Thursday, July 31, 2014

A Second Chance at Life: Part 2 - "The Surgery"

As I recall the events that lead up to the liver transplant in 2006, I am amazed at how slowly the day progressed.  Prior to that day I imagined a phone call interrupting the normal flow of family life, followed by a mad rush out of the house into the van.  I could see us flying down the country roads onto the highway making great time as we drove across the state of Wisconsin, only to be stopped briefly by an empathetic state trooper who so kindly gave us a police escort the rest of the way. I expected a quick good-bye at the hospital as they rushed Ken off to surgery to receive the transplant.

Instead, we received the first call from the transplant coordinator at 3am, followed by a second call at 6am on July 30th.  We knew that Ken was in the top five on the transplant list so we already had most of our bags packed for the call, much like we did when expecting our children to be born.  Even though most things were ready to go we did not go back to bed after receiving the first call.  Once we got confirmation to start driving to the hospital we got in the van and headed south.
It was a rainy morning so logic set in and I decided to drive the speed limit because it made no sense to become an organ donor on the way to receive a transplant!  We made it to Oshkosh by 8am and the EAA Airventure traffic on the road was minimal, so we passed by the thousands of campers with no problem.

We arrived to the hospital by 10am.  We were met there by several family members and friends.  Then we hurried up and waited.  Ken was actually the fifth transplant of the day so he was taken at 5pm into the surgery.  We waited in the surgical family room all night.  Around 2 am on July 31, I received a phone call from the operating room that the transplant had just taken place!  So this is the day that actually marks the eighth year anniversary of Ken's first liver transplant.

Wednesday, July 30, 2014

A Second Chance at Life: Part 1 - "The Call"

The next two days represent an unusual anniversary for Ken but I decided to share this story in memory of the events that took place eight years ago.

Ken was diagnosed with a liver disease  known as primary sclerosing cholangitis in the Spring of 1989.  This diagnosis came about a year after he had graduated from high school and just weeks before we got married.

Nearly 17 years after the original diagnosis, Ken was then diagnosed with cholangiocarcinoma - a type of liver cancer in the biliary tree.  About 10-15% of people diagnosed with PSC will also be diagnosed with bile duct cancer, which is normally fatal within six months.

In the 1990's, Mayo Clinic developed a protocol that would open the door for liver transplantation for some people diagnosed with cholangiocarcinoma.  Otherwise, this door was not an option for this aggressive type of cancer.  Ken began the "Mayo Protocol" at the beginning of 2006.  He had to receive aggressive radiation treatments as well as oral chemotherapy for about two months.  He then underwent exploratory surgery to check for metastases before being placed on the liver transplant list.  This surgery showed no spread of the liver cancer, but did reveal a type of kidney cancer.  (A story for another day.) Ken was officially placed on the list and continued to receive chemotherapy while waiting for a transplant.  According to the protocol, the liver transplant needed to occur by the end of the sixth month of the protocol.  Ken was granted exception points for his MELD score in order to increase his chance of receiving a transplant in time.

On the last day of the six month of this protocol, we received a phone call from Ken's transplant coordinator that a liver may be available for him.  This call came at 3am but we were asked to wait for another call before actually driving to the hospital.  

Interestingly, we had prayed that Ken NOT receive a call for the transplant on this weekend.  We had a guest from out of state so we were hoping to enjoy the weekend visiting with her.  We also did not want to be caught up in the traffic from the EAA Fly-In in Oshkosh.  By 6am we had received a second phone call telling us to drive the four hours to Madison for a probable transplant.  

As it turned out, it was a huge blessing to have a guest at this time because we were able to leave the kids at home.  Ken said good-bye to each one knowing that he may not see them until after the transplant.  They were 12, 11 and 7 years old on this day.  

We did not know anything about the donor for Ken's first transplant for nearly two years.  In 2008 we did receive a letter from a wife who had lost her husband tragically in a motorcycle accident on July 30, 2006.  On this day we remember the gift that this man gave to our family by being an organ donor. Because of his gift, Ken received a second chance at life.

Tuesday, July 29, 2014

Are You Having Safe Fun?

Ken officially spent the first half of July in the hospital.  We expected the last trip back to Madison to be a short one designed to tweak his electrolyte imbalance, but it turned into a week long stay.  We were then home a handful of days before needing to go to a local hospital, which resulted in another week long stay away from home.  As we hung out at the UW Transplant Unit during the 4th of July weekend, we could not help but notice the greatly increased helicopter activity! 

While we do not know the reasons for all of the helicopter landings, we do know that a lot of people were NOT having safe fun.  We also know that there is a strong correlation between the increased travel to Wisconsin in the summer and the number of transplants that occur during this time. 

As I finished up this post we heard another helicopter landing on the pad nearby.  That makes it more than a dozen landings so far today.  We sure hope you all are having SAFE FUN this summer!