Guest guest Posted November 8, 2002 Report Share Posted November 8, 2002 - I posted the webpage in color on the website yesterday at: http://groups.yahoo.com/group/pancreatitis/files/JOHNS%20HOPKINS% >>>...I just worry these docs won't treat her for the pain cuz of the enzymes. And I looked up as much of that site you gave as I could and will go there often to nose around, it was very good thank you. But I could not find the " normal " enzyme but still have pain stuff you were saying was there. Could you send the specific page, maybe I am reading it wrong. Thanks for all that you do...>>> I have not had a chance to print it out, but if you have a color printer I put the " non-elevated, or normal " enzymes in red. Hope this helps, Gail West, Indiana State Represetative Pancreatitis Association International www.pancassociation.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2002 Report Share Posted November 8, 2002 - I posted the webpage in color on the website yesterday at: http://groups.yahoo.com/group/pancreatitis/files/JOHNS%20HOPKINS% >>>...I just worry these docs won't treat her for the pain cuz of the enzymes. And I looked up as much of that site you gave as I could and will go there often to nose around, it was very good thank you. But I could not find the " normal " enzyme but still have pain stuff you were saying was there. Could you send the specific page, maybe I am reading it wrong. Thanks for all that you do...>>> I have not had a chance to print it out, but if you have a color printer I put the " non-elevated, or normal " enzymes in red. Hope this helps, Gail West, Indiana State Represetative Pancreatitis Association International www.pancassociation.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2002 Report Share Posted November 8, 2002 - I posted the webpage in color on the website yesterday at: http://groups.yahoo.com/group/pancreatitis/files/JOHNS%20HOPKINS% >>>...I just worry these docs won't treat her for the pain cuz of the enzymes. And I looked up as much of that site you gave as I could and will go there often to nose around, it was very good thank you. But I could not find the " normal " enzyme but still have pain stuff you were saying was there. Could you send the specific page, maybe I am reading it wrong. Thanks for all that you do...>>> I have not had a chance to print it out, but if you have a color printer I put the " non-elevated, or normal " enzymes in red. Hope this helps, Gail West, Indiana State Represetative Pancreatitis Association International www.pancassociation.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2002 Report Share Posted November 8, 2002 , This Sucks. Sorry but it does. I don't know if your a pushy person or not, I am. Every time we go to a new Dr. the last thing I do before I leave his office is ask for his business card. If his e-mail address is on the card I say nothing if not I ask for it. If we have questions or concerns that are not of urgent nature I e-mail them. I don't know if you've played the phone game with Dr.'s offices but I have. This way I get around the snotty receptoinists and the nurses that think I'm a pain in the butt. My latest campaign has been to E-mail them every bit of information I come across on CP. I tell them please look and will talk about it in next E-mail or appointment. So far it's working pretty good. Other thing each e-mail contains a report on how Cassie has been feeling and what level of pain she's been having . Anyway maybe this will help Patty in Bangor, ME Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2002 Report Share Posted November 8, 2002 , This Sucks. Sorry but it does. I don't know if your a pushy person or not, I am. Every time we go to a new Dr. the last thing I do before I leave his office is ask for his business card. If his e-mail address is on the card I say nothing if not I ask for it. If we have questions or concerns that are not of urgent nature I e-mail them. I don't know if you've played the phone game with Dr.'s offices but I have. This way I get around the snotty receptoinists and the nurses that think I'm a pain in the butt. My latest campaign has been to E-mail them every bit of information I come across on CP. I tell them please look and will talk about it in next E-mail or appointment. So far it's working pretty good. Other thing each e-mail contains a report on how Cassie has been feeling and what level of pain she's been having . Anyway maybe this will help Patty in Bangor, ME Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2002 Report Share Posted November 8, 2002 , This Sucks. Sorry but it does. I don't know if your a pushy person or not, I am. Every time we go to a new Dr. the last thing I do before I leave his office is ask for his business card. If his e-mail address is on the card I say nothing if not I ask for it. If we have questions or concerns that are not of urgent nature I e-mail them. I don't know if you've played the phone game with Dr.'s offices but I have. This way I get around the snotty receptoinists and the nurses that think I'm a pain in the butt. My latest campaign has been to E-mail them every bit of information I come across on CP. I tell them please look and will talk about it in next E-mail or appointment. So far it's working pretty good. Other thing each e-mail contains a report on how Cassie has been feeling and what level of pain she's been having . Anyway maybe this will help Patty in Bangor, ME Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2002 Report Share Posted November 10, 2002 , I think I have seen a reference that you live in