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This entry is dedicated to my dad.
During a visit to the doctor in October 2011, a “spot” was found on his liver. After months of tests and procedures it was confirmed: Liver Cancer. He was seen and treated by an oncologist in Las Vegas, NV. Many options were considered however, they would involve a transfer of care to a facility that would be able to accomodate greater options. With the limited resourees available in Las Vegas, doctors would have him procede with the first procedure a chemoembolization.
While in Vegas, dad’s oncologist referred him to a liver specialist from UCSD. This satellite clinic was fairly new and proved to open wide doors. Moving forward to April 2012, our first appointment on the UCSD campus. The verdict? Tumors found in the liver most often grow in places that are not easily removed through surgery.The ultimate plan was liver transplant. Once on the list, one may receive a call immediately, or not for several years. Most LT patients wait about a year before they receive a transplant. So, 2 things to focus on: get on the list and procede with treatment while awaiting transplant.
Patients are placed on a transplant list after thorough evaluation. Patients list placement is determined by their MELD score. The transplant team thought it best to down-stage the tumor. In comes the intervention radiologist and Yttrium-90 was introduced to us. This process involved blocking all vessels supporting the tumor except one (TARE). That last vessel would then be filled with Yttrium-90 and eradicate the cancer. Sounds pretty good, right? Only thing is that it also affects the surrounding tissue in the same manner.
The first TARE attempt was quite successful. However, just as his doctors had suspected, the tumor was receiving nutrients from more than one vessel. A second attempt was made and 99% of the tumor was affected. The team, however, wanted to procede with treatment until 100% was removed.
Reflection of all treatments will show us that dad would go on to have a total of 5 procedures directly aimed at this tumor.
Another requirement to maintain on the transplant list is thorough follow–ups. The team needs to make sure that your body can withstand the transplant surgery as well as the recovery.
Needless to say, there were many trips from Vegas to SD. The many trips also allowed opportunity for different family members to accompany dad: 3 sisters, 1 brother, 2 daughters and sons-in-law, and yes, even the 6 grandchildren…although they enjoyed the comforts of the lounge and gift shops.
This new life of traveling back and forth for procedures and check-ups almost seemed routine. The holidays were spent with most all of the Pakilit Clan under one roof. The new year continued with visits and check-ups.
You may wonder, “How did all this treatment affect ones body?” For the most part, all systems were a still a go. While most ailments were fought off by medication, fatigue was one of the main villains. Another feud to battle was the increase of pressure on the pulmonary artery. Through careful evaluations, the pulmonary and cardiology teams continued to give their blessing.
Dad was scheduled to receive his 5th procedure, a transarterial bead embolization (TABE). On June 13 he checked into UCSD Hillcrest. This procedure would require overnight observation. Everything went as planned, and dad was discharged early afternoon Friday.
Lynne was driving Dad back to Loma Linda where he would stay the weekend to recuperate before heading back to Las Vegas. Trivedi’s would join us on Sunday for Father’s Day. As they were approaching Murrieta, they got the call that a liver would be available. Ironically, it was coming from Las Vegas.
With no hesitation, they turned the car around and would check back in to prep for surgery. Notifications went out to the family and before sunset, all those in the southern Cali area were at his bedside.
Despite all the preparation, no promises were made. The liver still had to be inspected by the procurement team, withstand transport, then re-inspected by the transplant team. The liver would arrive 10 minutes prior to surgery; which was schedule at 0400 Saturday June 15, 2013.
The surgery routinely takes anywhere from 3-10 hours. At 0410 dad was wheeled out of his room and to the OR. We would find out later that the new liver appeared better than anticipated and would also provide a replacement artery to one that had been scarred from numerous procedures.
There is no telling how one will respond to a transplant. Various factors include past medical/surgical history, response to prior treatments and current state of health. Pre-op doctors informed the family that dad would require breathing assistance through a tube down his throat (intubation) while he was asleep during the surgery. Without any guarantee, they also said he would probably need breathing assistance for the first 24-48 hours.
Amazingly enough, we were all able to visit dad in the ICU–grandkids and all. Dad arrived in the ICU between 11:30 and 12:30. Lynne had been at the hospital and was the first to see him once he was settled in his room. But by mid-afternoon, the bunch was able to visit him in small groups. Dad was doing so well, he didn’t need the breathing assistance!
Post-op Liver transplant leaves you with many goals: breathing on your own, drinking fluids, eating solids, sitting up in bed, sitting in a chair, taking steps, walking down the hall, tolerating all the new medications, and just making sure all body systems are adjusting and getting along with each other. Most complications occur within the first 72 hours. But dad was progressing as steady as possible.
Before we knew it, dad was transferred to a “regular” unit and was 1 week post transplant. Patients are usually discharged 10 days after the surgery.
The week marker included a reunion of the Pakilit Siblings. With 2 of the siblings in different regions of the globe, this was definitely an infrequent occurence. Day company was kept with the siblings, while Amber and I held daughter duty Friday and Saturday night. It was the least we could do to provide Lynne some time to sleep in a bed, do some laundry and eat something other than hospital cafeteria food.
Speaking of which, while Dad, Amber and I had movie night, Amit and JD corralled BT kids and made dinner set on fine china. Talk about Superdads in the works!
Monday would hold a regular work day for the family, but for dad it was DISCHARGE DAY!
Home Sweet Home…sort ofJune24
In the first several weeks after discharge, dad is to visit USCD for follow-up labs/exams/medications/etc. FOUR TIMES a week! Many of UCSD transplant patients come from afar. To make the trek easier, UCSD Bannister Family House has open doors that provide a welcoming place to stay. Given the unexpected timing, it was not a surprise that the House was full. Dad and Lynne had been on the waiting list since it was known that the transplantation would take place. However, the next available room would not be until July 2.
One of the perks of having family that travels for work is that they quickly accrue hotel points. Amber and Amit were able to provide a few nights at a hotel close to UCSD.
2 weeks Post-transplantJune30
getting my walk on
Babysteps to recovery have now become larger. The Trivedi’s were able to visit and noticed a large improvement since the previous week. Dad was even able to get up and answer the door. His pain has been improving so much that he even forgot to use the cane.
First Post-transplant Holiday…Happy Birthday America!July4
Fun, food and family. Hosted at the Trivedi’s, we hung out, ate good food and played with pops and poppers. To help kids keep still for photos, we prompted them to sing the National Anthem.
Bannister Family House
A temporary new routine is finally setting in. The view is a great one and the summer temperatures of San Diego county are quite enjoyable.
room with a view
Pakilits: Dodong, Abner, Morie, Dely, Ily
using just a cane
July8: improving results and no more cane!
my living room in Bannister House...I do believe in Miracles
July 14: everyday is a step forward
Thank you for sharing our story…
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