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Pardon our dust!
Please bear with us while we update our new website!
Posts found: 7
My husband received a liver transplant at Mayo (Jacksonville) on Feb. 24. I posted a thread with more details in the transplantation section.
He's doing fantastic so far!
And was successfully transplanted on Feb. 24 in Jacksonville, FL. He's doing fantastic so far. Liver numbers are trending down and most are in the normal range already. You'd never know that he had major surgery two weeks ago, other than the awesome "battle wound" on his abdomen. I tell him he's been through a war for sure.
And the best news of all--the pathology report on his old liver was good. The tumor was practically gone due to the aggressive treatment protocol of radiation and chemo, and no cancer was found anywhere else outside of the bile ducts.
We relocated to Jacksonville in July 2010 to go through the transplant evaluation and then chemo and radiation. He was added to the transplant waiting list on Oct. 12 after a successful exploratory staging surgery. The last 8 months haven't been easy, but most definitely worth all the ups and downs. We're looking forward to going home to NC in a few weeks, and spending the rest of our lives doing whatever we can to promote organ donation, cholangiocarcinoma, and PSC awareness. It's the least we can do to honor the donor and his or her family, who gave us the most incredible gift so that my husband could live.
Thank you both so much (and thank you to the people who have emailed me privately). Josh and I appreciate all the prayers and positive thoughts!
My husband Josh was diagnosed with PSC in May and cholangiocarcinoma in July. He's currently going through the liver transplant evaluation at Mayo Jacksonville. I'm maintaining a CB site for him at:
He doesn't ever post himself but he loves to read the guestbook messages!
It's been awhile since I've had time to come back and give an update. My husband Josh began going through Mayo Jacksonville's liver transplant evaluation protocol on July 19. He underwent most of the testing with few complications, with the exception of a major GI bleed where his hemoglobin got down to 4. The doctors said an older man would have gone into cardiac arrest. He currently holds the record for the fastest blood loss in 2010 at Mayo Jacksonville. Not exactly the kind of record you want your husband to hold!
The GI bleed was caused by an endoscopic sphincterotomy to insert bile duct stents during an ERCP. The good news is, despite the setback with the bleed, his bilirubin is down to 1.7 as of yesterday. And most of his liver numbers are close to normal. So the stents are definitely doing their job.
Josh is currently undergoing chemo and radiation (he's on day 10 of 20). On Labor Day weekend, he had another setback when he was diagnosed with a blood infection on Friday and had to be hospitalized all weekend to receive IV antibiotics. The blood infection was most likely caused by the stents allowing gut bacteria to get up into the bile ducts. (Stents: the very definition of a blessing and a curse!) The doctors said Josh was classified as having sepsis, which is just as scary as the GI bleed. But luckily he responded well to the antibiotics and was released from the hospital on Sept. 6.
After he completes chemo and radiation, he is scheduled for an endoscopic ultrasound and another ERCP to replace the stents (I won't lie
I just wanted to thank everyone for your well wishes and encouraging words. We are driving to Jacksonville tomorrow so I will try to update sometime in the next week.
Your positive thoughts and prayers mean a great deal to us. We are keeping all of you in our prayers too.
Wish I didn't have to visit a site like this but I'm glad you all are here. My husband Josh was diagnosed with "severe PSC" in May 2010. He turned 35 on July 5, then on July 6 the hepatologist called and told us he has cholangiocarcinoma as well. The doctor referred us to the Mayo Clinic in Florida so we are headed south next week (we live in NC). We have an appointment July 14th with Dr. Elizabeth Johnson.
We're hopeful the cancer was found early. Josh is determined to fight and beat the cancer and the PSC, and his spirits are good so far. I'm still in shock--feels like I'm watching a movie of someone else's life. We are blessed with wonderful family and friends who are all praying, and some of them will be traveling with us next week.
I probably won't post too often but I just wanted to take a moment to introduce myself and say how glad I am to have found this site. It's nice to know we aren't alone.
Posts found: 7