Question to all

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ron72180

New member
Hello,
I am a college student in Westchester, NY. I am taking a health studies course and my project is on CF. Now I have found a great deal of information regarding the illness throgh the site already, but I may need some more, somewhat personal information. For one I actually have a cousin who is 3 years old and has the illness. I was able to get a great deal of info from my family regarding his case, but Im sure everyone else's case is different. Some of the questions I have are:
~What are some of the treatments that you or the person in your life with CF currently taking
~What are some of the things that you and your families have had to plan for in the future. Like what practical tasks do you now think about
~Also, in your areas, are there any community services or anything of that nature that are available to you to help

If this seems odd to some then I am sorry, but I am very serious. As stated I have interviewed a family member with it, but I know different people have different situations. Any help would be truly great. Thank you so much for your time and co-operation.

Ron
 
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julie

New member
I love specific questions! first off, welcome ron...... second, I am the wife of a CFer so I will answer your questions based on my experiences. my husband does not frequent this site.

-What are some of the treatments that you or the person in your life with CF currently taking MY HUSBAND DOES 20 MINUTES OF CHEST PT IN THE MORNING WITH THE VEST (WWW.THEVEST.COM) AND 20 MINUTES AT NIGHT. STARTING OCTOBER OF 2004 HE STARTED USING TOBI (NEBULIZED TOBRAMYACIN) EVERY OTHER MONTH. PRIOR TO THAT, HE HAD USED TOBI ABOUT 4 TIMES IN THE PAST 8 OR 9 YEARS. ON OCCASION, WHEN HE IS FEELING REALLY CONGESTED WE WILL DO MANUAL CHEST PT BUT HE REALLY HATES IT SO WE/HE TRIES TO STAY AWAY FROM IT. TWICE IN THE PAST YEAR HE HAS USED NEBULIZED COLISTIN (COLY-MYCIN PARENTERAL). HE GOES TO THE GYM AND LIFTS WEIGHTS A MINIMUM OF 3 TIMES A WEEK, HIS GOAL IS TO GO EVERYDAY BUT THAT DOESN'T ALWAYS HAPPEN.


~What are some of the things that you and your families have had to plan for in the future. Like what practical tasks do you now think about : NOT QUITE SURE EXACTLY WHAT YOU MEAN BY THIS ONE BUT I'LL GIVE IT A SHOT.... WE'VE MADE SURE THAT EACH OF US HAS ADEQUATE LIFE INSURANCE, I HAVE 500K ON MYSELF (AND HOPEFULLY CAN AFFORD MORE NEXT YEAR) AND 250K ON HIM. WE'VE HAD TO PLAN FOR INFERTILITY TREATMENT IN ORDER TO HAVE CHILDREN, WHICH IS SOMETHING WE BOTH WANT BUT HE DIDN'T THINK (WHEN HE WAS GROWING UP) THAT HE WOULD EVER GET MARRIED, LET ALONE HAVE CHILDREN.


~Also, in your areas, are there any community services or anything of that nature that are available to you to help IN THE STATE OF CALIFORNIA THERE IS THE GENETICALLY HANDICAPPED PERSONS PROGRAM (GHPP) THAT ASSISTS THOSE OVER 21 WITH MEDICAL TREATMENTS. IF YOU HAVE A PRIVATE INSURANCE THAT DOESN'T COVER SOMETHING AND/OR YOU MAKE TOO MUCH TO QUALIFY FOR MEDICAID, YOU PAY A SHARE OF COST ON A SLIDING SCALE BASED ON YOUR INCOME-YOUR OUT OF POCKET MEDICAL EXPENSES AND THEN THEY PAY THE BILL IF YOU USE AN AUTHORIZED DOCTOR OR A PHARMACY THAT BILLS MEDICARE AND HAS THE ABILITY TO "PAPER BILL" AS GHPP IS NOT ONLINE YET. OTHER THAN THAT, THERE REALLY ISN'T MUCH.

THERE ISN'T MUCH KNOWLEDGE ABOUT CF, THERE ISN'T MUCH COMMUNITY SUPPORT FOR THE WALKS AND FUNDRAISERS.
MANY PEOPLE ARE UNDER THE IMPRESSION THAT CF IS A CHILDHOOD DISEASE AND TH IS USE TO BE THE TRUTH. THE FACT IS THAT NOW, MORE THAN 40% OF THOSE LIVING WITH CF ARE ADULTS. THAT WASN'T THE CASE ABOUT 10 YEARS AGO. THE GENERAL PUBLIC HASN'T CAUGHT UP WITH THE KNOWLEDGE OF THIS DISEASE AS MEDICINE PROGRESSES AND PROLONGS LIFE OF THOSE LIVING WITH CF.

