How many of you go to a CF Care Center?

[coltsfan715]

I was wondering if everyone here was seen at a CF Accredited Center or if anyone just saw a pulmonologist for their CF care. I currently see a pulmonologist because there isn't an Adult CF Care center in our town and the nearest one (about 1 1/3 - 2 hours away) I did not much care for them. I am going tomorrow to see a new doc at what is going to be or is a new Adult CF Care Center in the area.
I am very nervous. I think I will benefit from being seen at a CF Care Center, but like my current doc and am not sure if I am ready to make the change again (just moved from peds 3 years ago.

I am going to be seeing what they have to offer at this new center versus where I go now, but was just wondering what some of you thought about going to a CF Center versus a non CF Center. Where I go now is a Respiratory and Critical Care office, the doc has plenty of experience with CFers, but like I said the office is not and accredited CF Center.

I guess my main question to those that maybe have experience with going to be a CF Center and a nonCF Center is do you think there is a difference in the quality of the care you receive? Do you think you get access to newer meds and new treatments faster?

I guess I partially needed to get that off my mind because I am really nervous. lol I feel like I am having to decide between breaking up with my boyfriend for another guy geeez <img src="i/expressions/face-icon-small-confused.gif" border="0"> . I will definitely know more tomorrow after I go and ask many questions.

Also if anyone has any ideas of questions I should ask about this new center please feel free to add those. I know somethings I am interested in knowing, but I am sure there are things that I should ask that I haven't even thought of phew ... Thanks for any info you guys can share with me.

Nervously awaiting my appointment tomorrow,
Lindsey

 

[chantelfox]

Hey Lindsey,<br>
<br>
I don't know if you read my other post..gosh I forget which thread
it was..but I had stated how I had gone to the Phoenix CF center
from age 6-16. When I first started going the care was ok, but I
hadn't developed many probs. As soon as I did, I was neglected and
cared for very poorly. So I left and went to the Mayo (after all
they are "known" for how awesome they are), but I left
there after about 3 years because they really knew practically
nothing about CF. During that time I had also seen a pulmonologist
rated one of the best in the state and I wasn't really impressed
with his care for my CF. So I started going to the CF center in
Tucson more regularly ( I had gone a couple times  while I was
going to Mayo, but not consistently). I just felt more comfortable
with knowing that because most my problems so far are all
intertwined and related to the CF, they might have a better way of
handling me as a "whole". Plus, when I went to the Mayo
the doc told me to stop eating fruits and veggies (anything with
fiber), which caused a Vit K  definciency,  and landed me
in the hospital coughing up mouthfuls of blood and the sickest I
have ever been in my life. IF I had gone to a <b><i>good</i></b>
(mind you I say good) CF center, they would have probably been able
to tell me my stomach pains were due to minor obstructions (<i>the
Phoenix CF center couldn't figure it out either</i>) and never
would have cut out fruits and veggies ..and I am sure they would
have recommended ADEKs if they told me to cut back on real fiberous
veggies (something the Mayo doc overlooked for a year).<br>
<br>
So in the end, you can get crappy care from CF accredited places
and non-accredited places. You just have to remember that there are
things that CF docs aren't trained in (and they have told me to
seek out a good specialist who has CF experience-and often they can
give you some names of recommended docs) like endocrinology. But,
overall they see a lot of the same issues so they do know what to
expect with CF and have an idea of how to treat you without
compromising other aspects of your health. CF bodies walk a fine
line. You have to be careful because treating one issue can cause
many more. Some docs don't acknowledge this, so where ever you
go..ask questions and do your research if you are unsure about
anything.<br>
<br>
Good luck!! I hate switching docs..such a pain!!! <img src="i/expressions/face-icon-small-wink.gif" border="0"> TTFN!!

 

[coltsfan715]

Yeah I am hoping this center is a good center. I am just so nervous I told Kurt I feel like I am cheating on my current doc. I am very happy with my care where I am going, I am just thinking that a CF center will have access to new meds and treatments sooner than my current doc.

I don't know a part of me doesn't want to go tomorrow, but another part of me is saying you need to do this. If for no other reason than to see what they are all about. Who knows I may go and end up not even liking the office staff and/or docs. I guess we will just have to wait and see.

pffttt,
Lindsey

 

[chantelfox]

You know..it won't hurt to check it out. Ask them what they know
about current treatments, studies, meds etc. ( I usually ask this
every visit..if not they sometimes won't say anything) Ask if
they stay on top of this stuff. If you don't like what you hear or
they sound shady..well, now you know . No one says that if you go
once or twice you HAVE to leave the doc you have been seeing.
<img src="i/expressions/face-icon-small-smile.gif" border="0"><br>
<br>
Edited to add: Plus, as for cheating on your doc...MANY people seek
second opinions and MANY doctors encourage this..so don't worry, I
am positive he will understand (plus, he doesn't have to know if
you don't want to tell him).

