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!