Hello, everyone.
I'm sure many of you are much more aware medically than I am, so if you already know this, I apologize. For those of you who, like me, though, DID NOT know, cystic fibrosis can be diagnosed in an adult.
I just turned 55, and two years ago (02/01/2006), out of NOWHERE, in the middle of the night I became very ill. I chalked it up to a "stomach bug," but I became sicker and sicker during the day. Finally, 21 hours later, when my pain was simply unbearable, I began having difficulty with my breathing and I KNEW I wasn't capable of driving myself to the ER, I finally called 911, and the ambulance came.
I was immediately diagnosed with pancreatitis. The only risk factor "profile" I was able to fit into was that my triglycerides were elevated. I spent eight scary days in the hospital.
My daughter bought a one-way ticket from Colorado to Pennsylvania where I had lived all my life, and we packed up me, the pets and everything else we could fit into the van and drove back to Colorado. I've been living with her since.
Since my move out here, I've been hospitalized six more times (total of seven), again for pancreatitis.
Finally, on my sixth hospitalization, the physicians seemed to finally be taking my case seriously. Maybe it had something to do with the 6.6-cm phlegmon that was found on the head of my pancreas (which represents approximately half the size of my ENTIRE pancreas), just two months after one of their associates basically regarded me as a drug seeker, told me she didn't believe I had pancreatitis, (despite the voluminous positive record of the disease I had created by this time through my repeated hospitalizations) and dismissed me. For whatever reason, they finally began to explore the real reason for what they finally conceded was my "chronic" pancreatitis. They finally requested the records from my initial hospitalization back in PA. They came clean and said that even though my triglycerides had been previously elevated (they were normal during this hospitalization), they would have needed to have been ten times those values in order to truly be considered a cause of pancreatitis.
Without any prior opportunity to ask questions, without any "informed consent" and without the words "cystic fibrosis" ever being spoken in my presence, they decided to have diagnostic DNA testing performed on me to see if I might have cystic fibrosis. This test turned out to be positive. Out of the blue, I received these devastating results one month after the report was received by the ordering pulmonologist (who is unknown to me), by my PCP in an undated three-sentence letter. Coincidentally, according to the report, the test was ordered on September 1, the results were faxed (and mailed) to the pulmonologist on September 6, and I was discharged on September 6.
I admit to being incredibly angry at the way I have been treated in this regard, considering I was uninsured at this time, having been forced to cancel my "employer-provided" health insurance when the premium increased to literally 50% of my gross income. Before canceling my insurance, though, I did call Blue Cross/Shield, who basically laughed at me and said I wouldn't find anyone in the State of Colorado who would be willing to insure me (due to my pancreatitis) because I live in a state that is allowed to "discriminate." (Ironically, if the GI who dismissed me as a drug seeker had taken my case seriously, I might still have insurance today because, from what I have read, the Cystic Fibrosis Foundation stresses the importance of continuity of insurance and will even help with the payment of the premiums, if necessary.)
However, I'm mainly writing this post as a warning to everyone, in case they or someone they know and/or love suddenly develops GASTROINTESTINAL symptoms that can't be easily explained and become chronic. The root cause may be cystic fibrosis.
If you or anyone you know feel this could apply, please discuss it with your physician. If your physician feels CF is a possibility, BE SURE YOU HAVE HEALTH INSURANCE BEFORE THIS TESTING IS PERFORMED because once you're "officially" diagnosed, you can't put the genie back into the bottle.
I just turned 55 four days ago, and I finally have been able to save enough money to rent a car (mine was repossessed because I could no longer afford to pay the payments due to being sick and declining income) and have made an appointment with the nearest Cystic Fibrosis Clinic in Denver (approximately 80 miles away).
From everything I have read, cystic fibrosis is an always fatal disease, and my symptoms are getting worse and worse. I believe this disease is beginning to affect more GI organs because of the changes in pain and other new symptoms I have been having.
I did have some pulmonary problems throughout all this and required oxygen during each of my hospitalizations, except, ironically, the one where this "mystery" pulmonologist ordered the secret DNA test. (One time on discharge, I was ordered to have home oxygen, which I fought because I felt "fine" and chalked it up to being in bed in the hospital for 11 days. I "challenged" the nurse to a walk down the hall to prove it to her, only to discover that my pulse ox was 67%, which quickly shut me up!) However, my primary symptoms were with my pancreas.
I have come to terms with the fact that my life is probably going to end soon, and if anything, I feel guilty for complaining when I've lived to be 55 years of age and think about all the children and babies who either die of this disease before they can walk or live their lives struggling on a daily basis to fight this disease.
If I had been given a choice in the matter, I would not have permitted the testing until I could possibly find a way of obtaining health insurance from SOMEONE (maybe move to a more "insurance friendly" state or find another means of securing insurance). However, I wasn't given a choice in the matter and had no opportunity to ask questions before the testing was performed. As I said, I never heard the words "cystic fibrosis" uttered in my presence. (I found the testing laboratory's website, and contained therein is a detailed "Informed Consent for DNA Testing" form, apparently required by them. I never saw or signed this form or any other form resembling it. I required a PICC line during this particular hospitalization, and I still have the "informed consent" with each item checked off that I was informed about, and this paper contains my signature, consistent with my recollection of the events as they occurred.)
I don't want to see any other patient whose profile fits mine go through the devastation of receiving a letter out of the blue informing them they have a fatal disease.
I want patients to be able to be proactive in their care with their physicians, as I was unable to be. They KNEW I had an intense interest in participating in my own care; I requested copies of every lab test, every imaging study and every chest x-ray from my hospital bed when those results were available because I wanted to be kept fully informed of my condition.
Please "deposit" this information into your memory "bank" in case it may someday apply to you or someone you love.
CYSTIC FIBROSIS IS NOT JUST A DISEASE OF CHILDREN AND BABIES, AND IT ISN'T JUST A PULMONARY DISEASE. (In fact, the original name for cystic fibrosis was "cystic fibrosis of the pancreas.") |
