I wrote most of this post while on the transplant unit since Ken was readmitted earlier this week. He was released to go home today so I now finish this in the comfort of our home!
I first blogged here about when this journey started and here about the past six months. This will be the one time that I will fill in the gaps on the history of Ken's illness. It's a history that has been with us for the past 25 years but we have not let it stop us from living out our purpose!
I only share this to answer any questions that people may have, to guide our prayers and to hopefully help others who struggle in some way. Perhaps it will help some to know they are not alone in their struggles. Maybe it will help others to know that things in their lives are not really all that bad. I have been reminded often that "it is not what happens to us in life that matters but how we choose to respond that makes the difference."
1985 - 1987 If Ken where to tell the story he would probably say it started sometime in high school. He was an outstanding track and cross country runner but had experienced some unexplained fatigue from time to time. A blood test revealed elevated liver enzymes which could have been due to a muscle disorder or a liver problem. Due to his age and competitive running, the doctors ran a battery of tests that ruled out a muscle disorder. The symptoms seemed to have cleared up so no additional tests were ordered. Ken graduated high school in 1987 and then proceeded to attend basic training and tech school for the Air National Guard.
1987 - 1989 After tech school, Ken returned to the central Illinois area to work. He started college, joined the indoor track team, met his monthly obligation with the Peoria Air National Guard and planned to get married at the end of his freshman year. Symptoms surfaced in the Spring of 1989 which lead to a diagnosis of ulcerative colitis (a colon disease) and primary sclerosing cholangitis (a liver disease). Even though the prognosis was not great we still got married in May.
July 1989 Continued weight loss and a high fever landed Ken in an ER, followed by a surgery to remove his gall bladder. This surgery confirmed the diagnosis of PSC and a recommendation was made to get a second opinion at Mayo Clinic.
October 1989 While both of us were full time students, we were able to take a week off of school for testing at Mayo Clinic in Rochester, MN. Both autoimmune diseases were confirmed to be present. There were no known cures for either disease and very few treatment options at the time.
1990 - April 1995 Ken's liver enzyme numbers had returned to normal. The main struggle with his health at this time was due to flare-ups from the ulcerative colitis. Long term use of steroids became ineffective and the symptoms could no longer be managed with medications.
April 1995 Six years after the diagnosis of ulcerative colitis and 6 months after the birth of our daughter, Ken had to have surgery to remove the entire colon. He was a student at Concordia Seminary in St Louis and had to take six months off of school in order to have three major surgeries to remove the colon and to create an internal pouch.
May 1999 For most of the ten years following the initial diagnosis of PSC, Ken's liver enzymes remained within normal limits. In May 1999, Ken hit a point in which he was not feeling well and blood tests revealed elevated liver enzymes again. We were living in Almaty, Kazakhstan at the time and it was determined that we should return to the United States in order to have the status of the liver disease re-evaluated. Since PSC is so unpredictable it was recommended that we remain living in the US in the event that Ken would need additional medical attention. Months after returning to the US, the liver enzymes returned to normal.
October 2004 We had moved to the state of Wisconsin ealier in the year so Ken needed to find a new liver specialist to monitor his liver enzymes although they had been close to normal for the previous four years. Following this initial visit of routine blood tests and an MRI, Ken's new doctor from Green Bay referred him to UW Madison because he had discovered two masses in his liver. Biopsies revealed that these masses were not cancer. However, the liver specialist indicated that it was not a matter of IF but WHEN this scar tissue from the PSC would lead to cancer. Ken was then scheduled for a routine liver biopsy every three months until cancer was detected.
December 2004, April 2005, July 2005 Three additional liver biopsies were all considered benign but there appeared to be a progression toward the development of abnormal cells.
October 2005 Ken was diagnosed with cholangiocarcinoma - a type of bile duct cancer. It was recommended that he participate in the "Mayo Protocol" which involved radiation treatments, chemotherapy, exploratory surgery and liver transplantation as the only way to survive this type of cancer.
January 2006 Ken started radiation treatments and chemotherapy under the direction of the UW Madison Liver Transplant team.
March 2006 Exploratory surgery showed that a
spot on his kidney was renal cell carcinoma so half of that kidney had to be removed during this surgery. The finding of kidney cancer was unexpected and unrelated to the liver cancer. This surgery also confirmed that the bile duct cancer had not spread to the lymph nodes so Ken could remain on the liver transplant list!
July 31, 2006 Ken received the life-saving liver transplant at UW Hospital in Madison from a man who died in a motorcycle accident.
February 2007 Following a very rough recovery time, Ken eventually returned to work as the head pastor of the church he had been serving in Wisconsin.
August - December 2007 Unexplained, yet severe pain lead to hospitalization in December. Many tests were done looking for a cause of the severe abdominal pain but nothing could be found.
January 2008 A massive bleeding ulcer was finally discovered. Later it was determined that the ulcer was a result of the intense radiation treatments. It was recommended that Ken be evaluated for surgery to remove the ulcer. Surgery was scheduled and then cancelled because it was unlikely that Ken would survive the surgery. He was then referred to specialists to continue managing the severe pain.
July 2008 Pain management options reached a dangerous and potentially lethal level so surgery was rescheduled to remove the massive ulcer. It was determined that the risks of treating the pain were greater than the risk of dying in surgery. This surgery was incredibly difficult and lead to the accidental cutting of a duct in the pancreas. This lead to a series of complications that represented the beginning of an even rougher road. The pancreatic leak lead to a drain tube - which lead to a fistulla - which lead to many serious pancreatic infections, the placement of a central line for nutrition, and hundreds of days in the hospital over the next two years.
January 2010 Surgery was scheduled to try to repair the pancreatic leak. This surgery was cancelled because the surgeon believed that Ken would not survive the surgery due to the history of severe infections.
July 2010 Surgery to repair the pancreatic leak was rescheduled by a different surgeon. This surgery was successful and over time the number of pancreatic infections decreased from monthly to just a few per year.
December 2011 - December 2013 Ken averaged about six hospitalizations each of these years but still made improvements in the quality of his daily life. He was able to pursue hobbies, help with homeschooling and eventually serve as a guest preacher and Bible study teacher. In February 2013, Ken was called to serve as a pastor on a part-time basis in Central Illinois so our family made the move from Wisconsin back to Illinois.
January 2014 - June 2014 Ken began to have one infection after another which required multiple hospitalizations. So far he has been in the hospital in Madison more than 125 days this year. We know that his transplanted liver is failing from an aggressive re-occurrence of PSC. He was placed on the liver transplant list and is currently waiting for a second liver transplant.
As I finish this, I'm thinking this is still a brief overview although it does not look like one! Many details and stories are left out but I figure if you read this far it is because you wanted to know the story. I still hope that sharing this helps in some way. When I write more in the future, I pray that the real help comes through the life lessons learned and the encouragement that we can offer to those in any circumstance.
As we continue down this path we really do know the end of this story. It is the same ending for every one in our family. Our prayer for you is that you too know the end of your story!
For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor
height nor depth, nor anything else in all creation, will be able to
separate us from the love of God in Christ Jesus our Lord. Romans 8:38-39
