Guest guest Posted May 20, 2006 Report Share Posted May 20, 2006 Well, gang, I went Wednesday for my annual evaluation, since I was listed this time last year. It began with a vomiting in the heps office. Yes, the beginning was rough, but it got worse. The hep I got stuck with is the hep that made me want to seek medical attention in Omaha 4+ years ago. He is the same arrogant ass he was then, and I left his office in tears! He told me that my liver was perfectly fine, and the only reason I'm getting worse is that I take too many medications! He started crossing off meds he was going to take me off of and began with my Neomycin & Wellbutrin. I began to cry right then. I explained that if he took me off of those two I'd never be able to form a complete sentence or remember how to get to the store, heck, for that matter I'd never be able to get off of the couch! Ultimately he left those two alone, but argued that the Neomycin can't be helping because I can't possibly have H.E. since my liver is so healthy! So, if I felt like a psycho before, this guy made me feel like a nut job that needed to be put away. (He went as far as to tell me that if I got a new liver tomorrow, I would not feel any better than I do right now...because my liver is fine!) Aaahhhhh!!!!!! The conversation began with him explaining that labs don't always give a clear picture of what's going on, and how the labs that are used to calculate a MELD score DO NOT work well for PSC patients (with PBC patients not far behind). Of course that offered me some relief, thinking OK, I'm not crazy. But by the time he was finished with me I felt crazier than a loon. The only thing he did do was order amylase and lipase because I've had a lot more trouble with eating, even with the pancreatic enzymes. I've been having contractions, nausea, pain and severe joint pain, just like I did when they first discovered the chronic pancreatitis. I was scheduled for blood work, a Dexa scan and an MRCP that day, but didn't get much accomplished. I went to the lab and they didn't have orders for blood work and the tx secretary refused to OK anything. I had the scan done, but rescheduled my MRCP for the next day. I was too nauseated to lay there long enough to complete the exam. Thurs. I got the lab orders straightened out with my coordinator who agreed that this is a good time to check the cancer indicators (CA-19-9 and AFP), as well as all labs needed to recalculate my MELD score to see if it's gone up. I had the MRCP done, but I was on that table for over an hour. Last time it only took about 30 min. It was an exhausting couple of days. I did ask the tech if the MRCP included pics of my pancreas (since I never had the test done to look for a growth on my pancreas like I was told to in Jan., oops) and she said yes. I'm hoping that something (fixable!) shows up to explain how incredibly ill I am. The added bonus would be that Dr. Lisker would have to face the fact that his colleagues are right and he is wrong -- I AM in need of a new liver. According to him I am THE healthiest patient ever listed for tx -- apparently I'm just looking to do it for fun. I have been putting off going to the hospital for over a week now, because I am packing and will be moving this weekend. Once I'm unpacked it'll be another story. The first night of unbearable pain, and nausea/vomiting I'm going to the ER and I'll beg them to keep me if I have to. I am so sick I can rarely force myself to do much of anything. Which, as you can imagine, has made packing and moving very difficult! I should get results of all the tests on Monday and I will post when I know more. I'm hoping to have some answers that will allow me to avoid an ER trip/hospital stay! I know one thing already, I will NOT see this doc again. As if what was said wasn't bad enough, he did something that no other tx doc has ever done, and I found it terribly inappropriate. If I am scheduled for clinic on the day he's seeing patients I will reschedule! I'd rather make an extra trip than to subject myself to him. I clearly remember why I thought getting away from him was worth the 6 hour drive to Omaha! Sorry this is so long! (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2006 Report Share Posted May 22, 2006 , I'm sorry that your life continues to unfold with so much drama. I hope that this will just be one more chapter in that book that you plan to write. I agree with the others that you need to replace that doctor ASAP. I was so angry just reading your post! Here's hoping that you can find a doctor who will take the time to try to figure out what is going on with your health, since a healthy liver sounds like a strange diagnosis at this point for you. I hope that your move went smoothly. Keep us updated about your test results. We're all rooting for you ! Ricky 1 yr. listed eval-absurd! Well, gang, I went Wednesday for my annual evaluation, since I was listed this time last year. It began with a vomiting in the heps office. Sorry this is so long! (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2006 Report Share Posted May 22, 2006 , I'm sorry that your life continues to unfold with so much drama. I hope that this will just be one more chapter in that book that you plan to write. I agree with the others that you need to replace that doctor ASAP. I was so angry just reading your post! Here's hoping that you can find a doctor who will take the time to try to figure out what is going on with your health, since a healthy liver sounds like a strange diagnosis at this point for you. I hope that your move went smoothly. Keep us updated about your test results. We're all rooting for you ! Ricky 1 yr. listed eval-absurd! Well, gang, I went Wednesday for my annual evaluation, since I was listed this time last year. It began with a vomiting in the heps office. Sorry this is so long! (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
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