Previously on The Diagnosis:
After the transplant I settled into learning how to function as a human again and the spring of 1994 was uneventful. In April I got to go for a weekend to visit my buddies at Trinity and take care of some business, getting my summer school classes approved, meeting with my advisor, and taking my place aside my roommate for the next year to secure a room in our preferred dorm. I would be suitemating with Shannon and Erica and rooming with our friend Leslie.
Transferring entry level classes was fairly easy and I was going to be getting two of them out of the way from Cameron University at home in Lawton that summer. At that point I had just twelve hours at Trinity under my belt and I was woefully behind. By mid-way through July summer school was over.
My mother was a planner and spontaneity was not her strong suit, so when she did something unexpected it was delightful. Doug and my dad started a tradition of going on a week long canoe trip in the Boundary Waters Canoe Area in Minnesota that summer, which left us ladies alone at home. Mom came to me with an idea. Let's hop on a plane and go visit Aunt Helen (her sister) and Uncle Hans in Calgary!
It was the first time I had ever travelled with her for fun that had not been planned out months in advance. I wish she had done it more often, because it brought out this mischievous side of her I didn't get to see very often that was quite hilarious because we weren't doing anything wrong or breaking any rules. It was just refreshing not to have a plan on a vacation for once.
Though the spring and summer were healthy on the kidney front, they were not without obstacles. My friend the migraine returned. I had seen a neurologist in town as a precautionary visit and he prescribed Imitrex injections. They were new at the time and were a game changer. Before this medication there was basically nothing you could take at home that would actually get rid of the headache. You would have to just ride it out by lying in a dark room for a day, or have to go to the hospital to get the good stuff.
About a month before I went back to school I got hit with a whopper of a migraine. Being the chicken that I was, I called my mom at work. Though the injections looked fairly simple (they were packaged in a way that you just had to put the cartridge against your skin and press a button) but I doubted my ability to be able to stab myself. Mom came home and gave me the injection.
The sensation of the medication in my system was overwhelming and having already hit the nausea stage of the migraine I immediately ran to the bathroom to throw up. But afterwards I came back to lie on the bed and felt the Imitrex doing it's work. Within 20 minutes the migraine was completely gone.
The next time I needed a shot, we were on our way back from our yearly visit to Minnesota. I woke up in the middle of the night, feeling the unmistakable pain in the left side of my head. Knowing that I would be leaving to go back to school soon and wouldn't have my mother around to give me shots, I decided to be an adult. Very quietly and in the dark, since my parents were sleeping in our hotel room, I located the shot in my suitcase and took it into the bathroom.
I managed to set it up, identify a spot on my right upper thigh I determined looked like the least painful spot I could imagine, and push the button. Something I didn't mention earlier, Imitrex hurts when injected. But it only lasts a few seconds. Somehow I kept quiet while this was happening, then stayed in the bathroom as the migraine quickly subsided. I had done it.
That simple act of giving myself a pre-packaged shot felt like such an achievement. Knowing I would be able to easily take care of migraines on my own was such a relief and took away my one reservation about returning to college.
I started the fall semester back at Trinity with a jump up to fifteen hours like a normal student. Though I was not technically a sophomore yet due to my lack of hours, I still allowed myself that classification. I was getting into the swing of college, managing my classes much easier now that my brain was not so logy. Aside from the smattering of migraines and sometimes early morning trips to the pharmacy to procure more Imitrex, it was a smooth fall.
During Christmas break, my creatinine was once again reading high. Dr. Wenzl wanted to put me on a regimen of Solu-Medrol (iv steroids) every other day for 10 days. That meant getting up at the crack of dawn to drive to Oklahoma City every second day. My mom went with me a few times, but I made the drive with my brother once and once by myself. I have a strong memory of driving solo in the cold and dark listening to the entire Nutcracker Suite feeling very independent.
Other than the iv stick, the injection itself didn't hurt. It took a while because of the sheer volume of liquid going into my veins. The worst part was the taste. The nurses had warned me before my first treatment that Solu-Medrol leaves an aftertaste in your mouth and recommended chewing gum during the injection. It helped. I know it sounds strange that something going into a vein can reach your taste buds, but I've experienced it with a number of medications.
The steroid treatment seemed to do its job and I went back to school for my spring semester. All was fine until I had another questionable blood test in early April. My San Antonio doctor wanted to do another biopsy.
I had to take a couple of days off from school, but the biopsy went fine. It's amazing what perspective you get from two major surgeries and countless medical tests. This was no big deal the second time around and I had lots of company. My mom had of course flown in as she always did, but as a bonus I got a visit from all of my roommates plus two other friends.
But the best part of that hospital stay was the moment my doctor came in and announced that he saw no signs of FSGS recurrence in the biopsy sample. This was fabulous news.
My glee lasted approximately another month and a half, enough to get me through the rest of the semester. During my first appointment back home from college we discovered my creatinine was again climbing. Dr. Wenzl broke the news that it was entirely likely the biopsy sample had not captured the part of the kidney that was actually sclerosing and that I almost certainly had recurrent FSGS.
My mom and I were deflated. We were supposed to be leaving for a trip to the Galapagos Islands in a week's time. Dr. Wenzl agreed to let me go, but supplied me once again with a healthy prescription of steroids. This time it would be 40 mgs instead of 60.
The trip to Galapagos was amazing. The Islands are strictly protected so as not to interrupt the delicate and rare ecosystem, so you have to go on a tour with a guide. Our group consisted of about 15 people and our home for the week was a medium-sized yacht. Never was I so glad I don't suffer motion sickness.
