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CF center vs pulmonologist

X

xosder22

New member
recently I learned that the tucson cf center may lose its adult center status and they may send the adult patients up to phoenix.

i know this topic has been discussed before but here is what im looking for.

for those adult cf patients who have been seen both cf center docs and regular adult pulmonologist please answer my questions if you can.

1. currently I am extremely proactive in my care and very involved and my current docs know that when i say i need to be admitted to the hospital they admit me on my word. for those seeing a adult pulm. dr. does he/she listen to you or do they try to go off on their own agenda.

2. do you feel like you get the same, less, or better care?

thank you for your responses as im trying to be prepared for the docs that i have seen for the last 20 years not seeing me anymore which is a worst case scenario for me
 
X

xosder22

New member
recently I learned that the tucson cf center may lose its adult center status and they may send the adult patients up to phoenix.

i know this topic has been discussed before but here is what im looking for.

for those adult cf patients who have been seen both cf center docs and regular adult pulmonologist please answer my questions if you can.

1. currently I am extremely proactive in my care and very involved and my current docs know that when i say i need to be admitted to the hospital they admit me on my word. for those seeing a adult pulm. dr. does he/she listen to you or do they try to go off on their own agenda.

2. do you feel like you get the same, less, or better care?

thank you for your responses as im trying to be prepared for the docs that i have seen for the last 20 years not seeing me anymore which is a worst case scenario for me
 
X

xosder22

New member
recently I learned that the tucson cf center may lose its adult center status and they may send the adult patients up to phoenix.
<br />
<br />i know this topic has been discussed before but here is what im looking for.
<br />
<br />for those adult cf patients who have been seen both cf center docs and regular adult pulmonologist please answer my questions if you can.
<br />
<br />1. currently I am extremely proactive in my care and very involved and my current docs know that when i say i need to be admitted to the hospital they admit me on my word. for those seeing a adult pulm. dr. does he/she listen to you or do they try to go off on their own agenda.
<br />
<br />2. do you feel like you get the same, less, or better care?
<br />
<br />thank you for your responses as im trying to be prepared for the docs that i have seen for the last 20 years not seeing me anymore which is a worst case scenario for me
 
W

windex125

Guest
I have to say that havg a CF dr. was a big difference for me I am a women 55 and I saw a Pulmonologist in my early 20's vs finally getting to a CF center at 25 they are just more in tune with my needs, they listen to what we say most times as who knows our bodies best? plus being in tune with the disease is the most important. There were so many things I did not know and was not flwg.I got along for so long with out alot. but once I reached my 30's that's when things really started to get more complicated, now I know I cld only continue with a CF center, if my center was move/close I know I would only be comfortable being in touch with a CF pul. This of course is only my opionion and experience. But from accessing my port to knowg when I need IV's wld a reg.pulm. agree with me?
 
W

windex125

Guest
I have to say that havg a CF dr. was a big difference for me I am a women 55 and I saw a Pulmonologist in my early 20's vs finally getting to a CF center at 25 they are just more in tune with my needs, they listen to what we say most times as who knows our bodies best? plus being in tune with the disease is the most important. There were so many things I did not know and was not flwg.I got along for so long with out alot. but once I reached my 30's that's when things really started to get more complicated, now I know I cld only continue with a CF center, if my center was move/close I know I would only be comfortable being in touch with a CF pul. This of course is only my opionion and experience. But from accessing my port to knowg when I need IV's wld a reg.pulm. agree with me?
 
W

windex125

Guest
I have to say that havg a CF dr. was a big difference for me I am a women 55 and I saw a Pulmonologist in my early 20's vs finally getting to a CF center at 25 they are just more in tune with my needs, they listen to what we say most times as who knows our bodies best? plus being in tune with the disease is the most important. There were so many things I did not know and was not flwg.I got along for so long with out alot. but once I reached my 30's that's when things really started to get more complicated, now I know I cld only continue with a CF center, if my center was move/close I know I would only be comfortable being in touch with a CF pul. This of course is only my opionion and experience. But from accessing my port to knowg when I need IV's wld a reg.pulm. agree with me?
 
K

kmaried

New member
Hey Xosder...

I've seen both and highly recommend staying w/ an adult CF center. Reasons why the CF center was better...

- knew how to deal w/ all aspects of CF (non-pulmonary) when I started having issues such as arthritis
- participates in clinical trials... which means I can!
- more up to date on new therapies / ideas
- knew other specialists w/ CF knowledge to refer me to... for example, he sent me to an ENT that he knew already had a number of CF patients and CF knowledge
- better infection control
- access to a whole team... social worker etc

My pulmonologist was more than happy to kinda follow my lead. Problem was, he kinda got into a rut w/ prescribing the same stuff all the time... just b/c I think that is what he had experience in and was comfortable with. As soon as I went back to a CF center, they started mixing it up, and that was a GOOD thing.

Just my thoughts!
Kris
28w/cf
 
K

kmaried

New member
Hey Xosder...

I've seen both and highly recommend staying w/ an adult CF center. Reasons why the CF center was better...

- knew how to deal w/ all aspects of CF (non-pulmonary) when I started having issues such as arthritis
- participates in clinical trials... which means I can!
- more up to date on new therapies / ideas
- knew other specialists w/ CF knowledge to refer me to... for example, he sent me to an ENT that he knew already had a number of CF patients and CF knowledge
- better infection control
- access to a whole team... social worker etc

My pulmonologist was more than happy to kinda follow my lead. Problem was, he kinda got into a rut w/ prescribing the same stuff all the time... just b/c I think that is what he had experience in and was comfortable with. As soon as I went back to a CF center, they started mixing it up, and that was a GOOD thing.

