The New Normal
After ten days of being poked and prodded at the Heart Hospital, the only long term treatment deemed necessary upon my release was the addition of blood thinners to my medication regimen. For the rest of my life. Once you start the Coumadin, you're on the Coumadin. I would need to be more careful about not banging into things, which for me was quite the challenge. Also I had added a cardiologist to my physician collection.
I settled into my dialysis routine, which was a more stable lifestyle than dealing with the last gasps of a transplant kidney. It may have been more stable, but it was time consuming and I hated it. Thankfully I didn't have much time to dwell on the misery of treatments because I was unbelievably busy. Dialysis (including the waiting room, hook up and take off) was fifteen hours a week, while work was more than forty. Whatever freetime I had left was spent planning the wedding. Because of the narrow window of availability for our desired wedding venue, we had just six months to make everything come together. I still can't believe we pulled it off.
Although I was very excited about the wedding, I wasn't crazy about actually having to "make decisions" about things like dresses, decoration details, invitation designs, etc. The cake tasting I was on board with. Who doesn't like cake?
My soon to be mother-in-law, Karen, had a friend in town who dabbled in event organizing and was nice enough to guide us through the process. That took a lot of pressure off of us, being able to go to her house, look at samples of things and just point. Still, it was some work. I remember spending many evenings after work putting together invitations and trying to address envelopes in my very neatest handwriting.
The wedding was in April of 2000, which is a great anniversary date for remembering how long you've been married. The ceremony took place at a venue called Green Pastures in South Austin, a beautiful property consisting of a large historic house with a wide wrap around porch, a huge lush yard complete with a gazebo for outdoor weddings, and peacocks. Everyone loves the Green Pastures peacocks.
I started the day with dialysis, but it was made a little easier by the presence of my mother. She brought pictures of me in my dress to show my nurses and techs who I knew well by this point. I had set up shop the night before in my parents' hotel suite so as to not be seen by the groom. After a short nap I went to get my hair done, visited with family members, and then jetted over to Green Pastures to get dressed.
The wedding was magical. We couldn't have asked for better weather for an outdoor event. You never know what you're going to get during April in Texas. It could be scorchingly hot, pouring rain, or a late season cold snap could make guests too chilly to be outside. Luckily we had none of that. It was sunny and very pleasant.
The reception was a blur, but what I remember most is thinking how strange and beautiful it was to see this odd assortment of people together. A wedding is the only time you will ever have your closest compadres and kin from different parts of your life all in one place at one time. Childhood friends, college mates, work buddies, aunts, uncles, parents' close pals all dancing and laughing in one room.
Of course the best part of a wedding is actually getting married. Little changed for us in a day to day sense as we had already been cohabitating for two years, but it made me blissfully happy to be officially linked with the person I loved most.
A couple of weeks into May we flew to Orlando for a week long honeymoon at Disney World. Look, I know it isn't the most glamorous or exotic destination, but we wanted to go somewhere in the U.S. and not in the middle of nowhere to make dialysis easier.
Probably the biggest downer about dialysis is that there is no escape. When you take vacation from work, you don't have to go to work for a week. You can't do that with dialysis. The workaround is that most clinics take travellers. There is a lot of planning upfront, but your home clinic does most of the work for you. Finding a facility nearby, scheduling dates, sending your treatment orders and recent labs. The only thing you can't control is your treatment time. If you're lucky and the clinic isn't busy you may be able to request morning or afternoon, but let's be honest, that never happens. All clinics are busy.
So dialysis ate into our honeymoon a bit. My treatment times happened to be in the morning and not the middle of the day, so that made it a little easier. We got to start our park visiting around noon on those days. There was still time to buy mouse ears, meet Goofy, and ride It's a Small World.
Summer rolled around and our lease was up at our apartment. We moved into a rental home the size of a shoebox coincidentally located in the Green Pastures neighborhood. Our beloved golden retriever Melbotis entered our lives. I enjoyed having a house of our own, even if we had to occasionally put out electrical fires in the seventy-year-old home.
In the fall my little fish company was acquired by a much bigger technology fish, Sapient Corp. We were all required to attend orientation in groups of about 15 at one of the corporate offices around the country. My friend Heather and I went to the San Francisco office so it would be easier for me to get dialysis. The meetings were three days long, so I would have to miss a day to go get treatment. Doug living in the area made that easier, as he could provide transportation.
Each group from Human Code had a leader who was in charge, to make sure we weren't sneaking out past curfew and whatnot. I'm kidding, we were not in high school. Still, even though I had told management back home I would be missing one of the three days of training, our trip leader had somehow missed the memo. When I mentioned I would be taking off the next day for dialysis, she just blankly looked at me and said, "well, you gotta do what you gotta do," sounding a bit put-out.
I found that amusing, but it was a reminder that for most people, dialysis is not on their radar. I had completely blindsided her with a statement no one expects to hear from a twenty-five year old.
The great thing about dialysis in San Francisco was that the clinic there ran three hour treatments, which BLEW my mind. This was practically a vacation. Cutting a whole hour off of the runtime? Amazing.
At the beginning of 2001 things calmed down, which was fine except that all of the changes of the past year had helped keep my mind off of the grind of dialysis. A sliver of hope arrived when my doctor gave the green light for allowing me to pursue a second transplant.
There was a theory behind leaving me on dialysis for a year and a half before another kidney. My doctor felt maybe the transplanted kidney needed to shut off completely to give the disease a chance to settle down.
He also nixed the idea of using another living related donor, letting Doug off the hook. Though there was no indication the disease was hereditary, there was also no explanation for why my disease came back into my transplanted kidney. Perhaps we needed to try some unrelated-tissue.
I don't remember much about the testing process to get on the transplant list back then, but I'm guessing they took a lot of my blood (which this time could be procured during dialysis) and consulted my cardiologist. The kidney transplant program in Austin was based out of Brackenridge Hospital, which used to be in the middle of downtown. Neither the hospital nor Austin's transplant program exist anymore in 2021.
Now it was a waiting game. It could be three years or longer before I heard anything. Dialysis became a depressing slog. Mentally and physically it was wearing me down. I kept not feeling well by the end of my treatments. An excerpt from one of my journal entries at that time reads, "got sick again at dialysis yesterday and then it ruined me for the rest of the day. I couldn't even go into work - even after I slept for a while. I'm getting really tired of that happening. I do realize that dialysis can't always go smoothly, but this seems to be more of a regular occurrence these days."
May 13, 2001 was a typical Sunday morning. Ryan and I had gone with Jason to enjoy some Einstein Bros. bagels and coffee. Almost immediately upon our return home the phone rang. It was the transplant coordinator, Melanie. She had a kidney for me.
I nearly dropped the phone in surprise. Kidneys weren't supposed to come this quickly, was this really happening? It turned out they had a perfect match for me and because that is so rare, if it happens you get first dibs.
My life turned around in an instant as we made plans to be at the hospital for an unknown amount of time. I gathered my things, said goodbye to the pets, then made a very important phone call. I called my mom and told her I had the best Mother's Day news. She knew immediately without me having to say another word.
Next up: Transplant Two
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