Logan threw out her back at work on Wednesday, so I’ve been taking care of her Wednesday night and Thursday.
Which basically meant making eggs and hash browns for dinner, eggs for breakfast, and a sandwich for lunch. Simplicity. She’s in less pain now, and it’s difficult to convince her to keep still and recover.
Unfortunately, that meant she didn’t join me on the journey to Lahey and the nurses, doctors and support staff all noticed. Logan didn’t totally miss the appointment – she was able to listen to the appointment via speakerphone.
Pesky bilirubin has been increasing again. Here’s a plot from the first blood test in 2004 to today. It’s now around 7.0 and normal range is less than 2.
But, as I’ve shown before, there’s a difference between pre-transplant and post transplant. Pre-transplant, the direct bilirubin (orange) was high and now it’s almost exclusively indirect bilirubin. All the other liver numbers are well within the normal ranges. The doctors don’t understand – “That doesn’t make sense” is a direct quote. But they’re going to do some research and figure it out.
In the meantime, I did my own little research – and found an article on American Family Physician: (http://www.aafp.org/afp/2004/0115/p299.html). You should take everything below with a grain of salt, because I’m only a rocket scientist, not a doctor.
Red blood cells are trapped and destroyed in the spleen as they wear out. When these cells are destroyed, bilirubin is released into the blood (unconjugated or indirect bilirubin). The liver then processes this type of bilirubin, combines it with another substance, and excretes the bilirubin (called conjugated or direct bilirubin) through bile.
It made sense pre-transplant with PSC that direct bilirubin was high, because there was an issue with the bile flowing out of the liver. Now, since the indirect bilirubin is high, the cause appears to be pre-hepatic or intra-hepatic, or the right colum of the chart below:
Gilbert’s Syndrome is in the short list of possible causes, but the doctors have not seen Gilbert’s syndrome have values higher than 2.0 or 3.0. The other possible causes are hemolysis or hemotoma; the breakdown of red blood cells or resorption of a bruise within my body. Those usually have other signs – like a person in pain, or other high blood tests.
The surgeon I was seeing told me, “We will figure it out, this isn’t something where we will be naming a new disease after you.” And really, who wants to have their name associated with a disease?
The Derek Janiak Hepatobiliary Forum 