What is Cystic Fibrosis
Cystic fibrosis, (CF) is a common hereditary human disease which affects many different parts of the body, including the lungs, pancreas, gastrointestinal tract, reproductive organ...
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Parents of adult children with CF
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I have 27 year old daughter with cystic fibrosis who also has diabetes and diagnosed last year with cepacia. I'd like to talk to other parents who face the same situation.
Posted on 09/10/09, 04:09 pm |
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my daughter has cepacia. What do you want to know? 
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my son has CF and CFRD no cepacia. hows your daughter doing?
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My daughter is having a tough time. she was a patient at Emory in Atlanta. After she got cepacia, and was turned down for a lung transplant she has been so dpressed. also the Dr's at emory basically wrote her off and suggested she should look into hospice. since she's married we tried to step back. We intervened a week or so ago, and switched to Dr. Lawrence McKean in Decatur, Ga. she's at Dekalb Medical Center.. He sees CF's and is esp. aggressive with cepacia. she got down to 92#. She's 5'7". On top of that with her CFRD she's bipolar. That runs in our family. She's on the mend, it's going to take a long time to get her back up to 125#. My ;advice to you is no matter what age your children are, don't ever give in and believe everything you hear. I told my daughter that she's the employer and the doctor is the employee, so she can FIRE THEM at anytime. I know that she's in God's hands and will get stronger everyday. Thanks for listening. I also have a website,www.caringbridge.org/visit/susanneheck for people to keep up so I don't have to repeat myself.
Hope all is well with you too. Pam
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hi Pammy. good for you for getting involved as you did with your daughter she needed you. no matter what age we are still the mom's.
maybe now this new doc will get her up to where she should be again.
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Hi I am a 36 year old cfer. My mom still goes to every appointment and I do have cepcia. Did you look into a lung transplat hospital that accepts cepcia. There is as least 4 in the united states. My doctor is a fighter for her patients I can not believe the doctor telling her that. My doctor is said to do miracles by her co-workers. I go to Harper in Detroit Michigan. Doctor Dana Kissner. If things do not work out better call her.
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Thanks for letting me k now. Susanne through her family(her dad & I) made an appt. with one of her old Drs. who left the CF center to go back to his specialty of asthma aand allergy. He also treats CF's with cepacia. She's been in a new hospital with him treating her. He's awesome. At UAB they told her a first that they would do her transplant with her cepacia. Then after another evaluation said no without an explanation. Dr. McKean(the one now) couldn't understand it.Both he and the new hospital are awesome. She got so low a month ago that her PFT's were 12 and weight 92lbs. she's 5'7". Oh my gosh. We though we were losing her, so my husband intervened. I think her husband didn't realize how bad it was. He's so used to her fighting back.
Thanks for your post. Tomorrow she'll go home from the new hospital, Dekalb Medical in Decatur, Ga. after 4 weeks and without IV's. susanne's thrilled about that. She went from 12-23 on PFT and 100#. Thanks for your comment. Hope you and all CF families have a nice Thanksgiving and Christmas. Pam Noble
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