For many years I was the "Ruiner of Holidays". Of course that's an exaggeration and no one else outside of Ryan, who understood it was a joke, would label me as such. But it's how I felt. I have already detailed the year I brought everyone to San Antonio while I plasmapheresed and the first year in Phoenix when I had a crippling and undiagnosed Sed Rate, but there was also a year in between when I ended up in the hospital right before Ryan and I were set to go our separate ways home for Christmas, delaying our departures a few days. The fall/winter of 2005 took the cake, though, when I managed to bulldoze through each and every holiday.
My migraines had been so bad that year that they pulled focus from the actual underlying problem, that my second transplant was failing. Pheresis was somewhat slowing the process, but the outcome was inevitable.
In October I went in for one of my treatments and my fistula wasn't working. It had twisted in my arm, hindering the blood flow. They sent me immediately downstairs to get admitted for surgery.
The surgery itself was pretty straightforward. The large vein had managed to get a kink and needed straightening. I sadly don't remember the name of the cardiothoracic surgeon who helped me out that day, but I really liked him and would see him again. We'll call him Dr. Amazo because he was awesome.
Afterwards the on-call nephrologist entered my room in Desert Samaritan with a somber expression. He was a doctor who worked with Dr. Lambda, but it was my first time meeting him. He sat down and delivered the news. My creatinine had spiked and he recommended I go back on dialysis.
I burst into tears. It remains the only time I completely lost it upon hearing any kind of diagnosis. I was devastated. My memories of dialysis were horrible. An agonizingly long time sitting in a chair not feeling well, extremely strict dietary and fluid restrictions, and a crippling effect on my ability to travel were all reasons I panicked. Also I had already had two transplants. What were the chances I was going to be allowed a third? The possibility that I was staring my permanent future in the face was unacceptable.
The poor doctor did not know what to do with this thirty-year-old woman suddenly crying. I was embarrassed for losing my composure in front of him, but after the year I'd had it was too much. He left me to think about it.
The following day I had entered the bargaining stage of grief. I had been doing pheresis once a week. What if we increased that? Why not do three or four? The doctor agreed to try two weeks of intensive plasmapheresis and then reevaluate my labs. He also said if my bloodwork was stable I could go home the next day.
The next day, a Monday, was Halloween. Ryan and I took a little comfort in knowing we would be home in time to distribute our 3 tons of candy to the neighborhood kiddos. Ryan had also ordered a bunch of ashcan comics to give to the kids, which we were very excited about. Halloween in Chandler was always a delight. It was the first few days of fall in Arizona that didn't feel like your eyeballs were going to boil in their sockets. You could sit outside and chat with the kids and their parents. We were very much looking forward to that.
My labs didn't come back until three o'clock that day. The doctor made rounds at five, seemed satisfied with the results, and said he would order my discharge. We waited.
At ten o'clock that night I got my walking papers. We had missed Halloween.
We called in reinforcements for the intensive rounds of plasmapheresis. My mom flew out for a week to accompany me to my treatments and help around the house. It was always nice to spend more time with my mom and the mom-cooked meals were certainly a bonus. Because she was the office manager at my dad's orthodontic practice she could take time off without getting fired, but a week was pushing it as things around the office were always a bit strained without her.
The following week my mother-in-law Karen took her turn. Karen and I had always gotten along, but I credit this week as the point where we really got to know each other. She went with me to my appointments, asked a lot of questions there, and we generally just shared stories. I think she got a better understanding of what was going on with me medically and I understood her better as a person. It was good for both of us.
Pheresis did nothing to slow the decline of my transplant functionality and by mid-November I was back at Chandler Regional ER, this time unable to breathe from fluid overload.
Having fluid in your lungs is a terrifying feeling and I grew increasingly panicked in the waiting room. Ryan pestered the check-in nurses several times until he convinced them I couldn't breathe. They didn't yet have a room for me but brought me back to the triage area to get some oxygen. It helped only a little.
Finally getting a room inside the ER (it was an actual room with a door this time), I struggled to find a comfortable position on the bed. The hospital was particularly busy that day and they were having a hard time finding me a room so I could be checked in. I spent hours curled up on my knees facing down as that felt like the only way I could get any air.
I was admitted. Dr. Lambda came by. Somberly, he told me what I already knew. The pheresis had not worked and I needed to restart dialysis.
There was no objection from me this time. It's hard to be stubborn or argue when you can't breathe.
I was set up in a dialysis center in Ahwatukee. Thanks to the brand new highway 202 that ran just south of our neighborhood I could make it there in less than 15 minutes at 6 in the morning; a journey that if using surface streets would take a half hour.
I began treatment the Monday before Thanksgiving. Serving just 16 patients with one nurse and four technicians, the clinic was relatively small, but it was new and clean and didn't feel cramped. My first treatment went well.
On Wednesday I pointed out to my technician a dark spot I had noticed the day before that was on the lower part of my fistula. The nurse took one look, said "that's infected," and sent me straight to the hospital.
Well shit. My parents and Doug and Kristen were all scheduled to arrive that afternoon. We were having Thanksgiving in Arizona again due to my inability to travel on short notice. I was going to miss Thanksgiving.
Look, I do a lot of complaining in this section about how many holidays I missed. I just want to take this opportunity to acknowledge all of the hardworking medical staff who routinely sacrifice time with their own families to work holiday shifts. It can't be easy, but for what it's worth their presence (for me at least) was and is much appreciated.
