D+31 — It Only Hurts When I...

(I note with nostalgia that my previous D+31 posting, after the first transplant, had the title "Our Most Boring Patient." It's odd to think of that period of time as the good old days...)

So, on Monday I had the sharp stabbing pain that felt like gall bladder problem (minus the vomiting) and also like the pulmonary embolism. At times it was debilitating. I used the modified breathing technique that only uses the top third of my chest to avoid pain, but a laugh or burp or cough or sneeze, or even just turning the "wrong" way, would twist the knife hard, and even a normal breath was quite painful. 

Before I saw the doctor on Monday, I saw a nurse who went over my medications and asked about any pain. I explained what was going on. She asked the "on a scale of one to 10" question. I tried to explain that it was constantly changing, ranging from four if I didn't breathe too deeply to eight or so when I did. Apparently, her computer form had room for only one number. "What's the number right now?" In the interest of honesty, I said, "four," which she dutifully typed in, mostly hiding how much pain I was in. Maybe I should have averaged the high and low.

The doppler imaging they did on my line and the chest x-ray were both negative for blood clots, so it was left as a mystery.

On Tuesday, the pain had shifted to the left side. Since an embolism can't jump from one lung to the other, this shift pretty conclusively ruled out a PE. It also ruled out various organ-related issues, most of which had already been ruled out by my normal blood chemistry. It hurt a little less than it had the day before, perhaps because of the acetaminophen I was taking. Later that day, it appeared on both sides. I began to suspect it was nothing as dramatic as a pulmonary embolism or a gall stone.

What could it be? On Monday, during my appointment with my doctor, she had asked in passing if I was constipated. I said I wasn't, because I was having small, normal bowel movements a couple of times a day. Over several days, however, small bowel movements are not that different from constipation, so I started taking something for that.

By Wednesday, the pain just below my rib cage, which continued to migrate from one side to the other, had generally subsided to the point that I could move around freely with only occasional stabs from an especially deep breath. It was a sunny day and very warm for January in Chicago — above 50 degrees — so my dad and I drove to the nearby lakefront and walked to Promontory Point, which offers a beautiful view of downtown Chicago to the north. The outing included about 45 minutes of walking, the most for me in 2012. PR!

On Thursday, the upper abdominal pain was mostly gone. I could make it hurt if I tried, and at times it came back briefly to previous levels, but I could go hours without noticing anything.

In the afternoon, I took a nap. When I woke up, I did what I had done for most of the week: see how deep a breath I could take before I felt pain. The answer was, pretty deep! Excellent. I headed to the bathroom to pee.

Whoa! That hurts.

And what's this tiny bloody thing in the toilet bowl? It's not exactly a drop of blood, which would have dispersed. It's like a tiny bright red jellyfish, about the size of a fingernail. And it came out of my... This is not right!

And why do I still feel like I need to pee, even though I just did.

I called my doctor. It's probably some kind of infection. Instructions: Keep an eye on it.

At night, I get up every hour to go the bathroom. Sometimes it burns a little, and sometimes it feels like I'm peeing tabasco sauce. Sometimes there's a little blood, and sometimes there's none that I can see, and sometimes there are what I assume are small pieces of the lining of the urinary tract.

Not much has changed in the morning. I call my doctor. "Would you like to submit a urine sample?" Hmmm. I was not expecting her to leave it up to me, but starting down the path of finding out what the problem was seemed preferable to sticking with the status quo, so she put in an order for the lab work and my dad and I headed to the clinic.

At this point, the urge to go was constant, even though my bladder was nearly empty each time. I didn't feel like I could hold out as I waited in one waiting room for lab paperwork, and then in the lab waiting room, even though I knew my bladder was close to empty since I had gone just before we left for the clinic.

...

[I am posting this now, Sunday, even though it's incomplete, because the infection I have been describing has made sitting uncomfortable, and it's hard to write lying down, and even lying down I am very uncomfortable, so I'm focused on just getting through the day, which is why I haven't worked on this post since Friday. The infection is most likely a virus, in which case there's nothing to do anyway except wait it out. I did get some encouraging blood counts on Friday: platelets went to 37 after drifting in the teens for a few weeks, WBC went to 2.5 after drifting around 1.5 for a while, and ANC went to 1.48, which is essentially normal. I get more counts tomorrow.]