The nurse and I misunderstood each other! I thought she said I was 0.2 above the recommended max, when she was saying I was up 0.2 from my last reading, leaving me still 0.8 below the top of the recommended range. Ice cream (in moderation, as always), here I come.
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.
There’s good news and bad news on the transplant front. I have an approved donor and can schedule a transplant. Doing so at this point could give me a nasty form of cancer that would likely kill me. Catching mono before the transplant would greatly reduce the odds of that. Do you know anyone in the Minneapolis area with mono who would save my life by sharing a drink with me?
That probably seems like a really odd request, so let me provide some more information.
The main reason it has been so hard to find a good transplant match for me is that I don’t have antibodies against Epstein-Barr Virus (the virus that causes mononucleosis). EBV infection is usually pretty harmless, but, when combined with immune suppression in the aftermath of a transplant, it has been strongly correlated the development of a rare form of cancer called post-transplant lymphoproliferative disorder (PTLD). According to information from my nephrologist (who got it from a peer-reviewed, electronic medical database called UpToDate which was updated in April 2012), the overall rate of PTLD among kidney transplant patients is 1-3%, but the risk is 24 times higher for EBV-negative recipients. PTLD is fatal 65-75% of the time. Even when not fatal, treatment can involve all the nastiness usually involved in cancer treatment as well as a reduction of immune suppression, which can lead to rejection of the new kidney.
I would obviously like to avoid all of that. The best way for me to minimize my chances of catching PTLD are to get EBV before a transplant. People are most contagious when they have mono. I want to find someone in the Minneapolis area who has mono and share a drink (or a few) with that person, since mono is spread through saliva.
I’ve talked to many nurses and doctors about this plan. They have generally endorsed it (with varying degrees of explicitness). Getting mono isn’t 100% safe, but it is better than the alternative, and the risk is mine to take.
I would greatly appreciate your help getting the word out about this. I would much rather find someone through Facebook or a friend than post on craigslist or something more anonymous. Thanks!
Edit: There’s no shot or vaccine they can give me, unfortunately.
Edit2: Thanks for all the messages! I have a bunch of good leads and will follow-up soon.