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[NoExcuses]

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[NoExcuses]

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[Ratatosk]

Who goes to the CF Center of the U of Minnesota?

If you check out their website --- sorry don't have the link -- they have map showing where their patients come from -- majority are from MN, ND, IA, WI, but there are several from way far away.

And it's really just a short flight away -- I flew to LA years ago from Minneapolis and think it took 3 hours...

I believe they have an education weekend in November that people attend from all over.

Liza mom to a toddler wcf

 

[miesl]

Who goes to the CF Center of the U of Minnesota?

Another Minnesotan checking in...

I've also lived here my whole life. It's a great place. There are lots of great places near the Twin Cities to do all kinds of outdoor activities in all seasons. Skiing and snowshoeing in the winter. Hiking, rock climbing, backpacking, biking, rollerblading, swimming... etc in the spring/summer/fall. There's an amazing park system in the cities, and an excellent state park system (with nice campgounds that have electrical hookups for things like nebs and vests). Lake Superior (and the wonderful views) is about 2.5-3 hours away, and makes an excellent weekend escape.

What are you looking into going into grad school for? The U of MN grad school is pretty nifty, you might want to look into it.

Yes, it does get cold in the winter. Yes, shovelling snow kinda sucks (but it's great aerobic exercise). However, give me (or Jeremy) the option between a cold winter or a bloody hot summer... both of us will take the cold winter.

Onto other things, the CF clinic. Admittedly, it's the only one I've been to (Jeremy started going when he moved to MN in high school). That said - I have little basis for comparision. I really like the clinic. We see Dr. Dunitz in the adult center. He is an excellent doctor, and pays attention to what Jeremy has to say about how he feels. Example - one of the last visits, Jeremy was concerned that he felt congested and his PFTs would be down. They were up (go figure). We left with "orders" to increase to nebs/vest 3x day, and an rx for bactrim.

I don't know what other clinics do... but every visit they do PFTs and a sputum sample which gets analyzed for bacteria type and antibiotic sensitivity (hence the determination that bactrim would be most effective oral in stopping the bacteria party). Yearly tests include... glucose tolerance, chest xray, dexa scan (bone density), a more extensive PFT.

Other nice things about the clinic. The new computerized medical chart. It's so much nicer than the paper one (you know, the one that's about 3 inches thick). Studies. We (I say we... but he's the one taking the pills and getting poked) just finished a year long study, and have been approached about two more. The yearly CF conference. Lots of learning, and lots of food - what could be better?

PM me if you want to know more.

 

[anonymous]

Who goes to the CF Center of the U of Minnesota?

Ditto to Miesl.

I've gone there since I was 4 or 5. Only hositalized once as an adult. I think we've talked about this topic and Dr. Warrick in other posts...too lazy at the moment to try and repeat everything.

--Wallflower, 34 w/cf

 

[ReneeP]

Who goes to the CF Center of the U of Minnesota?

Amy,

We lived in MN and went to the MPLS clinic for 4 years (i have 2 daughters with CF). I have taken them to 3 other CF clinics over the years so I do have some room to compare. The 3 others are Lexington, KY, Knoxville, TN and San Antonio, TX (our current clinic).

I really can't say that the care the girls received was any better at any particular clinic. I would say they all provided great care but they just do some things differently. One of the differences that comes to mind right away is the use of Mucomyst which is used by virtually evey patient in MPLS but it's almost unheard of these days at any other clinic. (the drs here tried to take the girls off it when we moved but I refused).

Another thing I will say that is great about MPLS is the communication with the staff. If you call them with a question, you are going to get an anwser. Unfortunately I am having a problem with that now and am going to discuss it with the dr at our next visit in two weeks. I love our new dr here but they are very very very bad about not returning phone calls. I think it's extremely disrespectful. For example, I called the CF nurse last Friday and left her a message because we got results back from a culture the ENT did after my daughter's last sinus surgery...I told her the 3 things she cultured and asked her to call me and let me know if they wanted her on an antibiotic. It is now 7 days later and I have yet to get a response. That is very typical here. I can still call the nurses in MPLS if I have a concern and they will call me back right away and we've been gone from there for a 1 1/2 years. I do still travel up there for the education day they have in November. I plan to always do that to keep up with the current advances and news.

I really stressed out about moving from MPLS to TX because of the CF Center being <i>"the best"</i> ... Whether or not it is actually better than others is up for debate but they do have some pretty convincing numbers. I feel that the majority of CF care, however, is done in the home and that's a major part in how well a person will do. No matter how good your dr is, if you're not participating in your care, you'll go downhill. In the end, we obviously decided to move. I have had some regrets because my younger daughter developed some major sinus problems but she is slowly improving.

Our quality of life is better here, if for nothing except the cost of living being so much lower. We went from a 3 bedroom apartment to a 4 bedroom house with a pool and are paying the same payment (and we own the house instead of renting). MPLS is a very expensive place to live (comparitively speaking). The kids can spend so much more time outdoors here and are much more active (because of the weather). I think that's good for them as well. They aren't cooped up all winter long like they were before.

There is one thing I really disliked about the CF Center in MPLS and that was the setup of the clinic. It is a multi-disciplinary clinic meaning that you have people with all different conditions in the same clinic. I never liked that. Not real sure why it bothered me but it did. I guess I just like for all the staff to work with CF and not with 100 other diseases... It makes me feel like they know more about CF if that is all they specialize in. Maybe that's just me but I prefer it that way.

Sorry for rambling on so long... There is just one last thing I'd like to say and that is regarding the Knoxville, TN clinic. That was our first clinic and Dr. John Rogers is absolutely wonderful. I will never forget that man and would jump at the chance to see him again. Unfortunately I will probably not ever live in that part of the country again but I'd just like to say "Kudos to Dr. Rogers". I really miss him. If you ever happen to live anywhere near Knoxville, he comes very highly recommended.