My health crisis, and its aftermath
This is not a tech article. It is the story of the three weeks a ruptured appendix put me in the hospital in 2018, and the years-long financial battle that came after. I share it because I think it matters.
This isn't exactly a tech-oriented article, but I thought it was important to share my story. There are two chapters I want to tell. The first is what happened at the end of 2018, when I spent almost three weeks in the hospital. The second is the battle with the institutions that make up the healthcare system in the US, a battle I am still paying for.
When my own appendix nearly killed me
It started with what I thought was ordinary stomach pain, and it very nearly ended in sepsis. Here is how those weeks unfolded, day by day.
It began with stomach pain at work after lunch. It felt like acid reflux, so I toughed it out, especially since it wasn't the first time. I have been known to eat far too fast and far too much at once. By the afternoon the pain in my sternum got worse than normal. I still toughed it out, but that night I vomited at least six times in two hours, after which I felt okay enough to rest.
The next morning I went to urgent care, still hurting in the same spot. The doctor gave me fluids by IV until I was rehydrated and the pain subsided, prescribed some anti-nausea medication, and sent me home.
For the next week and a half I had minor but persistent pain, roughly in the center of my abdomen. On a scale of one to ten, it sat at about a three, and it would not quite go away.
That morning the pain moved to the lower right of my abdomen and climbed to a five. I went back to urgent care, where my doctor told me to get a CT scan as soon as possible. I thought that was overkill for minor pain, but my mom convinced me to go to the hospital.
I drove to Gwinnett Medical Center in Duluth, and soon after intake into the ER I had my first ever CT scan. A short time later my ER doctor confirmed everyone's suspicion: I had an inflamed appendix that had perforated. Later I would learn it was more like it had exploded. So I settled in, got hooked up to IVs, and was scared out of my mind at the prospect of surgery.
For the first time in my life I had gone more than 24 hours without eating, though eating was the last thing on my mind as I was prepped for surgery late that morning. My surgeon hoped to remove the appendix laparoscopically, which would have meant a quicker recovery and discharge in a couple of days.
After multiple open incisions, a lot of poking around, suction, and two hours, it was done. I didn't know, because I didn't wake up until that night. My surgeon put it best: "It was a mess in there." He was fairly sure the appendix had actually ruptured on the very first day I felt the pain, just from how much infectious fluid was sloshing around inside me. He and several other doctors later said they couldn't believe I had gone so long with a rupture that bad without going into sepsis, let alone with a pain level of only five.
My lunch was upgraded to a full meal, some chicken and rice. Not long into it, something felt wrong. The severe pain came back, like the acid reflux from weeks before, but this time I also struggled to breathe. My nurse had me sit up in a chair until my surgeon arrived. He took one feel of my stomach, said "You don't look good," and was out the door before he finished the sentence. Six nurses piled in. They got me back in bed, sat me up straight, and told me I was getting a nasogastric tube.
I would not recommend the procedure. A half-inch tube goes up your nose, down your throat, and into your stomach so everything backed up in your GI tract can be pumped out. It was one of the worst experiences of my life. The cause was an ileus: my digestive system had shut down and backed up so badly that my stomach distended against my lungs, which is why I couldn't breathe. The fix was to pump everything out and wait for my system to restart. That meant an upgrade, or downgrade, to the ICU, hooked up to every machine they had.
Now I knew I would be there a while. They started me on TPN, IV nutrition, since I wouldn't be eating real food for some time. To deliver the TPN, antibiotics, and pain medication, I needed a PICC line: a catheter that starts at the top of the arm and runs through the veins of the shoulder, down the chest, to the heart. It lets several IVs run at once and gives a convenient place to draw blood, so I wasn't being poked all day.
So began the almost hourly slog of changing IV bags, emptying my pee pan, and emptying the JP drain that had been placed after surgery to draw off remaining fluid. The tube stuck out of the side of my abdomen and slowly filled with reddish, clear fluid that had to be emptied through the day.
For those keeping count: an NG tube pulling fluid from my stomach, a JP drain pulling fluid from my abdomen, a PICC line with two IVs feeding antibiotics and nutrition to my heart, heart monitors on my chest, and a pressure cuff that went off every 40 minutes. There is no other way to put it than pure hell. One of the few respites, besides sleep, was the on-time delivery of my pain medication, which with the PICC line went straight to my heart. I will just say that after feeling what those medications did, I had no trouble understanding how people become addicted to what they are given in a hospital.
