Guest guest Posted May 4, 2007 Report Share Posted May 4, 2007 I had my final meeting with Dr. Gores. This time, he gave a quick lesson on reading ERCP pictures. As I mentioned before, he will be an outstanding keynote speaker at next year's PSC Partner's conference. I have never experienced a doctor who explains things so well, and he makes sure you understand what he is saying. Good news...there were some abnormal cells in one of the ERCP brushings, but Dr. Gores does not believe that they are cancerous. We will follow up every six months to monitor the situation. He also showed me some areas where bile ducts have nearly closed off completely. Still, since the bilirubin is only slightly elevated and the INR is good, there is enough flow through the strictures to keep me functional. There was another slide that showed that the cirrhosis has progressed to an extent that there are places where the two lobes have started to separate. Anatomically terrible, according to Dr. Gores, but still functionally ok. The rifampin has nearly stopped all of the itching. One possible side effect is that rifampin can cause a spike in AST and ALT, but unless they jump into the 500 range, I should be OK. I also have severe osteopenia, particularly in my hips. I'm adding three Citrical pills a day to my routine. By the way, the labels don't say it, but he recommends taking calcium supplements on an empty stomach, at least one hour before eating. I'm also anemic, so I'll be starting an iron supplement. Dr. Gores takes the position that transplants trade one set of medical issues for another, and given the massive shortage of organs available today, our focus should be on maintaining as good a quality of life as possible and not relying on being listed as the ultimate cure. We'll reassess every six months, but for now, let's get symptoms under control and keep monitoring for signs of further deterioration. We could list now, but with my low MELD score (9), it doesn't make sense to do so yet. Overall, then, this was a productive trip. The people at Mayo are outstanding, and we got a lot of answers. I wouldn't go there for the sake of going, but if your doctor gives you a referral, make sure you take the opportunity. Tom PSC 1999 UC/Crohns 2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2007 Report Share Posted May 4, 2007 Tom,THis is really good news. I am so glad that for right now they can manage your symptoms.Thank you so much for sharing all of this with us.I just sent in my Vegas winnings of $50. I wish it could have been more but at least I didn't lose money there.It's one more mile for the road !It's funny, I was up 60 and wanted to turn it into more but I knew I was getting out at 50 , the magic mile.So for the first time I left Vegas a winner thanks to this goal.I want a new, better treatment. I believe we will find it.Together in the fight, whatever it takes !LeeI had my final meeting with Dr. Gores. This time, he gave a quicklesson on reading ERCP pictures. As I mentioned before, he will be anoutstanding keynote speaker at next year's PSC Partner's conference. I have never experienced a doctor who explains things so well, and hemakes sure you understand what he is saying.Good news...there were some abnormal cells in one of the ERCPbrushings, but Dr. Gores does not believe that they are cancerous. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2007 Report Share Posted May 4, 2007 Tom,THis is really good news. I am so glad that for right now they can manage your symptoms.Thank you so much for sharing all of this with us.I just sent in my Vegas winnings of $50. I wish it could have been more but at least I didn't lose money there.It's one more mile for the road !It's funny, I was up 60 and wanted to turn it into more but I knew I was getting out at 50 , the magic mile.So for the first time I left Vegas a winner thanks to this goal.I want a new, better treatment. I believe we will find it.Together in the fight, whatever it takes !LeeI had my final meeting with Dr. Gores. This time, he gave a quicklesson on reading ERCP pictures. As I mentioned before, he will be anoutstanding keynote speaker at next year's PSC Partner's conference. I have never experienced a doctor who explains things so well, and hemakes sure you understand what he is saying.Good news...there were some abnormal cells in one of the ERCPbrushings, but Dr. Gores does not believe that they are cancerous. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2007 Report Share Posted May 4, 2007 Tom,THis is really good news. I am so glad that for right now they can manage your symptoms.Thank you so much for sharing all of this with us.I just sent in my Vegas winnings of $50. I wish it could have been more but at least I didn't lose money there.It's one more mile for the road !It's funny, I was up 60 and wanted to turn it into more but I knew I was getting out at 50 , the magic mile.So for the first time I left Vegas a winner thanks to this goal.I want a new, better treatment. I believe we will find it.Together in the fight, whatever it takes !LeeI had my final meeting with Dr. Gores. This time, he gave a quicklesson on reading ERCP pictures. As I mentioned before, he will be anoutstanding keynote speaker at next year's PSC Partner's conference. I have never experienced a doctor who explains things so well, and hemakes sure you understand what he is saying.Good news...there were some abnormal cells in one of the ERCPbrushings, but Dr. Gores does not believe that they are cancerous. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2007 Report Share Posted May 4, 2007 Hi Tom, Thanks for sharing your Mayo experiences with us. I'm glad to hear that you were so pleased with Dr. Gores' care. I'm so glad that they didn't find cancerous cells, and that your liver is still functioning. Take care of yourself! Ricky Mayo-Final Dispatch I had my final meeting with Dr. Gores. As I mentioned before, he will be an outstanding keynote speaker at next year's PSC Partner's conference. I have never experienced a doctor who explains things so well, and he makes sure you understand what he is saying. Tom PSC 1999 UC/Crohns 2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2007 Report Share Posted May 4, 2007 Hi Tom, Thanks for sharing your Mayo experiences with us. I'm glad to hear that you were so pleased with Dr. Gores' care. I'm so glad that they didn't find cancerous cells, and that your liver is still functioning. Take care of yourself! Ricky Mayo-Final Dispatch I had my final meeting with Dr. Gores. As I mentioned before, he will be an outstanding keynote speaker at next year's PSC Partner's conference. I have never experienced a doctor who explains things so well, and he makes sure you understand what he is saying. Tom PSC 1999 UC/Crohns 2005 Quote Link to comment Share on other sites More sharing options...
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