Today was a much better day

I wrote about having some troubles on Thursday. Friday ended up being worse. I got an IV in the morning since I was dehydrated from throwing up. That wasn’t so bad, but my labs also showed that I was low on magnesium. I got some of that through the IV, too, but I had an allergic reaction to it. That was pretty odd, since I’ve had it before without problem. At any rate, it didn’t go well this time, so I had to stay at the outpatient clinic for almost nine hours for monitoring. The other problem was that I was utterly, absolutely exhausted the whole time. I’ve written before about how tired I felt after dialysis. This was even worse than that, and it lasted the whole day. (Typically, I would feel okay after taking a post-dialysis nap for a few hours.) Finally, nausea continued to be a problem, and I didn’t really feel up to eating anything for breakfast or lunch.

Thankfully, things took a very positive turn later that night. My anti-rejection drug level tests finally came back around 7pm, and they were super-high–25% over the top of the acceptable range! That sounds bad, but it is actually awesome news. It meant that I got to significantly reduce my dose that evening and this morning. The levels were down negligibly this morning, so I got to stay on the same, moderate dose tonight. I feel *so* much better. I have at least a little energy. I can eat. I don’t have a raging headache. That makes me think that the side effects relate to the dose of the medicine, not the drug level currently in my system. That seems counter-intuitive, but whatever. The only downside is that they want me to go in for more testing on Sunday, which was supposed to be a day off. Oh well! I feel okay, and driving to the lab on Sunday morning is hardly an inconvenience.

I’m suffering a bit today

We’ve been having to raise my immune suppression drug dosage so that there’s enough in my system. We’re now 25% above where we started in the hospital. They’re pretty powerful stuff. I was tolerating it pretty well initially, but I’m getting some side effects like headache, light-headedness, nausea, heartburn, and a really odd burning sensation in my hands and feet when they touch water. Thankfully, my levels were good today, so we don’t have to go up any more. I hope we’ll be able to back off a bit tomorrow. My only concern is that I threw up 90 minutes after taking them this morning (despite taking a really strong anti-nausea pill). Normally, it should only take 60 minutes for them to get absorbed, but I’m a worrier!

The other issue is that I need to drink *so* much water. I’m drinking 2 liters a day (and that isn’t counting all the other drinks, like soda and juice, that I have), and that still isn’t enough. They were talking about needing another 1-2 liters on top of that. I really can’t imagine doubling my water intake. It sounds like most people should drink about 2 liters a day. I suggest you try measuring it. I bet you’ll be surprised how much that is.

Anyway, I’m sure this will all get better as my body gets used to all the new pills. I’ll post another update soon.

Home from the hospital!

Hey everyone,

Here’s just a quick note to say that I’m home from the hospital and feeling much better after a shower. I left with the biggest bag of medicine I’ve ever seen. The total cost of it was several thousand dollars for one month of meds. Thankfully, my copay was just about $200. That’s still going to hurt paying for the rest of my life, but it’s certainly better than dialysis.

I had what will probably be my last dose of the really nasty immune suppression medicine today. I’ll stay on two less nasty ones for the rest of my life. For the rest of the week, I have appointments at 7am at the transplant center to get my blood checked to make sure everything is working as it should. Then for the next few weeks a nurse will come to my home and do the lab work three times a week. Then the tests will be less frequent, so I’ll just go into the transplant center. The really strong immune suppression drug will also have worn off by then, so it won’t be as dangerous for me to around a bunch of people consistently.

I’ll try to post another update soon. There’s a lot I could say about the hospital stay, and I don’t really know what I’m in for tomorrow – Friday, either, so I’ll let you know as soon as I figure it out.

-Matt

Post-op day 5

Sorry for the lack of updates. I haven’t felt up to setting up my laptop to do some serious typing, and the thought of writing a bunch on my phone isn’t that appealing.

The doctors thought I could maybe go home on Sunday with Christi, but I wasn’t feeling very good, so they opted to keep me one more night. I felt great Sunday night and thought everything was on track. Unfortunately, things took a bad turn on Monday morning around 9am. My pain shot up, I was making a lot less urine, and I had a fever. I was kind of freaking out a bit, but the doctor were able to determine that it was an opportunistic infection that a lot of us carry around in our guts that can get out of control when our immune system is suppressed. It’s kind of gross, but it is fairly common, and I’m on some antibiotics that should clear it up. The doctors, were very reassuring, saying that if they found it after I had been discharged, they would have just dealt with it as an outpatient, but since I was already in the hospital, they might as well keep e one more night and keep close watch. I’ve seen good improvement in the symptoms over the last twelve hours. Also, I actually slept well last night.

