Cystic Fibrosis

Question: I have symptons of Cystic Fibrosis. Is it possible to start show the symptons in my 30's? I am having a hard time breathing and seem to have attacks that come on all of a sudden. Also I t feels like something stuck in my lungs..I cannot remeber any signs when I was growing up. Is it possible to start showing signs of cystic fibrosis in my 30's?

Answer: Yes, it is possible. Some of the previous answers are unbelieveable. No, you don't have to be diagnosed prior to 2 years old and NO you don't have to spend your teenager years in the hospital. Some of you are reading out of a 1950's medical journal. There are many different mutations with different manifestations. There are MANY different forms of CF and there are documented cases of people being diagnosed in their 30's, 40's, 50's , 60's etc... Good Look and I hope you find what is ailing you.

Question: What is the average life expectancy for people with Cystic Fibrosis? I'm pregnant with my first baby and I got some tests done and the doctors informed me that my daughter will have Cystic Fibrosis. My mother had a brother and sister who died from the disease when they were quite young. Anyway, I'm wondering what is the current life expectancy for children/people with Cystic Fibrosis and how can you best take care of them to maximize their life?

Answer: more than 37 years old

Question: Is a cystic fibrosis screening test required when you are having an IUI procedure done with donor sperm? The fertility clinic I am going to requires I do a cystic fibrosis screening test before being having an IUI procedure with donor sperm. I do not want this screening, and do not think I should be required to take it. It also costs $150 and takes 4 weeks to get the results. Does anyone know if this is truly a requirement? I am having trouble finding any information online. Thanks!

Answer: You should be able to have this screening done at your OB office and have it covered by insurance. I have cf in my family so the screening (blood was taken, that's it) happened when I was 5 weeks pregnant. My insurance covered it and luckily I wasn't a carrier. But I know two people who were screened and who did not think they were carriers, but they were. There's a high prevalence among Caucasians. So it's not a bad idea to have it done if you are white. Good luck.

Question: What is life like for a person with Cystic Fibrosis after a lung transplant? I want to know if anyone has any experiences/knowledge here, such as how long do you have to be in the hospital after the surgery? What is the quality of life like after a double lung transplant? Will the I develop Cystic Fibrosis problems in the new lungs? I'm 17 and will have to have a douple lung transplant eventually because of my Cystic Fibrosis and poor lung function because of the disease. I'm nervous about it.

Answer: http://www.cff.org/treatments/LungTransplantation/

Question: Having Cystic Fibrosis would it be unsafe to travel to a third world country ? My friend wants to go to Libya for two weeks and invited me to come with her (she has relatives in some village there). I'd like to go to see it such a different place, but I have Cystic Fibrosis and I'm kind of worried about getting sick there, getting an infection there and what I would do if I did. I get sick and get infections a lot as it is. Has anyone had any experience with this or have any advice?

Answer: Hello! If you ask me, I think you should be fine. I'm not sure what you are using for airway clearance (probably the Therapy Vest?), but have you heard of something called the PEP, or the Flutter? If not, I would ask your Respiratory Therapist for one of those. Basically, what you do is its a hand held device that you blow into that creates pressure deep down into your lungs and helps you cough the sputum out. If you have good insurance, the PEP is around $60 (atleast is was for me). These two work wonders for when we go away on trips, because they are not nearly has big or heavy as the Vest. If you have any questions, or need someone to talk to, feel free to ask. Hope I helped!

Question: How much does a lung transplant help with cystic fibrosis? A couple of days ago, a guy I knew back in my hometown got a double lung transplant. He has cystic fibrosis. I know removiing the lungs takes away the bacteria but does it get rid of the disease?

Answer: nope it gets rid of the lung problem but doesn't cure the person, cystic fibrosis does not only affect the lungs but the pancreas as well...it inhibits the pancreas' abiltiy to secrete enzymes need for digestion which causes poor growth, fatty diarrhea and deficiency in fat-soluble vitamins. cystic fibrosis is a multi system disease

Question: Can you develop cystic fibrosis as a teenager? All the reading I've done on cystic fibrosis says it is a genetic disease. However, I have a lot of the symptoms of it and was wondering if it could become evident later in life? Thanks.

