Question posed by Kenzie: Anyone with cystic fibrosis?
Just wondering lol

And if you do know someone with cystic fibrosis, what is their lung function and what are their treatments? i’m sorry, you don’t have to say i’m just really curious…i’ve never met anyone else with it so i don’t really know what’s “normal” and i guess that’s what i’m asking.

my lung function (fev1) is around 60%.
I do vest 30 mins 3 times a day
pulmozyme, hypertonic saline, tobi, zithromax, vitaman d and e, multivitams, enzymes, and right now cipro and bactrim and prednisone.

Best answer:

Answer by Dixie
One of the toughest things about CF, I think, is that you all can’t meet others with it because of possible contamination of bacteria.

I work in a CF clinic. You don’t say how old you are, but I’m guessing teenage. Your lung function is about average, and you take about the same amount of meds as most of the teens and 20 somethings in my clinic (leaving out the cipro and bactrim, sounds like you’re having an exacerbation).
Most of my patients do the vest twice and day and bump it up to three or four times when they’re sick.
I’m sure there are support groups on line, hope you meet up with someone that way.

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A question asked by jedi knight: Does anyone have cystic fibrosis please help me?
ok so ive been going to the doctor for about 2 year and they just told me they thing they know whats wrong with me they think i have cystic fibrosis because they did the sweat test and it was high but there gonna redo the test and do more test to make sure i have it.. do you i have it? they said if i have its a mild case. how long do people with mild case have to live ? tell me about your life if you have cf and how it is with doctor and treatment and stuff tell me about it thank i would appreciated it

Selected answer:

Answer by Kelly H
If the sweat test came back positive then it is likely that you do have CF. Another sweat test and a DNA test will verify the diagnosis.

My seven year old daughter has Cystic Fibrosis. There are over 1,000 different Cystic Fibrosis mutations and even people with the same genetic defect have different symptoms. My daughter’s genetic defect affects both her lungs and her digestion and we knew as soon as she was born that something was wrong. If you are old enough to post this question and you are only now getting sweat tested then I am guessing that your symptoms are on the milder side and that is why your doctor is telling you that if you have Cystic Fibrosis that it is a milder case. There are people in their sixties that have Cystic Fibrosis. I believe these are the people who fall into the milder case category.

Three pieces of advice if you indeed have CF:
1. Limit your research about CF on the Internet. www.cff.org is the CF website and it is very informative. I say this because the personal situations that are posted are often not the norm and it is highly unlikely that they will apply to your case. And as I said, each person with CFs situation is different. Feel free to contact me at any time if I can be of any help.
2. Find a good CF clinic and a CF doctor that you like and feel comfortable talking to. We went through several doctors before we found the right one for us.
3. Make your health a priority. If you are prescribed breathing treatments, medications, etc. Make sure that you do them. They are not an option. Use a lot of hand sanitizer and have the people around you use it too.

My daughter’s life is not a good representation of someone with a milder case but it will give you an idea of what it is like to live with CF. Important…my daughter’s CF situation would not be considered mild so her treatments and therapies may not apply to someone with a milder case of CF. She has to take enzymes with anything that she eats to help her digest her food. She has to eat double the calories of someone her age to maintain or gain weight. She does breathing treatments twice a day and uses a vibrating vest to help loosen mucus in her lungs. She does the breathing treatments and the vest more often when she is sick. She also has some other medications that she takes. She goes to the CF clinic every eight weeks to have her lungs and weight checked. Overall I would say that her life is not easy. But CF is a part of who she is. She is a lot of fun, she loves life and she finds joy in everything. All of the people that I have met with CF are like that.
There are two drugs that are in phased trial testing that show extreme promise for helping to correct the CF defect within a person’s cells. So, there is realistic hope that a cure will be found.

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A question from * once upon a time *: Cystic Fibrosis? anyone with any experience in this disease?
do you or someone you know suffer from cystic fibrosis? what are your symptoms like?? how do you manage?? I just looked it up online because of the symptoms ive suffered since i was a kid. and this is the first thing ive ever seen that has made any sense to me. I want to ask my Dr. to test me for it. how do they test you?

Best answer:

Answer by Jackie
I don’t think you have it or you’d know about it.