There was a little fiasco last night when I got a dose of an IV pain killer and had an allergic reaction, but that cleared up in a couple hours. I feel pretty good this morning. The odds are good that I’ll get discharged this evening. I still need to get a dose of IV meds that take about 7 hours to run.

Christi got out on Sunday and is doing well. She’s resting a lot, and her kids got to come home to visit her last night. She’s been thinking about posting here. If you’d like that, let her know in the comments.

Thanks for all the kind messages of support. Special thanks to all the folks who came and visited me in the hospital. That really boosted my mood even when I was totally out of it because of the meds. I especially appreciate the visits yesterday since I was feeling a little down after the setback that morning. I’m also glad no one visited very late last night since the weather was nasty.

Post-op day 1

Well, it’s post-op day 1, and everything is going as well as we hoped.  Christi and I both pretty uncomfortable, but we tolerated our surgeries well even though they took longer than expected. The kidney jumped into action immediately and is doing exactly what it is supposed to do.  My labs are steadily improving, and both the surgeon and nephrologist are pleased with the progress.  Needless to say, I am thrilled. Today I’ve had my first real food in 48 hours and my first glass of orange juice in 18 months!  I’m up and about, having completed two circuits around the hospital corridors. This afternoon I’ll be joining Christi on the transplant floor, since I’m ready to graduate from the more closely monitored unit. Now we’ll be able to do our laps together. Sweet!

I mentioned in my earlier post that it was possible our transplant would be the 8,000th completed at UMMC.  It turns out it was, which is quite cool.  The hospital has even approached Christi and me to ask if we’d be willing to participate in a little PR about this milestone.  We agreed–anything to raise awareness about the needs for organ donation. I’ve also agreed to join a couple research studies to assess the effects of some of the drugs I’ll be taking.

There is a broad circle of friends who have been with me in a variety of ways through the long dialysis ordeal. Your support has bolstered me during the tough times. There will still be challenges ahead, but the future is looking a hell of a lot brighter.  Thanks, you guys.  And, needless to say, an especially huge thanks goes out to Christi.  She rocks!

Surgery Tomorrow

Hey everyone,

My surgery is tomorrow. Everything is looking good. Christi, my donor, and I were at the hospital all day for tests. We need to go back there tomorrow really early. The actual surgery is supposed to start around 8am. My part of it will start a little later. I guess it usually takes around four hours, so my parents might know something in the early afternoon. They’ll be sending an e-mail with an update to the people who we know are waiting for news. A friend of Christi’ and mine will send an update to people at work. I’ll post something here once I feel up to it (that might not be until Friday). So, there should be lots of ways for you to hear what’s going on. Anyway, I’m excited and a little nervous. I’m sure everything will go fine, though. The doctors and nurses all seem very confident.

We also learned something pretty cool. Unless there ended up being a deceased donor transplant this evening (and nothing was scheduled when we left), we’ll be the U’s 8,000th kidney transplant. That’s pretty cool. I like round numbers. I think they said that that’s actually the most kidney transplants of any hospital in the U.S. (and maybe the world?), so we should be in good hands tomorrow.

Anyway, I’m going to sign off. I don’t actually expect to be able to get much sleep, but I need to go eat and drink some more. I’ve been on a clear, liquid diet after 2pm. That isn’t entirely satisfying my hunger, but it was a good excuse to have some Jello, which I probably haven’t eaten in twenty years. At any rate, I can’t eat or drink anything after midnight, so I’ve got to make this last half hour count!

Thanks for all the kind messages I’ve been getting over the last few days. I really appreciate it. It’s comforting to know so many people are thinking of me.

Let’s give this another shot: donor #3 approved!

Hey everyone,

As usual, I’ve been horrible about updating the blog. I have been really busy, but that isn’t a good excuse. There are at least a few other quick posts I want to make, so you should expect more from me over the next couple weeks.

