The dialysis folks were able to line up treatment near my parents’ house in South Dakota, so I’m back here for a couple weeks. I had my first dialysis treatment at the temporary place yesterday. It went fine. Everyone was very nice. My run doesn’t start until 4:30pm. That’s much more workable than the 5:45am start I had last year. The dialysis center is about an hour away. At any rate, it’s nice to be home for a while.
For the last two days, my needles have been clotting as soon as I’m stuck. That’s a bad sign for my access. The clot in my venous line today was huge–like four inches long! It was pretty gross! Anyway, we’re going to use sharp needles in a new spot on Monday and do some tests to see if my access is working okay. I get the feeling I’m going to v=be sent to the surgical center for another fistulagram. That’s a radiological procedure where they watch how blood flows through my access to check for narrowing of the vessel. If they find any, they can use a balloon to try to fix them. I had one earlier this year. It wasn’t any fun, and they didn’t find any problems
Everyone at dialysis is supposed to get the Hepatitis B vaccine because it is so easily transmitted by blood. I completed the four-shot (it’s actually four pairs of shots!) series a couple months ago, and my latest lab results showed that I now have antibodies. That means I could move to the other side of the clinic where the isolation room is (that’s where they put patients with Hep-B). Anyway, things seemed different when I sat down this morning. I couldn’t put my finger on it right away. Eventually, I realized that my new chair was even huger than normal. For those who don’t know me personally or haven’t seen me lately, I’m 5′ 8″ an weigh about 140 lbs. In other words, I’m not a big guy. The normal chairs are too big for me (too wide and too deep), so I use a bunch of pillows to make them more comfortable. This new chair is crazy. I guess a particularly large person uses this spot after me. Anyway, the chair could literally fit two of me. I checked. It wouldn’t even be uncomfortably cozy. They’re going to try to shuffle some people around so I have a more reasonable place to sit. I’m also right under a vent again, so I’m pretty freezing this morning. I’ll live and remember to wear my sweatshirt again.
Hey, everyone. Here’s just a quick post to say that nothing new is going on. Dialysis is going well. The buttonholes are developed and working, I’m waiting out the clock on mono and transplant. I go to the U of M in early August for an evaluation. It’s been about a month since I tried to get mono. No luck so far. I have another month to wait before it’s time to worry that I didn’t catch it. I don’t know what I’ll do if I get to that point. I’m optimistic that my persistent insurance issues are resolved. My labs have continued to be pretty good. Bottom line: I’m hanging in there.
I have a bunch of updates today:
First and foremost, I want to send a huge “thanks” to everyone who helped get the word out about finding someone with mono. Tons of people shared my status on Facebook, a bunch of people retweeted me, and a few even created posts on Reddit (I even hit the front page of a couple Minneapolis-focused subreddits). I got a ton of traffic from all those sources. I’m tremendously grateful to everyone who offered to help me catch mono. I think I ended up with more than 30 offers! I was overwhelmed by the generosity of the responses. As an example, one guy volunteered to drive to Minneapolis from Chicago. Talk about earning some serious karma! I ended up meeting and sharing lollipops with four people. I wanted to strike a balance between being sure to get exposed to the virus while still trying to limit the chances of catching a bunch of other stuff. I ended up choosing mostly based on how recently someone had gotten mono, whether it was confirmed to be just that by blood work, whether I had some trusted connection to the person (to reduce my risk of getting axe-murdered–happy to report I survived all four people, even though I had no referral/close connection to two of them), and how easy it would be to actually meet up somewhere.
My meetings with the four volunteers were pretty interesting. The encounters with the two people I was introduced to ended up being very transactional (show up, pass some lollipops, say goodbye). The meetings with strangers were a lot more social–getting a drink in one case and meeting for dinner in the other. I think maybe that, in the cases where there wasn’t anyone to make an introduction, making things a little more social helped an unusual and otherwise potentially awkward situation be a lot more comfortable. Sydney and Joseph, I really enjoyed meeting both of you. Thank you again to all four people who helped with my odd request. It will probably be a month or so until I’ll know if my plan worked because of mono’s incubation period before symptoms appear. I had a little bit of a sore throat for a couple days, but that seems to have passed. All in all, things are looking good so far.
Things are going pretty okayish at dialysis. The guy who normally does my needle sticks went to Europe for two months (fun!), so I have someone new. She actually managers to make things hurt a little less, which is always nice. That said, I have been bleeding a bit from the needle sites during my run. There doesn’t seem to be a pattern as to when it starts, how much I bleed, or which site does the bleeding. It seemed to start right around when I got my new person, but I’m not sure if that’s just a coincidence. At any rate, I’m not bleeding much, and the folks here don’t seem concerned. Tragically, I did bleed all over my dialysis blanket. Then I compounded the problem by forgetting to wash it right away. I guess it’ll just be like a cool scar or something to show that the blanket has been through a lot. We’re also starting buttonholes again.
