I thought I was lactose intolerant or something. I’d never felt such a horrible pain in my mid-abdomen, just below my ribcage, before. It seemed to be related to digestion, but I couldn’t find the trigger in one specific food – so I just gave up dairy. Being a vegetarian for six years was at an end; I was officially transitioning to veganism because that seemed to be what my gut wanted (and also I don’t like eggs). And it worked, for a while. I didn’t feel that strong strange pain until I tried the Impossible Burger with my friend. It was the fattiest, juiciest, most meat-like vegan burger I had ever experienced, loaded with tons of coconut fat to imitate the fat of meat, and it sent me to the E.R. on July 21st, 2017 at 3 a.m. where I was diagnosed with gallstones.
Gallstones in themselves aren’t really scary; they are lumps, sometimes of fat but they can consist of other materials, trapped in the gallbladder, and the most typical way of getting rid of them is to remove the gallbladder. Gallbladder surgery is, in the U.S., one of the most common procedures done. In fact, many people live with gallstones and have no problems at all and don’t notice their condition because the stones are small and pass through the bile duct easily. Pregnant women and people who lose weight are often confronted with larger gallstones and have the laparoscopic surgery done usually about a month after their diagnosis. No, gallstones aren’t the problem – as long as one acts swiftly. It’s living with gallstones or their passing that can induce danger through exiting the gallbladder and damaging other internal organs like the liver which manifests in jaundice (or the yellowing of the skin, eyes, and darkening urine) and can lead to death. Gangrene is also a danger for a gallbladder that becomes infected because of gallstone damage.
Equipped with that information, I applied to Obamacare through the Covered California website on July 22nd, 2017 and was told that, as a low-income worker and student, I qualified for Medi-Cal, the free component of state health care here in California. I’ve had Medi-Cal before and have tried many times to renew it to have some sort of medical coverage, but the social worker I was assigned never answered their phone and any number I called rang for 10 minutes before it disconnected, never connecting me to an actual person. While I tried, I didn’t treat my attempts as a life-or-death situation because before I was diagnosed, it really wasn’t a life or death situation. Now that it was, I renewed my efforts to be covered once again. I filed my Medi-Cal application and indicated that it was for previous emergency services and for a surgery that needed to be done soon, or else my life could be at risk.
And then I waited.
I got mail from the State of California indicating that I should update my address for voting.
I got a letter from the IRS stating that my 2015 taxes had to be adjusted because of a debt forgiveness – information found when Social Services was evaluating my Medi-Cal application. Information they passed the IRS.
I got a letter from Covered California reminding me that I qualified for Medi-Cal.
I got three more letters from Covered California reminding me that I qualified for Medi-Cal.
I got no letters, no phone calls, and no emails stating that I had been approved for medical insurance to have the surgery that I needed while gallstones solidified in my abdomen. I tried calling the local Social Services office only to find the same pattern again and again: I’d wait on the line and get disconnected. I went in person only to find that the person I was supposed to see wasn’t there – and I missed a day of work, and a day of pay, in order to do that. I couldn’t afford to do that again. I called the state hotline for Social Services and was connected to my local office, which yet again hung up on me. I decided to try to go to the doctor’s office on my campus to see if there was anything they could do or prescribe that could help me while I waited to navigate the medical system so I could survive until I could see a surgeon; there was nothing.
I tried for two months. It was now September and my birthday. My coworkers took me to my favorite vegan place for lunch and surprised me with one of their cupcakes. It wasn’t dairy, so I ate it – along with it’s frosting which was made up of sugar and coconut oil. The coconut should have given me pause but I honestly didn’t think about it until the cupcake landed me in the ER three days later. In my first visit to the ER, the doctor had told me that painful gallstone attacks could last for days – so if I was in pain for a few days, I should just take some pain medication and wait it out. I would only need to go back to the ER if my skin or urine turned yellow to indicate that my liver had been damaged.
This next attack wasn’t accompanied by yellow skin – but it was the worst one yet. It struck me in the afternoon the next day while I was in a professor’s office, discussing the work I was doing on my thesis paper to complete my Master’s degree. I was out of breath and I sat there, zoned out, while he spoke. I excused myself and said I wasn’t feeling the best and I drove myself home and took some aspirin before trying to sleep through the pain. It didn’t subside the next day – I stayed home, without pay, that Friday. I couldn’t keep food down and I couldn’t keep water down. When I tried to take more pain meds, I couldn’t keep those down either. I tried to do what the doctor in the ER said and I waited it out. I wasn’t yellow. I was fine. I kept telling myself that.
On September 30th, we had our local chapter’s meeting and I was the secretary. My best friend and chair of the chapter drove us, and I couldn’t believe the amount of pain I was in while he was driving. Pressure on my back made me feel like I was going to vomit, pass out, and cry. When we arrived at Casa Ontario (a 10 minute drive from my best friend’s house), I had to run to the bathroom to vomit up bile and did my best to act normal while we proceeded with our meeting. Because I hadn’t been keeping water down, I was starting to get dehydrated so when my urine started turning dark, I wasn’t sure if it was a sign of jaundice or a lack of water; my skin wasn’t yellow, I didn’t look like a Simpson’s character, so I hesitated when my friend offered to take me back to the ER. That night when I drove myself home, the pressure from the car seat yet again on my back made me feel horrible, and I decided it was time. I couldn’t wait this out. I wasn’t yellow but I did feel like death and it wasn’t something I could manage on my own. Without my emergency medical care being in place, I was afraid of the hospital bills that were to come but I still wanted to be alive to have to face them.