Hope this helps, good luck and let us know how your studies go!!!
 
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wallflower

New member
Hi Ron,

I am 33, and was diagnosed at 2 years old. my cf has not to this point limited my everyday life, in that I can still work full time, breathe easily, and do not have frequent hospital/iv visits. I go to the cf clinic in Minneapolis, MN.

My treatments are:
Preventative nebulizer 2x day of: albuterol, mucomyst and chromolyn sodium (taken since a child).
Chest therapy (Vest) 2x day with above neb - lasts 30 minutes. Sometimes I will do the vest alone more often if I remember.
Antibotic nebulizer 2x day of Amikacin to treat microbacteria infection (have been on for five years, probably will always be on).
I do the above in the morning before work, and when I get home.
Oral meds: Pancrease with every meal (3-4 capsules), Zithromax 1x day (antibotic), Vitamin K 1x day (to help clotting), ADEK 1x day (chewable mutivitamin), Womens One A Day multivitamin and Vitamin D/Calcium pill when I remember (about every other day).

Future planning:
Not sure. I guess mostly making sure my insurance is ok. I can not get insurance through work because of pre-existing condition, so I get state aid (which is always a roller-coaster ride). Right now I am trying to find an insurance plan that will cover my needs, and not penalize me for getting married or having too much income/assets.

cf help:
Not that I'm aware of. To be eligable for the programs that would help the most, you need to be labled disabled by Social Security. Otherwise, you rely on state aid - which often means you must live at poverty level.
There is very little knowledge about cf, although one of our radio stations in the twin cities (KDWB 101.3) does support a lot of cf fundraisers.
 
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Emily65Roses

New member
Hi Ron! Thanks for asking specific questions. We really appreciate that here.
Treatments: I am taking Pulmozyme (nebulized med), Albuterol, Advair, Nasacort, Zithromax, AZO Yeast, Acidophilus, Wellbutrin XL, Seroquel, Nexium, ADEKs, Ultrase MT 18s, and my boyfriend beats my back for a half an hour every night, in several different positions. I also flush my port once a month to make sure it doesn't clot, and go on IVs about twice a year. I go to clinic for my appointments every few months (usually 2-4).

Future: This is a tough one. I do the best I can, but I haven't done much yet. I have a savings account, and every month I put $200 into it. Just for safety, and to have it there in case I need it for whatever. I don't have life insurance because my parents couldn't find any that didn't cost an arm and a leg. I just do my meds and treatments to the best of my ability, to make sure I stay in the best health possible as long as I can.

Community services: Not quite sure what kind of help you're asking about here. Like support groups? Not really, because of the risk of cross-contamination with lung bacteria. My best "communities" are here online. This CF forum, CF groups on myspace, and my CF comunity on Livejournal. If I didn't answer correctly, specify what you meant, and I'll try again.

Also feel free to contact me personally. I'd love to help if you need it. AIM: Emily65Roses. Email: Emily65Roses@yahoo.com <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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WinAce

New member
Hi.

<blockquote>Quote
<hr>~What are some of the treatments that you... [are] currently taking<hr></blockquote>

* Hypertonic saline (10%)/albuterol, nebulized
* Pulmozyme, nebulized
* Flovent, via "puff" inhaler
* Zithromax, for its anti-inflammatory (not antibiotic) effect
* Vitamins, calcium
* Fosamax for bone density
* Nexium to prevent ulcers
* Lantus and Novolog insulins for diabetes
* "Rush Limbaugh juice" (oxycodone) for surgery-related pain

Vest, flutter or chest physiotherapy for murderous-crap-clearance.

<blockquote>Quote
<hr>~What are some of the things that you and your families have had to plan for in the future. Like what practical tasks do you now think about<hr></blockquote>

Getting $400,000 for a lung transplant (<a href="<a target=new class=ftalternatingbarlinklarge href="http://www.save-allan.org">see">http://www.save-allan.org">see</a> Save-Allan.org</a>) is the big one.

<blockquote>Quote
<hr>~Also, in your areas, are there any community services or anything of that nature that are available to you to help<hr></blockquote>

Community, no, but there's a North Carolina state health program called the Children's Special Health Services which covers CF-related stuff not paid for with other insurance (there's an adult equivalent, too).
 
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ron72180

New member
Thank you all very very VERY much. I have everything copied down. I truly appreciate your willingness to help. Not only for the terms of the project, but also for my personal knowledge. Thanks again!
 
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ron72180

New member
Hey everyone....just wanted to thank you all so much again for your help. I presented the project tonight and it was a major success. It's amazing how many people have never heard about CF. A lot of people asked many questions that, thanks to you all, I was able to answer with ease. Thank you so much again
 
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