Cystic Fibrosis Forum (EXP)
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Adult onset CF? Please reply!
- Thread starter anonymous
- Start date
Yes I thought 66 was great, I do not know at this time they are still testing me. I do have that great infection MRSA. I am not the oldest in South Dakota, 2nd, a woman is 72. so there is hope for all to enjoy a full life. one day at a time. laughts and love to you all.Tom:heart;
:wine;
:wine;I am the mother of a 19 y o with CF so obviously I am a carrier. I was tested by sweat test for CF 18 years ago due to the probs I had been having with asthma from age 16. They said it was negative. For the past 2 years I have had severe sinus, ear probs. My ct shows chronic pansinusitis. I had surgery a few months ago and they found psuedomonas in my sinuses so I have been on Dalacin C and Cipro for 3 months. The ENT says I have stick thicky mucus blocking my Eustacian Tubes so I had grommets placed but they keep clogging up with this mucus or keep getting infected and he has had to replace them and I am on gentamycin drops. The ENT does'nt really know whats up but swears that if I dont have CF, I must be a symptomatic carrier. He has taken my Xrays to show other ENT's who have come across CF patients. He says he has only ever had one patient with more severe sinusitis and has never seen anyone with recurring sticky stuff blcoking their ears continually. There is no guarantee that anymore surgery will help and sinus surgery will not help with the ears. I AM CONFUSED!! I have asthma at present and on Prednisolone but it is not working. I have a different tight wheezy cough and can taste a funny taste when I am coughing. Usually, I have a moist cough and steroids help pretty quickly. Anyone else have ideas on this funny taste?? I don't know whether to ask about be tested again or is it just a co-incidence
or is there much more we don't know about carriers having symptoms. I know my Dad is a carrier but My Mum has not been tested. Only if she is a carrier can I have CF, so maybe I should see if she will be tested!!
Thanks for listening
J
or is there much more we don't know about carriers having symptoms. I know my Dad is a carrier but My Mum has not been tested. Only if she is a carrier can I have CF, so maybe I should see if she will be tested!!
Thanks for listening
J
I am wondering if you can "pass" a sweat test and a blood test and still have CF? I am 50 and have had bronchiectasis since teens, had 2 lobectomies and still have an incurable pseudomonas infection. The infection seems to require me to use prednisone for the last 2 years or else I have fevers and poor breathing. Does anyone know if glutathione can help this ?/ I am getting very concerned about the prednisone side-effects.
Most CF blood tests only check for the most common CF mutations. usually 25-50. There are well over 1000 mutations, so make sure you go to a CF certified center to get checked and let them know the medical history in depth. I would definetly get tested and wouldn't stop till I got EVERY mutation was checked if it were me!
Julie
Julie