- J
Welp, our story has taken quite a turn. And for time and space she, I'm only going to update from the last week.
Just the short back story, the liver transplant at UCLA was unable to happen because they found prostate cancer and he had 30 rounds of to cure that last summer. He was actually released fully from the cancer center on 08.24.23. They no longer will monitor him. He only needs to be monitored by his PCP.
He's had upwards of 60 ERCPs with his biliary stents changed. He can barely go 4 weeks without getting infections. However, this last time, 08.09.23, that were unable to change his stents due to a stricture at the douadenal entrance (stomach). So he's had the same stents in now for 7 weeks.
Friday, August 25, 2023 we had an appointment at Stanford for another liver transplant evaluation. We all came, Efrim, Corey and I. Efrim was immediately transferred to the ER from the appointment and admitted. Sunday we found out he has dementia and that his confusion is not all liver related. That automatically disqualified him for a transplant. Then came the bad news. The mass that was originally found 08.07.17, has spread from his liver to his colon and bowels. They believe that it is the original diagnosis of Cholangiocarcinoma.
Today (08.29.23) they were doing many tests and procedures. One being another ERCP to see if they could change his stents. They were unsuccessful. They did get biopsies from the douadenal stricture.
When he was recovering they believe he aspirated. Whatever happened, his oxygen dropped and they intubated him. While trying to transport him to the ICU, his BP also dropped and he coded.
They have him stabilized at the moment in a medically induced coma. We will be finding out the extent of the damage tomorrow. Even if they are able to get him off of oxygen and everything, we will still be dealing with the necessary removal of the stents, the dementia and the masses/cancer.
We have been traveling from Stockton to Stanford, staying a few days then going back to Stockton for a night then back here for a few nights.
I have no idea how long we will be going through this.
Tomorrow we should know more and the extent of damage this has caused. Even if they are able to get him back to where he was before he coded, we will still be dealing with trying to get his stents out, the dementia, and the masses/cancer.
That is our current situation. If you want to know more or have questions, feel free to reach out to me.
Here is his timeline (and if you have any questions about any of this, please feel free to ask ):
08/07/17 - Efrim was diagnosed with Cholangiocarcinoma, bile duct cancer.
08/23/17 - First surgery to place stents and biopsy the mass.
Sept 2017 - Biopsies came back "consistent with malignancy"and his case was presented to tumor board. They confirmed the diagnosis.
Without boring y'all with the specifics, for the next 7 months he underwent 15 rounds of chemo and multiple surgeries. During this time he also was being fed through the port in his chest nightly, had 2 internal stents in his bile ducts and an external drain. He was able to have the external drain removed and started to eat on his own thus no longer requiring the nightly feedings, in August 2018.
March 2018 - Went to UCSF for second opinion. They had him tested for an autoimmune disease called IgG4 Cholangitis. His numbers were extremely high and so it was then believed that he did not have cancer, but an extremely rare autoimmune disease.
For the next year they tried numerous medications to help him. Nothing helped. He still had surgery every couple of months to change it his internal stents. They also did other biopsies throughout this time. Unfortunately by the end of 2019 he had been hospitalized 4 times for about 5 days per stay and his stent changes were becoming necessary every 5-6 weeks and then down to every 3-4 weeks.
2020 - Efrim now has 3 internal stents that need to be changed every 3-4 weeks. Even changing them that often doesn't keep all the infections at bay. In that year he had 8 pre-scheduled ERCP's with stent changes and 3 more emergency hospital stays. All his hospital stays include ERCP's with stent changes as well.
So far this year, 2021 he has already had 4 pre-scheduled procedures and has been hospitalized twice. Here is what his last 6 weeks has and will look like:
04/14/21 - ER visit and 4 day hospital stay with ERCP and stent change surgery.
05/03 through 05/05/21 - First appointments at UCLA for liver transplant evaluation. We met with the transplant coordinator, liver doctor, surgeon, oncologist, psychiatrist, nutritionist, social worker and he had a ton of blood drawn and a CT scan.
05/10/21 - Pre-scheduled ERCP with stent change
05/21/21 (Today) - Back at UCLA for a Lexiscan on his heart.
05/28/21 (Next Friday) - Back to UCLA for the 3rd time this month for a day of 6 appointments.
06/03/21 - Next scheduled ERCP and stent change.
Thank you for reading and keeping us in your thoughts and prayers.
Venmo = @Jamie-Brown-406
Cash App = $EandJ2Sweet
Zelle

