A Leaf on the Wind

So I’ve been on dialysis for a little over a month. It’s been pretty smooth, about what I expected. Since I wrote last they switched from my shoulder catheter to my arm graft, which has healed pretty well. It looked kind of brutal for a while. I have pictures. J

I’d like to take some space here to share how this has been a particularly hard spring, and to try to articulate how dialysis, which is pretty much just sitting in a chair for about 4 hours, can be hard.

They (at dialysis) started using the graft in my arm mid June, and everything went very smoothly. They use 15 gauge needles, which aren’t the smallest needles (I think the needles they use for blood donation are 18 gauge?). But the sticks aren’t too terrible, and using the graft meant I could have the should catheter removed and could finally take showers. Lovely lovely showers. Like so many other things, showers are best appreciated in their absence. I have such a clear memory of returning from traveling in countries like Morocco, Egypt, Jordan, India and being able to drink tap water, have hot showers, I was so grateful for having running water of any kind. Not something I would think to appreciate, but like a clear nose after a cold, being able to shower after three weeks of half baths was marvelous. Pulling the Hickman wasn’t bad at all, though I was plenty worried about it. You’ll notice a small red band on the catheter, that’s a cuff to which my body attaches to hold it in place. That was the only sticky part, a slight tug and it was out. Door to door it was about 15 minutes. The other day I got the insurance statement, which noted a charge of 1990.00 for outpatient surgery. Wow. 

You can see the outline of the graft, which makes a loop connecting an artery with a vein.

This is what it looks like today. You can see the needle marks from the top side, and half of the outline. And the incision mark on my tattoo! 

This is what it looked like - the catheter went over my clavicle and was a bit sore while it was in. At first I could feel the tube in my chest which was not cool. 

The Hickman in all its glory. 

It was pretty hectic after MITY – C was out of town, I picked up a dog (as a never-owned-a-dog-person), got a piano and had part of the kitchen redone. Very exciting times. After the dust settled, it was July, and I started to come down from the shit show times. While I believe I have weathered these past few weeks like a leaf on the wind, I am finding that I have been uncentered a bit. This has passed somewhat, but particularly by the end MITY late June, I wasn’t sure where my center of gravity was. I had a hard time making decisions and wanting things, or know what wanting things meant. I would sit on the couch and feel unsettled, paralyzed, not really wanting to sit there but not able to come up with anything else. I found myself just wanting to watch TV shows, though again wanting isn’t really the right word. I would say things that weren’t true, which I would call “jokes.” It felt like someone else talking. Sometimes I would feel cornered, and realize I was kind of panicked, flailing around at nothing. I was more just a body, ungoverned, lurching from thing to thing without enough consideration. I was a bit dead inside, which was and has been a useful defense for me when life gets crazy. When I was last on dialysis (which I did at home at night, but still), I played Civilization III and ate chocolate chips on the couch at my parent’s house. I have no idea how much, but a lot. So many chocolate chips – sometimes a bag a day. 

This early summer, coming out of that late spring malaise, dialysis was at times boring, easy, and quite difficult. Because my blood is going through a machine, my body responds to the loss of volume by increasing my blood pressure (this is a cool, useful thing is one’s hand is bitten off by a saber tooth tiger). But mine would spike around 180/110, which is way too high. It’s getting better, but that kind of thin wears a person out. I would walk out of the clinic kind of dazed sometimes, too hungry, and physically off. Other times are just fine. But it is an obligation I would rather not keep, and like other such obligations, this one wears a bit over time.  

Otherwise it’s been a relatively normal summer. MITY went well, it’s such a treat to teach such great kids with such a great co-teacher. C and I got a puppy – a really sweet lab / pit bull mix we named Oscar. He is currently napping beside me on the couch. I enjoyed a number of world cup games, which were pretty spectacular, I was able to spend a week at Lake Melissa with my family, a summer tradition going back to before I was born, I’ve enjoyed lunch with teacher friends who also have the summers off, and recently got back on the bike again, all of which has been great. Like most summers, it took me a while (until this week) to get productive but I’m not gonna beat myself up about that. Also, I’m starting to think about teaching in the fall – I’ve got some ideas, which means I am pretty well rested and getting ready to go. I’m looking forward to more biking (anyone interested in easy, re-hab style biking?), reading and hanging out with Oscar, who is just interested in being loved and smelling interesting smells. I wish you lots of love. Keep smelling interesting smells. Thanks for reading!

Thank you for enduring the medical photos. This is my niece, Miri, playing with Oscar at the lake.