Pistol Posted January 19 Report Share Posted January 19 @MaineDoug That is medical negligence, for sure! Even if the finding was incidental ( since they did not really test for it ) - any abnormal result or new diagnosis MUST be addressed in the discharge instructions, whether it is a follow-up with your PCP, a referral to a specialist or further testing. The doctor also HAS to make you aware of the result. I am furious that you were so badly treated, and that your health suffered from it. Gladly the new med may give you some improvement. Quote Link to comment Share on other sites More sharing options...
MikeO Posted January 19 Author Report Share Posted January 19 16 hours ago, MaineDoug said: HOW COULD THIS HAPPEN??? I don't have an answer how but it does. just glad you are now getting help moving forward. to be honest i have been in the same boat as to the health care system knowing i had various health issues and burying them. My diabetes was known since 2017 and the cardiologist team looked the other way. still burns me. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted January 19 Report Share Posted January 19 @Pistol, Thanks for the kind words and support, I really needed that. I am seeing rapid progress in areas as nutrition finally reaches my body and brain. This was close, I was starving to death in front of my wife while eating! This d*** disease is a lot like the curse from, local resident, Stephen King’s movie “Thinner”! Diabolical! Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted January 19 Report Share Posted January 19 @MikeO, I am so sorry! It’s criminal, To to suffer permanent consequences for simple lapses of communication? The feeling of knowing that you could have made a difference if you had only known! What if? What now? WHY! My GI doc is backtracking fast! He even referenced a previous discussion about “chronic pancreatitis”! Never happened! Not something that I or my wife would forget! And too bad that none of the documentation mentions this event which didn’t occur, and my list of conditions conspicuously lacks this diagnosis. What is included are more RED FLAG TESTS indicating Pancreatitis!!! ARE YOU KIDDING ME! DON’T LIE AND MAKE IT WORSE! Sometimes I feel like Charlie Brown, the doctors are Lucy, and the football is adequate care! 😂 Hang in there! Quote Link to comment Share on other sites More sharing options...
MikeO Posted January 20 Author Report Share Posted January 20 16 hours ago, MaineDoug said: My GI doc is backtracking fast! Glad you mentioned this. The Faint clinic i was going to has been doing this for the last year and i have called them out on it every time. i don't even feel bad for doing it. my take is if they can play ignorant or even lie and not be nice then i have no issue telling them what i really think, they are not above me. I do go into GI next month will be interesting were the visit goes. My Endo still think i have some sort of sporadic Pancreas inflammation going on. being treated for SIBO has helped so i don't think i have PI but still get occasional sudden GI pain just not very often. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted January 20 Report Share Posted January 20 4 hours ago, MikeO said: i have called them out on it every time. i don't even feel bad for doing it Good for you! We need more accountability! I was a clinician before disability. I always believed that it was my sacred duty to do my best for every patient. We certainly never hid or changed information! I can’t even conceive of such a thing. Maybe that’s why it hurts so bad when it happens to us. Make sure you do a thorough investigation of the Pancreatic inflammatory potential. IT CAN BE VERY TRICKY! I’ve read that the acute phase hurts more than chronic as the cells are dead and replaced with scar tissue by the chronic stage!!! Symptoms don’t become severe until 90% of the organ is destroyed. Don’t let them do to you what they’ve done to me! 😰 Quote Link to comment Share on other sites More sharing options...
MikeO Posted January 20 Author Report Share Posted January 20 3 hours ago, MaineDoug said: changed information! Thanks Doug! i have seen info changed a number of times. Sigh some times up front "not final till the doc reviews and then other times not till i report issues "anion gap is one that changes without notice" i do recall having a blood test at UW and the gap was elevated 12 if i recall right so the gap was changed to 8 after i reported getting sicker than a dog that same day. thanks for the tips on the acute pancreatitis. so far i trust gastro so far I and was double teamed by Docs at my first visit and they were not adverse to ordering tests. Will see where this leads. i do have my questions lined up for the next visit. sure there is more to come. I am just glad you have a path that is helping you. Mike Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted January 20 Report Share Posted January 20 @MikeO, Interesting! Any changes in the electronic medical record will show up on audit. This is a s allegation if you are right. You can request an audit of your record for changes made after the fact. Quote Link to comment Share on other sites More sharing options...