Kentucky. I also live in Kentucky, Louisville and have found a great Gastro at Jewish Hospital. He has treated me since April of 2000, and together we are educating a Pain Doctor about care for the disease. I had a morphine pump implanted in February of this year and it took until last week to get the dose up to where I have very little breakthrough pain. I also had surgery, a distal pancreatecomy there in July of last year but the surgeon has left the state. Please let me know if you or others are interested in more information. Bruce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2002 Report Share Posted November 10, 2002 , I think I have seen a reference that you live in Kentucky. I also live in Kentucky, Louisville and have found a great Gastro at Jewish Hospital. He has treated me since April of 2000, and together we are educating a Pain Doctor about care for the disease. I had a morphine pump implanted in February of this year and it took until last week to get the dose up to where I have very little breakthrough pain. I also had surgery, a distal pancreatecomy there in July of last year but the surgeon has left the state. Please let me know if you or others are interested in more information. Bruce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2002 Report Share Posted November 10, 2002 , I think I have seen a reference that you live in Kentucky. I also live in Kentucky, Louisville and have found a great Gastro at Jewish Hospital. He has treated me since April of 2000, and together we are educating a Pain Doctor about care for the disease. I had a morphine pump implanted in February of this year and it took until last week to get the dose up to where I have very little breakthrough pain. I also had surgery, a distal pancreatecomy there in July of last year but the surgeon has left the state. Please let me know if you or others are interested in more information. Bruce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2002 Report Share Posted November 11, 2002 Thanks to all of you who responded to me about Jackie's doctors and the way they treat her. I know you guys are all right about the enzymes. It is just so tiresome, in which all of you know, fighting with these doctors. No matter how much you tell them, or give them print outs of proof from what you find on the web. Sometimes they still act like you are drug seekers. Well, I just appreciate you guys telling me your stories and keeping me in that fighting mode, knowing I can handle these doctors and I can do this. Thanks again, I will keep you all posted on how Jackie is doing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2002 Report Share Posted November 11, 2002 Thanks to all of you who responded to me about Jackie's doctors and the way they treat her. I know you guys are all right about the enzymes. It is just so tiresome, in which all of you know, fighting with these doctors. No matter how much you tell them, or give them print outs of proof from what you find on the web. Sometimes they still act like you are drug seekers. Well, I just appreciate you guys telling me your stories and keeping me in that fighting mode, knowing I can handle these doctors and I can do this. Thanks again, I will keep you all posted on how Jackie is doing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2002 Report Share Posted November 11, 2002 Thanks to all of you who responded to me about Jackie's doctors and the way they treat her. I know you guys are all right about the enzymes. It is just so tiresome, in which all of you know, fighting with these doctors. No matter how much you tell them, or give them print outs of proof from what you find on the web. Sometimes they still act like you are drug seekers. Well, I just appreciate you guys telling me your stories and keeping me in that fighting mode, knowing I can handle these doctors and I can do this. Thanks again, I will keep you all posted on how Jackie is doing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2002 Report Share Posted November 30, 2002 > I was then told by other doctors that the information I had gotten > originally was wrong and that earl;y diagnoses and intervention was critical > to successfully preventing diabetes and to irradiating any potential source > of pain. Karyn > > Karyn E. , RN > Founder / Executive Director > Pancreatitis Association International > Corp. Office: Indps, IN, USA 1- Hey Karyn, My question to your statement above would be, exactly what would have been your intervention. I think you are saying you would have had the pancreatomy with islet cell auto-transfer. Could you tell me how they narrowed down the damage to your other organs. When Jackie has a CTscan they really don't " see " that much damage. The only time they really see some damage is during the ERCP. Is there a test you had done or something surgical. OR the damage was severe enough to " see " on some of the x-ray type tests they have? If you feel comfortable enough in answering my questions. I keep asking my husband, family, and close friends about the surgery and not one of these people will even give me an opinion. Just questions and comments that seem to make them sound more indecisive as I am. I can see it utimately lies all on me...which can be well...undescribable and I just can't think of a word for it, LOL. Irritating? Maybe that is the word. Anyways, Thank You for your support and help to this group. In my humble opinion, this is the best place on the internet. Thanks, Quote Link to comment Share on other sites More sharing options...
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