see my ped doctor who flew in from oakland and had a clinic for cf and asthma kids.

What I do is I have a local pulmonologist that basically writes the orders I need. I still have to "see" him, and he has provided some additional treatment forms on top of my CF clinic, but my Cf clinic are the brains of the operation and my local guy just "relays" pfts, sputum, blood etc tests. For hospital I go to San Fran still.

Just wondering if a system like this might work out for you too?
 
T

theLostMiler

New member
Have you ever considered Boise, ID for a CF center (I am trying to think of other CF centers that might be within reason to travel to in a different state) or is there any on the Washington border? I live in Nevada (Northern, Vegas has a CF center but its 6-8 hours away) and my clinic is 4+ hours away, in San Fran (Sacramento is closer, but my ped doctor is part of a Cf Center where the pediatic hospital is in Oakland, so in transition I saw adult docs across the bay as the adult center). Growing up I had to drive 2 1/2 hours to where I live now (for college) to see my ped doctor who flew in from oakland and had a clinic for cf and asthma kids.

What I do is I have a local pulmonologist that basically writes the orders I need. I still have to "see" him, and he has provided some additional treatment forms on top of my CF clinic, but my Cf clinic are the brains of the operation and my local guy just "relays" pfts, sputum, blood etc tests. For hospital I go to San Fran still.

Just wondering if a system like this might work out for you too?
 
T

theLostMiler

New member
Have you ever considered Boise, ID for a CF center (I am trying to think of other CF centers that might be within reason to travel to in a different state) or is there any on the Washington border? I live in Nevada (Northern, Vegas has a CF center but its 6-8 hours away) and my clinic is 4+ hours away, in San Fran (Sacramento is closer, but my ped doctor is part of a Cf Center where the pediatic hospital is in Oakland, so in transition I saw adult docs across the bay as the adult center). Growing up I had to drive 2 1/2 hours to where I live now (for college) to see my ped doctor who flew in from oakland and had a clinic for cf and asthma kids.

What I do is I have a local pulmonologist that basically writes the orders I need. I still have to "see" him, and he has provided some additional treatment forms on top of my CF clinic, but my Cf clinic are the brains of the operation and my local guy just "relays" pfts, sputum, blood etc tests. For hospital I go to San Fran still.

Just wondering if a system like this might work out for you too?
 
T

theLostMiler

New member
Have you ever considered Boise, ID for a CF center (I am trying to think of other CF centers that might be within reason to travel to in a different state) or is there any on the Washington border? I live in Nevada (Northern, Vegas has a CF center but its 6-8 hours away) and my clinic is 4+ hours away, in San Fran (Sacramento is closer, but my ped doctor is part of a Cf Center where the pediatic hospital is in Oakland, so in transition I saw adult docs across the bay as the adult center). Growing up I had to drive 2 1/2 hours to where I live now (for college) to see my ped doctor who flew in from oakland and had a clinic for cf and asthma kids.

What I do is I have a local pulmonologist that basically writes the orders I need. I still have to "see" him, and he has provided some additional treatment forms on top of my CF clinic, but my Cf clinic are the brains of the operation and my local guy just "relays" pfts, sputum, blood etc tests. For hospital I go to San Fran still.

Just wondering if a system like this might work out for you too?
 
T

theLostMiler

New member
Have you ever considered Boise, ID for a CF center (I am trying to think of other CF centers that might be within reason to travel to in a different state) or is there any on the Washington border? I live in Nevada (Northern, Vegas has a CF center but its 6-8 hours away) and my clinic is 4+ hours away, in San Fran (Sacramento is closer, but my ped doctor is part of a Cf Center where the pediatic hospital is in Oakland, so in transition I saw adult docs across the bay as the adult center). Growing up I had to drive 2 1/2 hours to where I live now (for college) to see my ped doctor who flew in from oakland and had a clinic for cf and asthma kids.
<br />
<br />What I do is I have a local pulmonologist that basically writes the orders I need. I still have to "see" him, and he has provided some additional treatment forms on top of my CF clinic, but my Cf clinic are the brains of the operation and my local guy just "relays" pfts, sputum, blood etc tests. For hospital I go to San Fran still.
<br />
<br />Just wondering if a system like this might work out for you too?
 
