everyone has a story, here is mine:

I have Cystic Fibrosis, diagnosed at birth by Meconium Ileus (an intestinal blockage requiring surgery). Although considered healthy most of my life (with no lung involvement), I've always dealt with fatigue, digestion complications and sinus issues.

As a child it was thought I was miraculously spared the devasting effects of CF - it was believed I had a mild case of CF, and wouldn't develop the typical complications of a person with Cystic Fibrosis. Respectively, my health was taken for granted, and I wasn't taught the importance of lung maintenance.

So, when I woke up sick one January morning in 2002,
I simply thought I had the flu, and didn't feel the necessity to go the doctor. Two weeks later after no improvement, I found myself in the hospital, on I.V. antibiotics and oxygen for no less than 14 days.

Not until just recently have I come to understand that what I experienced was my first CF exacerbation, which, sadly, caused irreversible lung damage by waiting for treatment.
So much for being "healthy".

Although I tried to return to work, it proved to be too stressful, too demanding, and too exhausting.
So, that October I retired and started my "life with CF".
And here we are today....

Monday, February 18, 2008

The Cost of CF

CF is a systemic disease
It is not confined to the lungs and digestion


Systemic - of or pertaining to a system
–adjective
Physiology, Pathology:
a. pertaining to or affecting the body as a whole
b. pertaining to or affecting a particular body system

Therefore, the ramifications vary widely from patient to patient, as not all those with CF suffer the same secondary issues or to the same degree.

So, here is MY cost of CF:

  • $ 5,938.00 - monthly Rx's
  • $ 1,000.00 - each 14 day stay - room/bed only - no tests, meds, etc
  • $ 110 - 310.00 - each CF appt - just for signing in (not including labs/tests at visit) minimal of 4 visits a year, but usually more.
  • $ 355 + 380.00 - annual testings
  • $ 75.00 + $1,100 - monthly, for in-home medical equipment
  • $ 120 - 280.00 - each breathing test - minimal of 4 times a year, but usually more

These figures do not reflect all labs, xrays etc; diabetic (& eye), allergy or psychological care... all secondary components to the CF.

This of course, would be the cost, if not for insurance. Between insurances nearly everything I need and require is covered. Thank God for insurance.

What is out-of-pocket: insurance premiums, extra groceries, fuel for appts*, & pet-sitting fees during hospitalizations.

* 180 miles round trip to care center, of which I have 7 diff dr's - none of which who's schedules aid in planning for combined visits. grrr

Posted by Sally at 10:35 AM

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