 

[Emily65Roses]

If there's not one convenient to you, it's no crime to just see a pulmonologist. I know Ry and Allie preferred a pulmonologist for Ry. I myself go to a CF care center, and have since I was 2 days old. Yale New Haven, in CT. I was at children's until early this year, and now I'm in adults. I loved children's and I love adults. I wouldn't switch for anything, but that's me, and my specific center/doc.

 

[blindhearted]

I see a pulmonologist at Duke (1 1/2 - 2 hrs away from my home) every 3 to 6 months (6mos as of lately). I also see a local pulmonologist (non CF accedited center) when needed for a regular check up, basic flare ups or any general medical problem. My pediatric doctor referred me to him because I could no longer stay with him (which sucked). So I go to both.

 

[Allie]

Emily already kind of answered for me, but I think what works for you is very personal. Ry did much better in the care of a private pulmonologist. The care was more personalized, and they were willing to work with him on a course of treatment. It was great for him, and his health showed that until he got cepacia. So it's very personal, some people do better with clinic, some do better with private.

 

[thelizardqueen]

I currently go see a CF specialist at a CF centre. That being said, I don't like my doctor, and am in the process of trying to switch to a female pulmonologist at the same hospital who by rumour and reputation is fantastic! I know that she doesn't work out of the CF clinic, so I would assume she wouldn't be CF accredited, but she is an excellent lung doctor, and my nurse who also works for this woman swears that I will get better care with her.

 

[Allisa35]

I know it's never easy switching doctors. I've gone to a CF Clinic since I can remember (diagnosed at 3) about 30 years or more. I've never really thought about it, but I guess I am very fortunate in that I have a clinic here where I live.

I have a primary care physician, which I have to have for insurance purposes, but I also go to the CF clinic. I like both of my doctors. My PCP is very familiar with CF. Of course, over the course of 30 years, they have gone through several doctors at the CF clinic. From what I can remember, they were all good docs.

As far as the care/treatment goes, I feel both of my docs are very good and competent. They are usually both very aggressive about treatment.

I hope everything works out for you. I'm sure your current doctor understands your feelings about this, but I'm sure it doesn't make it any easier for you. Good luck!

 

[irishgirl]

I have seen a private pulmo. guy all my life. I really like him, and he is about 10 minutes from my house. However, he is not as up to date on some things, so I recently started to go to a clinic about 4-5 hours away (it is the closest one). So far I go to it maybe 2x a year and my pulmo guy once a year. Before I only went about once a year. I am happy with both. I feel great with the care from my doctor, and I can try new therapies at the clinic. However, since the drive is sooo long, I may just go there once a year.
<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[irishgirl]

I have seen a private pulmo. guy all my life. I really like him, and he is about 10 minutes from my house. However, he is not as up to date on some things, so I recently started to go to a clinic about 4-5 hours away (it is the closest one). So far I go to it maybe 2x a year and my pulmo guy once a year. Before I only went about once a year. I am happy with both. I feel great with the care from my doctor, and I can try new therapies at the clinic. However, since the drive is sooo long, I may just go there once a year.
<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[irishgirl]

sorry about the double post! I am being impatient and my computer is being slow!

 

[coltsfan715]

Thanks for the support guys. I am feeling a bit better about it thsis morning. I am just going to wait and see how things go. I will post later today I am sure about how everything went.

Have a good day,
Lindsey

 

[JohnnaMarie]

I see a CF team at the University of Nebraska Medical Center in Omaha Nebraska. The care I recieve is based on what doctor I have. I have had one that was not so good for me in the past. Now I have a great doctor. Other members of the CF team have always been good tho. Jumping from the Pediatric Clinic to the Adult Clinic was a huge one for me. At first I got a doc that was not very good at listening or treating me. Then, I finally changed to another Adult CF doctor and he is as aggresive with care as the Pediatric docs were.

 

[JazzysMom]

I go to a CF accredited center. I dont even have a local General Practioner. I use my CF doctor for everything except my epilepsy although for years they monitored that also. The only doctor that is local that I feel comfortable enough with his knowledge of CF is bombarded with patients. I have used him in emergencies until I could get to my CF Team. I live in the "sticks" so access to "real" medical care is limited without traveling!