S

Sweetness81

New member
You know, thats a good question. My travel to my clinic is about 4 and half hours too! I know its just insane! I have HMO insurance and unless it's like a severe emergency, no other state will accept my insurance.
Although, My husband and I are talking about moving to either another state, or closer to the cf center up in portland.
I did have a pulmonologist in my town about two years ago, but because I moved, Its extremely hard to get my pcp to refer me to a local one. She believes that my insurance won't cover that dr. because of the cf team. But I know better than that. Ive had one, ok Ive had three at one time before. But anyway, I think my current pcp has no clue what she is doing. She's been trying to give me meds for diabetes because my blood sugar is elevated at times to 130 fasting. However, my cf team says no because I have had alot of cf exacerbations that can cause the elevated blood sugar levels, and also I have hypothyroidism.

I kept getting tested for it in the cf hospital and it came up negative, so I have no idea why my pcp thought that I did have it. The pcp only went by the blood tester machine. Also, she thinks that if I get diabetes that it has nothing to do with cf. I told her that yes, cfers have the cfrd condition but the pcp didn't believe me. She said that I was wrong and that cf had no affiliation with diabetes. How crazy is that?

I am in the process of looking for another pcp. I'm sure that because you are also a cfer, that you understand the importantance of a correct diagnosis, and why it is extremely dangerous for a clueless doctor to try to misdiagnose us and the danger behind all of that. I cannot afford to have her make this kind of a mistake. My life depends upon caution and even a little wisdom for goodness sake!
I am her only cf patient. Now, that I have seen her a couple times and she is already trying to make a mess of things, I will not be with her much longer.
Finding a good doctor here is extremely hard to do. I admit that most doctors are here for the money and not really for the patients. There are a few good ones though, who really do care and want to do good. But they are like a diamond in the rough. Very hard to come by. I wish so much that I really knew what is going on with me, and why my cf is so exacerbated alot of the time now days.
(Sigh) Anyway, thanks for letting me vent alittle bit. Sorry, If I rambled, but it kind of came out. I will keep posting updates as soon as I know something. I will get to the bottom of this mess, it will just take a while.

Can I ask how your doctor usually works with you? And,
How long did you test positive for B. cepacia before the dr. told you?
 
S

Sweetness81

New member
You know, thats a good question. My travel to my clinic is about 4 and half hours too! I know its just insane! I have HMO insurance and unless it's like a severe emergency, no other state will accept my insurance.
Although, My husband and I are talking about moving to either another state, or closer to the cf center up in portland.
I did have a pulmonologist in my town about two years ago, but because I moved, Its extremely hard to get my pcp to refer me to a local one. She believes that my insurance won't cover that dr. because of the cf team. But I know better than that. Ive had one, ok Ive had three at one time before. But anyway, I think my current pcp has no clue what she is doing. She's been trying to give me meds for diabetes because my blood sugar is elevated at times to 130 fasting. However, my cf team says no because I have had alot of cf exacerbations that can cause the elevated blood sugar levels, and also I have hypothyroidism.

I kept getting tested for it in the cf hospital and it came up negative, so I have no idea why my pcp thought that I did have it. The pcp only went by the blood tester machine. Also, she thinks that if I get diabetes that it has nothing to do with cf. I told her that yes, cfers have the cfrd condition but the pcp didn't believe me. She said that I was wrong and that cf had no affiliation with diabetes. How crazy is that?

I am in the process of looking for another pcp. I'm sure that because you are also a cfer, that you understand the importantance of a correct diagnosis, and why it is extremely dangerous for a clueless doctor to try to misdiagnose us and the danger behind all of that. I cannot afford to have her make this kind of a mistake. My life depends upon caution and even a little wisdom for goodness sake!
I am her only cf patient. Now, that I have seen her a couple times and she is already trying to make a mess of things, I will not be with her much longer.
Finding a good doctor here is extremely hard to do. I admit that most doctors are here for the money and not really for the patients. There are a few good ones though, who really do care and want to do good. But they are like a diamond in the rough. Very hard to come by. I wish so much that I really knew what is going on with me, and why my cf is so exacerbated alot of the time now days.
(Sigh) Anyway, thanks for letting me vent alittle bit. Sorry, If I rambled, but it kind of came out. I will keep posting updates as soon as I know something. I will get to the bottom of this mess, it will just take a while.