MikeO Posted January 20 Author Report Share Posted January 20 35 minutes ago, MaineDoug said: @MikeO, Interesting! Any changes in the electronic medical record will show up on audit. This is a s allegation if you are right. You can request an audit of your record for changes made after the fact. Yeah might need to to do an audit. what that gets me well not sure. money would be great...hahaha more so that it does not happen to other folks. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted January 23 Report Share Posted January 23 @MikeO, LOL! Unfortunately for my tormentors they left an incredibly damning CAT scan report along with a bevy of other missed flags, dozens of tests in the red, imaging which should have been alarming years ago. I have a meeting with a lawyer at 1 today to discuss seeking compensation to create resources for me to meet the challenges, caused by their negligence, but which I must now face. And which already keep me up at night and make my palms sweat. 🤬 Quote Link to comment Share on other sites More sharing options...
MikeO Posted January 23 Author Report Share Posted January 23 @MaineDougGood Luck with your Attorney meeting. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted January 23 Report Share Posted January 23 Hopefully Justice? That’s all I want. That and the resources to address the issues caused by their failure. ⚖️ Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted February 3 Report Share Posted February 3 Some much needed rare good news on my end! Seeing GI Tuesday for first time since my phone diagnosis of Chronic Pancreatitis/Insufficiency. (Three weeks. That’s just not okay! No guidance on diet. No assessment. No screening for Panc CA, (LOL, I can neither write nor say that complete term out loud), No prognosis. Too long to sit with the sword of Damocles over my head without knowing how thick the rope is.) But I finally got the correct labs run…and my CBC and CMP were the best they’ve been in 15 years!!! Fewer red flags than last! And best of all my liver enzymes, CRP and ESR were all very good. I also didn’t lose any weight yesterday, after unintentionally loosing 14 pounds last month. It’s not anything the docs are doing, nor luck. I am spending 6-8 hours a day on wellness. Meditation, breathing exercises, yoga, visualization, cold water immersion, the CHOP, Research, Natural cures, Chanting, Prayer, etc. My wife brags about my dedication. I’ve declared war, in a peaceful mindful manner, on inflammation. Mind healing matter. And the objective signs are indicating success! Perhaps the rope is thicker than I have feared!🙏☯️🕉️ Namaste! Quote Link to comment Share on other sites More sharing options...
MikeO Posted February 3 Author Report Share Posted February 3 Keep after what is working for you. Glad to hear your tests came back well. Quote Link to comment Share on other sites More sharing options...
MikeO Posted February 7 Author Report Share Posted February 7 Well saw Gastro yesterday and she definitely ruled PI ( @MaineDoug) etc....maybe a bit of a fatty liver which can be helped with diet and exercise (i have been doing fasted treadmill walks every morning and seems to be helping). The Doc still has concerns about the intestinal tract as i continue to have problems so......she ordered the dreaded GI tract camera procedure and wants some biopsies. More to the story coming. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted February 8 Report Share Posted February 8 @MikeO, Sorry Mike! I’m right there with you! Saw my GI doc Tuesday. Did they discuss the option of an MRCRP? I’ve read good things, good imaging, and noninvasive. Of course if they want biopsies they need to go in. My GI was reassuring, “we can manage this”, except when he wasn’t, “what do you value in life? Quantity or quality?” And “how do you feel about painful invasive procedures” and “live your life Doug, live for today” 🥺 Uh, say what? Wait a second, can we rewind to “manage this”? What’s going on? I’m confused, again. 🤬 I’ve had some good signs, digestive enzymes are better, abdominal pain gone, digesting better, solid stools; and some less so, itchy/scratchies, previous scan results. Overall life is much better and my Total Hip is still on schedule for 3/18/24. Now I’m waiting for an MRI, to check “anatomy” and scheduled for a month (too long to wait)! AND they want me NPO! Oh come on already. I thought we got this part straightened out. NO NPO! There won’t be a vein open AND my vitals would be terrible. Not doing it, nope, nada, no can do! If the docs want to play “stick the needle in the dry collapsed vein” they can use their own arm! But today is a good day, and Tuesday could have went a lot worse. So in the words of a famous man I’m “living for today”! Good luck Mike!☯️ Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 9 Report Share Posted February 9 18 hours ago, MaineDoug said: I’ve had some good signs, digestive enzymes are better, abdominal pain gone, digesting better, solid stools; and some less so, itchy/scratchies, previous scan results. Overall life is much better and my Total Hip is still on schedule for 3/18/24 Great news! Keep on trucking! Quote Link to comment Share on other sites More sharing options...
