Starting Dialysis in 3 ... 2 ...

Hey team – I just started my first run on hemodialysis at my new part time job: Monday Wednesday Friday from 4-730. It’s the clinic I wanted, where my nephrologist Dr Hall is the main dude, on 43^rd and Nicollet. The evening shift is quieter, the chairs on either side of me are empty. I’m facing a set of windows looking south on Nicollet, so if you’re driving north and seeing that bank of windows as you past the Frame-Ups, that’s where I sit. This spot is above where my transplant center was for years and I have a lot of memories of parking in the lot and dropping in for lab draws. I’m not sure how to describe what it feels like to be upstairs.

I used to wonder at who was up here. When I would see the clinic I was always grateful that I was going downstairs, grateful that I was making a quick stop and not stuck in a chair for 3 hours. Now that I’m up here … I don’t feel as despondent about it as I worried I might. Like so many of the changes I’ve faced this is now the thing I’m doing. For a moment I felt like I was living someone else’s life. When I was a kid, riding in the car, and especially at night, I would wonder where the other cars were going. I would picture myself in their car for a second, going the other direction in the night. The lights on their dashboard, their destination in mind. Now I’m in one of those clinics I used to drive by wondering who is inside.

I don’t know, I’m noticing again that it is a little difficult to differentiate between what I’m feeling and what I think I ought to be feeling. I don’t think I’ve encountered the hard part yet, at least it doesn’t feel like it. To hook up to the machine I’m using the shoulder catheter, so they don’t have to put needles in my arm (that will start next week, hopefully), so sitting here doesn’t really feel like anything. Just that I have to be here. So long as I’m cool with sitting here, it’s pretty easy. It doesn’t feel like a confinement, at least not now.

Maybe I’m feeling alright because my hospital stay was a little rough. Nothing too eventful, but I think I expected to be in better shape, and to be more comfortable because I was going in relatively healthy (not passing out) and only had a minor surgery. That part went pretty smoothly – they placed the catheter in my left shoulder in about 15 minutes. Like the graft placement, I was under conscious sedation and have some memories, and it seemed to go pretty smoothly. When they placed the arm graft I could feel them pushing and pulling on me, I could tell it was a bit rough. This one was fine. I was in a neural unit briefly waiting for a bed on the nephrology unit, where I moved in the early afternoon.

That afternoon I dialyzed for the first time. It seemed to be in a different room from when I dialyzed in Abbott in 2003 after they removed my Mom’s kidney, though it’s hard to know how much of that memory is real. I remember sitting in a chair when the surgeons came in – I had gotten to know these guys pretty well, they operated on me in November 2001 to put in my Mom’s kidney, they we had consulted and they operated on me again that March, the 17^th I think. On a check-up they found a growth in the transplanted kidney, a biopsy showed that it was a neural schwannoma, a nerve tumor growing in the kidney. Of course, like so many other things, this was unusual to the point of being unheard of. They tried to take out the tumor only and save the other lobes of the kidney but were unable. They came in to deliver that news while I was on dialysis. They came in kind of quiet, almost contrite. For whatever reason I was absolutely unperturbed by this turn of events and my memory is that I cheered them up. We chatted for a bit and they went on their way. Being on a machine in Abbott this time around, I can recreate that memory, though I like it the way it is. Incidentally, and I mentioned this before,  the radiologist who performed that memorable biopsy (he had to rebiopsy several times), performed another biopsy on my a year or two ago. I mentioned that this biopsy was much smoother than another one I had had years ago. He asked if it had been on a donated kidney from my mom and remembered it. He said the lab kept asking from more samples because they weren’t getting kidney tissue. Of course this was because he was collecting samples of a huge tumor.  I love telling that story.

Anyway, this hospital stay was only about 36 hours – Tuesday morning to Wednesday afternoon, though it felt a great deal longer, longer than I expected it to. I think because I was out for a bit during surgery, and because I did two runs of dialysis, it felt more like 4 days than a day and a half. My shoulder was more sore than I expected, so sleeping was a little tricky. Also my neighbor had some dementia and was a yeller. It was unsettling at first, like a nightmare, to have this woman yelling for help next door to me. Hospitals are kind of like an alternate universe. The reality of the room and hallway and beeping blurs into TV shows and movies. This is compounded by a lack of sleep, pain killers, feeling sick, etc. Mostly being there is fine, boring, but I can’t help but perceive this undercurrent of panic. Occasionally if a nurse is too busy to respond to a call right away, or if a woman is screaming for help next door (!), I can feel the reality of the room and my situation slip a bit and every possibility becomes real. It’s hard work, being in a hospital.

