My mother was diagnosed with Breast Cancer in November of 2010. Luckily the cancer was detected early enough that her treatment and recover were relatively low-risk of recurrence. The surgeon performed a quick lumpectomy, which meant that she did not go through chemotherapy, but she did have to go through radiation treatment. This allowed my mother to continue working during treatment, which included taking a medication called Tamoxifen to prevent the Breast Cancer from coming back.
Throughout her treatment for breast cancer, she started getting more and more lethargic, making it more and more difficult to stay get through her days at work.
On a routine visit to her primary care physician, she mentioned that she bled a lot when she had a cut. That prompted the doctor to do some blood tests. Shortly after the blood tests he forwarded her results to the oncologist to check to see if the Tamoxifen had been causing bleeding. The oncologist ordered more blood tests and an ultrasound. The ultrasound showed signs of Cirrhosis of the liver. The oncologist also referred her to a Gastro Intestinal doctor.
The GI doctor finally diagnosed my mother with Fatty Liver Disease then ordered a biopsy, which confirmed that she had Cirrhosis. Fatty Liver Disease seemed like an unusual diagnosis, because my mother almost NEVER drank alcohol. More specifically she was diagnosed with Nonalcoholic Steatohepatitis (NASH) and Cirrhosis of the Liver. Basically, the worst possible combination on the spectrum of Nonalchoholic Fatty Liver Disease (NAFLD)
So where did her NAFLD come from?
We don’t know. It could have been from obesity, a lifetime of eating processed foods with high fructose corn syrup, even from the drug that was designed to save her from breast cancer. It could also be genetic… but we will get to this later. All we know is that her state of well being had been severely compromised. She decided to retire from work, because she could not handle the general lethargy from both recovering from Breast Cancer, and now dealing with a debilitating liver disease.
Unfortunately, her retirement ended up fraught with further health issues. I have watched as my own mother’s health has eroded extremely quickly in what should have been a nice relaxing outro from the working world. She ended up on the first name basis with most of the ER staff at the local hospital having to visit the ER nearly 5 times in less than a year.
In April 2013, my parents took a trip to Florida to visit relatives and relax a bit. Unfortunately, the trip was less relaxing and much more scary, when my mother disappeared in the lobby of the hotel, only to be found 30 minutes later in the gift shop incoherent, shakey, and disoriented. My father immediately drove her to the Emergency room where the staff initially diagnosed her with a TIA stroke. After spending the next 3 days in a hospital bed in Florida, the doctors finally attributed the TIA-like symptoms to extremely high levels of ammonia in her blood, which were likely caused by her malfunctioning liver.
In June 2013 my mother spent an entire night awake, vomiting blood, once again caused primarily by her malfunctioning liver. In one procedure called Paracentesis the GI doctor removed 7.25 Liters (16.5 LBS) of liquid from her abdomen. This is extremely dangerous, as it dropped her blood pressure to an extremely low level, which could have caused her heart to stop completely.
In August 2013 my mother started feeling discomfort from the scarring from her initial breast surgery and requested that the surgeon go in again to remove the scar tissue. After the scar tissue had been removed my mother had a hard time healing the new wound. This inability to heal wounds is one of the many side effects of a severely diseased liver. It took 6 months to fully heal a wound about the size of a quarter, about an inch deep.
My Mother should be enjoying her retirement, instead she has been resigned to sleeping nearly 12-16 hours a day, unable to stay awake long enough to enjoy a full day-trip. I have watched her go from being a vibrant, happy mother, to a frail, shell of her former self. On advice from others, my mother sought a second opinion on her Liver diagnosis, and paid out-of-pocket to visit UCSF’s Hepatology Department for an evaluation.
Her liver was unhealthy enough that we know she needed a new liver, but the process of getting a replacement does not happen over night. But here is where the story takes another tragic turn. In order to be listed to receive a transplant, you are required to be 5 years cancer free. I understand the reason behind that rule: if you have any remaining cancer, then you will most likely die from the cancer before dying before dying from a diseased organ, and receiving a donated organ could cause the cancer to spread to the new organ.
October 30th, 2013, I had one of the first opportunities to visit my mother’s Hepatologist at UCSF, who brought up the possibility of a Live Donor Transplant. She also mentioned that UCSF had recently relaxed their policy regarding certain types of breast cancer, which my mother qualified. My mother passed along her breast cancer biopsy results. After discussion with the head of the transplant unit, it was determined that the chance of the breast cancer coming back was small enough to qualify my mother on the transplant list.
After undergoing a few more rounds of tests with her healthcare provider, my mother was finally deemed eligible for a liver transplant. After nearly 3 years of suffering, my mother was finally listed on the Northern California deceased liver donor transplant list.
So here’s my chance to give my mother what she gave to me; The gift of Life.