adult onset cystic fibrosis

sonnie · Newbie Joined: 11 Jan 2005 Posts: 3

I would like to know a thing or two about adult onset cystic fibrosis. I know that it usually emerges in very young children, babies also. But is it possible that cystic fibrosis can affect an adult? I ask this because I had this question on my last year exam, I passed it but I did not know the answer on this question.

marlow · Newbie Joined: 11 May 2005 Posts: 2

Cystic fibrosis is a genetic based disease that shows its effects in early stage of life, so children suffering from this illness immediately show symptoms. There are several cases when this disease was found in grown ups, but how or why, doctors have yet to determine. All we know, that no matter what age the patient is, he suffers a lot and cannot lead a normal life.

mtinker · Guest

my father has had cf all his life, how ever the doctors did not discover he had this disease until he was 33

Marmann · Newbie Joined: 31 Dec 2007 Posts: 1

At 54 years of age, I was just diagnosed with cystic fibrosis in early October of 2007.

For me, it began back on February 1 of 2006 (I know this date because I was supposed to begin a new job on that day!). I awoke in the middle of the night, not feeling well and figued with my luck, I was probably getting a stomach virus or something on my first day of work. I was fortunate enough to work from home. When I sat down at the computer to work, I just couldn't. I called my supervisor, explained the situation and told her I just needed to go back to bed but would defintely be working later.

When "later" came, I called her again, said there was no way I could work and that I was actually thinking about calling an ambulance if it got any worse because at this point, I was scared.

Twenty-one hours after the onset of the pain, I did call an ambulance and wound up in the hospital for eight days, diagnosed with pancreatitis. They called it "idiopathic" but blamed it on elevated triglycerides.

My daughter came to PA to get me and move me out to Colorado to be with her. I was hospitalized two more times in 2006 for pancreatitis and, again, three more times in 2007 for same.

When I went to see the GI doc after moving out here with my daugher and after being discharged from my first hospitalization in 2006, I told her my history (which, in no way was consistent with pancreatitis). She asked me how I controlled the pain, and I told her I used hydrocodone. At that moment, the look on her face changed. She told me she didn't believe I had pancreatitis (totally ignoring all the lab studies and CT scans that PROVED I had it) but that if I truly did have pancreatitis she would have to send me to the University of Colorado, AFTER referring me to a pain specialist to "get me off" the narcotics. At that moment, I realized she was an idiot.

At my first hospitalization this year, I was admitted also with pneumonia, so that was a particuarly difficult time. They sent in a GI doc (from the same group, since they have a monopoly on the GI docs in this town), and I immediately kicked him out. I told him that I refused to pay him for misdiagnosing my condition and impugning my character.

During my second hospitalization this year (and after being yelled at by other hospital personnel for previously kicking out the doc), I agreed to let him see me. He finally admitted that my past triglycerides really needed to be 10 times the amount they were in order to truly be attributed to pancreatitis. (In fact, they were normal during this particular hospitalization.)

During this hospitalization, someone (I'm not sure who) decided to perform diagnostic DNA testing on me to see if I might have cystic fibrosis. (During all my research on pancreatitis, I had always seen cystic fibrosis as a cause, but being 54 years old, I immediately dismissed it because I assumed it only occurred in babies and young children.)

Not only was I not advised in advance of this testing, but I also was not afforded the courtesy of asking the MANY questions associated with the mere thought of such a disease. I received the "news" a month after the DNA testing was completed and the report had been sent by some pulmonologist who I don't believe I've ever met to my primary care doc. One day out of the blue, I received a four-sentence letter from my primary doc that the DNA testing I had during my hospitalization confirms I have cystic fibrosis. (Again, I never even knew I was being tested for it or that it may be suspected as a possibility for the cause of my pancreatitis.)

On the one hand, I feel very grateful that I lived to be this old. On the other hand, I'm very, VERY angry at the first GI doc who apparently labeled me as drug seeking and made it clear she would prefer to send me somewhere else. At this point, I am thinking more and more of filing a medical malpractice suit against her.

