The Two-Month Post-Transplant Checkup

When we last saw our patient, she was reporting on a fairly regular basis about what life is like post-transplant. And she was explaining just what’s involved in a kidney transplant.

And then the medical pros tweaked some drugs, and she kept healing, and she started sleeping longer, and she wasn’t quite so hyperactive. And given that she only has about three hours a day to do anything (which includes going to the Transplant Clinic or lab, making dinner, checking email, and, of course, keeping up with Facebook), she naps a lot.

And to further complicate things, she picked up a food-borne illness three weeks ago. File this under “things they forget to tell you”: when you get sick (like normal people), it causes serious issues. Your lab results, which were looking so good, suddenly go haywire. Things that were going up suddenly go down. Things that were going down suddenly go up. And you feel like crap.

(Now back to first person.) I first got sick on Friday, July 18, but didn’t think much of it. But on Saturday, I realized that I definitely had a problem. I couldn’t eat (given that nothing was staying in), so I drank lots of water. And I slept. A lot. Sunday wasn’t much better.

I checked the Transplantation book they gave me, but nothing aligned. Yes, I had diarrhea, but it wasn’t because of my medicine. (After all, I’d been taking all my prescriptions for six weeks at that time without any problem.) For the most part, I wasn’t running a fever. And because I already had an appointment with my nephrologist on Monday, July 21, I didn’t bother calling the Transplant Clinic.

That Monday, I had Jesse drive me into Boston. I didn’t want to take any chances. By the time they took my vital signs (standard first step) and met with the nurse (standard second step), I was ready for a nap. But I had to meet with my doctor, who wasn’t happy when she heard about my symptoms.

She wanted to admit me right then, but I explained that because Jesse only had his permit, I would have to drive home with him. And then Jim would have to bring me back. (In other words, it would be at least three hours before I could get back.) So she decided to give me a saline IV to get rid of the dehydration.

And wow, what a difference. I felt so much better when I left, even though I was way past my three-hour limit. Of course, I got home and immediately took a nap :-)

That leads us to this week. I did my labs yesterday, and then met with my doctor later in the morning. My creatinine is now at 1.2, just slightly elevated (normal is now considered .4 to 1.0). For reference: it was 2.91 when I checked into the hospital on June 1. My GFR is now 46. For reference: it was 17 when I checked into the hospital.

Part of the reason for the improvement is that my old kidneys are finally relinquishing their control. They have fought for so long, but the new kidney has convinced them that it can do the job. I get twinges of pain in my back (luckily, the old kidneys are taking turns), sometimes lasting as long as 24 hours. I’ve decided that it’s my old kidneys shrinking, and as they stop working, the new kidney takes more control.

I’m not sure where my GFR will finally end up. I’m currently at stage IIIA (I was considered Stage IV/V back in May). But the last time my numbers were this good was probably sometime in 2006 (my online records only go back to 2008).

And as far as Transplantation book? I discovered that there are four tables that list symptoms and possible reasons. (Talk about confusing.) So I created a new document that lists all the reasons they want you to call the Transplant Clinic immediately, adding a note that you’re supposed to call if you have *any* of the symptoms, not all of them. And then I created a table that lists every symptom in the book with the duration and possible reason…and discovered multiple discrepancies.

And I gave the document to my doctor to show her just how confusing it was. Several symptoms are listed two or three times, each with a different duration and reason. (And I showed how, according to the book, I wasn’t supposed to call until I’d been sick for two days.) For example, the list includes “cough”, “dry cough”, “cough with green or yellow phlegm”, plus “cough due to cold” and “cough due to flu”. There’s “rash” and “skin rash”. There’s “swelling”, “swelling of ankles, legs, or feet”, “swelling of body or legs”, and “swelling of the belly”.

How do patients who aren’t tech writers make sense of it all? I have no idea. But hopefully, I can help influence some changes so that other patients have an easier time.

(At some point, I’ll do a more detailed usability analysis of the book, which I’ll post at my company blog. But it will be awhile.)

So…here’s to the next two months!

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