**Extremely long post!!
As some of you know Steve was admitted to the hospital shortly after having a bile duct blockage removed back in March. What we thought was a procedure induced bout of pancreatitis turned out to be much more serious. He was fighting a few infections, most likely caused by the blockage and was diagnosed with an autoimmune disease -
Primary sclerosing cholangitis or PSC (a long-term progressive disease of the liver and gallbladder characterized by inflammation and scarring of the bile ducts which normally allow bile to drain from the gallbladder.)
He was in ICU for 3 days due to the infections and his liver function being low. During his 2 week stay at Delnor he had 2 sugeries and was receiving 3 different IV antibiotics to treat the infections. He was then transferred downtown to Northwestern Memorial.
Once downtown he had a team of Drs taking care of him. He stayed there for 7 days receiving more IV antibiotics and undergoing 3 more surgeries. The surgeries were to place stents in his bile ducts, drain the excess bile that had built up and was not draining and do biopsies of the bile ducts and liver. Thankfully once the infections cleared his liver function returned.
After spending a month in Hospitals he was so ready to come home. We were feeling pretty confident things were on the mend.
Then we got the call. Yeah, THAT call.
They found cancer cells in the liver duct biopsy. We never expected to hear that news. We were devastated.
A few days later Steve spiked a fever of 103 and I took him
( very reluctantly to the ER) He had been off the antibiotics for 10 days and the infection was back. More IV antibiotics and another 5 days in the hospital. He managed to not have to be transferred downtown again even though the Drs at Delnor were pretty insistent. They only let him go home because he was scheduled to see the specialist in a few days.
Since then he has been inundated with a Drs, tests, information and lots and lots of blood work. ( 23 vials in one sitting!)
He has been told that the cancer was caught very early but that due to the severity of PSC he needs a liver transplant. As long as the cancer does not spread he can be approved to be put on the liver donor list. He is in the process of getting all this testing completed by the end of this month.
He met with the Oncologist and Radiation Drs and plans are underway for him to receive chemo and radiation for 4 weeks. Chemo will be Mon -Fri via IV port and radiation will be 2x a day, Mon -Fri. Unfortunately even though we have the proton center in West Chicago and several cancer center near us because of the rarity of his cancer and the complications of the PSC he will need to have treatment downtown.
The Drs are very optimistic that this protocol will be successful.
Once cancer treatment is done and he has been given the “all clear” he will stay on oral chemo until a transplant can be found.
After recently reviewing his case the Drs believe his best bet for a liver transplant will be from a live donor. He just isn’t “sick” enough to be high up on the list. And he is currently not eligible for a cadaver donor.
Our lives have been turned upside down. All our plans are on hold. Only one thing matters and that is Steves health wan well being.
Yet I am thankful for so much-
I am thankful for the foresight of the Delnor Drs to transfer him downtown. Even though we were very reluctant.
I am thankful for the Chicago Drs thoroughness in testing and that the cancer was caught very early.
I am thankful that the procedure caused pancreatitis. Otherwise we may not have discovered the PSC or cancer until it was too late.
I am thankful for the niceness and genuine concern from all the hospital staff. From the Administration to the Housekeeping Staff. Healthcare is not an easy job!
I am thankful that I am home ( yes, I’m still on disability due to my arm/nerve issue) and able to be with Steve every step of the way.
I am thankful for Steve’s optimism and ability to still laugh through these dark times.
I am thankful for YOU! Your support and love will make this road easier. Knowing you’re right there cheering Steve on will bring a smile.