Can I ask how your doctor usually works with you? And,
How long did you test positive for B. cepacia before the dr. told you?
 
S

Sweetness81

New member
You know, thats a good question. My travel to my clinic is about 4 and half hours too! I know its just insane! I have HMO insurance and unless it's like a severe emergency, no other state will accept my insurance.
Although, My husband and I are talking about moving to either another state, or closer to the cf center up in portland.
I did have a pulmonologist in my town about two years ago, but because I moved, Its extremely hard to get my pcp to refer me to a local one. She believes that my insurance won't cover that dr. because of the cf team. But I know better than that. Ive had one, ok Ive had three at one time before. But anyway, I think my current pcp has no clue what she is doing. She's been trying to give me meds for diabetes because my blood sugar is elevated at times to 130 fasting. However, my cf team says no because I have had alot of cf exacerbations that can cause the elevated blood sugar levels, and also I have hypothyroidism.

I kept getting tested for it in the cf hospital and it came up negative, so I have no idea why my pcp thought that I did have it. The pcp only went by the blood tester machine. Also, she thinks that if I get diabetes that it has nothing to do with cf. I told her that yes, cfers have the cfrd condition but the pcp didn't believe me. She said that I was wrong and that cf had no affiliation with diabetes. How crazy is that?

I am in the process of looking for another pcp. I'm sure that because you are also a cfer, that you understand the importantance of a correct diagnosis, and why it is extremely dangerous for a clueless doctor to try to misdiagnose us and the danger behind all of that. I cannot afford to have her make this kind of a mistake. My life depends upon caution and even a little wisdom for goodness sake!
I am her only cf patient. Now, that I have seen her a couple times and she is already trying to make a mess of things, I will not be with her much longer.
Finding a good doctor here is extremely hard to do. I admit that most doctors are here for the money and not really for the patients. There are a few good ones though, who really do care and want to do good. But they are like a diamond in the rough. Very hard to come by. I wish so much that I really knew what is going on with me, and why my cf is so exacerbated alot of the time now days.
(Sigh) Anyway, thanks for letting me vent alittle bit. Sorry, If I rambled, but it kind of came out. I will keep posting updates as soon as I know something. I will get to the bottom of this mess, it will just take a while.

Can I ask how your doctor usually works with you? And,
How long did you test positive for B. cepacia before the dr. told you?
 
S

Sweetness81

New member
You know, thats a good question. My travel to my clinic is about 4 and half hours too! I know its just insane! I have HMO insurance and unless it's like a severe emergency, no other state will accept my insurance.
Although, My husband and I are talking about moving to either another state, or closer to the cf center up in portland.
I did have a pulmonologist in my town about two years ago, but because I moved, Its extremely hard to get my pcp to refer me to a local one. She believes that my insurance won't cover that dr. because of the cf team. But I know better than that. Ive had one, ok Ive had three at one time before. But anyway, I think my current pcp has no clue what she is doing. She's been trying to give me meds for diabetes because my blood sugar is elevated at times to 130 fasting. However, my cf team says no because I have had alot of cf exacerbations that can cause the elevated blood sugar levels, and also I have hypothyroidism.

I kept getting tested for it in the cf hospital and it came up negative, so I have no idea why my pcp thought that I did have it. The pcp only went by the blood tester machine. Also, she thinks that if I get diabetes that it has nothing to do with cf. I told her that yes, cfers have the cfrd condition but the pcp didn't believe me. She said that I was wrong and that cf had no affiliation with diabetes. How crazy is that?

I am in the process of looking for another pcp. I'm sure that because you are also a cfer, that you understand the importantance of a correct diagnosis, and why it is extremely dangerous for a clueless doctor to try to misdiagnose us and the danger behind all of that. I cannot afford to have her make this kind of a mistake. My life depends upon caution and even a little wisdom for goodness sake!
I am her only cf patient. Now, that I have seen her a couple times and she is already trying to make a mess of things, I will not be with her much longer.
Finding a good doctor here is extremely hard to do. I admit that most doctors are here for the money and not really for the patients. There are a few good ones though, who really do care and want to do good. But they are like a diamond in the rough. Very hard to come by. I wish so much that I really knew what is going on with me, and why my cf is so exacerbated alot of the time now days.
(Sigh) Anyway, thanks for letting me vent alittle bit. Sorry, If I rambled, but it kind of came out. I will keep posting updates as soon as I know something. I will get to the bottom of this mess, it will just take a while.