Answer: It is a genetic disease, my daughter was almost nine years old at diagnosis and she had very little signs of the disease. I know several people that have been diagnosed in their 30s, 40s and recently met a nurse that was diagnosed at almost 50. It is not a one size fits all disease, it presents very different from patient to patient, even from siblings that have the same mutations. Unfortunately, the older the patient gets the more marked the disease, it is afterall a progressive illness. On the other hand those of us that are carriers may present many signs of the disease. I am a carrier and I have horrible gi(gastro-intestinal) issues, lung issues since a very early age, etc. There are other diseases that mimic CF one is Ciliac disease, Good luck, Anna mom of a patient with CF

Question: How exactly is physiotherapy done with Cystic Fibrosis patients? I'm 20 and my girlfriend is 19. My girlfriend has Cystic Fibrosis and i invited her to stay over for a few days with me at my place. I was kind of surprised when she first told me about her disease. I know she has pretty low lung function and will have a lung transplant eventually. But how is the physiotherapy done and in what ways and how often? Do they usually do it on their own or do they often need someone to help them? Should I know how to do it with my girlfriend?

Answer: Different people with CF have different needs relative to physiotherapy. Some absolutely need it several times a day, while others only need it on an as-needed basis, and others something inbetween. It is rare that a person can do the chest therapy required to keep the mucus in the lungs moving - although a haf-a55ed job can be done if no one else is around. It is a very person choice whether to have people you are in a relationship with learn to do the personal care required when you have a disability. Some see it as a form of intimacy and are OK with it. Other see it as a job task and want to keep that part of their life separate from their intimate life.

Question: What is the current life expectancy for people with cystic fibrosis? I found out that my twin daughters have cystic fibrosis, what is the average current life-expectancy for people with this disease and how can the you maximize their life expectancy?

Answer: The predicted median age of survival for people with cystic fibrosis is 37 years. Cystic Fibrosis Foundation www.cff.org CysticFibrosis.com www.cysticfibrosis.com

Question: What is the life expectancy after a double lung transplant if you have Cystic Fibrosis? My little sister is a teenager and has Cystic Fibrosis. Her doctor said she will need to have a double lung transplant eventually...her lung function is not good, and she gets frequent infections. She also has a lot of problems with digesting and has to have a feeding tube to provide extra nutrients. I was wondering, does anyone who's knowledgeable know what the life expectancy is after a double lung transplant considering she has Cystic Fibrosis? And the probability of just surviving the lung transplant surgery?

Answer: I don't know but I would guess it would double her age, she would have new lungs but they would wear down like her original lungs.

Question: Cystic Fibrosis? I posted question about there being very little awareness as far as Cystic Fibrosis is concerned. Cystic Fibrosis is 1 of the top most lethal diseases in the United States 2nd only to Diabeties. The information I read on this didnt state where Cancer falls. My life has been impacted by all 3 of theses diseases. I have 2 neices with type 1 Diabeties one of them went undetected at birth which caused her to go blind, deaf and be mentally chalenged, my father, his father, a brother, and my sister Dee who also had Cystic Fibrosis that caused her to get type 2 Diabeties.I had 2 grandparents who died from cancer, and a sister who had it. I dont think its fair for 1 disease to get more attention to others even if it means saving the Titantic or 1 person on a row boat wouldnt you want to save them all? I have come in contact with MANY KIDS with CF 2 of them being my sisters Misty&Dee who have both passed away. I want to make people more aware. I have a plan would you help? In their memory.

