gary-levin
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As in most things, the media does not get it quite right. For most media, it is a black and white issue, not a gray one. In today’s world, the distance of five feet is vague. Most ‘bugs’ such as pseudomonas. are not transmitted by aerosol, unless the person coughs directly upon you. Two CF patients kissing would be a high-risk adventure. The chances are they both have MRSA and resistant Pseudomonas.
CF patients need to have some quality of life, and restricting CFers from socializing with ‘people like me’ is a cruel thing. I have not seen any studies of patients with CF being sicker if they are around other people with CF. I am going to have to look at that.
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It is common for patients to be in denial. And the symptoms you have may change as different organs are affected by CF at different times. CF affects all the mucus glands, pancreas, sweat, intestines and even the colon. Ulcers develop from stress and cortisone levels go up during stress. Steroids commonly cause ulcers….Always listen to your body…it knows what is going on. Dont be afraid to discuss all your concerns with you CF. physicians.
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My 30 year old son noticed an immediate improvement within 24 hours, his sputum was liquified and he spit out a lot of fluid. He felt so much better, and realized he had never breathed so easily, he stopped coughing almost immediately, and walks easily without shortness of breath. He did have some serious side effects, jerking, insomnia, depression, and tiredness. After one month he decided to stop using it since it was effecting his quality of life more than the CF. Eventually after several weeks he went back on it, every other day and is doing well. He has gained 10 pounds. I think the dosing needs to be adjusted for small people. The studies used a set dosage that may not be appropriate for all patients. Patients need to alert their CF clinic about this.
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Ok Ashley. You and your husband are carriers, which means you each carry at least one 508 mutation. Each gene has two loci, one may be normal. The highest probability if you are both carriers is that your child wouldl have a probability of having CF is 50/50, the same as flipping a coin. So you have a good chance at having a perfectly normal child. The test that was done on you and your husband was on your own genome, not the baby’s.
If you really want to know about the baby you will need to have an amniocentesis to examine the baby’s blood.
There are some risks to the baby to have this test, and you should discuss it with your OB/GYN.My advice is:
Go to a CF Center for evaluation. They are experts. And will advise you where to go for delivery and post natal care. No matter what you will love this child as a special person. He will probably live a long life now with the revolutionary developments during the past 30 years.
My son is now 31 years old. When he was 4 mos old he was diagnosed with CF in 1988 and we were told average survival was 9-10 years. He now is on the latest medications, his lung function is over 85%.
I bet your baby will be normal. He will be tested when born anyway, so don’t do an amniocentesis. Don’t consider terminating his or her life….He/she will be a blessing to you and the world. You are all in my prayers. g.m.levin, m.d.
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In vitro studies of bacterial growth often reveal antibacterial activity of fungi. That is how Penicillin was discovered. This phenomenon dates back to Fleming in 1940 when he was growing staphylococcus and discovered a fungal contaminant on the plate. The areas surrounding fungal colonies had no staphylococcal growth. There may be other fungi that have this attribute. However introducing a fungus into the CF lung would be dangerous. The substance from the fungus must be isolated and tested. This is a good lead.