Plasmapheresis and Calculus II

Previously on The Diagnosis: Master List of Chapters

Ryan and I both ended up taking a victory lap at college. He was working on adding a second major and I was still playing catch up from my lost transplant semester. This put both of us in single apartments so we were without roommates for the first time. 

I had managed to mostly stay out of trouble for a long while. Though I still went in for regular check-ups, my "first" senior year saw no hospital stays, no biopsies, no signs of rejection. This good luck streak came to a screeching halt at the end of the first semester of my last year of school.

My creatinine had once again been creeping up as Christmas break grew near. Also, I had gained an alarming amount of weight in a short amount of time. I can't remember the specifics of why my mother flew in to attend an appointment, but it must have been that we knew things were not going well and we needed all hands on deck to make some decisions.

Dr. Riley had IDEAS. First off, the weight gain was most likely water retention. I had struggled with this off and on through my whole illness, but didn't know it could get this bad. My diuretic would need to be increased. We would employ the usual tactic of oodles of Prednisone for the creatinine clearance. And this time he wanted to try an experimental* procedure called plasmapheresis.

Plasmapheresis can be used for a number of medical procedures, including plasma donation and treating autoimmune disorders. In my case the plasma in my blood would be separated from the red blood cells and replaced with albumin. It all takes place in this 70s sci-fi looking machine that has a centrifuge you can actually watch spinning your blood because it has a slidey-clear top like a convenience store ice cream freezer. Oh, and then they give you your blood back. Mostly.

beep boop whirrrrr

My mom and I were on board with this plan, because the alternative would be starting dialysis, which...hard pass. Dr. Riley was ready to get started right away. There would be no going home for me this Christmas. He wanted nine treatments every other day. 

I would need a central line for the speed and volume of blood needed for the exchange that a small vein would not be able to handle. They were going to put it in my neck.

The good part about "getting started right away" is that you don't have time to process and get freaked out about what's about to happen. The bad part is that "oh shit, we're doing this right now." I honestly to this day don't know how they got away with doing this procedure in a normal room with absolutely NO local anesthetic or happy drugs, but it happened.

Dr. Riley was going to insert the catheter himself, which I didn't realize he was qualified to do. I always thought procedures like this would be done by a cardiothoracic surgeon. His regular nurse assisted and I swear her calming voice was the only thing keeping me from bolting. Basically I had to lie on a table with my head hanging off the end. My mom was there holding my hand. 

It was essentially: "Don't move or this could go poorly."  *STAB* *STAB*

Not the most comfortable procedure I had ever undergone, but at that point I had moved onto worrying about the pheresis itself. I was sent home that day with a bunch of painkillers for my neck and would need to be back at the hospital the next day for what we started calling the "oil change."

I was quite nervous. Though this procedure differed from dialysis, it was certainly related. In fact pheresis machines are usually located *in* the dialysis units of hospitals. Both treatments remove your blood, do something with it, then give it back to you. I suppose in a way it was a good way to introduce me to the idea, yet that did little to calm my nerves.

The first treatment went quite well. The nurses were super nice and walked me through everything they were doing. Though the neck catheter was still very sore, it made hooking me up to the machine incredibly easy and painless. Then my job was to sit there for the next two hours. I watched a movie.

There were two notable side effects to finishing a pheresis treatment. One, it made me feel like I was softly vibrating and this would go on hours after I was finished. Two, I was already incredibly anemic and the procedure strips away even more blood cells. There was one day I had to stop twice leaving the hospital to sit down because I was seeing stars. 

Though I had to stay in San Antonio that Christmas, I was not without visitors. My mom remained with me on the front end and was joined by my dad and Doug closer to Christmas. Obviously not everyone stayed in my little apartment, so they got a hotel room. I was accompanied by various family members including my brother (which impressed the hell out of me) to treatments during their stay. We had a makeshift Christmas in my apartment.

After the family departed Ryan took over. He would have a hectic break, traveling back and forth between Austin, Houston, and San Antonio. We'd been dating two years at this point, and he was proving himself to be quite the source of strength, comfort, and humor. He accompanied me to a number of treatments.

One night just for a change of scenery, Ryan and I went back to Austin. We went over to our friend Rob's house that evening. Because of the unnerving tubing sticking out of my neck, I had taken to wearing turtlenecks in public. Ryan started calling the catheter "The Bells of St. Jamie." It was not common knowledge that I was undergoing any kind of therapy. To mess with Rob, Ryan leaned over mid-conversation and pulled down the turtleneck. Rob jumped about a foot. 

The plasmapheresis treatments finally came to an end. My creatinine was back down and thanks to the massive amounts of the diuretic Lasix I was taking, I had shed all of my water weight. Turns out I had been carrying twenty pounds of it. Dr. Riley allowed me to start tapering my Prednisone as well.

Removing the neck catheter was not a walk in the park. Getting the tape off that had been there for over two weeks was the worst part. Dr. Riley told me not to look when he got to the removing the tubes part. He instructed me on taking a deep breath in, then giving a good exhale. While I was busy blowing out air, he pulled out the tubes. I looked.

