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 id**t.
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 id**t 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.
I am wondering if this might be a late onset Cystic Fibrosis, I am 15.
If I ever notice something new, I immediately research CF to see if it could be involved.
However, I'm very interested in the post, posted by the person, below my post, part of which is follows:
I was diagnosed when my daughter had one of the genes picked up in blood test they do here. When I did some research on the on the UN web site, It looked like some of the same things that happened to me in my childhood. I went to the doctor and asked for a blood test and there it was. That was a bout three years ago. A couple of cases of pneumonia, some digestive issues, and some depression and some dementia here I am.
Number one, I've since been diagnosed with major depression and PTSD, in addition to the CF and pancreatitis. The main reason I'm on this board at 3:38 a.m. Eastern time, though, is because I seriously believe there is something wrong with my brain, and the person mentioned dementia. I am doing STOOOOOOOOOPID things lately (stupider than usual) that I am wondering if I am developing dementia, and I wanted to research that on the web. Google led me back here, as it did before.
An example of humorous stupidity: I don't keep toilet paper in the bathroom because there are three cats down here (not mine) who get in there daily and rip it to shreds. So every time I need to use the bathroom, I bring a roll in with me.
The other day, I had to use the bathroom, apparently picked up the STAPLER and brought it in the bathroom with me, just sat there looking at it for a few minutes, and then suddenly realized what I had done. (I'm planning to make a list to show to my doc the next time I see him. That was only one example of many, and quite frankly, the only one I can remember right now.)
I hope this person reads this post and can tell me if her dementia has been medically associated with CF or whether it's an unrelated, additional disease that he/she is suffering from.
I have applied for Social Security disability benefits, but my application was denied, my request for reconsideration was denied, and I'm now awaiting a hearing, which my lawyer believes should be coming up in the next couple of months.
I called him the other day, and before I had a chance to say anything, he started yelling at me (I get quite enough of that at home, unfortunately). He said he looks at my medical records, and there's not one doubt in his mind that I'm disabled and can't work, but he looks at my last year's earnings (a big whooping $9,383) and wonders how he can reconcile those two. He said it makes me look like someone who pushes and pushes and then just collapses. I told him that's pretty much true, but the REAL reason I was calling him was to tell him that I had quit my job. My brain cannot concentration on what I'm doing. (Another example: I'm applying to the Housing Authority to find a place to live. I was eamiling them the other day and when trying to type "Housing Authority," it came out "Housing Elephant.") I am frequently making typos and almost feel as if I've forgotten how to type, after 40 years of doing it. As it was, ;I was making so little at my job (paid on production) that I qualified for what is called the AND program. Whatever I earn, they will add money to it to TOTAL $200 per month. So I was earning less than $200, anyway. The main reason was I didn't want to compremise my work as an MT because I can spell check all I want, but "Housing Elephant" is always going to come up as being okay.
Anyway, I hope the poster sees this and can respond regarding whether the dementia is associated directly with CF. If anyone else knows, I'ad aoppreciate their input, as well.
Thanks in advance.
I then went back to try to vote on the post (dated 1/24/09) directly below my original (dated 8/4/07) because I found it tremendously helpful, especially the part about dementia. I again received a screen saying I'm not allowed to vote for myself. The person I was trying to vote for was NOT MYSELF!
I have a cousin who was diagnosed with CF shortly after birth. I had never heard of people being diagnosed with CF as adults or CF appearing in adulthood.
It could explain a lot of health issues in my family.
Thank you so much for posting.
The last couple of years my allergies have gone haywire (Omnaris has worked very well for me) and I have developed chronic sinusitis. I wake up at night having coughing fits, but I find that my rescue inhaler helps. I had surgery almost exactly a year ago to remove nasal polyps and have recently developed digestive problems. I will need to see my doctor and get tested as I always felt there was more to my not feeling well and breathing problems than COPD. The only reason I was tested for COPD was due to my insistance that I get a lung exray. Fortunately my doctor usually complies with my requests and is down to earth enough to realize that I know my health better than anyone.
Wish me luck - I'll post my results when I know more.
When I was 16/17 I came down with a bronchial infection. after I recovered from this, I had a breathing episode during an extreme adventure race. I was told then that the infection caused me to have asthma. I was told to avoid certain triggers. the odd thing is...these so called triggers didn't bother me on a day to day basis. If I came down with something, like a cold or flu, it became very hard to breathe.Thats the only times the triggers bother me.
Ive spent most of my asthmatic life being blamed by doctors for my symptoms, basically called a liar for not telling them what caused an attack.I actually started blaming myself...its ruined relationships....
Iv also had various mental issues that seem to come and go...maybe they can be explained too... I forget what I'm doing in the middle of doing it.I forget why I went to the store...and I'm only 26! I have had anxiety issues and have problems sleeping.
since 17 yrs old ive had repeated asthmatic issues, admitted once to icu..and they always blame me...
Ive since corrected everything I could that might cause an issue, but these "asthmatic bouts" are getting worse and more frequent...it scares me.
when I get sick I lose weight, which as I understand, is a symptom of cf. but I gain weight really easily when im not being bothered by my lungs.Can CF act like this?
Ive mentioned to doctors that i think there may be something else causing my breathing problems, something new, but they keep brushing me off.
I am at my wits end...
desperate to get better
Have you been tested (properly, with a Western Blot) for Lyme Disease? The cognitive issues that Guest and Marmann describe fit the bill for Lyme Disease perfectly. As do the CF symptoms. Any other symptoms you've got floating around that you might dismiss as "nothing" or haven't been able to get a diagnosis for because all your lab tests are "normal"? Chalk it up to Lyme Disease. Lyme mimics other diseases and infections, which leaves doctors and patients stumped, exhausted, and clueless about what the hell is wrong with them after getting normal blood tests back. You don't have to remember a tick bite to have Lyme Disease. You don't have to live in a certain area to get Lyme Disease. It is more prevalent than it was once thought to be.
As a result of having undiagnosed Lyme Disease for 5 years, I now have (and didn't have any of this until recently) severe asthma (with all those great, grand, wonderful CF type symptoms that make you think you're going to choke and die!), Narcolepsy (sleep all day, pay $3000 a month for medicine that only helps somewhat), major cognitive functioning defecits which make me feel like I have learning disorders or even mental retardation, it gets that bad - hard to function on my own (used to be pretty intelligent and had the ability to learn and pick up skills quickly), and gluten intolerance (can't eat wheat, barley, malt, oat, rye, and the like). Three problems that cannot be reversed, all due to Lyme Disease.
Do yourself a favor. Find an LLMD (Lyme Literate Doctor) - I'd be happy to help, just ask - and get yourself tested for Lyme Disease. The sooner, the better, so you don't end up like me - or worse. Some people are disabled and in wheelchairs from Lyme. Everyday, more and more people are being their own advocates (step 1: get the hell away from traditional MDs... raise your hand if you were ignored or flat out told you were wrong or were laughed at/scoffed at/dismissed for suggesting what might be wrong with you. Raise your hand if the MD always knows best and your opinion or input, because you are not a doctor, really makes no difference.), doing their research to find a doctor who will listen and test them, and finally getting diagnosed and treated.
Don't let yourself suffer because you aren't a medical professional. You know your body and you know when something is wrong. Go see a doctor who will listen. LLMDs are passionate about diagnosing and treating Lyme Disease. If it's not Lyme Disease, get yourself to a doctor who will do genetic testing for CF - ask in advance if this is possible before you even make your appointment! Doctors piss me off! For 5 years "nothing" was wrong with me despite how much was CLEARLY wrong with me... don't settle for "you're fine". See another doctor. Get yourself healed.