Just my thoughts!
Kris
28w/cf
 
K

kmaried

New member
Hey Xosder...
<br />
<br />I've seen both and highly recommend staying w/ an adult CF center. Reasons why the CF center was better...
<br />
<br />- knew how to deal w/ all aspects of CF (non-pulmonary) when I started having issues such as arthritis
<br />- participates in clinical trials... which means I can!
<br />- more up to date on new therapies / ideas
<br />- knew other specialists w/ CF knowledge to refer me to... for example, he sent me to an ENT that he knew already had a number of CF patients and CF knowledge
<br />- better infection control
<br />- access to a whole team... social worker etc
<br />
<br />My pulmonologist was more than happy to kinda follow my lead. Problem was, he kinda got into a rut w/ prescribing the same stuff all the time... just b/c I think that is what he had experience in and was comfortable with. As soon as I went back to a CF center, they started mixing it up, and that was a GOOD thing.
<br />
<br />Just my thoughts!
<br />Kris
<br />28w/cf
 
D

dbtoo

New member
The 'adult' CF clinic in phoenix is run by the Phoenix Children's Hospital. You get to see the Child Pulmonologysts there. No offense, but they treated me like I was a child. I got mail addressed to 'the parents of...', they perscribed dosages that would have been for child strength, they had equipement sized for children... etc. I found it to be less than desirable.

I found a wonderful pulmonologyst in phoenix who knows and treats me as an adult with CF.
 
D

dbtoo

New member
The 'adult' CF clinic in phoenix is run by the Phoenix Children's Hospital. You get to see the Child Pulmonologysts there. No offense, but they treated me like I was a child. I got mail addressed to 'the parents of...', they perscribed dosages that would have been for child strength, they had equipement sized for children... etc. I found it to be less than desirable.

I found a wonderful pulmonologyst in phoenix who knows and treats me as an adult with CF.
 
D

dbtoo

New member
The 'adult' CF clinic in phoenix is run by the Phoenix Children's Hospital. You get to see the Child Pulmonologysts there. No offense, but they treated me like I was a child. I got mail addressed to 'the parents of...', they perscribed dosages that would have been for child strength, they had equipement sized for children... etc. I found it to be less than desirable.
<br />
<br />I found a wonderful pulmonologyst in phoenix who knows and treats me as an adult with CF.
 
E

ehtansky21

New member
We live in Hawaii and have no access to a cf clinic (since we are not military) The one thing that makes me comfortable with this, is that we are still in contact with our CF center in Phoenix. We will visit them once a year and if we have any troubles, we know we can call them and get their advice.

So...could you kind of do that??? Have a pulmonologist in Tucson, but make the drive up every year or every 6 months, just to make sure all is good?? You definitely get used to the drive after a couple times, it does get quite boring though<img src="i/expressions/face-icon-small-smile.gif" border="0">

blessings,
missa
 
E

ehtansky21

New member
We live in Hawaii and have no access to a cf clinic (since we are not military) The one thing that makes me comfortable with this, is that we are still in contact with our CF center in Phoenix. We will visit them once a year and if we have any troubles, we know we can call them and get their advice.

So...could you kind of do that??? Have a pulmonologist in Tucson, but make the drive up every year or every 6 months, just to make sure all is good?? You definitely get used to the drive after a couple times, it does get quite boring though<img src="i/expressions/face-icon-small-smile.gif" border="0">

blessings,
missa
 
E

ehtansky21

New member
We live in Hawaii and have no access to a cf clinic (since we are not military) The one thing that makes me comfortable with this, is that we are still in contact with our CF center in Phoenix. We will visit them once a year and if we have any troubles, we know we can call them and get their advice.
<br />
<br />So...could you kind of do that??? Have a pulmonologist in Tucson, but make the drive up every year or every 6 months, just to make sure all is good?? You definitely get used to the drive after a couple times, it does get quite boring though<img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />blessings,
<br />missa
 
J

Jeana

New member
I had a pulmonologist in high school/college and an ENT doc and due to that I feel that my health went downhill. The pulmonologist did not know or let me know about Pulmozyme. The ENT doc treated my sinus infections with Cipro for ten years and I became resistant to it. I feel that they are just not as much in tune or have up to date suggestions/treatments for people with CF. Also, they did not do CF drug studies and I like to be at the cutting edge of treatments.
 
J

Jeana

New member
I had a pulmonologist in high school/college and an ENT doc and due to that I feel that my health went downhill. The pulmonologist did not know or let me know about Pulmozyme. The ENT doc treated my sinus infections with Cipro for ten years and I became resistant to it. I feel that they are just not as much in tune or have up to date suggestions/treatments for people with CF. Also, they did not do CF drug studies and I like to be at the cutting edge of treatments.
 
J

Jeana

New member
I had a pulmonologist in high school/college and an ENT doc and due to that I feel that my health went downhill. The pulmonologist did not know or let me know about Pulmozyme. The ENT doc treated my sinus infections with Cipro for ten years and I became resistant to it. I feel that they are just not as much in tune or have up to date suggestions/treatments for people with CF. Also, they did not do CF drug studies and I like to be at the cutting edge of treatments.
 
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