I had one more hospitalization after that time, during which I was presented with two residents who did nothing but STARE at me for the first ten minutes after their arrival. They said they found me and my CF diagnosis "interesting."

I did have health insurance that I was forced to cancel before the diagnosis of CF, simply because I, as someone who earns roughly $20,000 a year, could no longer afford to pay my "company-provided" health insurance premium that had just risen from $620 to $711 a month, particularly with all the other medical bills I had received representing what my insurance WOULD NOT pay for. Before canceling my health insurance, though, I did contact Blue Cross/Shield to see how much a policy would cost, and I was told they would refuse to insure me due to my pancreatitis because I live in a state where they are allowed to discriminate. (And this was BEFORE the diagnosis of CF, so there is obviously no way I am insurable now under any circumstances.) As I write this, I'm in the process of having my car repossessed because I can no longer pay those payments, as well.

My breathing is getting much worse, and I feel like I'm going to choke at times. My oxygen saturation was once 67% during one of my hospitalizations last year, though I honestly didn't FEEL as if I had a respiratory problem. In fact, they wanted to send me home with oxygen, which I absolutely did NOT want, telling the nurse it was only because I was in bed for so long, and I challenged her to a walk down the hall, where I KNEW it would improve, and that's when the reading went down to 67%. Ironically, during my last hospitalization this year, my need for oxygen was very low. Respiratory difficulties, from what I've read, is also one of the things caused by pancreatitis, so I had always just assumed my difficulties were from that. (This was well before the CF was diagnosed a few months ago.)

I'm trying my best to keep working. I didn't keep the job I was to start on the day my pancreatitis first appeared, but I do have another job in the same field (medical transcription), which is actually much better because I can work whenever I want.

These days, my life revolves around working and sleeping. I'm fatigued more and more every day and stay in bed a lot, trying to get the rest that my body is screaming for me to get. I've been working mostly at night, and I'm trying my best to keep up with my job. I leave the house maybe twice a month, and when I do, it's only to shop to purchase food and necessities. My daughter calls me "lazy," and it's becoming more obvious every day that I'm becoming a huge burden on her, especially if my income is lower than usual and I have trouble paying her rent.

I'm sick of doctors right now, and I refuse to be in the hospital for one more minute. I still have two Fentanyl patches given to me from the hospital, which I keep on hand for the next time I have a "hospital worthy" attack.

The hospital has been very kind to me and has accepted me into their CICP program for indigent people. I have never accepted aid from the government or anyone else, and although I appreciate it, I'm humiliated that, after a productive lifetime of working usually two jobs at a time, I'm in need of such help now.

The best I can do is try to control the excruciating pain from the pancreatitis. I need to work as hard as I can right now because I can't be such a tremendous burden on my daughter any longer and need to find a place to live.

So my way of handling things is to just continue working and try to do the best I can. I had often joked before that I'd probably be found dead someday, slumped over my computer. This is no longer a joke. I realize that I'm incredibly depressed (another side effect listed for pancreatitis), and I was prescribed paroxetine by my family doc (also through the CICP program, as were the residents who found me to be so "interesting" during my last hospital stay.) I'm about to pick up my last refill on that, so I won't have that to take any more.

As I said previously, I feel blessed to have had 54 years on this planet, having carried a disease this entire time and not knowing it, but I'm finished with doctors, and que sera, sera.

I apologize for the length and personal detail I went through in this post, but I'm grateful I found you, because the more I can find out about CF, the more I will be able to participate in my own care.

And for anyone else out there who has a series of unexplained digestive problems, as well as an idiot for a physician, please be proactive and ask if the doc plans on performing DNA testing for CF. Above all else, DEMAND that you be afforded the courtesy of asking the multitude of questions you will have. To suddenly receive an incredibly shocking four-sentence letter out of the blue, a month after the confirming DNA report was completed and forward to another physician (which is how I know the dates; I requested received a copy of the DNA report), is NOT the way a patient should be treated. However, you can't ask questions unless you're advised in advance that it's happening or suspected or even a possible etiology for pancreatitis and other unexplained digestive disease.

adult onset cystic fibrosis

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