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Minnesota Clinic

anonymous

New member
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfww.org/pub/edition_3/A_Geriatric_Problem.html
">http://www.cfww.org/pub/editio...eriatric_Problem.html
</a>
The median age of survival at this clinic is 47 years, 12 more than the national average.

Anyone go to this clinic, and what does your treatment involve?
 

wallflower

New member
Amy, I think your thinking of Dr. Warwick.

I go the MN clinic. I was diagnosed at 2 on an army base in Colorado, but I don't think really received any real treatment until we moved to WI and began going to the UofM when I was 5.

I was in and out of the hospital 3 times with sinus surgery and tuneups up to the 5th grade. Outpatient sinus surgery (poly removal) in HS, and no hospital stays until my pnenouma (sp?) in 2000, and none since then. I am a hearty 34, and am in good health. I do have pseudo and microbactia, but am doing well with it. My pfts are 80, I think.

I have always been on my albuterol, mucomyst and crom. sodium neb, and now do an amikacin neb for the microbactia (both 2x day). We did chest therapy since a kid - manual to percussor to the vest when it came out (2x day with nebs). I now do the vest sometimes by itself if I feel I need it (beside the 2x) when I'm watching tv.

My pills have changed over the years with effectiveness. Always on a preventative antibotic (used to be that big green pill gantanol). Now I take Zithromax, Vit K, Pancrease (3-4 with meals), ADEK, and calcium/vit d suppliment. I also have prolactinoma (not sure if cf related or not) - I take half a Dostinex every week for that.

I used to see Dr. Warwick until the adult section opened, now I see Dr. Dunitz.

edited to add: I see my doctor every 3 mos (every month if I am sick). Every visit included a pft and sputum culture. Once a year I have my annuals - glocuse test, blood work and xray
 

anonymous

New member
It's my understanding the Minnesota clinic is very very proactive and very involved in the patients lives. Stressing CPT, prophlactic antibiotics.... A friend of mine's granddaughter goes there every 4 months and they do nebs and vest a minimum of three times a day.
 
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