I have had 2 test positive with polymosy but not cancaer. Im out at mayo and they just want to wait till may to test a 3rd time.can anyone tell me if this has happen to them, Every where i read they say to do something right away befor it turns. if any one can give me info about this thanks mark
Do you mean polysomy? Are they looking at your chromosomes for duplicates???
yes polysomy,i guess its pre cca ( cancer ) 1 dr said i should go on transplant list but the head DR. said i wasnt sick yet
Mark,
My son goes in Monday for his appointment. We are still waiting on biopsy results and blood work. I'll ask his Dr. Monday what course of action he would take if this occured. In the meantime my thoughts and prayers are with you. The waiting and not knowing is the toughest part for me.
Anita
Why is the head doc saying no to the transplant list? How long have you been diagnosed with PSC? Being pre-cancerous seems like a pretty damn good reason to be on the list to me. ??? -Dana
pepsi said:
yes polysomy,i guess its pre cca ( cancer ) 1 dr said i should go on transplant list but the head DR. said i wasnt sick yet
My prayers are with you too. He is to young to be going through this. good luck !
mybuddy20gauge@hotmail.com said:
Mark,
My son goes in Monday for his appointment. We are still waiting on biopsy results and blood work. I'll ask his Dr. Monday what course of action he would take if this occured. In the meantime my thoughts and prayers are with you. The waiting and not knowing is the toughest part for me.
Anita
I have had psc for 7 or 8 years now. And to be honest I never think about my psc till now.I had uc and now have a j-pouch. I have always been told you want to get a live transplant befor it turns cancer so i m not sure what to think
My hepatologist recommended live donor transplant to me a couple of years. I wrote the letter I would email out to everyone I knew, but I never mailed it. But now, in the next week, I'm going to send it and give it everything I've got. I hope to have a new liver within a year. Within. Maybe before the year's over. I feel worse now but my MELD score is only 9; generally it doesn't rise very fast for PSC patients. Craptastic disease. I'm also eligible for a pediatric cadaver liver because of my petite size, and now I'm going to buy a bag just for that trip to the hospital and pack it.
Mark, I'd say, take the plunge and start asking everyone you know to be a live donor for you. Then get online and find out all you can about being a living donor, what they can expect, and what you should offer them. There's all kinds of help out there, even a financial organization that offers financial help to donors. If you're interested, I can share all I've learned in the past few weeks. Asking is a huge courageous, brave act. I feel good now that I've committed to it.
I wish you the best of luck. Start asking for help now, for whatever you decide.
Dana