I saw two doctors that night in the ER; the first prepped me for surgery by giving me an ultrasound to check on my gallbladder and liver, as well as an EKG to make sure my heart was strong enough for surgery at the moment, and the second said I probably had a UTI, gave me some Norco, anti-vomiting meds and antibiotics, and sent me home without looking at the results of my ultrasound while the first was on her lunch break. I had also asked for non-addictive pain medication when they asked – ultra strength Tylenol or something, because of my parent’s addictions and strong indications that I also had an addictive genealogy. When I looked up what Norco was, I was pretty upset (it’s generic Vicodin, a highly addictive and controlled substance). I went to school the next day and did a presentation in class while trying to act normal through the pain. I couldn’t drive on Norco and I couldn’t miss class, so I had no other choice really. I took the anti-vomiting meds and some over-the-counter pain pills and it was enough to get me through my work and school day.
I decided I couldn’t wait for medical insurance. Yet another reminder from Covered California came stating I qualified for Medi-Cal. I called a hospital up the street from my house to see what options I had as I hadn’t been approved for Medi-Cal yet and they made me an appointment and said we’d figure out my Medi-Cal. I went in October 5th and was told I couldn’t be seen by a doctor. I did have Medi-Cal, only Medi-Cal had never contacted me and told me such; they had assigned me to L.A. Care, a medical provider, which made my medical group some random place in La Habra, over an hour from my home. My contact information and address was listed on my emergency medical application, so I really can’t figure out how or why I was assigned to a place so far away and why I was never provided with this information to begin with. The receptionist at the front desk then did something for me no one else had in three months time: she gave me my medical insurance number and information on my provider so I could contact them and find out what I had, change my insurance location over to someplace closer to where I lived, and get moving forward on my surgery. I thanked her, profusely, and said it was okay that I wouldn’t be seen today – she made it possible for me to be seen in the future.
I called LA Care that day and found I couldn’t switch my provider over until November 1st because I had gone to the ER in the previous month; switching my insurance location over between billing cycles would leave me without coverage, and would leave me responsible for the ER bill even if I was insured. LA Care stated that the process was being moved forward, and if I had to visit the ER again, as long as I could walk myself in (no ambulances), my medical needs would be covered. An emergency gallbladder removal involves the entire abdomen and stomach being opened up, as well as the possibility of exploratory surgery if there’s damage to the liver and other internal organs. It was a much riskier procedure than the laparoscopic removal of a gallbladder which involved three small incisions, one through the bellybutton, and minimal time recovering. It was good to know that I could go to the ER without fear of the bill but frightening to think that I might need emergency surgery before I could schedule the laparoscopic one.
Come November 1st, my insurance was changed over and I made an appointment mid-November to see a doctor closer to my home. On November 16th, I was finally able to see a doctor. He pulled up my medical records from the ER and walked into the room where I was waiting; his brows were furrowed.
“How are you feeling today?”
“Alright. I’m just anxious to set up surgery before another gallstone attack.”
“Yes, I can see why. Your liver has been badly damaged.”
“What?” No one had told me that – the ER said I was fine and sent me home.
“Yes, your last gallstone attack blocked the bile duct to your liver. Your liver was extremely swollen and showed major damage in the ultrasound. The ER should have removed your gallbladder. You were in danger. You could have died going home.”
I sat there silently. I had felt like death; I didn’t actually know that I had almost died.
“You seem better now, so that’s a good thing. I’m going to recommend you get a surgical consultation right away. This surgeon is the best – call him immediately and set up your appointment. And, while we’re at it, let’s get some blood work done after your surgery to make sure your liver is healing alright.”
The doctor left to finish writing his recommendations while I sat in the room and looked at the floor. The nurse came in and told me the surgeon really was the best – and that she looked forward to seeing me next time for my blood work after my surgery. My appointment was over at 4 p.m. I sat in my car and called the surgeon’s office; no one answered, and there was no answering machine. I tried again in the morning and no one answered again. I tried a third time and made an appointment for December 4th. The appointment setter stated that, generally, surgery would happen within a week after I saw the surgeon – and, depending on the state of my liver on the 4th, could happen as early as December 5th.
I’m writing this on November 26th; a week and a day before my appointment with my surgeon and three months after I was first diagnosed with gallstones with a highly damaged liver that almost killed me two months ago. The most difficult part of this experience hasn’t been my health but rather my lack of access to medical care despite my best efforts. While Obamacare tries and Medi-Cal tries, the bureaucracy surrounding it literally takes up so much time that people end up dying. Obamacare is not enough – Medi-Cal is not enough. What we need is universal healthcare – not just in the state of California, but in the United States as a whole. A meme has gone around this week about an Ohio man who died because he came up $50 short on his fundraiser for insulin after being removed from his parent’s healthcare plan. People don’t die in the United States because of their health; they die because of a lack of access to medical care. It’s frightening for me to realize that I’m part of this statistic but what’s even more frightening is that these numbers are so high to begin with and are growing by the year.
This is my journey down the rabbit hole of healthcare and this is my rallying cry and call: every day that we don’t have universal healthcare people are dying. Lawmakers in California have tried to suppress the fight but we must fight on, not just in California but across the U.S. We need to pick up our picket signs, write and call our legislators, run more socialists on socialist tickets, and take back the system that would have us die from bureaucratic nonsense.