Sixty-five roses. Please keep this discussion moving, no matter what date it is.
By ladybugmagic
@ladybugmagic (3978)
United States
November 30, 2009 7:32pm CST
I did a search using "cystic fibrosis" as the keywords, and a few discussions popped up, but in some cases, haven't been responded to in three years. That three year lull is frightening.
CF has an average lifespan of 37 years, though, depending on the severity, some patients pass on as a child or a teen.
Please respond if you are familiar with the disease, or have it or have a loved one living with it.
We can exchange tips in treatment, comfort, and extending the lifespan of a CF patient.
Please keep this thread moving, because it could motivate those who are discouraged battling it. Even if another three years goes by, I just want to make sure everyone is okay!
In addition to the basics: breathing treatment, enzymes, the vest, what tips can you contribute?
Any eastern medicine ideas?
I did some research online, and though I am opposed to animal testing, did find that lab rats infected with CF who consumed tumeric lived ten times as long as the rats with CF who did not consume tumeric.
On youtube, I saw a gentleman with CF in his early fifties with his exercise treatment plan.
Any ideas, chime in.
May peace be with those who have passed from CF and their loved ones.
1 person likes this
5 responses
@cyberfluf (4996)
• Netherlands
4 Dec 09
It's a terrible dissease, your best shot for recovering or getting quite old is to get donor lungs. I have posted this same info on other threads aswell.
There are huge waiting lists for those though, at least of which I know (I live in Holland). I lost a friend to CF when she was 17 years old, even though there are people who get a lot older like your BF. I am very happy to hear that he is still 'alive and kicking'. Unfortunatly I have no other tips, but if we all share and contribute to CF research (there are some good, honest charity organisations specifically for CF research) hopefully the average lifespan and quality of life will expand for these people and their loved ones.
I wish you and your BF love and strenght!
1 person likes this
@ladybugmagic (3978)
• United States
5 Dec 09
Thank you for posting. It really helps to hear from others.
My boyfriend has a staph infection in both lungs now, I found him where he was not able to walk, but we got him a bed in a cf center. They are pumping him full of intravaneous antibiotics, and giving him his breathing treatments.
We call it his "tune-up".
He is lucky. He is 36, and has not had a need for a donor. He was originally given 6 months to live when he was diagnosed shortly after birth. His mother fed him completely organically, and that helped him quite a bit.
He is conducting his own research while in the hospital, and looking up more healing foods, and crystal healing methods, etc. Anything non traditional and not the typical western medications.
He is sleeping so much, which is good, because he will cough all night long and rarely sleep the night through. He is attached to the oxygen tank and hopefully that is relieving the pressure on his chest.
It is hard to watch him each night, because it pains me that I can't relieve his discomfort. And I love him, and can't do much to help him, except create posts like this and try to stir some conversation.
Thank you so much, and I am sorry you lost your friend. It is a difficult illness, because, from birth, they tend to know that their lives are very limited. :-(
@ladybugmagic (3978)
• United States
6 Dec 09
We use hand sanitizer as often as possible, because of the swine flu scare, etc.
What would a fungal infection in the groin area be indicative of?
@quinnkl (1667)
• United States
1 Dec 09
I had a teacher whose son had CF. I am not familiar with the disease as I don't really know anyone who has had to deal with it. I will have to research it and find out more about it. I know that years ago I had heard there were new break throughs on how to extend life and comfort for those living with the disease. So hopefully those advancements are moving forward.
1 person likes this
@ladybugmagic (3978)
• United States
2 Dec 09
There are definitely some advancements; I hope they keep coming. I hope they come up with the cure. :-)
Do you know much about your teacher's son? Do you know how he is doing?
@ladybugmagic (3978)
• United States
3 Dec 09
I hope all is well for them. It's a difficult situation.
@GardenGerty (159754)
• United States
1 Dec 09
I have not been touched by this disease. I do know that tumeric is regarded as being very healing for many ailments, so I look for recipes that include it. I hope your discussion keeps on going, for everyone's sake.
1 person likes this
@ladybugmagic (3978)
• United States
1 Dec 09
Thank you so much for posting! Do you know exactly what other ailments tumeric is good for? I will be googling recipes all night long. :-)
@sincere4frdship (2228)
• India
4 Dec 09
I read your posting ...its always sad to listen these things here from our mylot friend's . I don't know too much about this disease ...but I am responding you keep this discussion alive ...
I hope this will carry on ...
Thanks :)
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@ladybugmagic (3978)
• United States
4 Dec 09
Thanks for posting. I am hoping some CF'ers participate, too. I want to get some attention to this post, and have patients and caretakers help encourage one another.
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@Souljasam01 (19)
• United States
30 Aug 12
This discussion hasnt recieved any attn in a long time but i figured id post anyways. So im a cf sufferer myself. I found out like 6 months ago that i had it. I only found out because i had a rapidly progressing pnumonia that hit me in a matter of only 2 days and hospitalized me for 5 days. Ive found that pulmazyme doesnt seem to have much benefit to me, but the saline that i nebulize works wonders. If im mucousy when i take it i cough a lot but it gets that mucous out and makes my chest feel loads better. Also cf medicine has made massive leaps and bounds recently and they are doing clinical trials for some meds that treat cf that results from specific gene mutations. Im not on it yet but from what ive researched its been working wonders for some people. I may be added to the clinical trial my next doctor visit and im hoping i am because even with my meds and vest the cf still gets to me sometimes, making me cough so hard i vomit. I hope you and your bf are doing well and i hope his cf has been under control. Maybe he will live long enough to find a cure or atleast a less time consuming treatment. Im really hoping for one because my least favorite thing about cf is the amount of time taken up by doin my meds.
@ladybugmagic (3978)
• United States
9 Sep 12
Thank you for posting! I am glad to hear you are getting better. Sometimes people find out later in their adult life that they have a strain of cf. My bf found out six months after he was born. He is 39 now, and each day is a blessing, but also a lot of hard work.
A cashier at a market I go to recommends this site, in which people with certain ailments advise what remedies work for them.
http://www.earthclinic.com/CURES/cystic_fibrosis.html
(It lists more than just cf).
My bf hates the time the treatments take, but found a way to manage. That is when he does his work on the computer. He is plugged in with his vest on, uses his mouse in one hand and the nebuliser in another. But he has to do 2-4 treatments a day, ranging from 1/2 hr to 1 hr at a time.
Dairy is the worst phlegm creator for him, so he avoids it as best he can. One of the best things that works for him is our rebounder (mini trampoline). He will do a 15 minute session just bouncing and then go into a monster coughing fit. I say it is better coming out, then solidifying in his lungs.
He tends to get staph, and already has the Pseudomonas fungus. As with any infection, if you stop feeding the fungus, virus, yeast, bacteria, etc. it will die off and won't congregate.
So, he makes a green juice with all sorts of greens: cilanto, parsley, and arugula, lemon, ginger, apple, cucumber, celery, and habanero pepper. The juice is anti-yeast, anti-mucous, anti-viral, anti-bacterial, anti-parasitic, anti-fat, and anti-fungal.
I put a link to the recipe. We follow a lot of raw foodists, and this is Dan McDonald teaching Lou Corona's recipe.
http://youtu.be/Ha2m-xxjbwg
Please post regular updates. :-)
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