Guest guest Posted May 21, 2006 Report Posted May 21, 2006 Hi , I have been in the Yahoo group only one year so I don't know all the history of your illness. You are obviously very sick and your doctors are not taking care of you. However, if you were my sister I would suggest a different tack. Instead of demanding a transplant now (that's not going to happen with your meld) I would ask a good doctor (ah there is the hard part-- finding a good doctor) to start from scratch and find out why you are so ill. It may not be your PSC alone. It might be the pancreas, which has not been fully explored, or another autoimmune disease or something completely different or a combination of diseases. The point is you are sick and it is the doctor's job to find out what is causing it. My best thoughts are going to you with hopes that you feel better very soon and that you get the medical care you need and deserve. (Sacramento) dx uc and psc 2001 Quote
Guest guest Posted May 22, 2006 Report Posted May 22, 2006 , I also read your posting with horror. Your doctor cannot be allowed to dismiss your complaints so blithely. I agree with that the best thing to do would be to get a new docotr. If that's not possible, however, maybe you could bring someone with you to your appointments? If it's possible and if you have someone you trust, it might be good to have someone there with you, taking notes (i believe that is key), taking your complaints seriously and showing your doctor that someone is literally watching him react to you. I hope you get better treatment in the future... Nina Quote
Guest guest Posted May 22, 2006 Report Posted May 22, 2006 , When you went to the Cleveland Clinic did they give the same impression, or a very different impression that this last doctor? If I remember correctly, you thought it was a good visit. It seems that their second opinion should hold a lot of weight as you discuss things with your current team. LINDA (Mom of Suzanne, 17; IBD 1/04; PSC 3/04) F I would ask a good doctor (ah there is the hard part-- finding a good doctor) to start from scratch and find out why you are so ill. It may not be your PSC alone. I My best thoughts are going to you with hopes that you feel better very soon and that you get the medical care you need and deserve. (Sacramento) dx uc and psc 2001 Quote
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