Guest guest Posted July 23, 2004 Report Share Posted July 23, 2004 Hi everyone~~ I had another EGD with much better results this time. The ulcer is no longer bleeding (my blood count is up too! Yea!) The hernia however is more pronounced and he thinks that it is because I have been throwing up so much. He thinks that too will go back to its normal shape (which is pretty nasty already) in time without throwing up every day He has instructed me NOT to lie down AT ALL less than 30 minutes after I eat. No eating before bed, at least 1 hour but 3 hours would be better. He saw 3 suspicious spots that were not there the first time, and took a biopsy. Results on Wednesday. I have not thrown up in 4 days so that is much better but the pain is still there as is the nausea but that is much better since I have been taking the Nexium. I was pretty out of it but said to him, " then why do I have pain " He said " that is why you are have the video " Pompous ass! He had already gone over the details with my parents and didn't want to repeat himself. I know that you hardly ever remember anyway after having sedation, but still! He is very old school. One of the best technically but, arghhhhhhhhh! And what kills me is he is a big ol' soft spoken gentle man in the office. I guess he has just done this for so long it is reflex. But you know I was a Risk Manager and counseled physicians and patients on patient communication, so the back of my hair stood up on end when I hear him say that .. Calm Debbi, you are not a Risk Manager any more. HA! I loved the anesthesiologist! He listened and asked about 30 EDS related questions and very interested in each of my answers. His wife is a dermatologist and sees many EDS patients so I asked for her name and I'm going to see her. I love finding doctors that have treated EDS patients. When I was in the procedure room the circulating nurse asked me if there would be a problem turning on my side. I told them, " Well my shoulder will probably dislocate but that should not be an issue " . They all stared at me and the anesthesiologist said, " YOU DISLOCATE TOO! " Apparently we skipped that in all the 30 questions he asked! I proceeded to tell him I have a fresh shoulder injury that refuses to stay in place but if I turn myself I could do it in a way that should be OK. What was so great is he looked directly at the nurses (and Dr. C.) and said, " Once she is in place do not attempt to move her, rock her, bump her, twist her, bend her or otherwise poke her with you baby finger! " He just put the meds in the IV and boom I was out so I didn't get to laugh at his remark but he was dead serious. But great huh that it was all taken so seriously and with such interest? Oops, went on a bit too long, sorry! Just wanted you to know that at least I am not a mass of bloody ulcers! Debbi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2004 Report Share Posted July 24, 2004 Hi Debbie -- Well, I am glad your ulcer is no longer bleeding - that must be a hugh relief!! I hope your doctor is right and your hernia gets better on its own. Isn't that something about your anesthesiologist and his wife? I love that, too, when it happens and it always seems to happen right out of the blue!! I am glad he really understood about EDS and took it seriously -- those are the kind of people everyone needs in the medical profession. I also take Nexium and it has helped me tremendously. I hope your biopsies come back fine and I will be keeping you in my thoughts and prayers. Love, Patti update on me Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 CholangitisSuprt@... wrote: > > Hi! > Are you by any chance on Mercaptopurine? > No... I've been on three different immune suppression drugs so far. Prograf (which I'm still on but at a reduced dose), CellCept, which they took me off in favor of Azathioprine (Imuran) because my Colitis was flaring and it was supposed to help that. It did help the colitis, but since the PTLD started within a couple months of starting it, and it increases the risk for lymphoma, they took me off it and cut my Prograf dose in half. So now I'm just taking 3 mg of prograf per day. I'm doing fine on that regimen, and my colitis is still under control! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 CholangitisSuprt@... wrote: > > Hi! > Are you by any chance on Mercaptopurine? > No... I've been on three different immune suppression drugs so far. Prograf (which I'm still on but at a reduced dose), CellCept, which they took me off in favor of Azathioprine (Imuran) because my Colitis was flaring and it was supposed to help that. It did help the colitis, but since the PTLD started within a couple months of starting it, and it increases the risk for lymphoma, they took me off it and cut my Prograf dose in half. So now I'm just taking 3 mg of prograf per day. I'm doing fine on that regimen, and my colitis is still under control! