Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 , You said, " I have CP along with SOD, scarring of my entire pancreas.. I was just told that my symptoms will dictate things. I feel very scared ...reading ....CP patients are having surgery BEFORE things get too bad. When do you know that?? It is a very scary thing. I was told that we would let the symptoms dictate things, as well. And, as I mentioned on other posts, I was never told that a transplant was an option. That is why I am ecstatic about getting to hear Sutherland in person. Unfortunately, I sat around pushing my symptoms away with narcotics instead of listening to them. And, now it is too late for an Auto Islet Cell transplant. I have just decided to open my eyes and quick sitting around waiting for my Diabetic symptoms to dictate the treatment. I don't want to wait until I am blind, on dialysis, and have a stroke. What clearer symptoms do I need. The body is a miraculous machine. It is built to give us symptoms as messages that something is wrong. Diabetic and pancreatic research facilities have been working night and day for new treatment options and for a cure. They have made progress. It only makes sense too be part of this exciting new times. I didn't know that my doctors would not notify me when there were new treatment options. It wasn't until recently that I had that moment of clarity. I found out that you have to sign up to be a part of the clinical trials at research facilities. Signing up doesn't mean you are committing to take part in them as a guinea pig. But, it does ensure that you will be notified of all the latest research and know when these developments are made available to the public. I also learned that it is important to sign up to the national pancreas organ transplant list and not just the local transplant list. Kidneys are only transplanted locality, but pancreases are available to anyone in the nation. Dr. Sutherland said that when they always add their patients name to the national list, but you need to make sure your local doctor is aware of that. I personally recommend that anyone wanting to be put on the transplant list just sign up with University of Minneapolis, Minnesota. Karyn Karyn , RN Founder / Executive Director http://www.pancassociation.org PAI Home Office: Indianapolis, Indiana, USA Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.