07
Jul
17

2 Weeks

Well, I’ve had a functioning kidney for about two weeks now and I feel great!

I highly recommend, should you find yourself in organ failure, do try to get a new organ. I’m still recovering quite a bit from being sick for so long and from the trauma of surgery, but other than being tired and incision pain, I feel really good. I’m not retaining water anymore, so I’m about ten pounds underweight now that most of my fat and muscle is gone. I haven’t weighed this little since I was about 12 years old. By body is pretty weak. I look forward to getting back in shape, but I have to wait until I’m healed from surgery first. I’m getting very impatient.

I take 17 pills a day, not including what I take for pain. A bunch of stuff to suppress my immune system and prevent organ rejection, and then a bunch of stuff to prevent me from getting an infection since I have no immune system. I’ll stop taking most of the anti-infection stuff in about 3 months. I’ll be on the anti-rejection stuff my entire life, but hopefully lower doses after a year. I’m on steroids again, but much lower doses, so I’m not experiencing the adverse effects I was having last time — thank goodness. I have to get my blood drawn twice a week for labs. I have to record my weight everyday, my blood pressure and temperature twice a day. I’m being highly monitored. If my body starts showing any signs of rejecting my new kidney, the hope is we catch it early enough to reverse it. It’s a little stressful.

I’m taking part in a clinical study for a new anti-rejection medication strategy. Right now, the average life-span for a living donor kidney is only 15-20 years. I’m trying something that they hope will extend that life-span, or at least help them figure out a new strategy. All I have to do is take one more pill and get an extra vial of blood drawn with all my labs. Science!

My diet is unrestricted(!!!) except I need to watch my salt and eat “heart-healthy”, but that’s good advice for everyone. There’s a whole bunch of new stuff I’m not supposed to, mostly because I’m at such an increased risk of infection: avoid large crowds, don’t eat raw meat, don’t get vaccinated with live viruses, don’t clean up animal poop. Mostly avoid bacteria. I’m also not supposed to eat grapefruit because it’ll mess with my lab results. This is great news, I hate grapefruit. Don’t take NSAIDs, or anything else that will stress my single kidney too much. I’m not allowed to leave the country for a year, due mostly to a lack of access to my medications and regular labs. I’m not allowed to lift anything over 5 lbs until my incision is healed. I should avoid contact sports and any activity that could traumatize my kidney. My meds put me at a super increased risk for skin cancer, so I’m supposed to avoid the sun/cover up/wear sunscreen/wear hats/etc. Luckily, I don’t look too bad in hats and I’m a pasty sun baby, so sunscreen is already my jam.

I was only in the hospital for four days this time, which was much preferred to three weeks. My visit was pretty nice, despite a lot of reasons it shouldn’t have been. I had to get a central line put in again, and I was hooked up to IV fluids the entire time. I also had a catheter the entire time. So anytime I wanted to get up from my bed I had to drag an IV stand behind me and carry my catheter bag. It was a bit cumbersome. I mostly stayed in bed. For the first two days I was restricted to a clear liquid diet, so I was starving. I had trays of jell-o, flavored ice, chicken broth, and tea for every meal. I’ll spare you the details, but my extremely proactive attempts at avoiding constipation were very successful.

My low point came when I first woke up from anesthesia in the ICU during nurse shift-change. Should you find yourself in the hospital, do whatever you can to avoid needing anything during nurse shift-change, because shit flies off the damn rails. I woke up in the worst pain of my life with a nurse who wouldn’t even acknowledge me and then started saying, “you just had surgery” in response to all of my inquiries, as if that was new information. I was denied anything for pain, anything for anxiety, any water or ice chips, for several hours. I was really, really mad and I let everyone know it. Brittany said this was very comforting, since being angry takes a lot of energy and I seemed very “myself”. Things got much better when I moved out of the ICU the next day. I spent all day Saturday super high on morphine, which I didn’t really realize at the time. Interestingly, this was the day I had the most visitors, so everyone got to see me totally out of it, which I guess was fairly amusing.

By Sunday I was pretty much myself again, and Monday they let me go after a lot of discussions with different doctors. I have my two-week follow-up next Wednesday. Tania’s recovering very well from surgery as well, though also frustrated by how long it’s taking to get her energy back. Like me, she should watch her salt, but otherwise should be fine with her remaining kidney. ❤

Here are some mostly not graphic photos!

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1 Response to “2 Weeks”


  1. July 9, 2017 at 4.30am

    Congrats on the new kidney! I’m almost at three months with mine and I feel great!!


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