A 'Best' Hospital for Cystic Fibrosis Kids

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"To prevent malnutrition, downing handfuls of enzyme capsules is mandatory before eating so much as a cracker or drinking a glass of milk."
This is not true. A cracker does not require "downing handfuls of enzyme capsules." Please don't exaggerate, it's offensive.

Ben of WI 1:56AM March 16, 2011

We live in Minneapolis and are fortunate to have 2 excellent centers (the University of Minnesota - which is also the adult center and Chilren's Hospital). They are very proactive (3 quarterly visits a year and an extremely indepth annual checkup). They also sponsor yearly symposiums for families and patients as well as monthly parent roundtables. From our reading and understanding - these 2 facilities are considered some of the best in the country and should be used as templates for any CF care regimen.

Dave Bloom of MN 6:43PM July 30, 2010

The complaints about UC are valid- I trained there and at Children's and the difference is stunning. My issue with this contrast is highlighted wonderfully in the case of CF. We decide as a society that if you're a kid, your care is spectacular and you deserve health care, to the point of it being a human right. Once you hit 18, sorry pal, it's off to the real world where you don't get to play Playstation whenever you want and the halls are not painted bright, cheerful colors. My point in bringing this up is this- why do our adults not deserve similar treatment as children?

Cinci Doctor of OH 11:50PM July 27, 2010

I too am like many of the comments above when I was told I had to switch I dreaded it and didn't want to leave children's. Sure UC has it's flaws your going to find that any place you go just at someplaces the problems are more visible than others. Some good things about UC I've always been in and out in less than an hour with an appointments, the doctors have always worked with my schedule as in work school etc.. when scheduling appointments (they've stayed late and saw me on non clinic days), I can get a hold of one of the primary doctors or main cf nurse as need be 24/7 in most cases such as prescriptions, they have hired an excellent full-time dietician specially to deal with cf patients alone, the doctors are very flexible when it comes to your life schedule such as they have let me wait a couple days to come in so I wouldnt have to miss anything big I had planned, etc.. I think the main problem is at children's you are more taken by the hand versus at UC it teaches you to grow up and be more proactive with your health. And most of things I've read people are complaining about are out of the staffs hands like day passes, what floor your put on, etc.. I'm not going to say I don't miss children's cause I do, but UC is doing the best they can with what they are allotted.

Kevin of OH 11:24PM July 22, 2010

Because CF patients are surviving so long most adult pulmonologists and gastroenterologists only recently have been involved with CF patients. There are few institutions with good comprehensive care plans for adults. The process seems to break down into subspecialties with no one PCP integrating care.
This situation will only get worse unless folks like you become proactive with your institutions. Perhaps the CF Foundation will also become involved. I know CF centers are rated by their pediatric CF program, but I do not know if it true about the adult programs

Gary L of CA 7:50PM July 21, 2010

My daughter is 15 with CF and I have been fearing transition to UC for years now because of what I have heard. I love Cincinnati Childrens. Everyone there is a partner with me in caring for my child. I have never been in another public arena where everyone - right down to the people that transport the kids from their rooms to another floor - are so polite and helpful. Here is my problem - Why shove young adults who decades ago would not have seen the age they are reaching to a place (UC) that sounds like it will do nothing but decrease their life expectancy? So we have worked this hard to allow an insitution to screw it up for us? Seems to me if Health Care Reform can be forced on us - and insurance companies now have to cover our kids until they are 26 - we should have the choice where they are seen - where the best outcome is possible.

Twinkler13 of OH 6:28PM July 21, 2010

I agree about University Hospital as well...my child was basically forced to go there some time ago due to his age...there were lots of promises about how great it would be, even though we were perfectly happy with Children's. Things have improved somewhat over the years due to patient complaints and continued input. Though how sad that the arrangement is being tested & improved at the cost of inconveniencing and discouraging (and affecting the overall health of) some very sick young adults. One plus of the adult program is the pulmonary docs- notably Dr. Joseph & Dr. Trapnell.

cf mom of OH 10:46AM July 20, 2010

Donna, I couldn't agree more. UC is a nightmare for these patients. It is the BEST trauma hospital but not for CF patients.

of KY 9:19PM July 19, 2010

Johns Hopkins has a wonderful transition program to an adult CF clinic that deals with the special issues of aging with this disease. The team there is the best. Aging into an adult program is challenging but if your healthcare team knows the issues you are dealing with and are as compassionate as those at JH Adult CF program, the world is a different and better place.

Patty Lewis of MD 8:55PM July 19, 2010

I have two grandchildren with CF and they have been at Children's Hospital in Cincinnati their whole lives. They loved the Drs and the nurses, if they had to be in the hospital then it was easier being surrounded by people they knew cared deeply about them. No one told them that when they turned 18 the pressure would be on to MOVE them over to University of Cincinnati. To be put on a floor with old people suffering with lung problems. Not allow to have day passes or to go off their floor when they are there for weeks at a time. The care and concern GONE. The personal contact with Dr. GONE. The feel of hopelessness all around you. And as if that isn't enough they have to jump through hoops to get insurance coverage because they are always being dropped for one reason or another. Our family loves Children's Hospital. We want our children to move on because they are young adults but we don't want the care they have come to know to go by the way side. We would like to see a wing open in Children's for young adults. We feel lose in all this and we do not like it. Our young people need a voice and I pray Boomer Esiason will help because his son is a young adult now. And grandma that cares.

Donna Harvey of OH 7:34PM July 19, 2010