Now that that’s over, the rest of the world doesn’t seem so bad. I’m starting MITY on Monday with Ellie. This is our fifth year teaching together and we can’t seem to both be on our feet. Last year I had just had my second nephrectomy two weeks before we statred and she was pregnant. This year she has a six month old and I’m doing this. We make a good team and I’m not worried about it. I feel lucky to be there. I managed to finish the school year without missing too much time (other than for that cold) and now I’m able to teach again, having conveniently spent my two week break feeling sick as shit and being in the hospital. That sounds whiney but I wouldn’t want to miss any more school. I’m pleased with myself for the work I was able to finish this spring term. I finished all of my courses at the U and St Thomas on time (barely) and I have to finish up one more paper for a directed study that isn’t on any timeline. I believe I’ve managed to live my life so far without too many compromises or interruptions.

I’m not sure what dialysis will mean for my life this summer and fall, though I’ve been eager to slow down after this past year and this will certainly afford me lots of time for that. Ellie Dan and their munchkin Simon live about two blocks from here, and there’s a great burger place on this block – The Lowbrow. Maybe that will mean lots of post-dialysis burgers this summer. My mom is here for a visit so I’ll wrap up. It’s not a great visiting place and I’m not sure how to navigate that for friends / family quite yet but I’ll keep you posted. As always I’m so grateful for the support you show by reading the blog and the thoughts and well wishes. Thanks for reading!

Donor Info and Shit Show Installment Two

It’s been a busy two weeks. Before I go into that: Today, Monday, I had a series of appointments at Abbott to prep me for transplant (hopefully in January). I now have an important number. Susana Gust is the donor coordinator for my transplant team. If you are interested in being tested for donation, she can be reached at 612-863-8886. You are never under any obligation – you can back out at any time. I have no access to any information about this. They keep me in the dark: I don’t and will never know who calls or gets tested unless of course you end up being the donor. I hope to write more about this later, but I’ll say here that even considering that any of you would think about being tested is overwhelming to me. It’s big big big. I tear up just thinking about it. Phew!

So here’s the latest installment of the spring 2015 shit show.

I had a cold type thing the week of May 25^th, so I was out of school on the last week, which was a bummer. That Thursday I went to an appointment to get my arm checked out for the dialysis access with vascular surgeons. The doc guy found clots in whatever veins they would use to make a fistula, so they would put in a gore-tex graft connecting an artery and a vein to be used for dialysis. And they could fit me in for the surgery that day. So I left to pick up Corinne for a ride home after the procedure and had the graft placed that morning. I kept an appointment that afternoon to get checked for pneumonia, though the surgery drugs continued to do their thing and I have little memory of any of that. I tried to work on Friday but only made it through two periods. And my arm hurt like hell.

I finished the year with finals on Monday and a retirement send off for Dick Engler on Tuesday, but my arm was awfully sore and I was increasingly feeling shitty. My labs on Wednesday showed that my creatinine had risen to 5.4 (a full point from one week before) and my doc wanted me to start dialysis immediately, which meant having a second access put in – a temporary shoulder catheter I also had when I was first diagnosed in 2001. I’ll post pictures of some of these later. I was pretty embarrassed about the catheter port the first time around and I’m ready to move past that – and bring you with me J.

I balked at the idea of having this surgery, as I balked at having the fistula back in January when it first came up. I had hoped to limp to the finish line of transplant eligibility in January 2016 without dialysis. Now I hoped to limp through the healing time for the fistula graft – 3-4 weeks – without needing the secondary catheter. There is risk associated with the shoulder catheter / access – it can cause vein stenosis (narrowing) which can lead to arm swelling. I already have a bit of that from the last time around. Additionally, if the shoulder access is in place for a while, it can become attached and difficult to pull out (this is one of a few traumatic memories from my early diagnosis – the guy pulled so hard on the catheter I thought my face was being pulled off). Anyway – I hoped to avoid it to no avail. I had waited too long to have the fistula placed that I felt sick enough for dialysis before it was ready, and tomorrow (Tuesday), I’m having it placed. I should only need it for a week or so, so it shouldn’t cause any trouble.

On the plus side, being sick now will help me appreciate the good the dialysis is doing – I’ve felt a motion-sick style nausea off and on since Thursday of last week. At this point, I’m ready for the treatment. I’ll be staying at Abbott for a day or two to make sure everything goes smoothly, then back home. Thanks for reading!

Start of the shit-storm

In some ways starting the dialysis process is a relief.