I shouldn’t wait any longer to share this exciting news, though. Another donor was approved by the U of M. She’s a good friend from work. Some of you might know her, but I’m going to leave it up to her to say who she is. We have a surgery scheduled for April 18, so just under a month from now. I’m certainly excited. I’m trying not to get too excited given my earlier experience of donors not working out, but I don’t think there’s much chance of her being rejected or backing out at this point. So that’s really good news, obviously.

She’ll probably be in the hospital for one or two days after the surgery and then be out of work for around six weeks. I’ll be in the hospital for around five days and out for about three months. My mom is going to be hanging out with me for a while after the surgery since I’m going to need help with lots of stuff. That’ll be nice. I don’t know what to ask for in terms of help from the rest of you at this point. I don’t have all the details, but I think I’m supposed to limit the number of people I come into contact with for a while after I start the immune suppression, so I’m not sure how stuff will go with visitors in the hospital and after I go home. I’ll provide more info when I know more. Maybe I just need to wear a totally flattering anti-germ mask!

Anyway, that’s the big news. More updates to come.

-Matt

Some happy news: My team for the Kidney Walk raised over $9,000 for the National Kidney Foundation

Hey everyone,

Here’s some belated-but-good news. Back in October the Minnesota branch of the National Kidney Foundation held their annual Twin Cities Kidney Walk on the Thomson Reuters campus in Eagan. My team–named after this blog–was the top fundraising team, bringing in over $9,000. That’s awesome!

For a long time I was a top individual fund raiser on the team, but lately my friend Juliette has slipped past me. She’s great, but she shouldn’t beat me at my own game! Would anyone be willing to throw a few dollars the NFK’s way to help me retake the lead? Donations are open through the end of the year. Of course, they’re tax deductible. If you’re willing, head on over to my donation page on the NKF’s site. Thanks!

Also, as a team, we’re less than $700 away from breaking 10k. That’d be incredible!

I want to thank again to everyone who participated in and organized the Kidney Walk. A bunch of my friends and colleagues showed up to support me. Here’s a list (in alphabetical order): Alan, Amanda, Amy, Amy, Andrea, Anonymous (x20), Barry, Beth, Bob, Carol, Carol, Cherie, Chris, Christi, Cindy, Claire, Craig, Darren, David, Debbie, Denise, Donald, Elizabeth, Ella, Erik, Erin, FindLaw Quality Team, First Name, Georgia , Grace, Grant, Janine, Jason, Jason, Jen, Jess, Jessica, Jessica, Jessica, Jill, Josh, Josie, Judith, Julie, Juliette, Kara, Kari, Keven, Kevin, Larry, Laura, Leslie, Linda, Liz, Louis, Lynn, Mary, Mary, Marylynn, Matt, Matt, Matt, Max, Melissa, Melissa, Michael, Michael, Michele, Mikaela, Molly, Molly, Nancy, Nate, Nathan, Paula, Poornima, Regina, Rich, Richard, Robin, Rodney, Scott, Shawn, Shelly, Stacy, Sue, Tanya, Tanya, Tarin, Tegan, Terry, The Farley Family, The Forcellas, The Kline Family, Thomson Reuters, Tim, Vani, and Vicki.. (I really hope I’m not missing anybody; if so, I’m really sorry!) Thank you!

Back in Vermillion for the holidays

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.

Bad news – The Mayo exchange didn’t work out and my donor at the U. backed out

Hey everyone,

I’m sorry that it has taken me a while to provide another update. I only just got some answers today. The news is doubly bad.

First, the Mayo exchange fell through. For me. It’ll presumably work out for some other folks, though. I know people called in (thanks!), but either none of them looked like they’d fit into the chain well or it wasn’t possible to get them to Rochester for testing in time.

I am not totally sure, but I kind of feel like that was my last hurrah with Mayo (I left them an urgent message on Tuesday around 1:30pm and never got a response until I called again this morning). If they contact any of you about getting evaluated, please focus on working with the U of M instead.  I’m probably just going to stop working with Mayo entirely. I’d pretty much decided to do that before the exchange opportunity cropped up a few weeks ago. Now that it’s off the table, I don’t know if I care to put in the work to keep everything current with them anymore. I’m due to go back there for another three days of testing. You have to do that every year. It’s actually been about 13 months since I was down there. It feels a lot longer.

