JUST TOLD MY TWIN SISTER HAS PSC AFTER HAVING UC SINCE SHE WAS 7 YEARS OLD SO IM TRYING TO LEARN EVERYTHING I CAN ABOUT IT ...IM STILL IN SHOCK AND BAFFLED AT HOW FAST THINGS HAVE PROGRESSED ONE WEEK THERE TELLING US MY SISTER HAS PSC AND A MONTH A LATER WHERE HIT WITH WORSE NEWS HER BILE DUCTS ARE BARELY WORKING AND THEY NEED TO REMOVE THE ENTIRE LEFT LOBE OF HER LIVER DIAGNOSED WITH CHOLANGITIS CARCINOMA SO THE NIGHTMARE BEGINS WITH THE REMOVAL OF THE LEFT LOBE BUT WHERE UNABLE TO GET ALL THE CANCER THAT IS ON THE RIGHT SIDE IM TOLD BY A VERY CARING SURGEON THAT SHE HAS A YEAR MAYBE MORE WHICH TOTALLY FREAKS ME OUT WHAT DO I DO WHAT DO I SAY TO HER HOW DO LIVE KNOWING THERE'S A CLOCK TICKING SHE HAS THE SURGERY BUT A WEEK LATER INFECTION AND FEVER SEND HER BACK INTO THE HOSPITAL I SLEEP BESIDE HER ON A COT PRAYING EVERY NIGHT THAT SHE CAN BEAT IT IF ANYONE CAN ITS TRACY SHES BACK HOME NOW AND I CAN SEE SHES FIGHTING THIS BUT TOO SOON FOR CHEMO SHE HAS TO GET STRONGER ALL THESE YEARS SHE WAS WATCHING FOR COLON CANCER AND ITS HER LIVER THATS GET IT IM BASICALLY JUST LOOKING FOR ANSWERS TREATMENTS,SUPPORT FROM EVERYONE I HAVE ALREADY LOST ONE SISTER TO COLON CANCER SHE WAS ONLY 43 I CANT BARE TO LOOSE TRACY SHES MY TWIN WE HAVE A BOND THATS UNBREAKABLE I FEEL HER PAIN WHEN SHES SICK IM SICK I KNOW SHES SCARED I CAN FEEL IT AND SEE IT IN HER EYES WHEN SHES TO TIRED TO FIGHT I WILL FIGHT FOR HER NO ONE REALLY KNOWS HOW MUCH TIME THERE BLESSED WITH I REFUSE TO GIVE UP AND SHES A FIGHTER SO I KNOW SHE FEELS THE SAME BUT IM SO SCARED I CANT IMAGINE MY LIFE WITHOUT HER BY MY SIDE WE CAME INTO THIS WORLD TOGETHER AS TWINS THAT CONNECTION IS REMARKABLE I WOULD CHANGE PLACES WITH HER IN A MINUTE IF ONLY I COULD...... THANK YOU FOR ALLOWING ME TO VENT AND GET ALL MY FEARS OUT FOR NOW .....THANK YOU FRIENDS PAMELA
Pamela, I hate that you and your sister are in this position. Many people who have UC will get psc, and cholagicarcinoma (cc) is hard to detect and too often, fatal. And still, depending on the transplant center, having cc can nix a transplant.
I do not know if researching transplant centers to see if any will still do transplants with cc will help.
Relatives and caregivers go through he-ll too, and there are a lot of both on this site. It may sound trite, but you're in good company. I am glad you have reached out for advice/help in getting through this roller coaster ride. You can also search for key words, like relative, sister..... for threads that may prove helpful.
Please take care of yourself too, and have your bloodwork checked as well.
So sorry about your sister. I know the emotional pain you must be going through, I lost my mother to liver cancer two years ago and now I have been diagnosed with PSC. Praying for strength for you and your sister. A new friend
THANK YOU PETALS SHE WAS TAKEN BY AMBULANCE BACK UP TO MUSC IN CHARLESTON LAST NIGHT AND IM SO SCARED SHES MY TWIN SISTER AND WHERE LIKE ONE PERSON SOMETIMES I FEEL HER PAIN LIKE ITS MY OWN IM SO SORRY FOR YOUR LOSS AND PLEASE TAKE CARE .....WELCOME NEW FRIEND BLESS YOU PAM
THANK YOU JEFF IM TAKING IT ONE DAY AT A TIME SHES BACK HOME AND HOPEFULLY WE CAN STAY WITHOUT ANY MORE COMPLICATIONS SETTING IN ........