At Chandler Regional I was quickly admitted. The family showed up and started making visitation rotations. Meanwhile, the dark spot was rapidly expanding. My dad and Ryan were with me when Dr. Amazo arrived to examine it. He decided to lance the infection to get a better idea of what we were looking at but also to relieve some of the pressure. Ryan excused himself, but my dad stayed and because of his medical background asked a lot of questions while handing the doctor gauze (with gloved hands). It was very gross.
The infection was a MRSA (Methicillin-resistant Staphylococcus aureus), which if you're not familiar is the worst kind. We would have to do surgery right away to remove the source and then follow that with intense antibiotics.
By this time it was midnight - the night of Thanksgiving. While I was wheeled away to the operating room, my dad departed the hospital and Ryan settled down to sleep in a chair in the waiting room while the surgery proceeded to take twice as long as predicted. Then afterwards they switched my room without asking and threw away my flowers. By the time Ryan finally found me he was not a happy camper, but in the wee hours of the night still put on an encouraging face for me and recounted the Suns game I had missed.
It wasn't until the next morning when I was more alert that I learned what had transpired during surgery. Dr. Amazo determined the damage to my fistula from the infection was so great he needed to remove a section of it then repair it with a vein transplanted from another part of my body. He located a vein in the upper part of my left leg that he felt would do nicely and just....moved part of it to my arm. Which is apparently a thing they can do. I'm still in awe years later.
Ryan and I had missed Thanksgiving the previous day while the rest of my family were at our house making turkey dinner and taking care of the pets. I know they weren't back at the ranch having a party and were getting back to us as soon as they could but knowing we were missing out hurt my heart a little.
On Friday my mom arrived with little tupperware containers of leftovers and Ryan and I ate ravenously. It wasn't the same as fresh out of the oven turkey, but after a couple of days of hospital food it tasted great.
Though I desperately wished to be discharged from the hospital before everyone left, I ended up staying through the weekend. MRSAs are nasty and they wanted to closely monitor the Vancomycin (antibiotic) that slowly dripped into my IV. I was devastated to learn they had scheduled a dialysis treatment for me Sunday afternoon. The dwindling hours remaining to spend with my family, most of whom were departing that day, had been completely erased.
I was wheeled down to Chandler Regional's cramped dialysis unit and thought maybe there was a chance I would be finished before Doug and Kristen had to leave for the airport. The crushing helpless feeling when I did the math and realized that wouldn't happen overwhelmed me. They made a brief appearance in the dialysis room to say goodbye, but it was still achingly sad.
Monday I was sprung from the hospital, one day after most everyone had departed (my mom hung around for a couple of extra days). As is the theme of this entry, Ryan and I would be missing Christmas. It would be the first time for either of us to not spend the holiday with a set of parents, but we would make the best of it at home in Arizona. Upon my release I was treated to the spectacle of Ryan and my mother attempting to assemble an artificial Christmas tree that had incorrectly labeled parts. I watched silently as their moods rapidly shifted from amusement to irritation as they struggled and argued about the correct configuration. I think it was the only time I ever heard them snip at each other.
Our one sliver of comfort was that Jason would be coming for Christmas. I'm not gonna lie - though we missed the "family Christmas" that year, it was fun in its own unique way. We were free to explore activities that were not etched in tradition. This included getting lost out in the desert looking for Christmas lights, marvelling at the 30 foot tall Christmas tree made up entirely of tumbleweeds in downtown Chandler, and just hanging around the house with Mel, Jeff the Cat, and Puppy Lucy. It was also ground zero for the Jones Soda Holiday Taste Test Incident.
Then, after Christmas, something remarkable happened. Life became....amazingly normal.
Aside from dialysis three days a week, I had virtually no appointments. I saw Dr. Lamba at the dialysis clinic. Lab work was drawn during treatment. My migraines were responding to my prescription medication and I was no longer shuffling off to the ER every third day.
Making life easier this go-around on dialysis was not having to worry about work. Also, in the years since I'd had my transplant, the technology and methodology of dialysis had changed. They were taking a more personalized approach to each patient's treatment and not running everyone at a flat four hour rate. Not only do different people have different amounts of blood to clean, they also take care of themselves with varying amounts of discipline, thus requiring different amounts of filtration.
My first day of treatment I was informed I would be starting at three and a half hours with the possibility of further time reduction in the future with good behavior.
Those two things made all the difference. Mentally it was easier knowing that I wouldn't be on the machine as long and when I did finish I could just go home and rest instead of having to rush off to work. Also, because I was getting more rest at home I was generally just in better physical health.
One aspect of returning to dialysis I wasn't so jazzed about was the fact that at this clinic, they frowned upon lidocaine. In fact, my first day there my tech informed me that lidocaine was terrible for the longevity of your fistula. If I wanted to have a lasting relationship with my fistula I would need to forgo the lidocaine.
"Well that sucks," I thought. I reluctantly agreed to go without and just take the needles without anesthetic. Did it hurt like hell? Yyyyep, it sure did.
By the time we had completed four years in Arizona we had had enough. Ryan had been searching for jobs back in Austin for months and had recently started casting a wider net to other cities just to get us back to Texas, but it turns out companies really hate having to pay to relocate their employees. In the summer of 2006 we finally broke and said, "let's just go."
Was it risky? Yes. But we were afraid if we did not take this chance we would lose our opportunity. The writing was on the wall in regards to the crumbling housing market and if we wanted to make any money on our house in Phoenix we would need to act fast.
Our decision was made. We put our Chandler home on the market and began our search for a new residence back in the heart of Texas. Come hell or high water, we were going home.
Next up: Transplant Three?