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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Can't let it go !!!
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when my Girl was i think 3-4 she had a central line in.. the aneathasist who inserted it told the nurse please be carful as it is resting on the aorta wall... about a week later the professor treating her decides to take some bloods through the central line (which is not a normal practice i thought ) as he is drawing back a large clump of white "tissue" looking stuff sucks through the tube it looked like someone has put some yellow/cream solid foam in the syringe. now i pointed this out straight away and i was told my 3 year old cf child who was underweight had some Colesterol that had been sucked up ????? i disagreed but the substance was never checked i shortly after refused to have this professor attend to my daughter ever again... i have for years questioned this cholesterol theory with every doctor i have ever seen with my girl and i am always told no way would it have been cholesterol...
I have always considered getting her heart imaged so i can see if he did any damage to her aorta but i wanted to ask if anyone else has had anything even remotly similar in a three year old. as i feel like i should have done this years ago but have never know what to say... also she has Blue attacks no breathing issue at the time just the bridge of her nose the tip of her nose the outer lines of her lips and between her eyebrows goes blue family nurses and even a doctor has seen this happen but it is always put down to a normal thing some kids get ????? Posted on 09/15/09, 09:09 pm |
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If you have any questions, I would ask. I asked questions about my 3 yr. old daughter who had cf. She just passed away in June 2009,...uhmmmm, so while we were battling cf, we get struck with brain damage! Have you EVER heard of cystic fibrosis causing "brain damage?" We are still today waiting on the autopsy. I clearly remember asking her pulmonolgists about specific test..but, b/c she appered ok, they thought that everything on the inside was ok... Always ask questions..You can only educate yourself & others. Anything else I can help with let me know. Hope this helps..
Ashley 
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thanks ash i was starting to think i was asking the wrong people advise lol i am so sorry about your little girl i have no idea what that would feel and i don't ever want to but i hope the autopsy gives some more answeres yes i am going to ask questions even if they make me feel like a idiot i want to be sure i know too many doctors who have just let it go and shouldn't have been i am so sorry your experiance has happened but glad it could help my little girl.
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