Cystic Fibrosis

[Pepsi]

Does anyone know someone who has Cystic Fibrosis? I don't know that much about it. how do people live with it? what kind of medicine do they take? I will google it later. I just want to find out all I can about it.

 

[Miss-Delectable]

One of my old taxi driver's son had it. It's a genetic condition. The lungs become full of mucus making hard to breathe.

One way to manage the CF better is to have a heart and lungs transplant, but it's not common due to the shortage of available donors.

Unfortunately, they usually die before age 30.

 

[VamPyroX]

I don't know much about it.

All I know is that it's related to problems in the lungs that leads to poor growth. It often appears in infants and cause those to live up to 20 or 30 years of age.

I remember getting something in the mail from a charity organization working with Cystic Fibrosis. They were asking if we could "Buy Sixty-Five Roses" and the meaning behing sixty-five roses was that kids have a hard time pronouncing "cystic fibrosis" and find it easier to say "sixty-five roses".

 

[Jolie77]

I don't really know much about Cystic Fibrosis either but I do remember I watched a miniseries movie on TV a long time ago. It sort of gave me the insight of what Cystic Fibrosis is like. The movie title is Alex: The Life of a Child.

It might help you get the idea of how a child deals with Cystic Fibrosis. This movie is based on true events. Check it out if you would like to - Alex: The Life of a Child Synopsis and Summary - Moviefone

I'd recommend for anyone to watch this movie. It's a tearjerker.

 

[LakeTahoe]

I remembered that movie..I cried when her mom said it is OK to go 'home' then she died.

I would want to watch it again...I don't remember much and it has been so long since I saw it.

I don't really know much about Cystic Fibrosis either but I do remember I watched a miniseries movie on TV a long time ago. It sort of gave me the insight of what Cystic Fibrosis is like. The movie title is Alex: The Life of a Child.

It might help you get the idea of how a child deals with Cystic Fibrosis. This movie is based on true events. Check it out if you would like to - Alex: The Life of a Child Synopsis and Summary - Moviefone

I'd recommend for anyone to watch this movie. It's a tearjerker.

 

[Aleser]

To try to sum it up, CF is a recessive (both parents are asymptomatic carriers) genetic condition that results in thickened bodily secretions, which causes the lungs to harbor bacteria and makes breathing difficult, as well as causing extreme digestive difficulty from pancreatic enzyme insufficiency and infertility in almost all patients.

People born with CF 30 years ago might live to be 38 or so years old. The survival rate goes up every year, so someone RECENTLY born with CF will live quite a lot longer.

Heart/lung transplants are not common with cystic fibrosis- lung transplants ARE, but they are a choice to be made when you're already nearing end-of-life, because survival with a transplant is extremely short- 5 year survival is decent on first transplant, fairly non existent on second, and the rates go down every year, factors being against you if you're one of the (many) people with CF that have infections like pa or b. cepacia.

Managing CF involves many things. One of the important ones is chest physiotherapy, or the use of some movement to encourage the thickened secretions to be moved and coughed up. This used to be done by manually 'pounding' on a person's chest and back, but now, we have a vest-like device that automatically does this, as well as a whole host of other airway clearance devices. Other aspects include managing infections, which includes antibiotics, nebulized medication, and somewhat frequent hospital visit. One 'newer' treatment in the world of CF is the use of nebulized hypertonic saline for the improvement of lung function.. Maintaining weight is a challenge with CF, so patients with CF follow a pretty high calorie diet (in the range of 3000-5000 calories) and consume enzyme pills like 'creon' with every meal. For some people with CF, that's not enough, and they might also use an NG tube and get enteral formula while they're asleep.

 

[Pepsi]

Thanks everyone for your post,I hope a cure can be found.

 

[hohDougRN]

To try to sum it up, CF is a recessive (both parents are asymptomatic carriers) genetic condition that results in thickened bodily secretions, which causes the lungs to harbor bacteria and makes breathing difficult, as well as causing extreme digestive difficulty from pancreatic enzyme insufficiency and infertility in almost all patients.

People born with CF 30 years ago might live to be 38 or so years old. The survival rate goes up every year, so someone RECENTLY born with CF will live quite a lot longer.

Heart/lung transplants are not common with cystic fibrosis- lung transplants ARE, but they are a choice to be made when you're already nearing end-of-life, because survival with a transplant is extremely short- 5 year survival is decent on first transplant, fairly non existent on second, and the rates go down every year, factors being against you if you're one of the (many) people with CF that have infections like pa or b. cepacia.

Managing CF involves many things. One of the important ones is chest physiotherapy, or the use of some movement to encourage the thickened secretions to be moved and coughed up. This used to be done by manually 'pounding' on a person's chest and back, but now, we have a vest-like device that automatically does this, as well as a whole host of other airway clearance devices. Other aspects include managing infections, which includes antibiotics, nebulized medication, and somewhat frequent hospital visit. One 'newer' treatment in the world of CF is the use of nebulized hypertonic saline for the improvement of lung function.. Maintaining weight is a challenge with CF, so patients with CF follow a pretty high calorie diet (in the range of 3000-5000 calories) and consume enzyme pills like 'creon' with every meal. For some people with CF, that's not enough, and they might also use an NG tube and get enteral formula while they're asleep.

It is an autosomal recessive disease

NG tubes are very temporary things....they will often have a Miller Frederick tube or Dobhoff tube placed for more longer term nutritional supplement or replacement therapy.

I am just clarify...not try to be mean or show up your statement Aleser....you are very correct on your post and we appreciate that

 

[Aleser]

It is an autosomal recessive disease

NG tubes are very temporary things....they will often have a Miller Frederick tube or Dobhoff tube placed for more longer term nutritional supplement or replacement therapy.

I am just clarify...not try to be mean or show up your statement Aleser....you are very correct on your post and we appreciate that

Not to 'show up' your corrections, but a Dobhoff tube IS an NG tube. And short term access IS the standard for patients with cystic fibrosis- I've never met one single patient using a different enteral option, without some secondary condition.

Also, you needlessly elaborated on my 'recessive'- I explained the idea to the original poster, there's no reason to use the most complicated sounding words possible.

 

[hohDougRN]

I will not argue and I appologize for upsetting you. Dobhoff tube is NG tube, although the end has radio opaque that has to be verified placement in x ray. A "standard NG tube" as is labled by all healthcare professionals is much larger diameter than a dobhoff tube and used to remove gastric contents, decompress GI track, administer meds, prevent aspiration of stomach contents during surgery and altered mental status'

 

[RedFox]

I have an aunt with CF. She once showed me a device to help her deal with the excess mucus in the lungs. I think it works by vibration. She also got into the news by having a son.

I also knew someone a little younger than me who died of CF a few years ago. He got a infection so the health insurance was getting slow and refused him transplants. Yet he continued to find ways to be happy with his girlfriend to the end. If you look at my Facebook page, you'll see him as the only person in my list of heroes.