Can I ask how your doctor usually works with you? And,
How long did you test positive for B. cepacia before the dr. told you?
 
S

Sweetness81

New member
You know, thats a good question. My travel to my clinic is about 4 and half hours too! I know its just insane! I have HMO insurance and unless it's like a severe emergency, no other state will accept my insurance.
<br />Although, My husband and I are talking about moving to either another state, or closer to the cf center up in portland.
<br />I did have a pulmonologist in my town about two years ago, but because I moved, Its extremely hard to get my pcp to refer me to a local one. She believes that my insurance won't cover that dr. because of the cf team. But I know better than that. Ive had one, ok Ive had three at one time before. But anyway, I think my current pcp has no clue what she is doing. She's been trying to give me meds for diabetes because my blood sugar is elevated at times to 130 fasting. However, my cf team says no because I have had alot of cf exacerbations that can cause the elevated blood sugar levels, and also I have hypothyroidism.
<br />
<br /> I kept getting tested for it in the cf hospital and it came up negative, so I have no idea why my pcp thought that I did have it. The pcp only went by the blood tester machine. Also, she thinks that if I get diabetes that it has nothing to do with cf. I told her that yes, cfers have the cfrd condition but the pcp didn't believe me. She said that I was wrong and that cf had no affiliation with diabetes. How crazy is that?
<br />
<br />I am in the process of looking for another pcp. I'm sure that because you are also a cfer, that you understand the importantance of a correct diagnosis, and why it is extremely dangerous for a clueless doctor to try to misdiagnose us and the danger behind all of that. I cannot afford to have her make this kind of a mistake. My life depends upon caution and even a little wisdom for goodness sake!
<br />I am her only cf patient. Now, that I have seen her a couple times and she is already trying to make a mess of things, I will not be with her much longer.
<br />Finding a good doctor here is extremely hard to do. I admit that most doctors are here for the money and not really for the patients. There are a few good ones though, who really do care and want to do good. But they are like a diamond in the rough. Very hard to come by. I wish so much that I really knew what is going on with me, and why my cf is so exacerbated alot of the time now days.
<br />(Sigh) Anyway, thanks for letting me vent alittle bit. Sorry, If I rambled, but it kind of came out. I will keep posting updates as soon as I know something. I will get to the bottom of this mess, it will just take a while.
<br />
<br />Can I ask how your doctor usually works with you? And,
<br />How long did you test positive for B. cepacia before the dr. told you?
 
T

theLostMiler

New member
hmm... as for b. cep culture,

Well I got called in April of 09 that my February 09 culture had b. cep. I did the culture in my local town, so I think that is why it took so long to notify my cf doctors about it. I didnt do any cultures in between the Feb and April... but it was confirmed again b/c that May I did a tune up in the hospital and had b. cep again.

Well, how I work with my doctors now is that I do montly to every 3 months checkups with my local doctor the pulmonologist, depending on if I am on IV's, the last time I saw my S.F. doctors and stuff like that. That local doctor doesnt have any hospital privledges so even if I wanted to do a hospitalization in NV, I cant.

I talk to my 'case coordinator' type lady in S.F. at least once every 3 weeks. She is very knowledgeable, but also works in the same office as the doctors so she can get direct information from the doctors practically instantly. I have her email as well so I will email updates on how I am doing that way as well. I make the S.F. drive about every 3 months. We keep very good phone/email contact, but my doctors in S.F. do admit, they like seeing me in person <img src="i/expressions/face-icon-small-smile.gif" border="0">

Here's an example of my "schedule" haha

Hospital from end of September to beginning of October
already had an appt. w/ local pulm. end of October
b/c of hospitalization did a 6 week follow up in November to S.F.
December with local pulm.
January with S.F.
February with local pulm.