Answer: Roseykat, it is wonderful to do something in memory of your sisters. Check out the cff.org site and click on the link to local chapters to see where there is one near you. Be warned, as in any organization, it might be hard to just walk in the door and be accepted as someone who is serious about helping (sad to say), but go anyway. My daughter died almost five years ago and her old grade school just held "Sarah's Walk" this past Friday, which is a walk-a-thon held in her memory to raise money for the CF Foundation. They also give an award to a graduating student every year in her memory. This is odd. I just did a search for "Sarah's Walk" and found out that another school - hours and hours away from us - is also holding a "Sarah's Walk" to raise money for CF. This is for a different Sarah, but it's ironic that both "Sarah's Walks" are for the same cause. When our community built a new hospital, we donated the money to help equip the Pulmonary Function Test Lab and there is a sign stating that the room is in her memory. This doesn't promote CF awareness, but it does preserve her memory in an appropriate location. We continue to support the CF Foundation as well as the CF Center where Sarah was treated for her entire life, as they have active research projects. Maybe you could help raise some money to support CF research. What's your plan?

Question: How long does it take to get Cystic Fibrosis tests back? I am pregnant and was tested for cystic fibrosis along with a million other things on the 30th of August. I was back at the doctor a week later on the 6th of August, and the doctor said my results all came back normal but the down syndrom and cystic fibrosis tests had not come back yet. On the 6th I had my pap smear and pelvic exam and yesterday on the 15th got a letter in the mail saying that my pap smear, urine, and blood tests, and quad screen all came back normal, but the box for cystic fibrosis was not checked, I'm wondering if that means I am a carrier of the disease or if it means they haven't gotten the results in yet. I'm going to call my doctor in the morning, but I'm really worried. Does anyone know how long it takes to get the results back from that test?

Answer: I had this done back in August and it only took two weeks so it looks like someone's either asleep at the wheel and not paying attention to what info you're getting or there is some hold up. Next time you're in you should ask about it but if it came back that you were positive then I would imagine that they would have called you so your partner could be checked as well. Best of luck!

Question: How do i know if i have cystic fibrosis? Am doing a project about cystic fibrosis and am wondering how do people know if they have it?What are the signs that you have it?

Answer: http://www.mayoclinic.com/health/cystic-… this is a GREAT website : ]

Question: How close can one with Cystic Fibrosis be to living a "normal" life? On a scale of 1-10 (10 being closest to "normal" living), where does one with CF fall? How does it affect things emotionally? Financially? I am doing a project on Cystic Fibrosis, and some (well most) sources are too general in explaining how life really is.

Answer: It really varies with the person. My boyfriend is very fortunate-- he has a mild case. At 19, he's only had to have sinus-clearing surgery twice (three times? I can't remember), and is expected to live well past the 37-year median age of survival. There are many people that don't ever make it to adulthood. Most CF patients are at a nine. They take pills with every meal (pancreatic lipase, the number of pills is determined by weight of the person), which is more problematic for kids than for adults (for small children, the enzyme pills are mixed with applesauce or ketchup). Every other month, my boyfriend has a tobi-abuterol treatment he does twice a day (it's an antibiotic and a bronchidilator, respectively). Women can still have children (men are generally sterile). CF patients can still play sports (sports and choir are actually encouraged, because of the lung exercise) and do everything else that others do. They can eat as much as they want, because they're still going to be skinny. They lead normal lives. What it takes to make them healthy: Exercise is the single most important thing. Adequate nutrition is the other--sure, they can eat all they want, but since they're bodies are absorbing less, they need to eat more nutritionally-dense foods. CF patients are more prone to infection, and thus it is more important to stay active and healthy in the winter months, when infection is more prevalent in the general population Finances are very hard. Insurance policies generally cover generic and brand name prescriptions, but what about "rare" ones? almost all CF prescriptions (Tobi, Creon-5, Abuterol) fall under that category. Insurance plans that require you to go to netwok doctors can be very frustrating--at my boyfriend's last doctor appointment, we walked in of his doctor pulling up the Cystic Fibrosis Wikipedia page. We've been dating for several years, but have yet to get married because we can't afford the health insurance (which is now covered by his mom's work policy). Emotionally, it's hard on the family--CF awareness is very low, and it's very hard to know that the love of your life will die before you have a 30 or 40 year anniversary with them. There are no drugs that have been tested and deemed safe for elderly CF patients, because there are not enough elderly CF patients to test them on. It's hard for the CF patient to know that they have a shorter life, but not to really know how short that life may be. To be a CF patient, or to be close to one, is emotionally painful. Knowing you're going to die, or that the love of your life is going to die, HURTS. I know it sounds silly, but thank you so much for doing this project. Thank you SO much. CF awareness is ridiculously low.