The tubes were so. long. I couldn't believe that mess had been in my body. Gross.

Spring semester started, my last at Trinity. I had already completed my Communications degree and all I had left were classes to finish my Computer Science major. The majority of my time would be spent in the Comp Sci building, which was quite convenient for someone not at the top of their health game. Since I lived off campus, I drove my car to school and was easily able to park right outside of the building. The only non-CS course was in the next building over and that was Calculus II.

Calculus II was the bane of my existence that spring. I would rather sit through plasmapheresis all semester instead of taking this class. I took Calculus I three years earlier to complete my math/science requirement and quite enjoyed it. Not only was Calculus II a different beast entirely, I struggled to remember what I had learned in Calc I. Everyone else in the class had just taken it the previous semester. The professor also made a point of trying to call on each student once a class. I never knew the answer.

Because I spent a lot of time in the Comp Sci building, I was good buddies with the department secretary, Barb. Trinity was a small school, so this was not that strange. Barb let me hang out in her office during lunch breaks and she knew all about my medical troubles.

About a month into the semester, I arrived home at my apartment one night and realized I had left my wallet in the computer lab. The next morning it was not there. I went to Barb.

Barb was on the case. She asked around to no avail and then suggested we go to the tapes. We spent the rest of the morning fast forwarding through security footage of the computer lab. You could very clearly see my wallet on the table and then after the cleaning crew came through....not see it.

Barb contacted the cleaning company but warned me there was little chance it would be recovered. To console me she offered up an extra large brownie someone had brought to her. I scarfed it down, thanked her for her help, then went home to make all of the appropriate lost card phone calls.

Very quickly after arriving home I started getting leg cramps. Guessing that perhaps I was low on potassium, I drank some orange juice. The leg cramps were soon so bad I couldn't walk. I crawled over to the phone to call nurselink at the hospital Transplant Center.

The doctor on-call said "get thee to the hospital ASAP." I waited until I thought I could use my legs for driving again and somehow made it over to the ER. Blood samples were collected and vitals were taken. I had a pulse of 150 and glucose level of over 500.

One of the side effects of Prednisone I had not had the pleasure of experiencing before then was steroid-induced diabetes. Basically the brownie set things off and then I made the situation worse with the orange juice. I would remain in the hospital for the rest of the week. Mom came down and Ryan showed up on Friday. The hospital stay included more needle pokes than I'd ever experienced in one day and an uncomfortable lung scan. At least it was better than taking the Calculus II test I missed.

Once I was stabilized I was sent home with more medication and would need to follow a low-sugar diet in addition to watching my sodium intake. Oh, and I would have to start checking my blood at home for glucose with finger pricks four times a day. Cool.

Two weeks later on a Sunday night I was studying for a different test and started to feel sick. It was a horrible evening. I will spare you the details, but I was awake all night getting sick in all possible ways, bringing a pillow into the bathroom with me to just lie on the cool floor. 

The next morning I called my mom. She had a good friend in town who came over to drive me to the ER again. I was really scared about getting sick in her nice car, but my stomach played nice for the trip. 

At the hospital my temperature was 103 and I had severe dehydration. What I thought was food poisoning was another infection. They kept me for a couple of days and after a round of antibiotics I felt much better and was released. My mother (present as always) had been using my car and had left it in the hospital parking lot for me when she departed for the airport via taxi. I made my way to the parking lot around noon, ready to go home.

My car wouldn't start.

I generally try not to complain as there are plenty of people that have it worse off than me, but I had a genuine moment of "really, universe???" Taking a beat to close my eyes and sigh, I made my way back into the hospital to locate a pay phone (pre-cell phone days, kids!). I called Barb.

Barb located one of my classmates who was willing to drive all the way out to northwest San Antonio. He was there in 45 minutes and jumped my car for me. After allowing me to thank him profusely, he went on his way and I was finally able to go home.

Interesting note, I am able to record this period of time with some accuracy because I started keeping a journal when I was on pheresis. The entry immediately after the "jumping the car at the hospital" incident starts off with the sentence, "I just got really depressed for some reason."  *facepalm*

I managed to make it through the rest of the semester with no more hospital visits. My glucose came under control and with the Prednisone tapering I began to lose my steroid weight. Ryan and I were planning for the future and had decided I would relocate to Austin post-graduation. We would be getting an apartment together. It would save us money when we'd be spending our free time together anyway, and it would also be reassuring with my frequent complications to be rooming with someone I trusted to be there for me.

Despite Calculus II, I did finally graduate. I was looking forward to moving north to start my adult life and living with Ryan. It would be an eventful chapter in our lives. New city, new job, new friends, new doctors, and as always, new medical challenges.

*I say "experimental" because plasmapheresis had been used in other locales for years at this point. For example when I showed up in Phoenix and called it "experimental" the doctor laughed in my face.

Next up: Transplant one struggles for dear life