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Question by Proud Parent of 6: Cystic Fibrosis? Anyone have it in their familiy?
My neice was recently found to have Cystic Fibrosis. What can we expect? Do you know anyone with this condition? Is there a place I can donate money to help with a cure, treatment, and awarness?

The No 1 answer:

Answer by Alicia
Nobody in my family has it, but my father’s friend does. He is 45 years old, and had a double lung transplant last year.

Cystic fibrosis (also known as CF, mucoviscoidosis, or mucoviscidosis) is a hereditary disease that affects the exocrine (mucus) glands of the lungs, liver, pancreas, and intestines, causing progressive disability due to multisystem failure. In the United States, 1 in 3,900 children is born with CF. Some women have fertility difficulties due to thickened cervical mucus or malnutrition. In severe cases, malnutrition disrupts ovulation and causes amenorrhea. Several common antibiotics such as tobramycin and vancomycin can cause hearing loss or kidney problems with long-term use. In order to prevent these side-effects, the amount of antibiotics in the blood are routinely measured and adjusted accordingly. In most cases, CF causes an early death. Unfortunatley, the average life expectancy is around 36.8 years, although improvements in treatments mean a baby born today could expect to live longer. You could make a donation to the “Cystic Fibrosis Foundation.” So sorry for you neice and the best of luck to you and your family !

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A question from })i({ J and D’s Momma })i({: Does anyone have a child with Cystic Fibrosis?
What has your experience been like? How old is your child? What treatment plan is he/she on? Has it been effective? At what age was your child diagnosed? How does this affect your life?

No 1 answer:

Answer by EMH
My wife and I have 4 kids; our youngest (Claire) has CF. When she was born, she had a distended abdomen … it ended up that her intestine had ruptured before she was born. She was in the NICU for 2.5 months. At 1 month, she was finally diagnosed (two separate new born screens came back negative) – finally it was confirmed with a DNA test.

As she is getting older, she is much doing better. She has a vest now, so I give a lot of the credit to that. She gets 3 breathing treatments a day (4 different breathing treatment medicines) and the vest 2 times a day. She takes enzymes with every meal and snack (about 20 per day). She’s also on Prevacid, singulair, and many vitamins. At night she is also on a feeding tube. She has CF clinic about once every 1.5 months (more in the winter and less in the summer).

CF really affected our lives at first … and it still does. Unfortunately it’s a part of our lives … we’ve just learned to live with it … it’s all normal for her.

You can find out a little about Claire (and CF) at www.fourwillows.com/claire (be sure to also view the Hope For Claire icon to view a presentation that my wife made).

Let me know if you have any further questions.

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by fakelvis

A question asked by TPACE: Does anyone know a doctor that treats CYSTIC FIBROSIS in or around Mississippi ?
WE HAVE A DOCTOR IN JACKSON BUT WE HAVE BEEN WAITING FOR A BED AT UMC FOR A WEEK. MY HUSBAND IS GETTING WORSE EVERYDAY THAT HE IS NOT GETTING TREATMENT. PLEASE HELP US FIND A DOCTOR ASAP.
THANK YOU ALL FROM THE BOTTOM OF MY HEART.

My chosen answer:

Answer by Cyndi S
I’m pretty sure he needs to see an internist,seeing that this has to do with his pancreas & respiratory system. You could always walk into a hospital emergency room and then have him transferred to UMC when they do get a bed. Bet it would be much faster than to wait.
Best of Luck

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A question asked by catiegraham: does anyone know all the symptoms of cystic fibrosis??

Best answer:

Answer by Windseeker_1
Try doing a Google search or check Wikipedia.

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by fakelvis

Question by Sadsadsad Sadsadsadas: Can anyone please answer these questions on cystic fibrosis?
cystic fibrosis
1. What is the cause of this disease? Gene therapy is a possibility for future treatments.
2.What are the pros and cons of gene therapy.
3. What are the pros and cons of genetic testing for this disease (cystic fibrosis) ?
4.Who should be tested?
5. Who should be able to access the results of the genetic test results of a genetic test (parents, doctors, patients, insurance companies, etc.)

Best answer:

Answer by gangadharan nair
Cystic Fibrosis: This condition is inherited in an autosomal recessive pattern, which means both copies of the gene in each cell have mutations. The parents of an individual with an autosomal recessive condition each carry one copy of the mutated gene, but they typically do not show signs and symptoms of the condition.

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