Previously on The Diagnosis
I'll be blunt. My migraine troubles made life hell for us while living in Phoenix.
I saw a total of three different neurologists in the Valley of the Sun. Doctor #1, selected on a recommendation from Dr. Lambda, was in the same building as my kidney doctors. After he auditioned a couple of completely unsuccessful preventative medications and found no solution to my progressively debilitating migraines, he was dismissed.
Doctor #2 was located in downtown Phoenix, an inconvenient 45 minutes without traffic from our house. A different set of preventative medications were rolled out and, like the others, did not work and had unpleasant side-effects. Doctor Two lasted less than a year.
Doctor #3 was in the Ahwatukee Foothills, located across I-10 from our suburb. I settled there because it was close, the doctor was nice, and she wasn't trying to start me on endless preventatives that were derivative of the same prescriptions I'd already been trying.
I had all of the usual tests - MRIs, CT scans, just to be really certain for the thousandth time that there wasn't some other underlying condition causing the headaches. There wasn't. They were just migraines.
What was happening that my migraines were getting worse? Basically my sumatriptans (my at-home migraine medication) were gradually becoming more and more ineffective. If a migraine was not stopped in its tracks, every single time it would progress to the point where I was vomiting and that equals bad news for a transplant patient. If you have hit that point, you go to the ER where they give you anti-nausea meds and narcotics.
Friends, I went to the ER in Arizona an indecent number of times. At first it was just occasionally. We were driving all the way over to Desert Samaritan Hospital in Mesa, where I had my pheresis treatments, simply because that was the home base for my kidney doctors and I didn't know any other hospitals. One year Ryan and I spent an absolutely horrible New Year's there. If you were to guess that New Year's Eve is not the best night to be at the ER, you'd be correct. They were short staffed and the workers who were there did not want to be there. We sat in that waiting room for hours.
Finally shortly after midnight I was called back. They gave me Demerol.
If you're not familiar, Demerol is a serious narcotic you don't want to mess around with. Use of Demerol has declined in recent years for many reasons not least of which is the danger of toxicity. In retrospect, they probably shouldn't have used it on me at all considering it is processed by the kidneys.
I was out of my mind. So out of my mind that when they asked me if the pain was gone I didn't know how to answer the question. How should I know? Why don't you ask the floating frog wizard sitting next to me?
They let me go home. Four hours later the fog was starting to lift and I realized my headache was not gone. We went back to the hospital the next morning. Morphine was administered this time and the migraine stopped. We had spent nearly 24 hours in and out of the ER.
The wait times were no joke. Phoenix was experiencing serious growing pains and the hospitals could not keep up. At some point we realized there was a much closer hospital that my doctors would visit. Chandler Regional was only a ten minute drive from home, much easier than the almost half hour it took to get to Mesa. The wait times, while also horrible, were still better than those at Desert Sam. I once overheard a woman in the waiting room say she had been sent over to Chandler because Samaritan was too full. Still, our record at Chandler was eight hours to be seen. Eight. Hours.
The Chandler Regional Emergency Room was just bizarre. No matter what time of day, the volume of the tv in the waiting room was set to 180 decibels, which believe me is just the perfect remedy for nursing a migraine. If you already feel as if you're going to throw up, reruns of Everybody Loves Raymond at that level will push you that extra mile.
Sometimes huge groups of people would arrive together, including small children. I could understand this if someone were gravely ill, but often it was a struggle to decode which member of the giant party was actually sick without looking for the identifying medical bracelet. These families would show up with bags of McDonald's like they were having a family reunion at midnight in the ER.
The times when it was especially crowded were maddening, because some of the easy cases got "fast tracked". Those whose ailments could be easily treated by a nurse or nurse practitioner instead of a doctor were whisked back within minutes of arriving. Once, while throwing up into the complimentary extra large popcorn bucket, I watched a child walk immediately back into the treatment area who literally had a Lite Brite light stuck up his nose. I made a memo to myself: next time bring a Lite Brite light.
Ryan spent a lot of time checking in with the front desk to get updates on where we were on the list, though the triage nurses were rarely persuaded to move us up in line. They'd seen everything and it was impossible to shock them. You could show up with a barracuda attached to your forearm and they would blandly ask, "how long have you been having this problem?" A migraine, while miserable, was not actually life threatening.