 

[Scarlett81]

I go to the same great lady as Jazzysmom.
It's hard to decide what to do. I've been with a few lousy-I mean Lousy-cf centers. (They were so lousy, one of them just got disbanded recently.) And I've seen some lousy pulmonologists. Each one is different, you have to find which works for you.
I have a general family doctr, but all he does for me is give me my referrals for insurance. I go to my cf doc for everything. My cf doc also is a big believer in treat the whole body, not just 'cf lungs'-so she sends me to an ENT for my sinus health and a gastroenterologist for my gi issues. And I have an OB/GYN that specializes in Cf.

 

[NoExcuses]

There's a lot that the CFF requires of CF centers that other pulmonologists might not be aware of. ANd as a patient, I would have never known about these standards if I didn't go on this website or if my CF doc didn't tell me.

1. Sputum culture every 3 months (it's important to monitor suspep. levels)
2. Bone density once a year
3. Glucose tolerance once a year
4. PFT's every 3 months

I realize that a private doc is perfectly capable of doing all of these things. But I worry about newly diagnosed patients or non-adult patients not getting these important tests because they have never been told that these items are important. I talk to many pulmonologists every day in my job, and many aren't aware of CFRD, Osteoperosis, or latest research for CF. That's not to say no one is aware, of course. CF docs are probably more prone to be up to date on their sub-specialty.

Another issue, I realize, is whether you agree with CF guidelines. I personally do and I believe that they've kept me healthy. But if you don't agree with the guidelines, that's a whole other issue as well.

So lots to consider. But all in all, it's a pretty personal choice like Allie said.

 

[Justsmurfin]

I have been seeing a private pulmo and a great internist.

I was diagnosed at a pediatric clinic at age 16....that clinic had an adult one but it was pretty much the same staff just in a different building. All peds doctors and I felt like there were some issues a ped doctor couldn't help me with....reproductive issues etc. Theres only one other CFF clinic in my state and its over 3 hours away.

Actually my internist oversees more of my care than my pulmo. My internist does my yearly bloodwork(liver function, vitamin levels, thyroid because I have had some thyroid issues, CBC etc etc) and sees me more often. He deals with the issues like arthritis, reproductive issues and all that stuff and refers me to specialists as needed. I see the pulmo for check-ups. My internist is more aggressive and since my mom works at his office, I don't have to wait in the waiting room or be around other patients.

My internist finally found my winning combo of meds....Mucomyst, Xopenex and Cromolyn in the AM and PM. Xopenex and Cromolyn in the middle of the day. And lots of airway clearance.. He is also very big on cultures and routine xrays

For me that combo works well. If I lived by a big hospital with a good adult clinic I would go there but I don't. Duke would be the closest at over 6 hours one way!

But then I don't agree with everything the CFF says and all their guidelines. I also like having freedom in my medical decisions. It seemed like the CF clinic I went to had meds they put everyone on whether they needed them or not and didn't care whether they didn't work. It took all day to be seen. Their infection control stuff stunk. I can def see that CF clinic in the bottom % of clinics in the country.

My internist deals with lots of patients with "childhood" disease like sickle cell. I'm his only current CF patient. He's easy to get a hold of. He keeps current on things, does tons of research etc. His nurse actually worked with CF patients before she started working for him. My pulmo deals with a lot of COPD patients and some CF ones. I don't think he is aggressive enough so currently my internist does most of my care

 

[Ratatosk]

We go to a local nonaccreditted CF clinic. More to just establish a rapport with the doctors that deal wcf in our area should DS ever need to be admitted. To get dibs on those rare flu shots every year -- though didn't do us much good last year. They're more reactive than proactive. Tend to treat all their patients the same -- all the same meds. Their infection control is horrible (nasty) and we're seriously considering discontinuing going to the CF clinic and just seeing one of the doctors separately.

Our primary physician is affiliated with an accreditted CF Clinic -- he's board certified in infectious disease and has been seeing CFers for years. He's very proactive and keeps up on the latest cf treatments, meds, etc. Very personable and very easy to get ahold of their office should we have a question or an emergency after hours.

 

[Scarlett81]

I just wanted to agree with Amy's post 100%.
I walked away from the computer after I posted thinking, oh yeah-I should have said all those reasons too-and lo and behold she said them. But, its so true, the cf centers have guidelines they have to abide by. And I was thinking, these guys go to Cf conventions all over the world almost every year. My docs in the past have mentioned going all over the place for cf doctor conv's.
The thing is, they're just more likely to get the information about newer treatments first.