After the second surgery and being cleared of cancer last June, my health focus went back to ordinary creatinine levels, which were rising. As of December, they had floated to around 3.2, 3.7, 4.1, which was higher than my previous levels in the 2s. As a reminder, 1 is normal, and somewhere around 5 or 6 is generally where people would start dialysis. A person can live comfortably on dialysis for years, though it is not my idea of a good time, and it’s not particularly healthy for a person. Of course, a person is eligible for a kidney transplant when they reach the level where they need dialysis. I’ve met this requirement since January 2015, where I’m eligible for dialysis or a transplant, but I’ve not started dialysis because I have felt alright, and we haven’t scheduled a transplant because I can’t have one until two years after they removed the cancerous kidney, or January 2016.

This put me in a strange situation. I am not eager to have another transplant, but as my numbers increase and as I start to notice some symptoms of kidney failure (which basically feel like a hangover: low appetite, malaise, not healing as well, etc), getting a new kidney becomes a bit more attractive, especially as it became apparent that it was only a matter of time. However, because I’m ineligible until January, I’ve been desperately trying to hold on to every point of creatinine, hoping to avoid going on dialysis. This is a far cry from the freedom I had experienced earlier for the past 10 years, when my kidney function was stable for years on end, or the freedom from choice I had when I was first diagnosed and needed to start treatment immediately.

 In one sense, the kidney has been on an inexorable decline – there’s nothing to be done to stop it. At the same time, a quick google search will turn up dozens of diets, cleanses and tricks for improving kidney function. This spring I started to take my declining numbers personally.

I’m not a hypochondriac, nor do I generally put stock in health tricks outside of moderation. Still. I would read about changes in diet – less meat, less salt, less potassium, less sugar, more echinacea – all seemingly healthy options. But attempting to enact all of those changes while living a life was more than I could handle, especially as eating had become a way for me to relax and treat myself. As I became more stressed about my declining numbers (stress compounded by my aggressive academic schedule), I started to find EVERYTHING I ate as contributing to my kidney’s decline. Of course, I had to keep eating, but it was a chore. I would get cereal as a treat, and then discover that it was super salty. I learned that bread is about twice as salty as corn chips. Going out to eat inevitably lead to too much meat AND too much salt. I would have small successes, like pan fried salmon and brussel sprouts, but those were rare (and expensive). Plus, every day I didn’t exercise felt like a type of failure.

Being healthy wasn’t enough – I wanted to keep my numbers down. I was trying to control something that was ultimately uncontrollable, but something over which I was told I have a modicum of control. I couldn’t win.

However, I’ve had the fortune of experiencing the events of my life as preordained in retrospect. This is a form of letting go. Somehow, when the dust of each calamity, each elevated creatinine, had settled, I inevitably looked back and thought, yup, that happened. That was a thing that happened. That is now part of the story of my life. These countless clinic rooms, familiar blood draws, unknowable hospital stays – I took these on, both in those moments and into myself. My body became imprinted with these stories: laughing exchanges with my kidney nurses and doctors; the taciturn reception I received to my bad jokes with lab technicians; blurry trips to miserable ER rooms, then miraculously back to normal in a few days; and every calculated response to a concerned “how ARE you?”

Perhaps it has been my mercurial identity that has allowed me to weather all of these stories, all of these selves. Yet there is something sticky within me, something durable that has been shaped and hardened by these experiences. I have resisted performing a sick body for so long that now that it comes time to be sick, I’m struggling to act. Every time I faked it a little bit I made a deposit into an identity to which I no longer have access. The inconvenient parts of my experience had no voice. All of that shit has been building and a solid wave of it is coming at me right now. That sounds a little dramatic but it allowed me to say that life feels like a bit of a shit-storm right now, which is kind of fun. Thanks for reading.

Authentic Living

When I started high school I wanted to be the life of the party. I wanted people to laugh at the jokes I told, to circle around me – I started doing plays and loved it. I wanted desperately to be special, to have some standout quality that set me apart. By about my junior year I had become that person, popular within my crowd of high school theater nerds, band nerds, and I began to crave a different personality. I wanted to be brooding, quiet, I wanted to be fascinating, mysterious. I wanted to be wounded somehow, and I became expert at drawing people (particularly girls) to me by appearing like there was so much more to me than I shared. This worked. In fact, I have been accused of getting whatever I want more than once during my life, perhaps because I have always been keenly aware of the personality I inhabit, and I have used that shamelessly to get the attention of love I wanted.

There are obvious downsides to this, of course. There was no satisfaction involved in getting what I wanted, because the goal was not to attain something but to be able to attain it. I lived for the chase, for flirting, but this pursuit was necessarily empty. The other downside was my mercurial identity. It was difficult, sometimes, to know who I really was, or what I really felt. Even in quiet moments by myself I was completely aware of myself, seeing myself as some other subject might see me. When my kidneys failed in 2001, it was easy to become the person others saw, or wanted to see.