Because of my bugs I kinda get consistant monitoring. I do get times where I have a month or two without clinics. My local guy feels that if he is going to be "signing" the orders so I can do home ivs and such in NV that he does actually want to see me. And like I said, he "tries" to analyze me, and he has 3 other cf'ers supposedly, but he is in no way a CF doctor, which he admits.

My local doctor suggested,

symbicort (felt I had an asthma component blocking FEV)
sinus flushes
more in depth 6 minute walk test to test o2 levels
osteoporis test
vitamin d blood tests
told me to take calcium w/ vitamin d along w/ aquADEKs
made an appointment with a local nutrionist

but my S.F. doctors are the ones who decide the actual treatment regimens, when I should come into the hospital etc... I also tend to value their answers more because they are CF focused rather than generic respiratory experienced. But like I said, it was nice to have a "fresh" aspect to contribute to my care.

Everyone keeps in very good contact with each other... probably in part because I am kinda unique even to my CF center for my combination of bugs, and I am lucky enough to actually feel like they do care and I am very comfortable with everyone.

Sorry so, umm, detailed I guess, but I wanted to give you a better picture of how it works with me, it is very beneficial b/c I do not want to move to CA haha.

Oh in S.F. I have a team there which consists of

CF Pulmonologist
Transplant Doctor
Infectious Diseases Doctor

all of which my coordinator there kinda "mans" the operation by keeping everyone together... she is great!
 
T

theLostMiler

New member
hmm... as for b. cep culture,

Well I got called in April of 09 that my February 09 culture had b. cep. I did the culture in my local town, so I think that is why it took so long to notify my cf doctors about it. I didnt do any cultures in between the Feb and April... but it was confirmed again b/c that May I did a tune up in the hospital and had b. cep again.

Well, how I work with my doctors now is that I do montly to every 3 months checkups with my local doctor the pulmonologist, depending on if I am on IV's, the last time I saw my S.F. doctors and stuff like that. That local doctor doesnt have any hospital privledges so even if I wanted to do a hospitalization in NV, I cant.

I talk to my 'case coordinator' type lady in S.F. at least once every 3 weeks. She is very knowledgeable, but also works in the same office as the doctors so she can get direct information from the doctors practically instantly. I have her email as well so I will email updates on how I am doing that way as well. I make the S.F. drive about every 3 months. We keep very good phone/email contact, but my doctors in S.F. do admit, they like seeing me in person <img src="i/expressions/face-icon-small-smile.gif" border="0">

Here's an example of my "schedule" haha

Hospital from end of September to beginning of October
already had an appt. w/ local pulm. end of October
b/c of hospitalization did a 6 week follow up in November to S.F.
December with local pulm.
January with S.F.
February with local pulm.

Because of my bugs I kinda get consistant monitoring. I do get times where I have a month or two without clinics. My local guy feels that if he is going to be "signing" the orders so I can do home ivs and such in NV that he does actually want to see me. And like I said, he "tries" to analyze me, and he has 3 other cf'ers supposedly, but he is in no way a CF doctor, which he admits.

My local doctor suggested,

symbicort (felt I had an asthma component blocking FEV)
sinus flushes
more in depth 6 minute walk test to test o2 levels
osteoporis test
vitamin d blood tests
told me to take calcium w/ vitamin d along w/ aquADEKs
made an appointment with a local nutrionist

but my S.F. doctors are the ones who decide the actual treatment regimens, when I should come into the hospital etc... I also tend to value their answers more because they are CF focused rather than generic respiratory experienced. But like I said, it was nice to have a "fresh" aspect to contribute to my care.

Everyone keeps in very good contact with each other... probably in part because I am kinda unique even to my CF center for my combination of bugs, and I am lucky enough to actually feel like they do care and I am very comfortable with everyone.

Sorry so, umm, detailed I guess, but I wanted to give you a better picture of how it works with me, it is very beneficial b/c I do not want to move to CA haha.

Oh in S.F. I have a team there which consists of

CF Pulmonologist
Transplant Doctor
Infectious Diseases Doctor

all of which my coordinator there kinda "mans" the operation by keeping everyone together... she is great!
 
