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vitamin k-
05 Sep : 23:42
and cheese.
mom2lillian
05 Sep : 10:26
rock on Piper....oh and bring on the typhoid fever LOL. I can see a weird X-files type show now where some crazy CF scientist lets it loose on colleagues he's ticked at *evil laugh*
Momtana
04 Sep : 17:02
Piper
NoExcuses
04 Sep : 14:07
Yey Piper!PS we have fallen to #3 in the Pepsi Refresh Project
http://bit.ly/bJhm7v
j8411
04 Sep : 13:18
mac
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 Questions for a possible new clinic |
| Author | Post |
| bittyhorse23 |
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  Joined: Thu Jul 17 2008, 05:13PM Posts: 1677 | As you all know I have moved and will possibly be switching clinics. I haven't decided yet because I adore my current CF doctor and really don't want to leave him. But I know I need a doctor up here in Boston too. I am going to be scheduling consult appointments with both MGH and Children's. I want to go in with a list of questions so I can determine which one suits me better.
So far I have listed: Admissions - how do they work? Home IVs - do I need to be admitted first? Response time for calls Clinic size Who to call for an emergency
This is really all I can think of at the moment. Both centers do take my insurance and both doctors I have chosen are in my network so I don't need to worry about that.
Any questions you can think of would be a great help to me. And thank you to everyone that has given me info about both clinics, it was mush appreciated!!! Amy - 29 w/ CF (DDF508) and Lynch Syndrome http://mycfjourney.blogspot.com http://amysartattack.blogspot.com/ | ||
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| Piper |
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 Joined: Wed Jul 16 2008, 08:26PM Posts: 850 | -If there are multiple doctors at the clinic, will you be seen/followed by one doctor primarily, or will it be more of a team effort? -How often do they hold clinic hours and what is the policy on being seen on a non-clinic day if needed? -This is a broader issue, but I would ask about the isolation protocol for CFers at the affiliated hospital and other admissions stuff -- like is there a special floor/ward where CFers are admitted and are CFers always confined to their room, things like that. -And, if you are planning to work with your old doc and maybe just use this new clinic as a local option, then probably you should ask about how that would work, what it would require on your end. I did that dance for a while between Denver and ATL, and some clinics are a little "touchier" than others when it comes to sharing their patients. I personally feel like a CFer should always have at least one DIRECT method of contacting his or her doctor, so I would also request that (e.g., email, personal office line with voicemail, pager, or cell phone). I know many clinics have a policy that you go through the nurse or on-call pulmonary doc first, and that's fine as long as they're responsive, but I still feel like you need some way that you can always have direct contact with your doc, even if you have to leave a message and wait for a response. I like to bother my doctors  Good luck! I know you're still on the fence, but I hope you at least find a doctor you like and trust for local stuff. Piper - 28 w/CF - NYC Double-Lung Transplant at Columbia Presbyterian -- 6/12/10. Thank you, donor! http://amatteroflifeandbreath.blogspot.com/ | ||
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| bittyhorse23 |
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Joined: Thu Jul 17 2008, 05:13PM Posts: 1677 | Thanks a bunch Piper!!!!  Amy - 29 w/ CF (DDF508) and Lynch Syndrome http://mycfjourney.blogspot.com http://amysartattack.blogspot.com/ | ||
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| froggy |
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  Joined: Mon Jul 14 2008, 08:21PM Posts: 739 | I don't have anything to add at the moment (I have major pain-brain going on) but I hope that it goes well for you and they are willing to work with your other doc! I'm Jessi, 28, CF, CFRD, fibromyalgia, osteopenia, and I live in the Seattle area. I am mom to a gorgeous kitty, and the significant other to a wonderful guy. | ||
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| kim |
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  Joined: Wed Jul 23 2008, 04:18AM Posts: 86 | I'd personally also ask: -what clinical trials are going on in the clinic? -what does the doc do to stay on the cutting edge of treatment? -infection control policies in clinic and inpatient? -is it a transplant center? how does the referral process work? -who follows you during an admission - primary cf doctor or house staff? -who are the other team members of the clinic (i.e. nutritionist, PT, social work) and how do they work together to integrate care? that's all I've got for now
Kim 45/CF | ||
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| bittyhorse23 |
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Joined: Thu Jul 17 2008, 05:13PM Posts: 1677 | Thanks Kim and Jess Amy - 29 w/ CF (DDF508) and Lynch Syndrome http://mycfjourney.blogspot.com http://amysartattack.blogspot.com/ | ||
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| kfw63 |
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  Joined: Fri Jan 09 2009, 10:17AM Posts: 64 | Amy, who you seeing at Childrens? I see Dr. G. Let me know who and if I have any input I'll let you know. As for childrens. You will be seen in clinic there but any admits are at the Brigham. They are affiliated and almost all docs have practicing rights at both hospitals. Also, as you know, the Brigham does do transplants. As for infection control. Childrens is generally pretty good. Admits you will see the residents and there is always 1 primary CF doc on who you will see everyday. It may or may not be your regular doc depending on the rotation. I did the last round of IV's without being admitted other than for the picc placement. I was in and out in about 4 hours and my meds were waiting for me when I got home. So you do not always need to be admitted before doing home IV's(obviously depending on how sick you are). The nutrionist, social workers etc... are all available at clinic but I do not see them unless I have a specific issue. Childrens is also very involved with the clinical trials. Anyway, any questions you can PM me and I'll give you my number if you want to talk more. Kevin 46yr CF(DDF508)/CFRD | ||
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| bittyhorse23 |
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Joined: Thu Jul 17 2008, 05:13PM Posts: 1677 | Thanks Kev you answered a ton of stuff for me Amy - 29 w/ CF (DDF508) and Lynch Syndrome http://mycfjourney.blogspot.com http://amysartattack.blogspot.com/ | ||
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| jane |
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Joined: Fri Sep 05 2008, 05:06PM Posts: 45 | Kevin just said what I was going to say! My boys have not transitioned to adult care yet, (soon) but the docs we know who are in the adult program are wonderful! (Love Dr U) I've heard very good things about the admissions at B & W (after a few years to work out the kinks). I did want to add that many of the CF docs from Mass General came over to Childrens last year. Good luck! jane, mom of 2 boys w/cf | ||
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| Jennifer |
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  Joined: Wed Jul 16 2008, 08:06AM Posts: 430 | I don't have anything to add really but to me the most important thing is how you would contact them in case of an emergency. I don't go to an official CF clinic, but I do love my dr and their staff. It is easy to reach my dr via phone, email, and at home. I can call the number after hours and leave a message with the call center, and he calls me back every time within 5 minutes.. And is fast about calling me in a prescription late at night. I couldn't imagine having it any other way. To me, that's the most important thing. Jennifer, 30 with CF | ||
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