MikeO Posted February 9 Author Report Share Posted February 9 19 hours ago, MaineDoug said: Did they discuss the option of an MRCRP? I’ve read good things I am aware of the option. but like you said the doc want's biopsies so back to my regularly scheduled nightmare Lol! Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted February 9 Report Share Posted February 9 I’ll be sending you good vibes! When are you scheduled? I found POTS NPO guidelines at https://www.autonomicneuroscience.com/article/S1566-0702(18)30032-8/fulltext#:~:text=Pre-operatively%2C nil per os,medications the morning of surgery. Waiting on my GI to give feedback, approval. I will not go NPO again without IV fluids running! Quote Link to comment Share on other sites More sharing options...
MikeO Posted February 9 Author Report Share Posted February 9 53 minutes ago, MaineDoug said: When are you scheduled? at the end of the month. thanks sending good vibes i will sending vibes back atcha. last scoping i did not do well with the anesthesia that was used sure i will be in better hands this time. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted February 9 Report Share Posted February 9 My MR CRP is March 4. My Gastro saw sense and ordered the IV fluids before and during. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted February 9 Report Share Posted February 9 LOL, I just read the order. All my GI doc did was forward my message with the IV saline procedure to his nurse and said “do this”! Okay, but since I did the research and forwarded the protocol SHOULDN’T I get paid some of the professional fees? 😜 Quote Link to comment Share on other sites More sharing options...
MikeO Posted February 9 Author Report Share Posted February 9 4 hours ago, MaineDoug said: Okay, but since I did the research and forwarded the protocol SHOULDN’T I get paid some of the professional fees? Yep! Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted February 10 Report Share Posted February 10 @MikeO, How is your weight Mike? I’m down 21 pounds in 3 months. After Creon I stabilized but now I’m back to losing .5 lb/day. I’m hoping it’s “healthy” weight loss as I got pretty heavy after 15 years of prednisone, I was always around 180, but plumped up to 233. Now down to 208. I plan to get my weight down to a healthy range, AS LONG as I’m not losing it from malabsorption. Have you been referred to a dietitian? Have a great day! Quote Link to comment Share on other sites More sharing options...
MikeO Posted February 10 Author Report Share Posted February 10 1 hour ago, MaineDoug said: @MikeO, How is your weight Mike? I’m down 21 pounds in 3 months. After Creon I stabilized but now I’m back to losing .5 lb/day. I’m hoping it’s “healthy” weight loss as I got pretty heavy after 15 years of prednisone, I was always around 180, but plumped up to 233. Now down to 208. I plan to get my weight down to a healthy range, AS LONG as I’m not losing it from malabsorption. Have you been referred to a dietitian? Have a great day! My weight is up from 172 to 190 after i got my blood sugars under control. weight does wax and wane a little. Gastro does have me not drinking milk for now just to see if it helps with the bloating. Doug just shoot for a close BMI does not have to be perfect. sure the Creon is a good thing that will help. I have seen a dietitian a few times but has not always been helpful. GI will be discussing food at the next office visit. Quote Link to comment Share on other sites More sharing options...
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