Primary Sclerosing Cholangitis
From my old journey in life to my new journey in life!
It all started 11 years ago when coming in from working in the yard outside one day. That night I was not feeling good and had noticed blood in my stool. I then went to the emergency room at St. Luke’s South Shore, and they said that I had a bout of colitis. The following day I went to my G.I. doctor and he said that based upon some test results, it looked like I had gallstones in my gallbladder. They scheduled me for an ERCP procedure to remove any stones in the bile ducts and planned to follow that up with surgery to remove my gallbladder. During the ERCP, the doctor found out that I did not have stones in my bile duct; rather, they found out that I had what they called PSC (Primary Sclerosing Cholangitis). PSC is a disease-causing bile duct inflammation and scarring that eventually leads to liver failure. Its cause is unknown and its only cure is liver transplant.
This diagnosis sent us down a whole new and unexpected path. I was referred to a transplant surgeon so they could assess my condition further and figure out how to remove my gallbladder in a manner that would produce the best outcome for a future liver transplant. Following the removal of my gallbladder, I was continuously monitored by my GI doctor, Dr. Guda, and the transplant team. They worked together to try and manage my PSC . They did this by performing ERCP procedures every 3 to 6 months at St. Luke’s Milwaukee. The purpose of the procedure was to try and keep the bile ducts open and to biopsy for cancer. I also had a colonoscopy ever year because PSC and colitis increase my risk for GI cancers.
After nearly 9 years of ERCP’s, the doctors noticed a lesion on the left side in my bile duct. It was the start of cancer. I had to do 36 rounds of radiation and 6 rounds of IV push FU 5 chemotherapy medicine. After completing the IV chemo and radiation, I was placed on oral chemo until I could get a transplant. The chemo and radiation took a toll. I lost 25lbs and was very tired throughout the day. I also had to undergo exploratory surgery so the transplant team could validate that the cancer was controlled and that I was eligible to be on the transplant list. This is a require protocol. I had the surgery in June, 2014. The recovery from this surgery was very hard for me. I was extremely sore and I had to sleep in a recliner chair upright for 6 weeks.
The day after Labor Day weekend in 2014, I was hospitalized for the loss of weight and a huge bout of colitis. That day I had doctors coming into my hospital room all day. I also was having numerous tests done that day as well. The doctors told me that based upon everything that I had going on; my MELD score had increased and I had moved higher on the transplant list as a result. They said I would likely get a transplant soon.
On Sunday September 7, 2014, I had the transplant team of doctors come into my hospital room and told me and my wife and parents that they had a potential donor and a liver for me! I was excited about getting a second chance at life, but nervous about the surgery and recovery. The liver transplant was successful and after the 12 plus hours of surgery on Monday September 8, 2014, I was in the ICU for only 12 hours. The doctors couldn’t believe that I was able to be out of the ICU so fast. I was then brought to the 8-center floor of St. Luke’s Milwaukee where I was in the hospital for 14 days for recovery. Surprisingly, the recovery from this surgery was a lot easier for me from my exploratory surgery was. I was off work for a little over 1 year. My doctors told me that after this transplant surgery that I was never going to be able to go back to the job that I had before.
After my surgery and recovery that I started to volunteer for the American Liver Foundation’s Liver Life Walk in downtown Milwaukee. After volunteering for 2 years the Director, Dee Girard, of the Upper Midwest Division of the American Liver Foundation reached out to me to see if I would be interested in working part time for the division’s office located in West Allis. I said yes, I would be interested and after 4 months I was asked to come on full time as the Community Events Coordinator of the Upper Midwest Division of the American Liver Foundation.
Being in this position now, I feel that it is very important for me to promote to the public the over 100 different types of liver disease that are out there today and for me to advocate for the importance of educating the public on the importance of a healthy liver. I would also like to spread awareness on how important it is to become an organ donor. Without out this I would not have had another chance at life, and am very thankful for my donor’s family. Their generous gift gave me the chance to be with my wife, 2 sons, and my family. Knock on wood, I have been feeling good, with a few small bumps in the road and that I will be able to continue my 2nd journey in life with being blessed by my hero, Molly.
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