About five years ago my wife Lisa was diagnosed with liver cancer. She is a Korean adoptee, born with hepatitis B. When Lisa was diagnosed, we visited a gastroenterologist with Adventist Health here in Portland. At our meeting he went over her condition and recommended the only cure was a liver transplant. He said there is a program at OHSU, but it was not active. He recommended getting into a liver transplant program in San Francisco, or Seattle at Swedish Hospital or University of Washington. We were enrolled at Swedish. As we understood the hospital had excellent doctors and had just started a liver transplant program.
Lisa has been in good health. When we met with the doctors Lisa was rated as an excellent candidate for a transplant. We would go up to Seattle once every couple of months for tests evaluating Lisa’s risk that her doctors required to get her on the transplant list.
Ultimately Lisa was placed on the transplant list. We were told if the transplant occurs, she would have to live within 15 to 30 minutes of the hospital for several months to ensure if complications happen she could get the lifesaving care she needed. After this period we would be able to return to our lives in Portland.
This created a quandary for us. I work in Portland and would not be able to transfer to Seattle for the several months required for post-transplant recovery and return to my job. This would mean finding a place to live in Seattle. Swedish has rooms available for this purpose for which they charge rent. I may have been able to take a leave of absence to take care of her, but would not have had income. Without employment I have no health care insurance except for Tricare, which I enrolled in when I retired from the military. This would have put us into a tremendous financial bind.
One of the procedures Swedish proposed was the Trans Arterial C Embolism (TACE). It involved placing glass beads treated with chemotherapy drugs directly into the liver to starve the tumor of blood and destroy the cancer cells. We were assured this procedure had little risk and the recovery would be within two to three days. Very seldom did patients of the procedure suffer complications.
Lisa spent two days as an inpatient at Swedish. When we returned home, after five days she was suffering from incredible pain. I took her to the emergency room, and she was admitted into the hospital in Portland. She spent five days, and the doctors could not determine the cause of her pain. Lisa recovered after that hospital stay.
Lisa decided not to have the transplant when a liver became available. Several factors played into this decision. Lisa was in excellent health at the time. Why degrade her quality of life with a major surgery while she is in good health? Risks included not surviving the surgery, liver rejection, recovery period. If Lisa would have gotten past those hurdles, she would be taking anti-rejection drugs for the rest of her life which include immune suppressant drugs. These drugs would put her at risk for other diseases our bodies naturally protect us against, in addition increasing her risk for other cancers. How much longer would her life be extended and what would her quality of life be?
When Lisa declined the transplant, we had one more visit at Swedish. The doctors told us Lisa was still on the transplant list and if she changed her mind they would make it happen. In the meantime, it was suggested that we might want to get care in Portland rather than make the long drive to Seattle every several months. In my opinion, the message I took from this interaction was “Why waste your time and ours if you are not going to have the transplant?” I think Swedish was looking for successful candidates to advertise and increase creditability for their new program.
In November 2015 Lisa got sick, becoming bed-ridden and suffering from edema in her legs and abdomen. The tumor had grown and was occluding the vein that returns blood from her lower body, creating the edema. Lisa has not fully recovered from this episode.
Lisa was enrolled in the Providence Cancer Program. She had the flexibility to see western doctors in addition to Naturopathic doctors and traditional Chinese medicine doctors. Lisa believes in holistic treatment of her cancer, including spiritual health. These are major tenets by which Lisa has lived her life.
When Lisa had a reoccurrence of the edema, her doctors told her she was in end-stage liver failure. They recommended Hospice Care. Generally Hospice Care is end of life care. The goal is to provide home health care and whatever is needed to make the patient comfortable and manage pain. While in hospice care, the patient is limited to diagnostic tests that may extend life or, in Lisa’s case, treat the cancer. The model is based on what Medicare will pay. Although Lisa can come out of hospice and re-enroll as needed, I find the program is geared for patients that are never going to recover from their afflictions.
We have made the choice to be in hospice because the care meets our needs. We REFUSE to believe that the program is a death sentence. As such, it would seem insurance companies and government administrators of Medicare would come to a middle ground with hospice, providing diagnostic tests and treatment that can extend life.
This is our story from my perspective; please use this as you see fit. Please do not use my last name.