does anybody seek CF care outside a CF Center?

[heatherheather]

Hi! My husband is 41 w/CF. We have just moved to a little suburb north of Seattle for employment purposes and because we both have better health insurance here. The University of Washington Adult CF clinic is the only Cystic Fibrosis Foundation center in town. I'm very frustrated because they wouldn't make an appointment for my husband until we'd moved in state and now they're saying he can't fit in to a new appointment until October -- go to the emergency room for any care you need before then.

My husband's starting Cayston and really trying to beat a 20% FEV1 drop. Waiting until October to see the UW CF Center seems completely out of the question! Is it normal for a new center to put an appointment so long out? I've heard of CFers going to independent pulmonologists not at CF centers. How many are there? Is there a list? Who are the good ones in the Pacific Northwest (hopefully in Washington)?

Finally, any tips on getting them to get him in sooner? He has a picc line in his arm (has finished his home IV antibiotics) and really needs to follow up after 6 months of exacerbation. Home nurse can take the picc line out. Am I really just being impatient about having to wait until October? I'm just shocked that it takes so long when CF is so serious.

Also, does anybody have any positive or negative experiences with this center, as a CF center or a transplant center? Or does anybody from the Seattle area have recommendations for a primary care / internal medicine doctor who gets CF? Bonus: a psychiatrist who does, too?

Leaving my husband's old center is teaching me a lot about CF care. Thanks for this board. Thanks for letting me vent!

 

[heatherheather]

Hi! My husband is 41 w/CF. We have just moved to a little suburb north of Seattle for employment purposes and because we both have better health insurance here. The University of Washington Adult CF clinic is the only Cystic Fibrosis Foundation center in town. I'm very frustrated because they wouldn't make an appointment for my husband until we'd moved in state and now they're saying he can't fit in to a new appointment until October -- go to the emergency room for any care you need before then.

My husband's starting Cayston and really trying to beat a 20% FEV1 drop. Waiting until October to see the UW CF Center seems completely out of the question! Is it normal for a new center to put an appointment so long out? I've heard of CFers going to independent pulmonologists not at CF centers. How many are there? Is there a list? Who are the good ones in the Pacific Northwest (hopefully in Washington)?

Finally, any tips on getting them to get him in sooner? He has a picc line in his arm (has finished his home IV antibiotics) and really needs to follow up after 6 months of exacerbation. Home nurse can take the picc line out. Am I really just being impatient about having to wait until October? I'm just shocked that it takes so long when CF is so serious.

Also, does anybody have any positive or negative experiences with this center, as a CF center or a transplant center? Or does anybody from the Seattle area have recommendations for a primary care / internal medicine doctor who gets CF? Bonus: a psychiatrist who does, too?

Leaving my husband's old center is teaching me a lot about CF care. Thanks for this board. Thanks for letting me vent!

 

[heatherheather]

Hi! My husband is 41 w/CF. We have just moved to a little suburb north of Seattle for employment purposes and because we both have better health insurance here. The University of Washington Adult CF clinic is the only Cystic Fibrosis Foundation center in town. I'm very frustrated because they wouldn't make an appointment for my husband until we'd moved in state and now they're saying he can't fit in to a new appointment until October -- go to the emergency room for any care you need before then.
<br />
<br />My husband's starting Cayston and really trying to beat a 20% FEV1 drop. Waiting until October to see the UW CF Center seems completely out of the question! Is it normal for a new center to put an appointment so long out? I've heard of CFers going to independent pulmonologists not at CF centers. How many are there? Is there a list? Who are the good ones in the Pacific Northwest (hopefully in Washington)?
<br />
<br />Finally, any tips on getting them to get him in sooner? He has a picc line in his arm (has finished his home IV antibiotics) and really needs to follow up after 6 months of exacerbation. Home nurse can take the picc line out. Am I really just being impatient about having to wait until October? I'm just shocked that it takes so long when CF is so serious.
<br />
<br />Also, does anybody have any positive or negative experiences with this center, as a CF center or a transplant center? Or does anybody from the Seattle area have recommendations for a primary care / internal medicine doctor who gets CF? Bonus: a psychiatrist who does, too?
<br />
<br />Leaving my husband's old center is teaching me a lot about CF care. Thanks for this board. Thanks for letting me vent!

