Guest guest Posted June 3, 2003 Report Share Posted June 3, 2003 There is no way anyone can go into a transplant with enough preparation. And the medical staff cannot tell us anything because WE ARE ALL DIFFERENT and among other things, they do not have the right or responsibility to scare you out of your wits. But Dr Kaplan did say something to me that was very sobering. He said to stay as strong as I could for as long as I could because every day that I could wait was one more day of practice and advancement of the science, and it would work in my favor. But as patients we do have the responsibility and the honorable duty to watch out after each other. That's why I am here. That's why I give this address to everyone that I know has PSC out there. Because they can really learn things here. Not only do we have very knowledgeable and experienced patients in just about every field related to the disease and Tx in here, but we have the expert support of many people that do find the written news and share them with us very adequately. As a patient I have always tried to help other patients. God didn't give this life for nothing. It is here so that I can share it just like He intended me to do it. I am on an unconditional availability to my doctors and other patients that need to know and want to be connected to other patients. Itis my privilege and my pleasure to do so. Prepared? No one can prepare you for the anguish of being connected to so many tubes for so long; to having drains actually draining coming out of you; to know that the very medicines that keep you alive are wreaking havoc on your bones and protein absorption and the branding is permanent and painful; no one tells you that every day you survive you will open your eyes in wonderment that you are still here and joyous that you are; nothing can prepare for losing a fellow patient that started out around the time you did and either you were his or her role model or he or she was yours; nothing can prepare you for having to face a family member of this other patient that knows it is the end and that knows that you know, too. Prepared? Thank God I wasn't prepared! If they would have told me that this is a recurring condition and that the next time it will probably also be my kidney, too. If they would have given me survival statistics, a list of the meds and the schedule...Only God knows what my reaction would have been. They even told me to learn to take and log my blood pressure, heart rate, temp and weight and blood sugars at least every morning. I was doing it for years before the Tx. By the way, the doctor that told me was the one that also operated on me, Dr Freeman, what a very nice man. Were they preparing me for the Tx? Of course they were. But I forgot it all when the time came, as the time approached...And I am like an elephant, I never forget anything, not a med, not a dose, not a hint, not an order from my doctors! ********** Lily in Boston, MA, USA - 58 yr old, 5'8", 150lbs - UC dx 1973, PSC dx 1986, Tx Apr 18, 2002. Both hips replaced 2000, both knees replaced 1995, gastric bypass 1994 (lost 200 pounds), fibromyalgia, rheumathoid arthritis, osteoporosis, fused lumbar vertebrae op'd 1970 & narrowing of medular canal 2003, Diabetes dx 1988, TMJ dx 2003 Quote Link to comment Share on other sites More sharing options...
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