Having met the criteria to leave the ICU, I moved back to the recovery suite on the sixth floor, still hooked up to everything but the blood pressure cuff. The NG tube became the bane of my stay, making it hard even to talk when so many people wanted to. It would be two more days before it came out. Even now I can still feel that tube pressing against the back of my throat, and the thought of it makes me cringe.
With the NG tube finally out, things started to feel closer to normal, as normal as a hospital gets. It was time to relearn the foreign task of putting food in my mouth instead of my arm. I honestly enjoyed every juice bottle, oatmeal bowl, and Jello cup, and as my meals were upgraded to something solid I would challenge anyone who frowns on hospital food, especially after not eating for nearly a week.
Unhooked from most of the machines, I could get out of bed. With a physical therapist's help I took my first steps in days, exciting and grueling at once. Over the next few days the walks got longer and the help dropped to none, which felt wonderful, except for the hospital gown still tied up in the back where I couldn't reach.
That morning I got the green light to be discharged. I could only think that I was finally free, though leaving didn't mean I was ready to train for a marathon. Recovery would take months, and this would not be the last time I found myself in a hospital bed. But for the moment I was going home to my own bed.
I have to say it: my experience could have been so much worse if not for the nurses who took care of me. Everyone was professional, kind, and sympathetic. There were too many to name, but I want to thank every one of them from the bottom of my heart for everything they did, and everything they had to deal with.
Recovering at home was good, even without the wide hospital hallways to walk, and my PS4 and TV helped make up for it. It was the same slog day after day, broken only by a visit to my surgeon's office to have 12 staples removed. Getting to take a shower for the first time in two weeks felt amazing too. Oddly, at discharge I was given only a painkiller and no antibiotic, but I made a point never to take a single pill, helped by the fact that the pain never went above a four. Then, a few days in, I noticed a temperature that kept climbing. When it broke 101 degrees, it was time to panic.
By midday it was clear I had to go back. After an excruciating six-hour wait in the ER at Gwinnett Medical Center in Lawrenceville, now Northside Hospital Gwinnett, the parent of the Duluth location, I was back in a gown getting a chest x-ray and another CT. The verdict: an infectious mass on my liver that had to be removed. This time it could be done laparoscopically, using the CT machine to guide a needle through my side to draw out the mass. It took 30 minutes, and after two more days of checks I was discharged, this time with a full course of antibiotics.
With recovery back on track, the battle for my health finally came to a close, and so far I have noticed no lingering effects. But then the battle for my financial health began, and dealing with those people was, at times, even worse than the whole time I spent in the hospital.
How to get billed $121,093 for a ruptured appendix
I have been blessed with good health for most of my life. I rarely go to the doctor, but I try to keep active insurance for exactly this kind of emergency. After Blue Cross Blue Shield pulled out of the metro-Atlanta market, I had to find another company. On a recommendation from someone in the healthcare field, I signed up with New Era, also known as Philadelphia American Life Insurance Company.
They focus on indemnity plans, which pay providers a fixed amount based on a database of procedures and services, typically in line with what Medicare pays. My policy would pay twice what Medicare pays, and if a provider charged less than the average, New Era would pay me the difference directly. The incentive is to shop for the most cost-effective provider, which is not something you can really do in an emergency. The plan also paid a fixed amount per day in the hospital, more for the ICU, and anything above that was mine to pay, no matter how large.
The idea is that hospitals gouge patients, so you negotiate the bills down. To do that, New Era partners with an organization called the Karis Group whose entire purpose is to negotiate bills down. That such a company needs to exist is a whole story on its own. The premiums were cheaper than any ACA plan, because the plan is not ACA compliant in almost any way: there is a maximum they will pay out, and no maximum out-of-pocket to protect the policyholder. It sounded too good to be true, and I figured I would never really need it. Then I did, and the bills started to roll in.
