In 2014, while almost three years into end stage liver disease and recovering from c.diff (clostridium difficile colitis for those imbibing their daily Latin) it’s transferred via fecal-oral, so when someone doesn’t wash their hands making food, and unfortunately it dries ya out distributing one’s contents most expeditiously through the major available routes.) , I was in a strange space. I knew that the end might be coming soon, and when I was told that if my vitals (my INR was almost okay but my Bilirubin was stupid high) didn’t improve, I would likely be brought to the liver transplant floor at my other hospital.
I remember not being allowed to leave the room except with another person with me, I remember walking with a friend of mine, who had a heart condition, and together with another spoonie friend with severe lupus we called ourselves “lifers” due to our likelihood of shortened lifespans. I was diagnosed with Hepatitis C at age 12 and told by 30 I would likely need a liver transplant or die. (And he was pretty freakin’ close.)
I saw my reflection in the glass in the garden I wasn’t allowed to go into. It was distressing visualizing the reality of my more imminent potential demise.
We spoke of the fear, of the reality ahead, that I would likely wait for weeks in the hospital, in this situation. I wasn’t quite dying just yet, but my liver’s Model for End-stage Liver Disease MELD Score had jumped into the 30s. which meant I was nearly a candidate for liver transplant, and my liver would soon need replacement. There were no guarantees, a person dies every ten minutes waiting on the transplant list in the United States. (btw register to be an organ donor today, save a life or 8 donatelife.net)
I didn’t entirely know what to do, and when my friend left, I started looking for solutions. Being a patient for as long as I had, and having just started writing about my experiences, I felt it important know everything in power about my condition, so that I could better explain the road ahead to others. So that night, I researched, I had found that bilirubin was not only the primary reason for my Simpson’s skin tone I was rockin’, but also my constant itching. And more importantly I’d learned that when babies are born and have high bilirubin or show jaundice, they put them under a UV/Sun lamp, because it helps break down bilirubin. That had to be it. My INR(clotting factor) and bilirubin(liver stuff) had not budged since they plateaued on day three of my stay. But I was convinced I had found a solution. I spoke to the nurses, explained I wanted to go for a walk outside the hospital. It took an amount of conversation before they were amenable to my request, but with a CNA, I was allowed to walk around outside. Then later I repeated this, until I was walking outside for about 40 minutes per day during peak times of UV (10am-2pm for the curious), at 11am, and a little before 2pm. My bilirubin began to drop by day 5 in the hospital, and I was released on Day 7. My research had paid off, I was able to better understand the circumstance and ensure my own improvement. Something I could do for others with the hindsight of my experience, but this, helped me decide I wanted to learn how to research better. I wanted my Master’s In Public Health.
For the next two years, every doctor’s, outpatient procedure, hospital visit I had I absorbed everything, every question I could ask, every thing I could learn, and naturally, I would reflect my interest in earning my MPH. It also gave more meaning to my family’s and my exhausting terrible journey, it let me turn a stigmatized and debilitating disease, into a badge I wore with distinction. In 2016, when NoHep2030 Launched, it only further added to my new goal: Help Eliminate the disease which had nearly killed me and my mother. I found purpose.
2016 was a year filled with so much, from the launch of NoHep, to my advocacy efforts in Sacramento, to one of my best friend’s weddings, and unfortunately, not long after, I became too sick to treat. July 2016, My liver damage was too far gone, without a transplant soon, I would likely die within the year, and certainly by a years’ time. The stress and uncertainty that befell my family and friends were challenging, they would help me see that my resilience was bolstered by their own. I had accepted my likely imminent death, and hoped and persisted in living as best as I could. My mother’s guilt, wore heavy, and words can do little to describe the hollow feeling in my family of the grim reality ahead. But after years of grueling, waiting, in the beginning of December, my family received the best Christmas gift we could have ever wanted. I received a liver transplant.
After my transplant, I was to be on Disability and Medicare+Medicaid for about two years following the slow recovery. Disability has an amazing program called Ticket-To-Work, it allows the person who uses it to not only cover the cost of their education, but continues to pay the same disability and most importantly delays disability hearing until after graduation (Disability hearings are rarely won, of folks I know who have tried, two of twelve have been able to remain in the program.) This would have allowed me get my MPH, and get a well-paying job after graduation, and rise up out of the under-the-poverty line life of disability.
