CF CENTERS!!

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Joblazer86

New member
Just wanted to post this for the sake of everyone to know about it. When I read it I was upset with the way I have been treated over the years at clinics. As far as them not being aggressive enough when lung functions went down along with weight ,but at that time I was ignorant. I thought if I wasn't short of breath I was fine. Here's the website for the article and if you go to minneapolis' cf centre you are in great hands it looks like.www.newyorker.com/fact/content/?041206fa_fact
 
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arabeth

Guest
Hi Joseph,

Thanks for sharing this article. It was very interesting to read. I currently live in the Twin Cities and my daughters go to the Minneapolis CF Center. It is a wonderful place and I have not a single bad thing to say about it. Dr. Milla (the current director) is fantastic. Dr. Warwick, as you read, is also unbelievable. He does talks every year at the CF Education Day and is extremely personable so we've had many occasions to sit and chat with him. His devotion to CF and his patients is breathe taking. You can see in his eyes how much he cares. We are actually moving right after Christmas to south Texas and will be changing CF Centers. I am very nervous about the change and I must admit this article made me a little more nervous. I hate to leave the doctors here. I had a discussion about the possible move months ago with Dr. Milla to see what he thought about it. I told him where we'd be going. He said he knew the doctor at the new clinic and would be more than happy to call her and discuss the girls and he would be happy to help with anything he could after we move. If we have a question or concern, we are welcome to call. That reassured me. I personally believe that the day to day care CF patients receive is the most important factor in how well they do. (minus the severity of the disease of course, some are just simply more severe and the care they receive unfortunately does not change that fact).... But if the parents of a CF child, or the CF patient themselves, do not take care of themselves, no amount of medical knowledge can keep them healthy. No clinic can force people to do their treatments or take meds. Also, Minnesota in general is one of the top two healthiest states in the country, not just where CF is concerned. (the second is New Hampshire)... People are very health conscious compared to other places I have lived. I'm sure that plays a role in the numbers too. Also, it's so darn cold here that it's hard for germs to survive in the air long enough to infect people... :) ... While I absolutely hate the weather, and that is one of the reasons we wanted to move, there is some benefit to it being so cold. Again, thanks for sharing. I have heard wonderful things about the new CF Center we will be going to so that's keeping me positive. And I always have in the back of my mind that we can always move back if we feel we need to.
 
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anonymous

New member
I just read the article in the New Yorker last night and was happy to see that someone had posted thier frustrations also! When he was talking about the first CF center that he visited, the one in Cincinnati was it, he was saying how it seemed perfectly fine, and funny enough, it sounded EXACTLY like my CF center...always sending out dumb letters and surveys, making sure everyone gets thier flu shot...but not really DOING anything personal or aggressive or individual-based. I have no desire to go to Minnesota but I wonder if I had been there from the beginning if I would be healthier. At one point in my life I had a doctor at Childrens in Boston who was the head of the department, she was GREAT. She was just like Dr. Warwick sounded. Unfortunately she was older and retired a few years ago. Her treatment was always aggressive, and at the time, especially since I was a teenager, it was not always to my liking. But I was healthier in those 4 or 5 years with her than ever. I guess those of us not at these top notch centers will have to do the agressing ourselves.

Caitlin

21 with CF
 
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Joblazer86

New member
Arabeth you will probably do fine in Tx. but keep up with the childrens fev's and weight when you go to the clinic. My past clinic just asked how I was feeling and did not tell me what was happening to me from my fev's. Next thing I found out a year later I lost 20% of my lungs. So if you are agressive with it you are alright and if your doctor is also then that's even better. Sorry to hear Caitlin that your clinic is not that aggressive but I'm glad you realized that you have to be the aggresser if this happens.
 
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HollyCatheryn

New member
I concur! I went to one clinic when I went to college and then another when I went home. I've now moved and am being seen at the college clinic again. First time they saw me - they jumped all around and started all sorts of new meds and treatments and regimines and put me in the hospital. Finally I had the chance to sit with my doc and ask what all the hubbub was about. He said that in the last 7 years (time from college visits to now) I had lost over 1litre of lung function! 1 liter! My other clinic didn't even bother to tell me I was slipping. My weight has been stable for the most part. When I did notice a change in how I felt, mucus production and clearance I mentioned it to the other clinic and they didn't really offer any info or suggestions. Just kind of a nod and a scribble in my chart!Fortunately this new doc and clinic acted quickly and I was able to get some of my numbers back up. This doc said they'd expect to see some change over that length of time, but not THIS MUCH!Needless to say, I'm glad I'm here now! I've got a husband and a daughter and I want to be around for a long time! For them and for me! But, I can't do it without a doc who's going to be vigilant with me.
 
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anonymous

New member
Caitlyn, Do you still go the children's in Boston? My son diagnosed at birth by a newborn screening is being seen there. However we keep being seen by fellows. He has had no symptoms of CF as of yet. We are seen every 3 mo blood work 1x year same with chest xrays. They recommended chest pt 20mins 3 x week. After that article I wonder if what we are doing is enough? Chris mom of 2 1/2 yr old with CF
 
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