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PLEASE READ - I really need help
- Thread starter Asexyblond23
- Start date
Hi - Im in seattle and go to the CF clinic at the UW. Let me help you out. I was just in clinic on monday. CF clinic is only Monday morning and sometimes can be hard to get into. And when you call Medical Specialties to set an appt they will just give you one despite not knowing the urgency sometimes. In that case, always ask to speak to the CF Triage Nurse, Lori, and you will get patched to her vmail. She will always get back to you that day if you call before 3. Also every morning the pulmonary nurses and docs have various clinics so if you call first thing always know they get back to you after lunch. If you want to bypass the Med Spec people, call Lori directly explaining your a new patient, etc, Her number 206.598.8446. Having said all that, she will most likely direct you to go to the ER if it is urgent so you can getcultured ASAP and start having the Pulmonary fellows follow you. UW/CF clinic is a teaching hospital so you won't actually meet the CF docs until you go to clinic buttheyPulmonary fellows are great and consult with the CF doctors instantly.
Hope this info helps. The CF docs are super smart and fantastic. I hope you enjoy the clinic.
Jenny
Hope this info helps. The CF docs are super smart and fantastic. I hope you enjoy the clinic.
Jenny
Hi - Im in seattle and go to the CF clinic at the UW. Let me help you out. I was just in clinic on monday. CF clinic is only Monday morning and sometimes can be hard to get into. And when you call Medical Specialties to set an appt they will just give you one despite not knowing the urgency sometimes. In that case, always ask to speak to the CF Triage Nurse, Lori, and you will get patched to her vmail. She will always get back to you that day if you call before 3. Also every morning the pulmonary nurses and docs have various clinics so if you call first thing always know they get back to you after lunch. If you want to bypass the Med Spec people, call Lori directly explaining your a new patient, etc, Her number 206.598.8446. Having said all that, she will most likely direct you to go to the ER if it is urgent so you can getcultured ASAP and start having the Pulmonary fellows follow you. UW/CF clinic is a teaching hospital so you won't actually meet the CF docs until you go to clinic buttheyPulmonary fellows are great and consult with the CF doctors instantly.
Hope this info helps. The CF docs are super smart and fantastic. I hope you enjoy the clinic.
Jenny
Hope this info helps. The CF docs are super smart and fantastic. I hope you enjoy the clinic.
Jenny
mamaScarlett
Active member
personally, I'd go to whatever legit cf center is closest, and show up at the ER. pitch a fit and you'll rise up the ladder from staff er doc, to pulmonologist on call, to cf doc on call.
mamaScarlett
Active member
personally, I'd go to whatever legit cf center is closest, and show up at the ER. pitch a fit and you'll rise up the ladder from staff er doc, to pulmonologist on call, to cf doc on call.
As for going to a CF specialist, for sure. But I live in Spain so I cannot give much advice.
I have been on that boat of being fully resistant to everything - and recently I cultured Achromobacter Xyloxidans (which I had never heard of before - but it went away). When you're fully resistant, they just combine 2-3 antibiotics. Like cypro + tobramicin + colistin.
And indeed, I have taken IV colistin many times!
Long-term inhaled colistin gives me some kind of bronchoespasm (severely out of breath for a couple hours), I figured that out after some 14 years of usage. Otherwise it seems to be a pretty friendly drug that pseudomonas nearly never get resistant to, for some reason!
I have been on that boat of being fully resistant to everything - and recently I cultured Achromobacter Xyloxidans (which I had never heard of before - but it went away). When you're fully resistant, they just combine 2-3 antibiotics. Like cypro + tobramicin + colistin.
And indeed, I have taken IV colistin many times!
Long-term inhaled colistin gives me some kind of bronchoespasm (severely out of breath for a couple hours), I figured that out after some 14 years of usage. Otherwise it seems to be a pretty friendly drug that pseudomonas nearly never get resistant to, for some reason!
As for going to a CF specialist, for sure. But I live in Spain so I cannot give much advice.
I have been on that boat of being fully resistant to everything - and recently I cultured Achromobacter Xyloxidans (which I had never heard of before - but it went away). When you're fully resistant, they just combine 2-3 antibiotics. Like cypro + tobramicin + colistin.
And indeed, I have taken IV colistin many times!
Long-term inhaled colistin gives me some kind of bronchoespasm (severely out of breath for a couple hours), I figured that out after some 14 years of usage. Otherwise it seems to be a pretty friendly drug that pseudomonas nearly never get resistant to, for some reason!
I have been on that boat of being fully resistant to everything - and recently I cultured Achromobacter Xyloxidans (which I had never heard of before - but it went away). When you're fully resistant, they just combine 2-3 antibiotics. Like cypro + tobramicin + colistin.
And indeed, I have taken IV colistin many times!
