Transplant Three?

Previously on The Diagnosis

Our decision to move back to Austin infused into our lives a sense of hope long forgotten. The four years in Phoenix had started to feel like a trap, and with my declining health there was seemingly no way out. Dialysis had brought stability to our lives which made escape possible.

We were originally going to wait until Ryan found employment back in Austin to begin the process of moving, but no company wanted to take a chance on someone who did not already live in the area. 

One night we were discussing our predicament when Ryan just looked me straight in the eyes and asked, "what if we just pick up and move?"

It would be a gamble, to relocate without the certainty of an income on the other side, but if we didn't take a chance we might not ever get back to Texas. 

"Let's do it," was my immediate response.

We set a goal of September for the move and started contacting realtors in Chandler and Austin. Austin was easy as we had a friend who was a newly minted realtor in the area. In Phoenix we located a lovely woman named Pat to help us unload the Arizona ranch.

There were two major selling points in our favor. One, though the housing market was just starting to decline, our house had still almost doubled in value since we bought it. Two, those cow farms surrounding the neighborhood and gracing us with their scent that were "definitely going to be gone in 6 months" had finally disappeared in time for us to sell. 

Ryan and I flew to Austin for a few days to scout homes with our friend Kerry the Realtor in the south Austin area. We had lived there before leaving and though we couldn't afford to buy anything north of Ben White Blvd., there were plenty of options to the south. 

While we were there we stayed with Jason and his pup, Cassidy. I had the opportunity to test-drive a dialysis clinic near his house. I was pleased with the facility and still dialyze there today. In fact, the two techs I remember meeting that day still work there and are two of the nicest, most skilled dialysis technicians you will ever meet. They won me over.

After touring homes for a day and bickering a bit about clashing personal preferences, we settled on a mid-80s abode about two miles south of Jason's house. It needed a bit of work and so with our offer we requested $5,000 for repairs. Seemingly reasonable for a kitchen in which the oven door wasn't "technically" attached.

There was absolute silence on the seller's end. After a week they responded with a decisive, "no thanks."

Instead of negotiating like normal people, they were just flat out offended that we had dared ask for repair funds and took their chances elsewhere.

This put us in a panic because we had already sold the house in Chandler. We had one month to find a place to live as we were scheduled to leave Arizona on September 20th.

A stroke of luck had Ryan flying back to Austin for a job interview. A house had opened up in a new neighborhood we had already toured and liked, so armed with a disposable video camera purchased at Walgreens, Ryan and Kerry looked at the house and took video for me to see. I wholeheartedly approved so we put down an offer.

It was essentially a brand new home. The neighborhood, Grand Oaks, had just opened two years earlier and the owners had never planned on staying in the house. This meant they had made virtually no changes, so aside from some nail holes in the walls it was like moving into a brand new home.

September 20th rolled around and we were all packed and ready to leave. Doug and Jeff the Cat accompanied me in the Camry while Karen and the dogs were Ryan's passengers in the Subaru. It was a mostly uneventful drive minus everyone being punchy at the end of both days and Doug and I getting no sleep thanks to Jeff the Cat patrolling the edge of the hotel room in El Paso all night long.

Ryan and the pups stayed with Jason for a few days until we could officially move into the new house. Doug had taken a few extra days to help out and the two of us were camped out at the Austin Motel (highly recommended if you are ever in town). Jeff the Cat bunked with local friend Matt and reportedly did not leave the confines of the closet the entire time.

The new house, once we finally moved in, was much more spacious and "us" than the abode in Phoenix. We each had our own "offices" upstairs and there was a guest room as well. I was overjoyed to be back where there were trees and seasons and friends and family. Jason lived ten minutes away and both sets of parents would join us post-retirement within two years to homes that were each less than an hour away. This felt like home.

My new dialysis center was also about ten minutes away. While the facility was easily twice the size of the Arizona clinic, I liked the staff and felt comfortable there. 

The only hiccup with my dialysis treatment happened within a couple months of moving back. At the time, dialyzers were reusable and each patient's dialyzer was cleaned between each treatment. 

This is a dialyzer

One day about a month after moving back to Austin I got hooked up to the machine and almost instantly felt something was off. A few minutes later I was overcome with nausea and flagged down my tech to stop the treatment so I could throw up. The techs and nurses conferred and determined that I had formaldehyde poisoning.

These reusable dialyzers are better for the environment, but they are sterilized with formaldehyde. You know, that horrible smelling stuff that preserved the frogs you dissected in middle school. If the formaldehyde isn't rinsed out completely after the cleaning, it can get into your bloodstream and, well, make you sick.

About a month later it happened again, though thankfully I identified the signs prior to needing to lose my breakfast. I informed the staff that, environment be damned, I would be requesting a new dialyzer each time or I was leaving the clinic. They agreed. 

Incidentally, reusable dialyzers are no longer used on anyone. At least not at our clinic. Dialysis is a medical waste nightmare, y'all. They throw away dialyzers and tubing for every patient after every treatment.

In my mind dialysis was a stopgap, a temporary band-aid of a solution. I wasted little time badgering my new nephrologist, Dr. Miller, for information about getting a third transplant. I had already begun the transplant application process in Phoenix; had been vetted through tests, meetings, and already had six months under my belt on the waiting list. It turns out when you move out of state you can get your waiting time transferred, which is very cool.