The treatment area was no less strange. Approximately one half of the patients were seeking assistance for kidney stones (dehydration is unsurprisingly a huge problem in the desert). Once we were positioned in a room next door to a woman with constipation so painful they were going to attempt to manually remove the blockage. Another time we overheard, "you'd be surprised how many folks come in with bugs in their ears."
The ER visits started eating into my sick days at work. I had to work out some FMLA forms with my employer so that I wouldn't be fired if I went over my allotment of sick days.
Ryan missed work as well, because I couldn't drive myself home. Every time I went in I was getting some combo of morphine and anti-nausea meds. Morphine on its own is good stuff, but add in Phenergan and you will be flying. Don't morphine and drive, kids.
After I quit my job and was home full time I had fully planned on looking for another job and was even working on my resume, but the migraines had other ideas. By summer of 2005 I was making two or three trips to the ER per week. I would still at least try to use my prescribed triptains, but if they hadn't kicked in within an hour or two I headed to the ER. If I was lucky, I could be seen and given meds before the vomiting began, but that usually wasn't the case.
It was extremely frustrating that the ER docs, well aware of my frequent flier status at the hospital, continued to just treat the symptoms. No one ever had any long term solutions other than "come get morphine." I didn't know what the answer was either, but it very much felt like they couldn't push us out the door fast enough once the headache was gone.
These migraines would pop up at the most inconvenient times. Once we were at the movie theater to see A History of Violence. We didn't even make it through the coming attractions before I knew we needed to head straight to Chandler Regional. Another time we were attending a Gilbert Community Theater production of "Oklahoma!" If you are unfamiliar, the first act includes several very loud gunshots. At intermission I sadly informed Ryan that we needed to go, so we shuffled off to the ER in our fancy clothes. That was probably the most pleasant of our visits, seeing as it was unusually empty for a Saturday night. We got ushered to the back quickly and were attended to by a nurse who knew us pretty well by then. I was probably in and out of there in under two hours.
Ryan and I were asked many times while we lived in Arizona why we didn't travel around the state. It was the home of Sedona! Flagstaff! The Grand Canyon! We were missing so many opportunities! I hope this post has shed some light on the answer to that question. It just wasn't safe to be too far away from a hospital or my doctors when this was going on. And frankly, we just didn't have the mental or physical energy to plan anything. It was all just too depressing.
Doctor Mom was keeping tabs on the happenings in Phoenix and was constantly on the lookout for new breakthroughs in headache research. One morning she saw a doctor from the Cleveland Clinic on Good Morning America discussing a promising new migraine therapy in the form of Botox injections.
Well that sounded interesting. I was willing to try anything at this point.
Not one to hesitate, Mom had us scheduled for a trip to Cleveland soon after that and in September we flew up to Ohio to meet with Botox Guy. Doctor Botox was pleasant enough. We went over my lengthy medical history, but we all knew I was there for The Botox and thus at the end of the meeting he injected me several times over both of my eyebrows.
For whatever reason, I didn't have a single migraine while I was in Cleveland, so to no one's surprise my body had to compensate in other ways. Not knowing if Doctor Botox would want to schedule any extra tests, we had planned to be on the ground in Ohio for three days. By the end of the first day I had developed a fever. Because of course.
I felt so bad the following morning we located a nearby hospital. Seeing as I was a transplant patient, it was pretty clearly another infection. I was given a prescription for antibiotics and we retreated to the hotel. I spent much of the rest of that day and the next sleeping, but felt well enough to go out to dinner on the final night. And that was my one trip to Ohio.
It didn't take long after my return home to realize the Botox was doing jack squat helping with the migraines. In fact, the only noticeable change was not being able to move the upper part of my face. I'm not judging anyone who gets it - I had jaw surgery for heck's sake. But it must take a special skill to be able to express yourself with Botox.
My neurologist finally gave up and suggested the drastic measure of going on a very small daily oral dosage of morphine. Not enough to mess with my head, but hopefully enough to ward off any headaches. My migraines got much better soon afterward, but not because of the morphine.
A monumental change in my life happened around the same time that later would reveal itself to be the true source of relief. I had to go back on dialysis. I didn't put the pieces together at first, thinking that just the change in lifestyle and introduction of daily morphine composed the finish line for my marathon of ER trips. But I started thinking about the similarities between the ends of my first and second transplants and how bad my migraines were both times. My theory was that because my filtration system was damaged and my body was getting rid of everything that also meant my sumatriptan medication was going right through me. When I restarted dialysis, my medication started working again.
My migraines were finally under control, but dialysis had returned.