There was a lot of hiking, snorkeling in the afternoons, soaking up fresh air and making socially distanced friends with the wildlife that were not at all afraid of humans. Each night we met in the group area of the ship and had a lesson on what we had seen or what we would see the next day from our knowledgeable guide. It was a once in a lifetime experience.
When we returned to real life and returned once again to Children's Hospital, my creatinine had dropped to not only a good number for me, but a good number for a healthy person. Dr. Wenzl joked that he wished he could send all of his patients to the Galapagos and credited the combination of steroids and vigorous exercise for my recovery.
The summer after that was uneventful. I did not take summer school, but instead had lined up a part-time internship at the local news station. I also shuttled my grandmother to and from doctor's appointments. In my spare time I read massive amounts of detective novels.
When my dad went off on his canoe trip, my mom once again surprised me by suggesting we take another trip, this time to Vancouver. We had such a great time. There's something so freeing about going to a new city with no plan in place and just being able to explore. Vancouver was having a record-breaking heat wave, which for them meant they were hitting 90 degrees. No big deal for us, but we didn't exactly bring appropriate attire for such weather. Luckily our hotel room did have a window AC and I remember having to leave my pills on top of the unit as the immunosuppressants needed to keep cool.
The one new medical change for me that summer was the introduction to Epogen. Yes, that's the same drug Lance Armstrong got busted for. One of the things the kidneys help out with is the production of red blood cells. This can lead to anemia if they're not working at full speed. Epogen helps boost those blood cells, but unfortunately is only available in injection form.
I would have to start giving myself injections. My dad did the first one so I could get used to the sensation. Unlike the pre-packaged Imitrex shots, these would have to be administered by old fashioned syringe. Knowing I would not always have a parent around for assistance I once again attempted to do it myself one afternoon.
My dad came home to a victorious child with about 12 different stab marks in her leg. It took me numerous tries to be able to puncture the skin enough for an injection. If the Imitrex shots were painful, the Epogen was agony. I found that being able to control the rate of the injection was a mixed blessing. Too fast hurt too much, but slow just dragged it out. Luckily after my blood count came back up I only had to return to the shots occasionally.
In the fall after returning to school, we decided I should change San Antonio doctors. Our confidence in my local nephrologist had been declining and the final straw was the mishandling of the biopsy diagnosis the previous spring. I can't remember where we got the recommendation for the folks at University Hospital, but in November of 1995, my mother flew in and once again we were attempting to navigate our way around a new hospital.
The nephrology unit at University, another teaching hospital, was located on the top floor of a building in northwest San Antonio. I can't remember the name of the doctor I met there, but my mom and I really liked him. He just seemed infinitely more invested in my history and treatment plan than my last doctor.
I only ended up seeing Doctor #1 for about a month when he left to take another job. Thus is the way of the teaching hospital. My next doctor was a red-headed man with glasses in his late 30s named Dr. Riley.
I was tentative and a bit miffed at first. We had gone through all of the trouble to switch doctors and then he just left? Though Dr. Riley was very kind, I questioned his experience. Over the next couple of years, however, he would prove himself resourceful and extremely competent.
During the fall of 1995, I would make a life-altering change of a different kind. I started dating Ryan. I won't go into it here as there is another entire post devoted to our relationship, but I was always amazed that he knew my entire medical history and wasn't spooked. Never was that more apparent than when I got sick in February of 1996.
Leslie and Erica were doing study abroad that semester, so I was back rooming with Shannon. She woke me up around 1am on a Friday morning because I'd been crying and whimpering in my sleep. I had felt fine when I'd gone to bed, but sometime during the night I'd developed a high fever.
Shannon whisked me over to University Hospital where their transplant patients got first priority and we were escorted to the treatment area immediately. I had a fever of 104. A nurse came in to ask questions and take vitals and then I was seen by an ER doc. As the doctor read my chart he noted that, "apparently the nurse thinks you go to coll-age" and because it was 3am, Shannon and I were both punchy and I had a disorienting fever, we thought that was the funniest thing we'd ever heard.
Shannon stayed with me until I got assigned a room upstairs and she had to leave to get ready for class. I hope I thanked her profusely for taking care of me because she may have actually saved my life.
Sometime mid-morning I managed to call my mom and Ryan. I don't know if Ryan was done with class for the day (I don't think he was) but he immediately drove down to the hospital. He was treated to watching me get an iv and having watch me get sick multiple times. My mom arrived Friday evening to help with Jamie-watch.
I had an infection which was doing a number on my system. This is always a concern when your immune system is suppressed. They started me on iv antibiotics, but then had to just wait it out for them to start working as my body struggled to fight off the foreign foe. Those three days were not fun for anyone present.
I was released from the hospital on Monday, but still had an iv taped to my arm. Three times that week I had an at-home nurse visit my dorm to administer more antibiotics. I'm sure she got lots of strange looks from my fellow dorm-mates on her way up to my room.
The infection was the last roadblock I would have for quite some time. I got to be a semi-normal collage student, have a serious boyfriend, and even have my own apartment with my friends in San Antonio that summer. Though I would always have to be monitored, it was nice to be able to focus on other aspects of my life for a while.
I'm pretty sure that weekend at the hospital bonded my mother and Ryan for life. It would be the first of many times these two would keep each other company while I was in the hospital. She was impressed by how maturely unphased yet concerned about the situation he was. He stayed the entire time, only leaving to sneak into my dorm room to sleep (Shannon was away for the weekend). It was reassuring to my parents and me to know we had help. We now had an ally in this fight.
Next up: Plasmapheresis and Calculus II