T

theLostMiler

New member
hmm... as for b. cep culture,

Well I got called in April of 09 that my February 09 culture had b. cep. I did the culture in my local town, so I think that is why it took so long to notify my cf doctors about it. I didnt do any cultures in between the Feb and April... but it was confirmed again b/c that May I did a tune up in the hospital and had b. cep again.

Well, how I work with my doctors now is that I do montly to every 3 months checkups with my local doctor the pulmonologist, depending on if I am on IV's, the last time I saw my S.F. doctors and stuff like that. That local doctor doesnt have any hospital privledges so even if I wanted to do a hospitalization in NV, I cant.

I talk to my 'case coordinator' type lady in S.F. at least once every 3 weeks. She is very knowledgeable, but also works in the same office as the doctors so she can get direct information from the doctors practically instantly. I have her email as well so I will email updates on how I am doing that way as well. I make the S.F. drive about every 3 months. We keep very good phone/email contact, but my doctors in S.F. do admit, they like seeing me in person <img src="i/expressions/face-icon-small-smile.gif" border="0">

Here's an example of my "schedule" haha

Hospital from end of September to beginning of October
already had an appt. w/ local pulm. end of October
b/c of hospitalization did a 6 week follow up in November to S.F.
December with local pulm.
January with S.F.
February with local pulm.

Because of my bugs I kinda get consistant monitoring. I do get times where I have a month or two without clinics. My local guy feels that if he is going to be "signing" the orders so I can do home ivs and such in NV that he does actually want to see me. And like I said, he "tries" to analyze me, and he has 3 other cf'ers supposedly, but he is in no way a CF doctor, which he admits.

My local doctor suggested,

symbicort (felt I had an asthma component blocking FEV)
sinus flushes
more in depth 6 minute walk test to test o2 levels
osteoporis test
vitamin d blood tests
told me to take calcium w/ vitamin d along w/ aquADEKs
made an appointment with a local nutrionist

but my S.F. doctors are the ones who decide the actual treatment regimens, when I should come into the hospital etc... I also tend to value their answers more because they are CF focused rather than generic respiratory experienced. But like I said, it was nice to have a "fresh" aspect to contribute to my care.

Everyone keeps in very good contact with each other... probably in part because I am kinda unique even to my CF center for my combination of bugs, and I am lucky enough to actually feel like they do care and I am very comfortable with everyone.

Sorry so, umm, detailed I guess, but I wanted to give you a better picture of how it works with me, it is very beneficial b/c I do not want to move to CA haha.

Oh in S.F. I have a team there which consists of

CF Pulmonologist
Transplant Doctor
Infectious Diseases Doctor

all of which my coordinator there kinda "mans" the operation by keeping everyone together... she is great!
 
T

theLostMiler

New member
hmm... as for b. cep culture,

Well I got called in April of 09 that my February 09 culture had b. cep. I did the culture in my local town, so I think that is why it took so long to notify my cf doctors about it. I didnt do any cultures in between the Feb and April... but it was confirmed again b/c that May I did a tune up in the hospital and had b. cep again.

Well, how I work with my doctors now is that I do montly to every 3 months checkups with my local doctor the pulmonologist, depending on if I am on IV's, the last time I saw my S.F. doctors and stuff like that. That local doctor doesnt have any hospital privledges so even if I wanted to do a hospitalization in NV, I cant.

I talk to my 'case coordinator' type lady in S.F. at least once every 3 weeks. She is very knowledgeable, but also works in the same office as the doctors so she can get direct information from the doctors practically instantly. I have her email as well so I will email updates on how I am doing that way as well. I make the S.F. drive about every 3 months. We keep very good phone/email contact, but my doctors in S.F. do admit, they like seeing me in person <img src="i/expressions/face-icon-small-smile.gif" border="0">

Here's an example of my "schedule" haha

Hospital from end of September to beginning of October
already had an appt. w/ local pulm. end of October
b/c of hospitalization did a 6 week follow up in November to S.F.
December with local pulm.
January with S.F.
February with local pulm.

Because of my bugs I kinda get consistant monitoring. I do get times where I have a month or two without clinics. My local guy feels that if he is going to be "signing" the orders so I can do home ivs and such in NV that he does actually want to see me. And like I said, he "tries" to analyze me, and he has 3 other cf'ers supposedly, but he is in no way a CF doctor, which he admits.

