Guest guest Posted April 25, 2003 Report Share Posted April 25, 2003 You know my husband would not let me do anything about what happen to us when a was first diagnosed. But, the more I have learned about what low grade care people receive at the CFF in Memphis, the more that my rage has grown! So, I can relate to you, sometimes I wonder if the CF Foundation has ever done a study of different CF centers and how well their patients do, and learn from the most successful ones, I have a feeling that some of those centers would fail miserably! a is doing well, I call one of my friends who is a doctor and she thinks is just a vessel that popped, she checked her pretty wood and felt like she is ok, nonetheless we are going Monday to see Dr. Hanissian. Love, mom of a 9 wcf, Venanzio 6 nocf, Pepe 3 nocf > > > > > > > > > > report it.We are hearing this in spotted cases & I am sure > > they > > > > want > > > > > to know also. It sure starts a bad opinion . You know they > say, > > > One > > > > > rotten apple , can spoil the bunch......You should have the > best > > > > for > > > > > your child AND he doesn't sound like he is the best for you > > > > > > > > > > LOVE & HUGS > > > > > GRANDMOMBEV > > > > > > > > > > > > > > > > > > > > ------------------------------------------- > > > > The opinions and information exchanged on this list should IN > NO > > > WAY > > > > be construed as medical advice. > > > > > > > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS > OR > > > > TREATMENTS. > > > > > > > > ------------------------------------ > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2003 Report Share Posted April 26, 2003 Hi , When Zach was first diagnosed we were sent to a Children's Hospital in St Louis for two days because it was considered an emergency. While there the pediatric pulmonologist told us that the CFF does keep statistics on clinics that have " better outcomes " . Then they try to encourage all clinics to follow the same procedures. The most important indicator of a good outcome was consistant follow-up care. He said the clinics that see patients every three months for check-ups have better outcomes. That was all he would tell me. I am sure there are other important factors that the CFF does not want us to know. How were you able to convince your insurance company to let you switch doctors?? I feel like I have hit a brick wall unless the lousy doctor makes a horrible mistake with Zach. Thanks, Sara > > Hi , > > You may be right about the CFF not doing anything to help, but at > > least I can get my story off my chest. I hope your daughter is > > feeling better. > > Sara > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2003 Report Share Posted April 26, 2003 Gracious , You are certainly do a great job in following up on this . What a wonderful friend to have. Good luck at the clinic visit this next week All will be well soon! LOVE & HUGS, GrandmomBEv Re: HMO Hell!/ I doubt it.../know the feeling You know my husband would not let me do anything about what happen to us when a was first diagnosed. But, the more I have learned about what low grade care people receive at the CFF in Memphis, the more that my rage has grown! So, I can relate to you, sometimes I wonder if the CF Foundation has ever done a study of different CF centers and how well their patients do, and learn from the most successful ones, I have a feeling that some of those centers would fail miserably! a is doing well, I call one of my friends who is a doctor and she thinks is just a vessel that popped, she checked her pretty wood and felt like she is ok, nonetheless we are going Monday to see Dr. Hanissian. Love, mom of a 9 wcf, Venanzio 6 nocf, Pepe 3 nocf > > > > > > > > > > report it.We are hearing this in spotted cases & I am sure > > they > > > > want > > > > > to know also. It sure starts a bad opinion . You know they > say, > > > One > > > > > rotten apple , can spoil the bunch......You should have the > best > > > > for > > > > > your child AND he doesn't sound like he is the best for you > > > > > > > > > > LOVE & HUGS > > > > > GRANDMOMBEV > > > > > > > > > > > > > > > > > > > > ------------------------------------------- > > > > The opinions and information exchanged on this list should IN > NO > > > WAY > > > > be construed as medical advice. > > > > > > > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS > OR > > > > TREATMENTS. > > > > > > > > ------------------------------------ > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2003 Report Share Posted April 26, 2003 Well, we didn't have to convince the insurance company. Fortunaly, we have a PPO so we did not have to have a referal, otherwise it would have been tragic, that is how feel about the CFF in Memphis a very sad tragedy. You know about 3 years ago before we knew a had CF, she had a case of conjunctivitis and the doctor gave her some drops with Sulpha, well, we did not know she was allergic to Sulpha and she got an ulcer on one of her eyes, so we have to take her to a children's eye doctor. At the time we had an HMO and there was a miss up with our primary care dr, I forget what it was but we needed a referral, it was a nightmare, so I am glad at this time we do not an HMO. Love, Mom of a 9 wcf, Venanzio 6 nocf, Pepe 3 nocf > > > Hi , > > > You may be right about the CFF not doing anything to help, but > at > > > least I can get my story off my chest. I hope your daughter is > > > feeling better. > > > Sara > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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