Question: Can the drugs you take if you have Cystic Fibrosis harm an unborn baby? My son's fiancee has Cystic Fibrosis and she's pregnant with their baby, she's 21. I know she's generally very weak/frail and takes a bunch of different medications, and nebulizers and digestive enzymes. I was just wondering if anyone is familar and knows if such medications could cause harm to an unborn baby? She's also having a hard time keeping enough weight on.

Answer: I have CF, and have asked those questions myself to my doctors. It just depends on what she is taking. Her CF doctors would be able to tell her what is safe and what isn't. And if she's taking anything that would not be seen as safe, there are usually alternatives that are safer that she could take during her pregnancy. I would suggest that she contact her doctors and discuss the situation.

Question: What are all the types of cystic fibrosis ? i want to know how gene therapy can help all types of cystic fibrosis.and i also want to know what are some of the really bad cystic fibrosis diseases or diseases that are alike them.

Answer: Types of Cystic Fibrosis Types list: The list of types of Cystic Fibrosis mentioned in various sources includes: * Over 500 different cystic fibrosis mutations exist * Delta F508 mutation cystic fibrosis * R117H mutation cystic fibrosis Gene therapy by aerosol is an attractive approach for the treatment of cystic fibrosis (CF). Clinical trials with aerosols in CF patients have been conducted by five different groups, three using adenoidal vectors and two using cationic lonesomes carrying the coding sequence for the Cystic Fibrosis Trans-membrane Conductance Regulator (CF TR). These trials revealed that gene transfer from the lumen to the respiratory epithelium can currently be achieved in Viveo, but only with low efficiency and for limited duration. Some of the many hurdles on the way to successful gene therapy for this disease will be discussed in this review. Innovative strategies need to be developed to reach this tantalizing goal. Diseases for which Cystic Fibrosis may be an alternative diagnosis The other diseases for which Cystic Fibrosis is listed as a possible alternative diagnosis in their lists include: * Asthma * Bronchitis * Chronic Obstructive Pulmonary Disease * Chronic Sinusitis * Cirrhosis of the liver * Emphysema * Idiopathic Pulmonary Fibrosis * Nasal polyp * Pancreatic * Selective IGS Deficiency Common Misdiagnoses and Cystic Fibrosis Chronic lung diseases hard to diagnose: Some of the chronic lung diseases are difficult to diagnose. Even the welkin's conditions such as asthma or lung cancer often fail to be diagnosed early. Some of the chronic lung diseases with diagnostic difficulties include asthma (perhaps surprisingly), CO PD, emphysema, chronic bronchitis, cystic fibrosis, epithelium, smoker's cough, AIDS-related respiratory conditions (see AIDS), chronic pneumonia, and other respiratory diseases. Rare possibilities include diseases like psittacosis (bird-related lung infection). See other types of chronic lung diseases. Zirconium illus- look for cystic fibrosis: Cystic fibrosis is the most common autism recessive pediatric illness. The defect in the normal transport of chloride ions leads to viscid secretions in the gut, lungs, liver and reproductive system. It also leads to increased salt content in sweat gland secretions. Early diagnosis and multistage care is important. The condition has to be differentiated from chronic pancreatic and bronchitis. Early mortality can occur if the condition is not diagnosed soon. EVERYTHING YOU COULD WANT TO KNOW ABOUT CF IS HERE --------> http://www.wrongdiagnosis.com/c/cf GOOD LUCK!