Almost instantly I became the young man who was handling everything so well. My interactions with health care people followed a predictable pattern. During the “interview” when they asked about my symptoms, double checked lab requests, whatever, they would ask what had caused my kidneys to fail, I’d say no one knew, they’d say something sympathetic about how hard that must be, I was so young, etc, I’d shrug it off and tell them that it’s fine, it’s better than being dead, I was not curious about why they had failed and so on. It always mattered more to me that they were attentive and concerned for me, I was flattered. I came to enjoy these exchanges. I was a healthy person aside from this catastrophic fact, and being “brave” / indifferent in front of people who certainly experience the gamut of sick people made me feel great. I had this secret quality that made me extraordinary, and I had some control over how people talked and thought about it.

And honestly, to this day I have no idea what any of this means. I don’t know how I feel about this aspect of my life, sometimes dormant, sometimes dominant. I don’t know who I am in the face of it.

Today, I contacted a clinic about having a dialysis access put in my left wrist. I resisted this for months – perhaps too long. The access will need some time before it can be used, and I’ve started feeling the elevated creatinine levels. My resistance came, in part, from a view of myself that had hardened over time – that I was in control of my body, that I would not be limited by my body, that my illness was a type of performance that had not invaded my deep sense of self. I didn’t want the access put in, and if I was strong enough, or ate certain foods, or thought a certain way, I could limp through the year to January 2016 when I am eligible for a transplant. Being sick is no longer a performance I can access intermittently when it serves me, my sickness has forced its way to center stage. There have been times when I’ve been sick, of course, WAY sick. But these were always temporary and hidden from my public self. I’m now facing in-clinic dialysis treatment, starting some time this summer and going through Christmas. The last time I was on dialysis, I sat on a couch and played Civilization on the computer and ate chocolate chips for nine months. I did not inhabit a sick body, I took my leave until I was transplanted in April 2003.

Who will I be this time, facing this sick body? What body do I perform to the world? Despite dialysis, it will be a struggle to enact myself as a person undergoing treatment for a chronic disease. It will be hard for me to present myself genuinely, without sharing my stories strategically to generate the response I want. It will be a sad and beautiful time, and I hope to live it authentically, whatever that means.

Thanks for reading.

Health Update: No Cancer! Yay!

It’s Friday afternoon as I write this. Ellie and I are wrapping up our two-week Creative Writing session, our fourth such session teaching at MITY. It’s been a good session with good people all around, and it has been unexpectedly taxing, as always. For my part, I’ve been taxed physically. I had the second surgery on May 30^th, just before the end of the CDH school year, and have not yet been able to re-start my EPO shots that boost my red blood cell count, which still floats in the 7s. Between those and a rigorous MITY session, I’ve explored new ways of being tired day by day.  I’ve discovered head-ache tired, nauseous tired, can’t-eat-can’t-sleep tired, and ‘remember to breathe’ tired.

As expected, the surgery went as smoothly as before, though I hereby recommend not eating avocado the night before surgery, as I am convinced that it caused my post-op nausea and constipation, neither of which was much fun. Other than that, easy-peasy. I told my work that I was having a ‘minor medical procedure’ and that’s what it felt like. C and I were treated incredibly well by our Oregon family who sent us Green Fork food, by visits from friends and family including lunches walks and Mariokarting. Definitely nicer to recover in the summer than January.

The second kidney proved to have no cancer in it (yay!). Two days ago I had a CT scan to see if anything had spread beyond the kidneys and yesterday we heard that it was clear as well (yay!). C and I celebrated with a deluxe (insane) ice cream cone from Izzy’s and by having our basement drain roto rootered. I am waiting on a hematology visit to see what can be done about the low hemoglobin, but the summer continues. Last weekend we spent the weekend at C’s family cabin near Nisswa with the whole nuclear fam – the first time we’ve all been in the same room, much less a weekend at a cabin, for several years. Today marks week four after surgery. Tomorrow C and I leave to visit some Fourre relatives in Maine. And lots of World Cup throughout.

After sharing about the last surgery (and this one being a straight repeat) I’ve not felt very inspired to write about the goings on. Part of that can certainly be attributed to being over-tired and full of good life things. This entry feels a little perfunctory to me, but it covers the recent news, and is about what I feel like managing at the moment. I’m reminded of rushing through my travel entries from places like Egypt and India and Turkey. While the location feels less cosmopolitan, the stories of my life continue to feel vibrant and new, at least to me. Thanks for reading!