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 The reason I ask - I was on mercaptopurime which has non-hodgkins lymphoma as a side effect. I ended up doing a pet scan. They found enlarged nodes and spleen. So they had to do surgical piopsies on the lymph nodes to see if was lymphoma. I ended up with lymphatic? Hyperplasia. I am curious how they can diagnose lymphoma w/o a biopsy? Were they able to determine throu other means like marrow biopsy?ThanksShaulPSC UCSent via BlackBerry by AT&TFrom: athan Date: Wed, 03 Dec 2008 20:56:05 -0500To: < >Subject: Re: Update on me CholangitisSuprt (AT) aol (DOT) com wrote: > > Hi! > Are you by any chance on Mercaptopurine? > No... I've been on three different immune suppression drugs so far. Prograf (which I'm still on but at a reduced dose), CellCept, which they took me off in favor of Azathioprine (Imuran) because my Colitis was flaring and it was supposed to help that. It did help the colitis, but since the PTLD started within a couple months of starting it, and it increases the risk for lymphoma, they took me off it and cut my Prograf dose in half. So now I'm just taking 3 mg of prograf per day. I'm doing fine on that regimen, and my colitis is still under control! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 The reason I ask - I was on mercaptopurime which has non-hodgkins lymphoma as a side effect. I ended up doing a pet scan. They found enlarged nodes and spleen. So they had to do surgical piopsies on the lymph nodes to see if was lymphoma. I ended up with lymphatic? Hyperplasia. I am curious how they can diagnose lymphoma w/o a biopsy? Were they able to determine throu other means like marrow biopsy?ThanksShaulPSC UCSent via BlackBerry by AT&TFrom: athan Date: Wed, 03 Dec 2008 20:56:05 -0500To: < >Subject: Re: Update on me CholangitisSuprt (AT) aol (DOT) com wrote: > > Hi! > Are you by any chance on Mercaptopurine? > No... I've been on three different immune suppression drugs so far. Prograf (which I'm still on but at a reduced dose), CellCept, which they took me off in favor of Azathioprine (Imuran) because my Colitis was flaring and it was supposed to help that. It did help the colitis, but since the PTLD started within a couple months of starting it, and it increases the risk for lymphoma, they took me off it and cut my Prograf dose in half. So now I'm just taking 3 mg of prograf per day. I'm doing fine on that regimen, and my colitis is still under control! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 athon, Certainly glad things are moving in the right direction! I'm hoping and praying the news will be great the next time around, until then keep the faith and the positive attitude. (MO) Trim your tree and your spending! Get the AOL Holiday Shopping Toolbar for money saving offers and gift ideas. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 athon, Certainly glad things are moving in the right direction! I'm hoping and praying the news will be great the next time around, until then keep the faith and the positive attitude. (MO) Trim your tree and your spending! Get the AOL Holiday Shopping Toolbar for money saving offers and gift ideas. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Thanks for the update athan. I wish you continued improvement in your health.We also had the lymphoma scare will Bill after his mono in 07.LeeHi allJust thought I'd give a brief update on how I'm doing. Some of you may recall that I'm dealing with Post Transplant Lymphoproliferative Disorder (try saying that three times fast!) since having Epstein Barr Virus earlier this year. I just saw my hematologist today, and she said that I seemed to be doing well. Last CT scan showed improvement in the enlarged lymph nodes (although they're still pretty enlarged). So things are at least moving in the right direction. My Epstein Barr levels are still undetectable so that's good too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Thanks for the update athan. I wish you continued improvement in your health.We also had the lymphoma scare will Bill after his mono in 07.LeeHi allJust thought I'd give a brief update on how I'm doing. Some of you may recall that I'm dealing with Post Transplant Lymphoproliferative Disorder (try saying that three times fast!) since having Epstein Barr Virus earlier this year. I just saw my hematologist today, and she said that I seemed to be doing well. Last CT scan showed improvement in the enlarged lymph nodes (although they're still pretty enlarged). So things are at least moving in the right direction. My Epstein Barr levels are still undetectable so that's good too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2009 Report Share Posted February 6, 2009 athan, It certainly hasn't been easy for you post transplant. I hope they can get all this stuff figured out and get you back running road races again. If you were planning on the Chicago conference, I hope this won't keep you away. We'd all love to visit with you again. Take care. Tarheel Tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2009 Report Share Posted February 6, 2009 athan, It certainly hasn't been easy for you post transplant. I hope they can get all this stuff figured out and get you back running road races again. If you were planning on the Chicago conference, I hope this won't keep you away. We'd all love to visit with you again. Take care. Tarheel Tim Quote Link to comment Share on other sites More sharing options...
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