Long-term inhaled colistin gives me some kind of bronchoespasm (severely out of breath for a couple hours), I figured that out after some 14 years of usage. Otherwise it seems to be a pretty friendly drug that pseudomonas nearly never get resistant to, for some reason!
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jenny26</b></i> Hi - Im in seattle and go to the CF clinic at the UW. Let me help you out. I was just in clinic on monday. CF clinic is only Monday morning and sometimes can be hard to get into. And when you call Medical Specialties to set an appt they will just give you one despite not knowing the urgency sometimes. In that case, always ask to speak to the CF Triage Nurse, Lori, and you will get patched to her vmail. She will always get back to you that day if you call before 3. Also every morning the pulmonary nurses and docs have various clinics so if you call first thing always know they get back to you after lunch. If you want to bypass the Med Spec people, call Lori directly explaining your a new patient, etc, Her number 206.598.8446. Having said all that, she will most likely direct you to go to the ER if it is urgent so you can getcultured ASAP and start having the Pulmonary fellows follow you. UW/CF clinic is a teaching hospital so you won't actually meet the CF docs until you go to clinic buttheyPulmonary fellows are great and consult with the CF doctors instantly. Hope this info helps. The CF docs are super smart and fantastic. I hope you enjoy the clinic. Jenny</end quote>
yay Jenny !! <img src="i/expressions/face-icon-small-smile.gif" border="0">
yay Jenny !! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jenny26</b></i> Hi - Im in seattle and go to the CF clinic at the UW. Let me help you out. I was just in clinic on monday. CF clinic is only Monday morning and sometimes can be hard to get into. And when you call Medical Specialties to set an appt they will just give you one despite not knowing the urgency sometimes. In that case, always ask to speak to the CF Triage Nurse, Lori, and you will get patched to her vmail. She will always get back to you that day if you call before 3. Also every morning the pulmonary nurses and docs have various clinics so if you call first thing always know they get back to you after lunch. If you want to bypass the Med Spec people, call Lori directly explaining your a new patient, etc, Her number 206.598.8446. Having said all that, she will most likely direct you to go to the ER if it is urgent so you can getcultured ASAP and start having the Pulmonary fellows follow you. UW/CF clinic is a teaching hospital so you won't actually meet the CF docs until you go to clinic buttheyPulmonary fellows are great and consult with the CF doctors instantly. Hope this info helps. The CF docs are super smart and fantastic. I hope you enjoy the clinic. Jenny</end quote>
yay Jenny !! <img src="i/expressions/face-icon-small-smile.gif" border="0">
yay Jenny !! <img src="i/expressions/face-icon-small-smile.gif" border="0">
natybariloche
New member
PLEASE READ - I really need help http://academic.research.microsoft.com/Author/23308846/omar-hilario-pivetta
Hi: I live in argentina. I have my little son wuth fq. I know that the bes place that trate Fq, the best center is in Stocolmo Suecia. You can find information un the web site. There you can write and ask questions. In that country the center of Fq has 30 years. They now a lot.
Here in Argentina there is an old man, that knows a lot. He is genetist. He studys in eeuu. I give you the name, the mail and you write him.
If you put his name in the web you will see all the things he has done. He is genetist.
My name is natalia, mail mail is natybariloche@gmail.com....You can write me for help.
Genetist: Omar Pivetta (http://academic.research.microsoft.com/Author/23308846/omar-hilario-pivetta)
opivetta@cas.austral.edu.ar
Stocolmo center: http://www.karolinska.se/en/Astrid-Lindgren-Childrens-Hospital/Pediatric-Departments/CF-Center/
Hi: I live in argentina. I have my little son wuth fq. I know that the bes place that trate Fq, the best center is in Stocolmo Suecia. You can find information un the web site. There you can write and ask questions. In that country the center of Fq has 30 years. They now a lot.
Here in Argentina there is an old man, that knows a lot. He is genetist. He studys in eeuu. I give you the name, the mail and you write him.
If you put his name in the web you will see all the things he has done. He is genetist.
My name is natalia, mail mail is natybariloche@gmail.com....You can write me for help.
Genetist: Omar Pivetta (http://academic.research.microsoft.com/Author/23308846/omar-hilario-pivetta)
opivetta@cas.austral.edu.ar
Stocolmo center: http://www.karolinska.se/en/Astrid-Lindgren-Childrens-Hospital/Pediatric-Departments/CF-Center/
natybariloche
New member
PLEASE READ - I really need help http://academic.research.microsoft.com/Author/23308846/omar-hilario-pivetta
Hi: I live in argentina. I have my little son wuth fq. I know that the bes place that trate Fq, the best center is in Stocolmo Suecia. You can find information un the web site. There you can write and ask questions. In that country the center of Fq has 30 years. They now a lot.
Here in Argentina there is an old man, that knows a lot. He is genetist. He studys in eeuu. I give you the name, the mail and you write him.