 

[JustDucky]

Oh my goodness...OCTOBER!! That seems very unrealistic to me, especially since your husband is having some pretty serious issues. Maybe he can have his primary care physician call them and stress the importance of seeing a CF doc sooner....
I personally see a doc who isn't part of a CF center, he is a university physician who specializes in bronchiectasis and sees CF pts as well. I am comfortable with his care, he is aggressive. I live in NY, but get my care in CT.
I know that there are folks on this board who live in WA, hopefully someone will chime in and be able to guide you in some way. You must be so frustrated and angry with this situation, I know I would be. I pray that something gives for you guys,
Hugs, Jenn

 

[JustDucky]

Oh my goodness...OCTOBER!! That seems very unrealistic to me, especially since your husband is having some pretty serious issues. Maybe he can have his primary care physician call them and stress the importance of seeing a CF doc sooner....
I personally see a doc who isn't part of a CF center, he is a university physician who specializes in bronchiectasis and sees CF pts as well. I am comfortable with his care, he is aggressive. I live in NY, but get my care in CT.
I know that there are folks on this board who live in WA, hopefully someone will chime in and be able to guide you in some way. You must be so frustrated and angry with this situation, I know I would be. I pray that something gives for you guys,
Hugs, Jenn

 

[JustDucky]

Oh my goodness...OCTOBER!! That seems very unrealistic to me, especially since your husband is having some pretty serious issues. Maybe he can have his primary care physician call them and stress the importance of seeing a CF doc sooner....
<br />I personally see a doc who isn't part of a CF center, he is a university physician who specializes in bronchiectasis and sees CF pts as well. I am comfortable with his care, he is aggressive. I live in NY, but get my care in CT.
<br />I know that there are folks on this board who live in WA, hopefully someone will chime in and be able to guide you in some way. You must be so frustrated and angry with this situation, I know I would be. I pray that something gives for you guys,
<br />Hugs, Jenn

 

[marcijo]

I went to the Seattle CF center from the age of 20 (when I was diagnosed) until we moved when I was 29. I now see Dr McCarthy over here in Spokane (Eastern WA) and love it!

I don't want to say anything bad about the UW....but a fantastic nurse left and the nurse that took over is the reason I switched....I had been planning on going back to the UW quarterly as they were one of the top adult centers.

Since I have been going to Spokane I have started all kinds of preventative meds (Advair, Hypertonic Saline, Pulmozyme) and my lung function has increase from in the 60's up to the 90's!

I would NOT wait until October to be seen-that is ridiculous! Can you be on a cancellation list? Is there anyway you guys can get over to Spokane to see Dr McCarthy? I can give you their number if you need it!

As far as seeing a non-CF center-something is better than nothing I guess....but I find a lot of times that even doctors are totally suprised I am an adult with CF....and have only really learned a bit about it in medical school. I'm not saying every doctor is like this...but I would definitely go to a CF center if I could.

 

[marcijo]

I went to the Seattle CF center from the age of 20 (when I was diagnosed) until we moved when I was 29. I now see Dr McCarthy over here in Spokane (Eastern WA) and love it!

I don't want to say anything bad about the UW....but a fantastic nurse left and the nurse that took over is the reason I switched....I had been planning on going back to the UW quarterly as they were one of the top adult centers.

Since I have been going to Spokane I have started all kinds of preventative meds (Advair, Hypertonic Saline, Pulmozyme) and my lung function has increase from in the 60's up to the 90's!

I would NOT wait until October to be seen-that is ridiculous! Can you be on a cancellation list? Is there anyway you guys can get over to Spokane to see Dr McCarthy? I can give you their number if you need it!

As far as seeing a non-CF center-something is better than nothing I guess....but I find a lot of times that even doctors are totally suprised I am an adult with CF....and have only really learned a bit about it in medical school. I'm not saying every doctor is like this...but I would definitely go to a CF center if I could.

 

[marcijo]

I went to the Seattle CF center from the age of 20 (when I was diagnosed) until we moved when I was 29. I now see Dr McCarthy over here in Spokane (Eastern WA) and love it!
<br />
<br />I don't want to say anything bad about the UW....but a fantastic nurse left and the nurse that took over is the reason I switched....I had been planning on going back to the UW quarterly as they were one of the top adult centers.
<br />
<br />Since I have been going to Spokane I have started all kinds of preventative meds (Advair, Hypertonic Saline, Pulmozyme) and my lung function has increase from in the 60's up to the 90's!
<br />
<br />I would NOT wait until October to be seen-that is ridiculous! Can you be on a cancellation list? Is there anyway you guys can get over to Spokane to see Dr McCarthy? I can give you their number if you need it!
<br />
<br />As far as seeing a non-CF center-something is better than nothing I guess....but I find a lot of times that even doctors are totally suprised I am an adult with CF....and have only really learned a bit about it in medical school. I'm not saying every doctor is like this...but I would definitely go to a CF center if I could.