After my transplant my Hep C came back with a vengeance. It skyrocketed to over a hundred million, (for reference like 10 million is really high) and it would not be long until my new liver was reinfected. The treatment was quickly approved, though off-label, it was the only possible combination which could have solved my unique variant strain of Hep C. I’d suggested a similar combination of meds a year earlier, but had become too sick to treat before one could be attempted.
The treatment is its own story of chaos, denials, appeals, near lawsuits and a go-fund-me page, but ultimately I wouldn’t find out the result of the treatment until September.
During the chaos of my sixth treatment for hepatitis C, I’d also applied for the MPH program at Cal State University San Marcos, I spoke with my colleagues in patient advocacy and friend’s mom who had been a preceptor(people to look at candidates to a program) for SDSU. I was surprised to find out that my application to the program had been rejected. My letters of support were good, my essay was heartwarming and thoughtful, I was at a loss for why.
Until I remembered something. When I graduated CSUSM in 2009, I had a 2.89 GPA, high enough for the 2.5 GPA threshold of the MPH program. However, after I graduated, I worked for a School District for 39 hours per week. This was pre-ACA, so I had no option for insurance, and with a preexisting condition, losing my insurance meant, I could be denied health insurance and thus treatment, if I did not maintain my health insurance. With an economy in shambles, my only option was to continue going to school after work, halfway through my first semester I began my at the time second treatment for Hep C. It was brutal, and the long hours along with school would discourage my application to many of these classes. The resulting Ds and Fs on my record from this time, were now interfering with my ability to enter grad school. I’d explained the circumstance, and that my grades following my graduation do not reflect my ability as a student, but the necessity of my livelihood in a broken health insurance system. This wasn’t enough. In order to get into the program, I would need to expunge these bad credits. It would be impossible to hunt down the 10 or so likely adjunct professors from near seven years prior, I needed a better solution. I found one in academic renewal, by taking 30 new credits I could wipe out 30 bad credits and improve my Cumulative GPA.
While I’d lost a step, having been in end-stage liver disease for over five years, and living with hepatic encephalopathy for as long, I’d resolved that my experience at Community college would tell me if I were capable of doing what I’d dreamed of, earning my MPH, writing my book, and helping to eliminate Hep C. Classes took a moment to refamiliarize myself, I was able to cover school thanks to the California promise grant. I aced through community college, taking a few fun courses like Ceramics and genetics, and some more challenging ones like statistics and a social media marketing. But when I’d applied again, my academic renewal had not yet gone through, causing the same rejection from the school, which would postpone my entrance until 2019. Each time I applied I added more recommendation letters, and referenced more of the advocacy work I had been doing during this time (I was working for Help4Hep, writing for Hepmag.com and HepatitisC.net, had started working for UCSD as a patient stakeholder, and was doing a lot of public speaking.)
In 2019, a few months into my new job, I was accepted into the MPH program at CSUSM. I was elated, finally, I could take the first step I’d been wanting to take to help join the fight to eliminate Hep C.
So it turns out working full time, and doing an accelerated masters program at the same time, is a quite time-intensive and stressful. Doing this during the pandemic, was even more challenging, let alone when my thesis topic is the pandemic. Between the panic attacks, depression, shoulder dislocations, optical migraines, a bout of cellulitis, my thesis Chair having to go out on medical leave a month before my defense, the process itself is also a story for another time. But regardless of all of these things, healthy pacing and preparedness, and peer support helped me carry on.
On April 28, 2021, I successfully defended my thesis. (I can’t show ya it though, I emgargoed it, so I can publish it.) and on May 22nd, I will begin my renewed birth in life.
But I am most excited to share with the world, the good I can do.
I hope to help change how we see patient advocacy. I hope to empower thousands of folks when I am done.
Just as I did in my life before transplant, as a leader of a grant-based 6 to 6 program, and eventual consultant. I do not aim for the moon, I aim for the community I serve.
A Chronic perspective 