If you put his name in the web you will see all the things he has done. He is genetist.
My name is natalia, mail mail is natybariloche@gmail.com....You can write me for help.
Genetist: Omar Pivetta (http://academic.research.microsoft.com/Author/23308846/omar-hilario-pivetta)
opivetta@cas.austral.edu.ar
Stocolmo center: http://www.karolinska.se/en/Astrid-Lindgren-Childrens-Hospital/Pediatric-Departments/CF-Center/
Hi: I live in argentina. I have my little son wuth fq. I know that the bes place that trate Fq, the best center is in Stocolmo Suecia. You can find information un the web site. There you can write and ask questions. In that country the center of Fq has 30 years. They now a lot.
Here in Argentina there is an old man, that knows a lot. He is genetist. He studys in eeuu. I give you the name, the mail and you write him.
If you put his name in the web you will see all the things he has done. He is genetist.
My name is natalia, mail mail is natybariloche@gmail.com....You can write me for help.
Genetist: Omar Pivetta (http://academic.research.microsoft.com/Author/23308846/omar-hilario-pivetta)
opivetta@cas.austral.edu.ar
Stocolmo center: http://www.karolinska.se/en/Astrid-Lindgren-Childrens-Hospital/Pediatric-Departments/CF-Center/
Hey, I'm also in Seattle, and I feel for you. I moved from Spokane (for college) in September, and developed a TERRIBLE exacerbation. I was supposed to be seen at the UW clinic. I had an appointment for the 24th of October, but I was so sick I needed to be seen THEN. I called the UW CF clinic, and they couldn't/wouldn't get me in. In my case, we called Seattle Children's and switched care to them because they could admit me through the ER and get me in that day, but definitely just go in through the ER at the UW Medical Center. It is a teaching hospital, you'll see fellows, but they're great. Honestly, we also emailed the head of the CF clinic and asked him what he could do, that might be an option, too.
Hey, I'm also in Seattle, and I feel for you. I moved from Spokane (for college) in September, and developed a TERRIBLE exacerbation. I was supposed to be seen at the UW clinic. I had an appointment for the 24th of October, but I was so sick I needed to be seen THEN. I called the UW CF clinic, and they couldn't/wouldn't get me in. In my case, we called Seattle Children's and switched care to them because they could admit me through the ER and get me in that day, but definitely just go in through the ER at the UW Medical Center. It is a teaching hospital, you'll see fellows, but they're great. Honestly, we also emailed the head of the CF clinic and asked him what he could do, that might be an option, too.
D
drdanika
Guest
Advise from another seattlelite- If you feel like you have a good relationship with your old doc, I would call them and let them know what's goin on. Ask them to contact UW CF clinic. If they don't move your appointment up, go in through the ER. Tell them you will not leave without seeing someone from the CF team.
I wish you the best of luck and hopefully you enjoy it here once you get your health back under control.
-C
I wish you the best of luck and hopefully you enjoy it here once you get your health back under control.
-C
D
drdanika
Guest
Advise from another seattlelite- If you feel like you have a good relationship with your old doc, I would call them and let them know what's goin on. Ask them to contact UW CF clinic. If they don't move your appointment up, go in through the ER. Tell them you will not leave without seeing someone from the CF team.
I wish you the best of luck and hopefully you enjoy it here once you get your health back under control.
-C
I wish you the best of luck and hopefully you enjoy it here once you get your health back under control.
-C
The CF center at the UW is horrible, I'll just leave it at that.
Mark gave up on them many years ago and now sees Dr. Wood for MOST of his treatment (he still does UW like once a year, but NOT when he needs IMMEDIATE care). Try contacting her, and tell her you were referred by the Raysbrook's and I know she will get back to you right away: http://www.healthgrades.com/physician/dr-julie-wood-mcclure-ys6tr
Mark gave up on them many years ago and now sees Dr. Wood for MOST of his treatment (he still does UW like once a year, but NOT when he needs IMMEDIATE care). Try contacting her, and tell her you were referred by the Raysbrook's and I know she will get back to you right away: http://www.healthgrades.com/physician/dr-julie-wood-mcclure-ys6tr
The CF center at the UW is horrible, I'll just leave it at that.
Mark gave up on them many years ago and now sees Dr. Wood for MOST of his treatment (he still does UW like once a year, but NOT when he needs IMMEDIATE care). Try contacting her, and tell her you were referred by the Raysbrook's and I know she will get back to you right away: http://www.healthgrades.com/physician/dr-julie-wood-mcclure-ys6tr
Mark gave up on them many years ago and now sees Dr. Wood for MOST of his treatment (he still does UW like once a year, but NOT when he needs IMMEDIATE care). Try contacting her, and tell her you were referred by the Raysbrook's and I know she will get back to you right away: http://www.healthgrades.com/physician/dr-julie-wood-mcclure-ys6tr