Second, last week I got what seemed like really awesome news. The U had approved a donor (someone I don’t know personally but who found out about me through this blog and social media) and, after some discussion, we settled on a date for the surgery on Tuesday. My urgent call to Mayo was an attempt to get more information before going forward with the U’s transplant because the exchange donor from Mayo was a better match. We were going to get it done on 12/21–a nice early Christmas present. It was a huge relief to know this year-long ordeal was over(ish). There was even a cool-sounding study going on at the U where EBV+ donors were given antiviral meds before the transplant in hopes of preventing EBV transmission. So, even though the donor was EBV+, my risk of PTLD would have been significantly reduced.

I got a call from a nurse involved in the study pretty much right away the next morning. I immediately agreed to the study and sent the donor an e-mail explaining it and asking her to consider participating. I didn’t get a response right away, which put me on edge because we’d been exchanging rapid-fire e-mails for the last several days while sorting out our schedules. Late that afternoon I got an e-mail from the donor saying the surgery was off for good. I’m not 100% sure what happened, but here’s the story as I know it: The donor was a nursing student in the Twin Cities. Setting a date made the whole thing real in a way it hadn’t been before, and her previously supportive parents kind of freaked out. It sounds like she has a very involved mother (gee, I wonder what that’s like… :p). Kidney donation is safe (or else they wouldn’t do it), but there are risks and things sometimes go wrong. She said they forbade her to have the surgery. Obviously they can’t actually do that; she’s a legal adult, but their opinion reasonably carried a lot of weight. She said that the U then concluded that she wouldn’t have enough of a support network after the surgery and decided to no longer approve her as a donor. The details there seem a little fuzzy, but I guess why this happened doesn’t really matter anyway. The point is that, once again, I no longer have a donor.

I was pretty messed up last time a seemingly sure-thing donation fell through. This time I did a better job of protecting myself emotionally. There was no crying or yelling. I went to work the next day and wasn’t totally useless. Really, things were pretty tip-top, considering. But it sure does suck. I’m back to having to face dialysis for the foreseeable future. My parents are devastated. I had to go back to my friends and explain what happened. I’m still on the diet and can’t eat many of my favorite foods. I’m still exhausted, etc., etc.

The really crappy part about this is that the donor was approved in October, and it took this long to sort through some other issues on my end (she was actually a significantly worse match than the donor Mayo approved over the summer, so I had a bunch of questions about what that meant). But during that whole time the U wasn’t doing any work on other donors, so now we’re back to square one after squandering three miserable months. The delay also means I almost certainly won’t be able to get into the EBV study because their funding runs out in January. The U’s currently talking to a couple potential donors, but no one is scheduled to come for an evaluation yet. Who knows when we’ll make progress?

I’m also frustrated by the delay because I’m ever so slightly worried about my job. The company’s been great. Everyone is a super supportive. No one has said that I need to worry about anything, but I know that I can’t do my job when I’m only working two days a week. I’m supposed to have a big role in hiring and training, and we’re adding a bunch of people, but the other senior developer is needing to carry almost the whole burden. I ran out of FMLA leave a long time ago, so I’m just on medical leave that isn’t backed by force of law. Technically, they could fire me at any time. I don’t think they will. I think I’m an asset, and there’s something to be said for standing by good employees when they go through tough times, but I still worry that eventually their patience is going to run out, and I don’t know that I’m going to get a lot of warning. Losing my health insurance would be a disaster. Anyway, I’m probably just a little worked up still.

The up side of not getting a transplant this month is that I can try to go back to South Dakota for a couple weeks. I’d say that’s a pretty good glass-half-full take on it, but it’s probably closer to a tenth, at best. Of course, travel entirely depends on being able to find dialysis time nearby. Even though I requested that over a month ago, I still haven’t heard anything. The dialysis folks seem to think it will work out, but there’s no guarantee. Centers are reluctant to promise spots to “transient” patients because they’d always rather get a permanent patient from the local area. That just makes financial sense. Last year I didn’t get a spot until the day before I left, despite requesting it six weeks in advance. You’ve just always got to be ready to cancel your plans. Thank goodness I’m not much of a Myers-Briggs J.

Anyway, that’s all for now.

Oh, I should also mention that dialysis has gotten a little more comfortable lately since my Aunt Jean sent me a rockin’ pillow to use on those huge chairs. Thanks!