Previously on The Diagnosis: Master List of Posts
It was the best of times, it was the worst of times. The first year of life out on my own was exciting in its newness but also truly a test for me, for Ryan, and for our relationship. My transplanted kidney was sputtering to its end, and in its wake brought a slew of challenging migraines that became increasingly resistant to the Imitrex. This meant more and more trips to the hospital. Because I was focused on other aspects of my life, the specifics of my health during this time are difficult for me to recall. Ryan remembers hospital trips as a blur of handing me barf buckets. Wasn't I a catch?
But I'm getting ahead of myself, so let's back up. After graduation I moved an hour up the road to Austin.
Austin! None of these buildings were there in 1998.
Ryan still had two weeks left on his apartment lease, so we loaded all of my stuff into a storage unit until we could move into our larger place. At the end of May we transported all of our possessions across the apartment complex to a two bedroom unit so we could spread out a bit and have an office.
Though we'd dated for two and a half years at this point, it had been a semi-long distance relationship. This would be the first time we would be in each other's space 24/7. It was wonderful to actually share our lives full time, but it was also an adjustment. We had to learn how to live together, which is a completely natural thing.
Ryan already had part time work at UT and over time turned that into a full time position. My situation was a little more dicey. It was a stressful three months before I landed a job, which had me feeling a bit lost. Part of that anxiousness was getting dropped from my parents' insurance. Transplant drugs are not cheap and don't even get me started on the cost of plasmapheresis should I need it again. Luckily there was a grace period, but I needed something soon.
In addition to looking for work, I was setting up my local health care. There was a nephrology Transplant Center located in the top floor of a medical building next door to Seton Hospital not far from our apartment. I would be spending a lot of time there in the next few years.
My new doctor was competent, but not my favorite. I remember his name, but I won't use it here as I don't want to badmouth anyone personally. He reminded me a little of a gameshow host and even after four years couldn't remember any details about my life outside of my medical chart. Once he even brought his new full size bullmastiff into the dialysis clinic with him when he was making rounds. He was definitely a character.
In August I secured a position as a programmer at a multi-media startup called Human Code. They had actually been around for a number of years at this point, but had yet to go public and still felt like a smallish organization. I would be working for the consumer division making PC games for children.
My first day was a Friday (I suppose to ease me into things) and I was nervous. So nervous that when I woke up my stomach was twisted in a way that I knew I would be paying for after work. Though mentally I felt much better once I got there and met my project partners, I was still physically off all day. My friend Winnie worked in the Art Department there and she took me to lunch along with a number of others. I could barely eat, my stomach still protesting.
I was sick the rest of the weekend. It was an Imitrex-resistant migraine, but I managed to stay out of the hospital this time. Years later I would connect the dots between my migraines not responding to Imitrex with my kidney deteriorating but it's not an obvious link. I stayed in bed keeping the lights low curled up with instruction manuals for the programming engine used at Human Code trying to get up to speed.
My job was challenging for me. Though I enjoyed the actual work, my fellow employees and the environment, the deadlines often made for hellish hours. This is unsustainable for a regular healthy twenty-something so it certainly put a strain on me. Since we worked for clients, our deadlines were set in stone. If we had a deadline and we weren't finished at 5:00, we stayed until our deadline was complete, no matter how late it was.
I was constantly paying the price for working all hours. Every single time a finished project would result in a trip to the hospital. Ryan was increasingly frustrated with my company and my insistence upon continuing to defend them. In retrospect he was 100% in the right, but I was a stubborn stupid kid at her first job not knowing any better. We had a lot of arguments around this topic because it was heavily impacting both of our lives. Ryan knew before cohabitating the responsibility of partnering with a chronically ill person. He had proven time after time how compassionate and reliable he was. But the fact that I was consciously making the problem worse by working crazy hours made him understandably upset.
I have heard a lot of feedback from people saying they admire me for my strength and I appreciate that but I also want to stress that I am not and was not perfect. There were a lot of mistakes and poor choices along the way and working stupid hours was one of the biggest.
I also want to make clear that there were plenty of good times amongst the bad. In between the health crises we had a lot of fun. I enjoyed being out of school and not having homework. I enjoyed having an income and being able to provide for myself. Many of Ryan's friends from college had planted themselves in the Austin area and they became my friends. I also made buddies at Human Code that I still keep in touch with today. One of them, Heather, was my maid of honor at my wedding and is one of my favorite people. Though she lives in Seattle now, we still chat frequently and visit when we can.
But the hiccups continued to interrupt our lives. In January of 1999 I was hit with a particularly potent migraine. I can't remember if I had come home from work or had just not gone in that day, but Ryan says I called him home from work. Feeling more awful than usual with a headache, it got to the point where I was lying on the bathroom floor unable to respond to him.
He called an ambulance.
When EMS arrived, I think they assumed they were dealing with an overdose. A reasonable assumption for an outwardly appearing healthy young adult who was unresponsive. I was awake, though. I remember everything. It was as if the only function my body could perform was to concentrate on breathing. I felt paralyzed. It was terrifying.
Ryan gave them the rundown on my medical history and they sped me to Seton Hospital. Based on my frequent migraines, it was assumed the incident was just a more severe episode. I was given the usual meds and probably stayed at least one night at the hospital.
Months later I would undergo extensive heart tests. One of those tests revealed I had suffered heart damage at some point. They said it was likely a silent heart attack (one that is not diagnosed as such at the time). I have no doubt in my mind the ambulance affair was that event. It explained a lot.
That spring, not only was I dealing with more frequent migraines, I was also once again struggling with anemia and had to restart the Epogen shots. I was constantly exhausted and losing my appetite. My steroid-induced diabetes from the previous spring had come under control, so I was eating a lot of foods I'm sure were terrible for me, just to try and up my calorie intake.
Soon my lab-work started looking squirrely. By May, action needed to be taken. Fighting like hell against the idea of starting dialysis, I discussed the possibility of once again attempting plasmapheresis and my doctor agreed. Nine treatments, every other day.
This time I was getting a port placed further down on my upper chest. Thankfully I would not need turtlenecks in the Austin summer. I figured out the reason for the neck catheter previously had been that it's an easier procedure and we were in a time sensitive situation. This time I got a local anesthetic so it didn't hurt as much.
The dialysis unit at Seton hospital had room for four hospital beds and one recliner for the pheresis machine. It was headed up by a woman named Pam, who I would come to know quite well over the next three years. She was the most down to earth, genuinely kind, and highly entertaining nurse you'll ever meet. It would make my time there much less stressful.
The pheresis treatments seemed to work and the catheter was removed. I spent the rest of the summer continuing to struggle with keeping up with work and my various ailments. By August things were looking dire but my doctor agreed to have one last go at pheresis.
This time it didn't work. I was down to my last option. Dialysis.
I have come to the end of this section, but I don't want to leave you on that note. I've been on dialysis twice for a total of seventeen years now and it's not the end of the world. It is an adjustment and the first couple of years were more difficult than they are now. But there was also a wonderful thing happening in my life then. I would be getting married in the spring.
AN: This entry is dedicated to Mr. Ryan Steans for going above and beyond at a time when the rest of his friends were enjoying their early twenties like normal people. I don't know what I did to deserve you, but you are my strength.
Next up: Dialysis