My local doctor suggested,

symbicort (felt I had an asthma component blocking FEV)
sinus flushes
more in depth 6 minute walk test to test o2 levels
osteoporis test
vitamin d blood tests
told me to take calcium w/ vitamin d along w/ aquADEKs
made an appointment with a local nutrionist

but my S.F. doctors are the ones who decide the actual treatment regimens, when I should come into the hospital etc... I also tend to value their answers more because they are CF focused rather than generic respiratory experienced. But like I said, it was nice to have a "fresh" aspect to contribute to my care.

Everyone keeps in very good contact with each other... probably in part because I am kinda unique even to my CF center for my combination of bugs, and I am lucky enough to actually feel like they do care and I am very comfortable with everyone.

Sorry so, umm, detailed I guess, but I wanted to give you a better picture of how it works with me, it is very beneficial b/c I do not want to move to CA haha.

Oh in S.F. I have a team there which consists of

CF Pulmonologist
Transplant Doctor
Infectious Diseases Doctor

all of which my coordinator there kinda "mans" the operation by keeping everyone together... she is great!
 
T

theLostMiler

New member
hmm... as for b. cep culture,
<br />
<br />Well I got called in April of 09 that my February 09 culture had b. cep. I did the culture in my local town, so I think that is why it took so long to notify my cf doctors about it. I didnt do any cultures in between the Feb and April... but it was confirmed again b/c that May I did a tune up in the hospital and had b. cep again.
<br />
<br />Well, how I work with my doctors now is that I do montly to every 3 months checkups with my local doctor the pulmonologist, depending on if I am on IV's, the last time I saw my S.F. doctors and stuff like that. That local doctor doesnt have any hospital privledges so even if I wanted to do a hospitalization in NV, I cant.
<br />
<br />I talk to my 'case coordinator' type lady in S.F. at least once every 3 weeks. She is very knowledgeable, but also works in the same office as the doctors so she can get direct information from the doctors practically instantly. I have her email as well so I will email updates on how I am doing that way as well. I make the S.F. drive about every 3 months. We keep very good phone/email contact, but my doctors in S.F. do admit, they like seeing me in person <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Here's an example of my "schedule" haha
<br />
<br />Hospital from end of September to beginning of October
<br />already had an appt. w/ local pulm. end of October
<br />b/c of hospitalization did a 6 week follow up in November to S.F.
<br />December with local pulm.
<br />January with S.F.
<br />February with local pulm.
<br />
<br />Because of my bugs I kinda get consistant monitoring. I do get times where I have a month or two without clinics. My local guy feels that if he is going to be "signing" the orders so I can do home ivs and such in NV that he does actually want to see me. And like I said, he "tries" to analyze me, and he has 3 other cf'ers supposedly, but he is in no way a CF doctor, which he admits.
<br />
<br />My local doctor suggested,
<br />
<br />symbicort (felt I had an asthma component blocking FEV)
<br />sinus flushes
<br />more in depth 6 minute walk test to test o2 levels
<br />osteoporis test
<br />vitamin d blood tests
<br />told me to take calcium w/ vitamin d along w/ aquADEKs
<br />made an appointment with a local nutrionist
<br />
<br />but my S.F. doctors are the ones who decide the actual treatment regimens, when I should come into the hospital etc... I also tend to value their answers more because they are CF focused rather than generic respiratory experienced. But like I said, it was nice to have a "fresh" aspect to contribute to my care.
<br />
<br />Everyone keeps in very good contact with each other... probably in part because I am kinda unique even to my CF center for my combination of bugs, and I am lucky enough to actually feel like they do care and I am very comfortable with everyone.
<br />
<br />Sorry so, umm, detailed I guess, but I wanted to give you a better picture of how it works with me, it is very beneficial b/c I do not want to move to CA haha.
<br />
<br />Oh in S.F. I have a team there which consists of
<br />
<br />CF Pulmonologist
<br />Transplant Doctor
<br />Infectious Diseases Doctor
<br />
<br />all of which my coordinator there kinda "mans" the operation by keeping everyone together... she is great!
 
You must log in or register to reply here.
Top