1 CF'er dies every day, usually in their 20's

it’s not a rip off charity, the Cystic Fibrosis Foundation. 90 cents of every dollar goes to research.

Though, there’s been advances, oral meds, there still is no cure.

Cf affects every organ in the body.

the CF’er typically has to take 6 pills, enzymes, with every meal to digest food.

They have to do vest treatments on their lungs twice a day for 30 minutes. many have to do pulmyzyme inhaled preventative. The voice is rough, the cough is huge.

Most have frequent psuedamonas or B-cepacia bacteria unique to the illness, treated with nebulizer treatments twice a day plus oral antibiotics.

Most also have frequent hospital stays, and are put on IV antibiotics.

Many are put on oxygen in later stages.

thanks for reading.


how is your son daze?

How is your daughter Daze?

There will be permanent somatic cell gene therapy for CF one day. Let’s hope.

I don’t know, gene therapy has been tried, and it failed.

I forgot to mention, very high doses of ibuprofen every day, as an anti-flammatory. And also, many get lung transplants, and are forced to raise half the money on their own.

@Loke my daughter is doing well, and no major decline in health since having my grandson, a perfectly healthy boy. unbelievable.
Even after having him, she’s still a size 0. Weight has always been a problem. when she was carrying him, it was all baby. good size too. She’s able to be a stay at home mom. He turned 1 year old last month. The only major concern is her liver which she has taken medication for all her life. I was told by one doctor, a long time ago that she’ll need a liver transplant one day.


I did not know much about CF. This sounds like an awful illness.

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Is something wrong with your son? I thought he was ok

I can’t remember if I told you, umm, he had to go thru major surgery to replace the shunt in his head, it was malfunctioning we found out by his eyes. 17 staples in his head, and 20 in his abdomen.
He came out well, he’s very strong. he sleeps a lot now. thanks for asking.


sorry to hear that daze, glad he pulled through though, i’ll say a little prayer for him if that’s ok x

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it’s so hard for this population, no social activities, well, like all of us, we’re all stuck inside. We used to be doing something every day.
can’t wait to go out and have fun again.
thanks for prayer.


why dont you do some hula hooping with ish? :slight_smile:

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I think we got one buried under boxes in the garage, it might be bent. ha.

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have you got any plans after lockdown?

@Daze I was watching the program “In Good Shape” on Deutsche Welle (DW) on my local public TV station and they had an interesting segment about a new medication for CF.

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Mrs. JayMan and I looked into lung transplants. It is a rough way to go.


well, don’t want to get presumptuous. I’m good at finding free events, libraries, colleges, cultural stuff, readings, galleries, etc. that’s what I hope to go back to. what bout you?


idk things have changed so much, i would like to do more cafe work and a nice walk, i have some nice walks nearby its just getting in the mood, just hope i dont get overwhelmed again.

hmm, I have never heard that term to describe CF before, nor the medication. I’ll look it, though, thanks.


thanks everyone for kind words. I’m checking out for the day.
Going to kitchen to pace, then be with Phil, and maybe watch Jeopardy on Netflix before the game.
See ya tomorrow.


My cousin died of CF

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