Phoenix Pheresis Phunzone
Previously on The Diagnosis
We spent four years in Phoenix and much of it is difficult for me to remember. There are moments that stand out, episodes like the Sed Rate business and a few hospitalizations that will stick with me forever. The middle part of our residence has congealed into a blur of plasmapheresis and migraines and ER trips and hospital stays that are now hard to peel apart.
The pheresis and migraines had somewhat of a symbiotic relationship. It got to a point where every time I had a treatment I could count on having a migraine that night. Or the migraine would present itself in the middle of pheresis in the form of nausea and make the experience more unpleasant. I've decided to split this section into two parts, because there's just too much for one post. I will jump back and forth a bit on the timeline, so I'll be discussing my three years on pheresis here and then my ordeal with the migraines in the next chapter. Hopefully that will make the story easier to digest.
My plasmapheresis treatments in Phoenix very nearly ended before they began. Back when I first moved to town and was living by myself in the furnished apartment, I received a bill from Seton Hospital in Austin for all of the pheresis treatments I'd had there in the past year.
If I haven't mentioned it yet, pheresis is not cheap. It's about the same cost as dialysis, which back then was around $2,500 - $3,000 per session. With all of the visits to Seton I'd made since my transplant for therapeutic plasma exchange plus associated hospital stays and procedures, I'd accrued a bill of up over six figures.
I nearly hyperventilated. We didn't have that kind of money. Who does? Plus I was about to start treatment in Phoenix. What were we going to do?
I called Ryan and proceeded to freak him out. He immediately switched into problem solving mode. If we even paid part of this bill we could possibly go bankrupt. We tossed around ideas, even one as extreme as getting a divorce so that one person could file bankruptcy leaving the other still able to draw an income. Not the ideal situation, but it would enable us to keep living as a family without completely going under.
Next, because I was a mature and capable 27-year-old, I called my mother. She somewhat talked me down from the cliff and said she and my dad would help us out with this financially. Having my parents bail us out was not a scenario I felt great about because it was a lot of money, but it was a better solution than getting divorced and going bankrupt. I can't stress enough how fortunate I was to have that kind of support system.
The next morning I got on the phone with Seton's billing department and resolved the situation within five minutes.
The lesson of the day was: do not take bills at face value until you do more detective work. First, make sure your insurance company has been properly billed. Often the billing department will just go ahead and send you a bill if your health insurance is dragging their feet. When you have two insurance companies, always double check with the provider that both parties have been billed. That was the situation here, especially since I had Medicare.
As previously mentioned, Medicare is absolutely essential when you have ESRD (end stage renal disease), but the guidelines are a little convoluted. When you get a transplant or go on dialysis, Medicare becomes your secondary insurance for the first 30 months. At the end of that period, it switches to your primary carrier. If you get another transplant, that starts all over again. It's all unnecessarily complicated.
It turned out Seton hadn't yet heard back from Medicare, which after my second transplant had once again become my secondary insurance. The first time I was on pheresis, I was far enough along in my transplant that Medicare was already my primary. Medicare does a substantial job of reducing costs and taking care of the majority of your coverage. This is great for ESRD patients, but it also comes with them taking their sweet-ass time to pay people. It took even longer this go-around because they were waiting on BCBS to be billed first. So, crisis averted, but for a brief moment we had a huge scare.
Funding secured, I settled on a once-a-week schedule for pheresis. This plan was more of a guideline than a rule. Because it was a treatment we thought might help in the long run rather than a thing absolutely keeping me alive like dialysis, it was easier to skip weeks when it wasn't convenient. For instance when I was dealing with my sed rate crap and was borderline nauseous all of the time I took a break. If I needed to leave town for vacation I could do that as well.
But I was still getting pheresis more regularly now, and while it was possibly extending the life of my kidney, it also took a toll. At the end of each treatment you aren't able to get all of your blood back, and with my kidney having a hard time replenishing blood cells it was essential to check my blood count before each treatment. If I was too anemic we had to postpone. If my hematocrit was dangerously low I would need to stick around that day and have a blood transfusion instead of pheresis.
I was put back on Epogen injections, but even with those it was a struggle to keep my hematocrit up. This is the part where I kindly suggest that if you can donate blood regularly, please do! Blood is used for a wide variety of reasons, and not just for emergencies, trauma, and surgeries.
In the spring of 2005 I was mulling over the decision to leave my job. It was an ideal position on paper, good money and benefits, great hours and nice co-workers, but I was kind of miserable. And I realized a big part of that was...I just wasn't good at it. I enjoyed programming when I worked at Human Code because the content was fun. Making computer games for kids was a blast. And I got away with what was probably less than stellar code because no one ever checked my work.
At Garmin we would do peer reviews before we submitted our code. Which is a good thing! It makes for stronger programming if you have two minds collaborating. But it also exposed my weaknesses. I was falling behind my co-workers and couldn't keep up with the changes in technology and techniques. Because I came into programming late in life, I didn't learn to code until college. It wasn't second nature to me like my peers. Not that there aren't folks who don't take to software engineering as adults, but I didn't happen to be one of those people.
Before I officially left Garmin, I was doing some inquiry into whether or not Ryan's insurance would pay for my pheresis treatments. I wanted that guarantee so we wouldn't have another scare like we did with the Seton bill. That all changed the day I had my third yearly performance review.
I shouldn't have been blindsided by it. I knew I was struggling, not keeping up, not putting in good work. But my boss had also never talked to me about it. There's such a thing as being TOO nice, especially as a manager. It basically confirmed my worst fears about my position - that I wasn't good at my job and everyone knew it. He phrased it more politely, but it was still rough. I actually cried in that meeting. With my boss. I could tell he felt terrible, and I felt bad for making him feel bad. He let me go early that day.
The following Monday I put in my two weeks. My fellow employees had always seemed to enjoy my company and were sad to see me go, but I think they all understood the reason for my departure.
I finally heard back from Ryan's insurance about the pheresis after I had quit my job. Their answer was a firm "that's an experimental treatment and we won't cover it".
Well, shit. I called Dr. Lambda's office, explained the situation and notified them that if I couldn't get coverage I would have to halt pheresis.
Of all people, the aforementioned Dr. Smith* of "being a jerkface" fame, helped me out. To be fair, I had seen Dr. Smith a number of times during hospital rounds since our first meeting and he was much nicer to me after that first visit. He probably was just having a bad day during that introductory meeting, but that gruff superiority was still in there somewhere and boy did he put it to good use in his letter to the insurance company. Humana got the same response I did when I referred to the the treatment as "experimental". They agreed to pay for it.
It was kind of nice to take a break from work. I got to spend time at home with Melbotis, Jeff the Cat, and new puppy Lucy, who was in desperate need of guidance. What I didn't anticipate at the time was that hiatus becoming a lifestyle by stretching to 17 years and counting. After I left Garmin I had every intention of seeking out other employment, but my migraines had other ideas. They would soon consume my life and Ryan's like nothing had before.
*again, not his actual name
next up: Migraines
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