 

[beyerdug]

I see a pulmonologist in San Antonio, TX rather than going to the cf center here. When I tried to get in the cf center they told me they only see children and not adults. Since then they opened an adult center and actually asked my md to be the director. He declined and I still see him instead of going to the cf center. I am 45 years old and still in relatively good health. Respiratory issues are all I have so a pulmonlogist is all I need at this point.

 

[beyerdug]

I see a pulmonologist in San Antonio, TX rather than going to the cf center here. When I tried to get in the cf center they told me they only see children and not adults. Since then they opened an adult center and actually asked my md to be the director. He declined and I still see him instead of going to the cf center. I am 45 years old and still in relatively good health. Respiratory issues are all I have so a pulmonlogist is all I need at this point.

 

[beyerdug]

I see a pulmonologist in San Antonio, TX rather than going to the cf center here. When I tried to get in the cf center they told me they only see children and not adults. Since then they opened an adult center and actually asked my md to be the director. He declined and I still see him instead of going to the cf center. I am 45 years old and still in relatively good health. Respiratory issues are all I have so a pulmonlogist is all I need at this point.

 

[julie]

My ex husband Mark sees a pulmonologist out of Providence Hospital in Everett Washington. He left the UW because we were both so unhappy and disgusted with the way the clinic was run. Her name escapes me at the moment and it's too late to call him but I will try and remember to ask him. She has prior experience working in a CF clinic about 8 years ago, which was somewhat important to us, but she's just great overall with his CF care and Mark really likes her.

 

[julie]

My ex husband Mark sees a pulmonologist out of Providence Hospital in Everett Washington. He left the UW because we were both so unhappy and disgusted with the way the clinic was run. Her name escapes me at the moment and it's too late to call him but I will try and remember to ask him. She has prior experience working in a CF clinic about 8 years ago, which was somewhat important to us, but she's just great overall with his CF care and Mark really likes her.

 

[julie]

My ex husband Mark sees a pulmonologist out of Providence Hospital in Everett Washington. He left the UW because we were both so unhappy and disgusted with the way the clinic was run. Her name escapes me at the moment and it's too late to call him but I will try and remember to ask him. She has prior experience working in a CF clinic about 8 years ago, which was somewhat important to us, but she's just great overall with his CF care and Mark really likes her.

 

[julie]

Ok, I just looked her up...couldn't leave you hanging like that. <a target=_blank class=ftalternatingbarlinklarge href="http://www.providence.org/PHS_ProviderDirectory/Detail.aspx?ProviderID=18102
">http://www.providence.org/PHS_...aspx?ProviderID=18102
</a>
Her name is Dr. Julie Wood, FABULOUS doctor and you can get seen same day when needed, which is a "feature" my ex husband really loves and needs sometimes. Honestly, I'd stay away from the UW. I mean, maybe make an appt in October to feel them out yourselves but in the mean time get in with Dr. wood. HTH

 

[julie]

Ok, I just looked her up...couldn't leave you hanging like that. <a target=_blank class=ftalternatingbarlinklarge href="http://www.providence.org/PHS_ProviderDirectory/Detail.aspx?ProviderID=18102
">http://www.providence.org/PHS_...aspx?ProviderID=18102
</a>
Her name is Dr. Julie Wood, FABULOUS doctor and you can get seen same day when needed, which is a "feature" my ex husband really loves and needs sometimes. Honestly, I'd stay away from the UW. I mean, maybe make an appt in October to feel them out yourselves but in the mean time get in with Dr. wood. HTH

 

[julie]

Ok, I just looked her up...couldn't leave you hanging like that. <a target=_blank class=ftalternatingbarlinklarge href="http://www.providence.org/PHS_ProviderDirectory/Detail.aspx?ProviderID=18102
">http://www.providence.org/PHS_...aspx?ProviderID=18102
</a><br />
<br />Her name is Dr. Julie Wood, FABULOUS doctor and you can get seen same day when needed, which is a "feature" my ex husband really loves and needs sometimes. Honestly, I'd stay away from the UW. I mean, maybe make an appt in October to feel them out yourselves but in the mean time get in with Dr. wood. HTH