what's it like living with cystic fibrosis?

latrena · Silver Member Joined: 09 Jan 2007 Posts: 349

I need to hear what's it like living with cystic fibrosis? It happened that both my husband and I are cystic fibrosis carriers and I was explained that it is inherited so our baby one day could easily get the cystic fibrosis? I know my mother had it and died of it at the age of 38 but I don't remember no symptoms or complications so am now wondering what's it like living with cystic fibrosis for we are planning on having a baby soon?

cheri · Veteran Joined: 24 Aug 2005 Posts: 550

Hi there! I am also cystic fibrosis carrier and I have a baby that is healthy but my husband is negative on this. so if my husband were positive on cystic fibrosis I would have never decided to have a baby-at least not on the natural way for trust me it is very hard living with cystic fibrosis-I don't think you would like watching your baby struggling with short of breathes and she would be probably having digestive problems accompanied with stomach hurts as well as greasy stools and not to mention growth failure. You know both of you your husband and you are cystic fibrosis carrier so your baby has all the chances on this world to get seek of this awful disease and I don't think that people diagnosed this way could live longer than her 40s most of them pass away even earlier. Anyway I am not saying you couldn't be having a baby for there is another way for you to get pregnant and still have a healthy baby so why don't you consider the possibility of having vitro fertilization I think that would be the best option in your case.

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Gibbs · Newbie Joined: 15 Nov 2007 Posts: 1

mtinker · Guest

both my dad and his sister have cf, his sister died 4 years ago at the age of 33. i am only 17 years old, and my father is 42, he suffers quite alot each day and because of the severity of his condition employeers will not employ him because is constantly in and out of hospital, and is always taking medication through an IV. i think the best and safest way to ensure that your baby does not suffer is to have ivf treatment, there is a very strong chance that because you are both carriers your baby will have the disease!

i wish all the best for you and your baby in the future

jessicasiddens · Newbie Joined: 05 Mar 2008 Posts: 1

Both my children have cystic fibrosis. My daughter is 12yrs old and my son is 9yrs old. My daughter was not diagnosed until she was 18months old and my son was diagnosed 2 weeks after birth. He was tested soon as he was born since my daughter has CF.
Their daily routin is this.
Nebulizer twice a day but with different medicines so it takes them up to an hour or so to get this done. They take Albuterol and Saline mix, after that, Pulmozyme and then TOBI if it is an ON month( tobi is taken every other month) Then at night they do albuterol/saline mix, then pulmicort and TOBI if it is an ON month. When they are sick with a cough, the albuterol/saline mix is given more often through out the day and night to help break up the muccus and get it out of their system.
Along with this they do the VEST therapy, which is a strapped on vest plugged into a machine that makes the vest shakes which in return breaks up the muccus in their lungs. They do this while taking the nebulizer.

For every meal they have to take ENZYME pills, their pancreas does not produce enzymes, so these pills are vital to their health. Without them, their body does not break down the food properly and in return does not obsurb the food either. Which this causes greasy and foul smelling stolls and foul smelling gas. Also causes them stomache pains if they don't take these pills.

They also take ADEK vitamins. CF kids do not produce the vitamins A,D,E, and K.

They take prevacid for heartburn but it also helps in breaking down their enzyme pills better to obsorb their food.

My son has CF with Liver disease, so he takes URSODIAL for that.

They also have allergies, so they take nasonex and claritin.

Mon, Wed and Friday, they take an antibiotic called Azithromycin. It helps with keeping them from getting colds, bronchitis and pneumonia so often.

CF children will EAT YOU OUT OF THE KITCHEN. This I was told the 1st day the doctors explained to me what CF was. Since the enzymes don't obsorb everything they eat, they are constantly hungry, as it is as a regular kid they already eat alot, a CF kid is worse lol.

CF kids immune system is lower than the regular kid, so they get sick easily. They have a very salty sweat, so they need extra salt in their food, which also means they need to drink more water, especially in the summer. Some cf kids suffer from short of breathe but so far my kids lung functions are fantastic.

We have air purifiers around the house. Having mold in your home also causes them to get sick. Even when they don't have a cold/sick, they cough every now and then and that is good cuz it helps them break up the m uccus and take it out of their lungs.
As long as your kids are well fed, take their medication and just taken care of in general, a CF child looks just like any other kid, well mine do atleast. People tell me they look so good, they can't believe they have a disease. Not sure exactly what they are expecting my kids to look like cuz they have a disease. CF can come in 3 stages, mild, moderate and severe. Those that have moderate and severe CF have the more problems and spend more time in the hospital. Some die very young cuz of it. Seems my kids have a mild case of CF. IN their 9 to 12yrs that they have lived, they have been hospitalised each 4 times.
Cf kids may also have stomache problems. My daughter if she eats too much for her pills or has real greasy food, her stomache hurts and has greasy stools. You have to watch out for their stools, that they are not greasy or that they don't have more than 3 bowel movements a day. Greasy means they are not obsorbing their food and the more bowel movements mean they did not have enough enzymes for their body to digest it all. So ya gotta watch how much they eat. Without the pills, their good goes in the mouth and out the other end just as fast as they ate it. Before my daughter was diagnosed, she was malnutrioned, so she did not grow properly. When she was a year old, she looked like a 6month old. Soon as s he was diagnosed, she grew so quick, I could not believe it!
My kids are a blessing with or without a disease. THey are my heroes cuz they have to deal with this day in and day out. Eventually CF kids will require a lung transplant as well. That really scares me! Now they are saying that lung transplant does not prolong their life by much. Also CF kids can not be around SMOKE! I was told that basically that CF kids have the lungs of a smoker. So 2nd hand smoke is extremely bad for them. Both your partner and yourself have to carry the gene to reproduce a CF child. I was told that if I were to have 6 kids, only 1 kid would not have CF. So you may or may not have a CF baby. Once you get the routine down, it's all good from there.
Children are a blessing and if you really want kids, don't let this hold you back. Medicine is working better these days and before you know it, the round about age of 35-40 life expectancy for a CF child could be prolonged. Smile

sciguy · Newbie Joined: 09 May 2008 Posts: 1

[b] I am doing a project in my class on Cystic Fibrosis and i was wondering if you coud visit our site and post some coments. I would greatly appreciate it if you did.

http://cyfibro.wikispaces.com/

what's it like living with cystic fibrosis?

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