Re: Could I have CF? Does pre-authorization cover you for a seri...

[Guest guest]

I had my Dr. - regular family Dr. request a blood test on me. Since I knew

my kids mutations it made it easier and of course, came back that I am a

carrier and nothing more. It would be a great idea for you to get tested

Paige. Although, I am sure people will tell you have just being a carrier

sometimes gives you symptoms of CF......

Rosemary in New York with 3 children with CF - they are 12, 9.11, 6...I

coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you

ready for this - TOBI after their medication!

[Guest guest]

Paige,

I am not sure what state you live in. But I would recommend you call your

State Dept of Health and see if they have any programs for those with CF to

help with cost of medical expenses.

Yes, you can be diagnosed with CF later in life. People in their 50's are

diagnosed. I don't know where it is cheap to get it. Try the CF website too.

http://www.cff.orghttp://www.cff.org

Good luck

joanne

>

>

>

> Dear Group,

>

> I've posted fairly infrequently since my son (now 19 months old with CF)

> was

> diagnosed, so I am humbly asking for your ANY and all opinions regarding my

> two questions:

>

> 1) I'm in a tough spot as my husband recently lost his job and I'm

> wondering about how to spend what's left of our yearly alotted insurance

> dollars in the next three months. My son is my primary concern, of course.

> His daily meds (at this time) run about $200/month (THANKFULLY just enzymes

> and vitamins for now). Our insurance has approved him for a second year of

> Synagis (for RSV: considering he was severely premature and has CF) and

> received one vaccination in October. If my husband's insurance changes

> (ie,

> we have to go to Cobra), can the insurance company effectively PULL the

> preauthorization on my son's Synagis (as I understand it's done

> month-to-month)?

>

> 2) I've ALWAYS been a cougher, even when well, and in the past

> ten-or-so-years, have been bothered by morning coughing in efforts to get

> the " settled " overnight junk out of my lungs. Since recovering from some

> weird bug that really whipped me (and my husband) over a month ago, I

> actually cough up " plugs " of mucous every morning. Also, I am thin because

> of my " inability " to keep anything in my system. In Junior High I was

> diagnosed with " irritable bowel syndrome " , given drugs, and then couldn't

> " go " if I had to. Twenty years later, I know the location of EVERY public

> restroom in the Tri-State-Area!!

>

> Here are my questions, that I would so ENORMOUSLY appreciate ANY responses

> to:

>

> 1) Does anyone know if my son's RSV vaccines could be halted? Once a kid

> gets pre-authorized is it per VACCINE, or per SEASON?

>

> 2) I think I could possibly have CF and not know it. Could anyone

> recommend a fairly reasonably-priced lab (in the tri-state area) that

> tests

> adults for CF? (We cannot afford Ambry)

>

>

> Thank you so much for reading my rant.... I am so VERY depressed.

> Love to All,

> Paige

>

Joanne M. Schum

Cystic Fibrosis

Bi-lateral Lung Recipient

September 12, 1997

University of North Carolina Hospitals Chapel Hill

Residence: Upstate New York

email: luckylungsforjo@...

" Taking Flight - Inspirational Stories of Lung Transplantation "

Compiled by Joanne Schum

Authored by lung recipients around the world

http://www.trafford.com/robots/02-0497.html

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