Logan and I went to see a hematologist on Monday. We went into this meeting thinking that we wouldn’t get any solid answers, and we were right. But, as you’ll see, that wasn’t the real reason.
We actually thought this conversation was going to be about bilirubin, but it wasn’t. It turns out he knows very little about about it. He was very nice and started talking about my below normal PTT values and possible correlation to increased clotting risk, including the issue with my ‘first liver’. He really meant my ‘first transplant liver’, and in doing so, he spoke very highly of Logan’s donated organ, calling it “pristine” and “perfect” – Logan was very honored.
And the summary of the conversation on clotting, below normal results was, in a nutshell, “you don’t have a disease, and there’s nothing to worry about.” That’s succinctly boiling down the 30 minute, very thorough explanation.
He gave me the option of getting further bloodwork to identify actual proteins in my system that may contribute to clotting, like Factor 8, but the doctor was very honest in saying that it wouldn’t be very beneficial. The conclusion would still be the same: there’s nothing wrong and no increased risk factors. Even if there was circumstantial evidence of future risk, there’s no drug or lifestyle change that would change anything.
He was very good at putting things in perspective for us: I’ve been under close scrutiny for the past 10 years, so it shouldn’t be surprising that they’ve found something different or abnormal. But that doesn’t mean it’s bad or wrong. It just means they looked really hard at lots of things. If I didn’t have a transplant with complicating factors, no one would be asking questions about my clotting factor. There’s evidence of correlation, but not causation. I have other abnormal results that get much less attention: for example, no one seems to be concerned about my abnormally low cholesterol hovering in the 80s (Normal is between 110 and 2oo). Does that have any relevance?
The hematology doctor reminded both of us that with my medical history, that the transplant doctors have been very impressed with my recent health – returning to work, exercising, and living a normal life. Sometimes it takes someone – especially a doctor – to remind you of what’s important. I’m alive. It doesn’t matter what the blood tests show. It matters how I feel. And I feel just fine.
It became obvious to Logan and me: this visit wasn’t about whether I had a disease, or a doctor’s concern, it was to satisfy my needs. I had asked questions of my transplant surgeons that they couldn’t answer, but they pointed me to the expert. They cared enough about me to let me ask as many questions as possible until I was happy with the answers and would find the answers if they didn’t know.
And in this case, I’m ok knowing there’s not an absolute answer for why my blood results are abnormal, or Logan’s liver didn’t work out. It’s more important to know that my health is in the hands of those people that truly care about me. I love my doctors, and I know they love us.
The Derek Janiak Hepatobiliary Forum 
So well written, As a result, vivid and re-assuring. We all should be so delighted with those who have the responsibility for looking after us. Congrats on a great report, content and comments. Thank you!