Mono thanks and dialysis update

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.

Today is not a good day

I’m not in very high spirits at the moment. I had another infiltration this morning in the venous buttonhole (the new one we started after the trouble a week ago). My arterial line is also, for the first time, giving me no end of problems today. It wouldn’t work with the dull needle, but not for a lack of (painful) trying, so we ended up using a sharp one. Since both needles are in sort of precarious or finicky locations, I need to hold my arm just right for the whole time today; its in sort of a stress position, too. That’s really crappy since I couldn’t get much sleep last night, so I’m very tired. We need to talk to my doctor about the arm. I’m probably going to need to go get an ultrasound and fistulagram (where they look at it with dye and widen problem areas with a balloon, like a heart patient). If that doesn’t work, they could do another surgery. The nurse assures me that we’re far away from needing another catheter and that there are plenty of options to try first. That said, I’m kind of freaking out a bit. I desperately want to avoid another tube in my chest.

It probably doesn’t help that I’ve generally not been handling, in terms of my emotional state, this whole situation as well for the last few weeks. I feel like all my coping capacity is being used up just dealing my kidney situation when it is all going according to plan. Setbacks like I’ve had recently really wear on me. Also, the insignificant but frequent frustrations involved with my daily responsibilities at work have had a tendency to upset me. I feel like I just have a really short fuse lately. I know I’ve been much shorter with people over the last month. I particularly notice it, unsurprisingly, on dialysis days. So far being aware of this trend hasn’t helped me change it.

The unseasonably warm weather this winter/spring has also caused my allergies to kick in early. Of course, all my antihistamines have kidney disease warnings. My pharmacist couldn’t find one that didn’t at least say to consult a doctor before using, so I was in bad shape all weekend (itchy eyes, sneezing, and the sniffles). Hopefully my doctor will be able to solve that problem today. And I have a root canal (my first, thank goodness, and hopefully last) this afternoon.

On the positive side, I got my latest lab results back, and they’re still excellent. My creatinine clearance rate (how well my kidneys are cleaning my blood) went down but is still surprisingly good, so my overall dialysis adequacy wasn’t affected much. I guess those little guys are soldiering on.

Good news so far this week

Since using the fistula went well last week with two 16-gauge needles, we moved up to the larger, 15-gauge needles this week. So far everything is going well. In fact, my doctor said that I can get the catheter in my chest removed next week! Yes! Bring on a freaking shower. It’s only be 16 weeks.

I talked to the dietitian today about the results of my labs from last week. As usual, everything is looking very good. I’m kicking butt with the diet. It isn’t even all that hard anymore. I was scared to hear that the person next to me has a phosphorus level of 9; that’s almost twice what it should be. That’s especially rough since phosphorus is the one thing dialysis can’t fix. I hope she gets that under control.

It seems like my kidney function is worsening a bit. My pre-dialysis weight has been trending upward. I’ve been eating a little more than normal, so I’ve probably gained about a pound, but I think the rest (usually at least a pound) is additional water weight (i.e. I’m making less urine). This isn’t unexpected, but it is still a bummer. I don’t want to have to start restricting how much fluid I can drink. Anyway, hopefully it won’t get too bad before I get a new kidney. *fingers crossed*