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Catching mono could save my life
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.
24 Comments
Have you been tested? Why are you assuming you’re seronegative when 95-99% already have antibodies?
I’ve been tested four times. This isn’t the sort of thing I’d be making baseless guesses about.
If you can get to Georgia I have all the mono you need. I would gladly give you spit, blood, whatever you need. Might as well let this sickness go for a cause!!!
Wish you all the luck in the world, as odd as that sounds, in catching mono! I’ll email some relatives in the Twin Cities and ask for their help in this. I’ll let you know if I find anything useful out.
Matt, great news on the donor! I just found out a friend of a friend has a young son that has mono. Please let me know if we should make that connection. My friend is more than happy to do that. Thanks, Kari
Hey, my sister just got diagnosed two days ago. She’s probably still contagious. We’re in the west metro if you still need someone.
Hi Matt. Your story was just put on facebook by a friend of mine. Looks like you got some great leads, but if they don’t pan out for any reason, let me know. We have a friend who has been dealing with mono for months, and it just flared back up again. Good luck to you!
Be honest now.
You really just wanted to find a way to kiss a lot of people.
I think I could figure out a better way to do that. : )
Hey! I have had a pretty nasty case of mono for the past three weeks. My blood work as of last Friday indicates I definitely still have it and I’ve still got a lot of the symptoms. I’m near the U, let me know if you still need someone!
I know of someone!
Ditto what Brianna said. Maybe you should try and share drinks with all of us. I’ve had mono twice before as the EBV just sits there biding its time. If I can help, give me a shout out & we’ll try to get you “sick”
Find a pediatrician or someone who treats adolescents and/or college students. Maybe your mom & dad can work something out with their campus health center…
I had mono awhile ago. but I am sure it cleared up. But I also hear that it stays in a persons system forever. So if that helps let me know?
That’s true. Anyone who has had mono in the past has the potential to be contagious at any given moment. After the acute infection, people tend to go through cycles where they’re more or less contagious. Over time, the general trend is that contagiousness decreases. Finding people who currently have symptoms is the surest way to find someone who is still pretty contagious.
Never had Mono and I’m not even in the USA but I wish everything works out fine for you.
Thanks, everyone! My story is getting more attention than I expected. I’ve gotten a few possible leads. I’ll follow up with those people in the next couple days.
-Matt
Any leads yet?
Hi Matt! Congrats on the donor! Such great news. My sister asked some nurses at her work about this, they thought maybe contacging school nurses of colleges and elementary schools to see if there are any cases of mono there.
It’s kind of funny, ever since I found out I had mono last week, I’ve been joking about giving it to people. I didn’t actually know that it could be helpful, especially in the fact that it could save someones life. I’d be more than happy to give you mono (never thought I would actually say that). I don’t know if i’m still contagious or whatnot, but it’s at least worth a shot. Let me know if you still need someone to or not.
Hey Matt…My name is Jon. I have been diagnosed with mono for about a month now. I live an hour away from the twin cities area. I would like to help you out man.
Hey Matt. While I don’t have mono anymore, I still have EBV in my system, as it stays for the rest of your life. If you can’t find anyone else to help you out, shoot me an email and we’ll set something up.
Status Update
Transplant
I got the transplant! Yay! I'm out of the hospital. Things are going okay. I got an opportunistic infection in the hospital, but antibiotics seem to be handling it. We're having some trouble getting the drug level for my anti-rejection meds to stabilize, so one day I might feel fine (when the level and dose are both reason), then the next day the level might be out of wack (if it is too high, I'll be utterly exhausted), and if the level is too low, we'll increase my dose (which causes nausea). For now, I'm going to the outpatient clinic every morning (including weekends). Once we get things under control, I'll be able to start using home care for lab work. That'll be nice.
Christi, my donor, generally seems to be doing well.
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Dialysis is over! I haven't had a treatment since 4/15. Good riddance! I do miss the staff at the center, though; they were really nice.
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