| Date | Facility / Provider | Original bill | Discounts | Insurance paid | What I owed |
|---|---|---|---|---|---|
| Oct 17 | Urgent Care Center | $960 | $350 | $140 | $470 |
| Oct 28 | Hospital Facility | $88,166 | $0 | $45,000 | $41,400 |
| Oct 28 | ER Doctor | $1,450 | $0 | $150 | $1,300 |
| Oct 28 | Radiology | $428 | $0 | $187 | $241 |
| Oct 28 | Urgent Care Center | $404 | $120 | $120 | $163 |
| Oct 28 | Physician Group | $400 | $169 | $100 | $131 |
| Oct 29 | Anesthesiology | $2,177 | $0 | $1,717 | $460 |
| Oct 29 | Surgeon | $1,745 | $741 | $1,004 | ($836) |
| Oct 31 | Medical Group CBO | $830 | $302 | $300 | $228 |
| Oct 31 | Radiology | $403 | $0 | $245 | $157 |
| Oct 31 | Radiology | $28 | $0 | $19 | $9 |
| Nov 2 | Hospital Group | $800 | $0 | $400 | $400 |
| Nov 3 | Hospital Group | $80 | $24 | $100 | ($44) |
| Nov 3 | Radiology | $28 | $0 | $19 | $9 |
| Nov 4 | Hospital Group | $145 | $61 | $100 | ($16) |
| Nov 19 | Hospital Facility | $20,190 | $0 | $6,000 | $14,190 |
| Nov 19 | ER Doctor | $1,479 | $0 | $160 | $1,370 |
| Nov 19 | Radiology | $428 | $0 | $187 | $241 |
| Nov 19 | Radiology | $34 | $0 | $22 | $12 |
| Nov 20 | Radiology | $518 | $0 | $315 | $203 |
| Nov 20 | Physician Group | $400 | $169 | $100 | $131 |
| Total | 21 bills | $121,093 | $1,936 | $56,385 | $60,219 |
So $121,093 was the total I was originally charged across 21 different bills. New Era covered just under half, which is exactly what they said they would, and there were even three instances where they paid me directly because a provider charged less than twice the Medicare rate. Still, the hospital and providers charged some outrageous prices, and I was left with more than $60,000 in out-of-pocket costs.
Negotiating my way down
With New Era's part done, it was time to negotiate, and New Era passed me to the Karis Group. I gave my Karis "patient advocate" all my bills and sat back, hoping for the miracles multiple people had promised these folks could work. What I got was months of silence, even when I asked for updates. Before I knew it, my two biggest bills, about $54,000 together, were turned over to a collections agency that began calling every day.
Once I told my advocate about the collections calls, he suddenly reappeared and said he had gotten 40 percent off if I settled that month. Oddly, the collection agency itself had offered me 30 percent. What I did not know was that this advocate was leaving the Karis Group, and that call was on his last day. His replacement said they might have done more if it had been worked from the start, but the hospital group refused to negotiate past that 40 percent.
Here is where I landed. My two biggest bills, with the 40 percent discount, came down to $32,790. My other bills, scattered across random collection agencies, mostly settled for 30 percent off and added up to $3,864. The catch was that the discounts only applied if I paid in full, or I would get nothing and be stuck with the original $60,219. So I took out a personal loan for $36,654 at 6.5 percent, which I will be paying off for years.
What I learned the hard way
The unfortunate truth is that until someone forces medical bills into line with reality, a legitimate major-medical policy is the only thing standing between an individual and the kind of debt that pushes people toward bankruptcy. It is naive to think that letting hospitals and insurers keep working together the way they do will somehow lower bills, because it obviously will not.
To protect yourself for now, get a real major-medical plan. I am now on an ACA-compliant plan with an $8,000 out-of-pocket maximum in network and $12,000 out of network. That is still a lot of money, but if a similar emergency happened again, the most I would have to pay is $20,000, about $16,000 less than what I ended up owing under my old New Era plan. I will never trust an indemnity plan again, and I would never advise anyone else to get one, no matter how good or how cheap it sounds.
The last time I spoke to a New Era broker and told them what happened, they said they now offer plan "extensions" that protect you from hospitals overbilling. Of course those extensions cost extra, which makes the plan even less competitive with a real one, and they still do not cover providers who only work at the hospital, like anesthesiologists or ER doctors.
I hope my story gives you some insight into the growing problem and the troubling situation people face working around the US healthcare system. All I can really say is this: beware of everything you sign up for, read every detail, ask questions, and do not expect for one second that anyone else will be on your side but you.