Dr. Miller was cautious about getting me a third transplant. There was a reason my first two had only lasted five years each and if I were to pursue another it would be advisable to get in contact with the best transplant facility in the state, which for Texas meant Methodist Hospital in Houston.

I wasn't jazzed about having to travel so far for all of my appointments and a theoretical surgery, but my in-laws lived north of Houston and could be a home away from home. Plus I really wanted that third transplant, so I was willing to jump through any number of hoops to get one.

The testing process at Methodist was more thorough than any I had previously experienced. For my first transplant I had virtually no testing ahead of time. I was young and getting a kidney from a family member so that was fairly easy. The second transplant in Austin required some bloodwork and counselling. There was a similar process in Phoenix.

I would need to be at Methodist for almost a full week. My very lovely and generous in-laws played hosts to me and Melbotis the Dog, who I had brought along for moral support. Karen shuttled and accompanied me to all of my tests and appointments that week.

Although the tests were more numerous and uncomfortable, I began to think that maybe these workups signified that I would be in much better hands at Methodist. Along with lots of blood work there were individual and group meetings. 

Some of the other patients ended up asking me a ton of questions because of my two transplant-status. It's one thing to hear information from transplant coordinators and another to learn about the experience from someone who has lived it. I liked being able to share my stories with them and I hope it helped.

One of the tests was designed to gauge the function of my bladder. This test was WEIRD, y'all. They basically filled my bladder with a reverse catheter, then had me wait for as long as I could hold it, then let me "pee" it out. Which, if you've not gone number one in a while is a strange sensation.

The chemical stress test was the worst. A study that is used in place of a standard treadmill stress test, the chemical version injects a drug into your system that elevates your heart rate. The test wants to find out how well your heart functions when your pulse is high. It basically feels like you're having a panic attack, which if you think about it is kind of what happens. Your heart starts racing beyond your control and you get all sweaty and sometimes nauseous. Not fun.

In the last meeting of the week, a discussion was had about, "where would a third transplant go?" If you recall from earlier entries, my first two transplants were positioned up front in my abdomen because it's a much easier surgery than slicing through the muscle on your side to get to your native kidneys. I was all filled up with kidneys at this point and if I were to get another transplant I would need to have another surgery ahead of time to remove one of the transplanted kidneys and make way for the latest contestant.

The surgeon who had done my most recent transplant in Austin, Dr. Caffeinated, still practiced in town. Upon returning home I made an appointment. We chatted a bit to catch up on what was going on with my transplant (very little) and then discussed the operation. A transplant nephrectomy is a fairly straightforward surgery so he was not too worried. The last thing he wanted to check before I left was to touch base with Dr. Levy, my cardiologist.

Dr. Caffeinated left me in the room by myself to make the phone call. While I was waiting, the cardiothoracic surgeon who originally put in my fistula wandered by in the hallway. I said hello before mentally kicking myself that he might not remember me. It had been at least seven years at that point. He actually did remember me, probably thanks to the four or five times I came in for declots and my lengthy hospital stay that first fall. We chatted for a few minutes and he was very happy to hear the fistula was still alive and kicking.

Dr. C was gone for an uncomfortable amount of time. When he finally did return it was with a somber expression. I had a bad feeling about this.

He took a seat and asked me if I had discussed the transplant with Dr. Levy. I thought I had. I did, didn't I? Dr. C said he seemed surprised and was not thrilled about the idea. I was instructed to go have a conversation with Dr. Levy before we could proceed with a transplant.

My spirits were dimmed, but not extinguished. Surely there had been some misunderstanding. Maybe I could talk Dr. Levy into a green light.

Within a week I was back at Dr. Levy's office to get answers. I had entirely misread his level of concern. He not only disapproved of the transplant and subsequent transplant maintenance drugs, he didn't want me risking surgery of any kind. Period. Starting with a nephrectomy.

As I always did with bad news, I took a beat to digest the information and wallow in my discouragement. This was probably the end of the line for my transplant hopes, but I had one final option: a second opinion.

Look, I had complete confidence in Dr. Levy. He had proved himself an excellent cardiologist and clearly cared about my wellbeing. But that didn't mean I couldn't seek additional information. 

I got the name of a cardiologist in Houston and sent over my relevant medical records. A month later I flew to Houston for the day. Karen once again stepped up to play chauffeur and provider of moral support. My appointment was in the morning and didn't take that long. Once the cardiologist reviewed my chart and spoke with us for a bit he confirmed Dr. Levy's diagnosis, thereby shutting the door on a third transplant. From here on out dialysis would be my only option.

I don't want to end this on a sour note. The truth is, dialysis has been pretty good to me. I know that sounds insane, but my body was just not happy with transplants. With dialysis I wouldn't be constantly wondering when my disease would return. I wouldn't be on immunosuppressants. I wouldn't have to do plasmapheresis, which made me feel terrible. I wouldn't be in the hospital as much. It would mean a lot fewer surprises for me and most importantly Ryan, who had had his life upended for more than ten years dealing with this nonsense.

I got into the rhythm of treatment and started to feel like I somewhat had my life back. Things settled down for both of us once our lives were no longer revolving around my medical care. For the first time since my original diagnosis the new normal was actually seeming pretty normal.

*Kidney artwork by Ryan J. Steans

Up next: Matters of the Heart, the Second Part


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