I just got my latest round of blood tests back. My phosphorus levels are just above where they should be. This is the first indication that my diet leaves anything to be desired. I was a little worried about the results because I’d be cheating more than usual the last week or so, but most of the bad food has been high in potassium (like potato chips). The only change in phosphorus stuff has been a little ice cream now that it is summer. I cleared that with my dietitian last week (as long as I took an extra binder), but I think I need to put the kibosh on that. That’s really a bummer since ice cream is the one thing I really crave that I shouldn’t eat. I had been having some chocolate (since it is delicious), but I haven’t done that for a while, so it shouldn’t be responsible for this recent bump in phosphorus levels. Frankly, I’m a bit miffed and confused. Oh well.
Edit: Never mind that phosphorus stuff! Also, my blanket cleaned up like a champ. You can’t even tell.
After making it through all of April without any real setbacks, I had another infiltration today. As usual, my arm puffed up, hurt, bruised, etc. We were able to get another needle going and limp along at a low blood flow rate, so I kinda sorta got dialysis today. We had been trying to do buttonholes again, though just with the arterial needle for now. That wasn’t related to infiltration.
In other news, I’ve been the doctor a few times in the last week with leg pain related to Piriformis Syndrome. A muscle is having spasms that push the sciatic nerve in my leg against bone, causing lots of pain throughout my left leg. Normally you’d just take some anti-inflammatory medicine (like ibuprofen or naproxen), but since those are processed by the kidneys, I can’t use them. Instead, I get pain killers (tylenol didn’t make a dent) and a muscle relaxant to take before bed. I also get to start physical therapy on Monday. I’ve also been doing some stretches and saw a chiropractor. There hasn’t been much improvement so far. The muscle problem could be related to sitting at dialysis for long periods of time without good back support (the chairs are too deep). I’ve been using pillows to help, but I need to find a better solution.
Dialysis wasn’t horrible yesterday, but it sure wasn’t good either. We had some trouble with one needle, which meant that we had to turn down my blood flow rate. Getting worse dialysis isn’t good, so the staff kept messing with the needle trying to improve the situation. That just made my arm hurt more without actually improving the situation.
I got another not-so-nice surprise when I removed my bandages that night. I couldn’t get my arm to stop bleeding for an hour and a half, despite applying pressure for extended periods of time. I was about to go to the emergency room (that’s what I’d been instructed to do should I ever not be able to stop bleeding) when I finally made some progress and went to bed (way later than I’d intended). Thankfully it didn’t bleed any the next morning, and I was only a couple minutes late for work.
I just wanted to quickly mention that dialysis continues to go fine. The insurance issues seem to be sorted out for now.
I had a moderately frustrating conversation with Mayo last week. I got conflicting information from different people there about how well I match with people who have already volunteered to donate to me. The good news is that it seems like there are at least a couple more workable possibilities. Another person was scheduled to go to Rochester for testing, but I asked Kay to work on scheduling someone else. After the best donor in the pool feel through, they scheduled my aunt (I know this from talking to my aunt, not Mayo). Unfortunately, she’s a lot older than me, and it’s likely that a younger donor’s kidney would last a lot longer. We talked about maybe doing a paired exchange with my aunt’s kidney so that we could trade for a younger one. That seemed reasonable until I asked if the other one or two decent matches in my pool were closer to my age. It turns out they were. Mayo had scheduled my aunt to come in because she was really motivated (thanks, Jean!), but I told Kay that it doesn’t make any sense to try to trade a kidney from my aunt when there are equally good, younger candidates who have volunteered to donate directly to me. As I said, I’d rather have a young kidney from someone who is merely willing to donate than an older kidney from someone who is absolutely psyched to donate. Kay’s going to try to schedule someone else. I was at least glad to hear that someone else was scheduled. I still sort of have the impression that they aren’t moving with the sense of urgency I’d like, but at least progress being made.
I also want to briefly mention that dialysis has been going okay so far in April. In fact, I haven’t had any trouble with the needles since my fistulagram, even though they didn’t find anything to fix during it.
I need to call my insurance company again since they keep denying dialysis claims because they think I’m eligible for Medicare, even though I’ve already told them three times (via mail and phone) that I’m not because I haven’t worked the required number of quarters according to the Social Security Administration. Ugh.
Because dialysis didn’t work at all yesterday, I had to go somewhere that is open on Saturdays. The Fresenius center in Robbinsdale is even newer than my normal place in St. Louis Park, MN. It is a lot darker than my normal center, which is nice since bright lights seem to contribute to the headaches I get at dialysis. We got both needles in on the first try, and things seem to be going well.
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