I'd expressed this concern for some time with my PCP, but it was only a very little elevated, and so we took a wait-and-see tack, but I finally said something about my concerns to my endocrinologist. She ordered labs and sure enough, the values were higher than they should be. So Tuesday before last I had two liver tests: a regular liver ultrasound and an elastography, the latter of which measures the elasticity or rigidity of the liver. It wasn't a particularly painful test, it's just an ultrasound that I had to fast for, but it was difficult in that you had to (for the elastography) let out all your breath and then not breathe for awhile before letting in some air again. I was a little dizzy afterwards.
The next day, the results showed up on my patient portal and I read them. A couple of things were easy to understand. My liver was enlarged and I had asymptomatic gallstones. There was a mention of the wave result being correlated to a Metavir score of F4. That I knew nothing about, so being a former librarian, I looked it up, being congnizant that you shouldn't panic based on Google results. But the Metavir Scale goes from F0-F4. F0 is a normal liver. F1-F3 are various degrees of fibrosis in the liver. F4 is consistent with cirrhosis. That was a bit to make me think about panicking. I've had diabetes for aver 20 years with obesity and other risk factors. I thought there might be some damage. But cirrhosis is not good. Not at all. Fibrosis can be reversed in some cases, particularly in the early stages, as the liver has a great deal of resilency, but cirrhosis is another matter entirely, and can lead to liver cancer and liver failure.
I called my doctor's office to speak to her. Her nurse wasn't there that day, but they'd said they'd give her the message. The next day I hadn't heard anything, so I called back and spoke with the nurse. I explained what the score was supposed to mean and the nurse was like, oh, I didn't know that, let me get the doctor to call you right back, which she did. The F4 score is certainly concerning. She said she wanted to refer me to a specialist at the University of Kentucky, as they were the best ones in the area for this and if I went somewhere else, I'd probably wind up there anyway (I think she meant if it came to a transplant, as they're the ones who do that).
So that was definitely hard news.
Fast forward to this Thursday and I hadn't heard anything about the appointment. I have the Informed Delivery from the US Postal Service that emails you scans of the mail you're getting that day and saw that I was getting something from my endocrinologist's office. I asked my roommate to open it in case it was the referral. It was just a copy of the results plus the intent to refer, so I went ahead and called her office and the referral clerk called me back. I do have an appointment with the University of Kentucky's Gastroenterology office (apparently that's where Hepatology goes under), but after reviewing my records the first available appointment was October 8th, when I'll be seeing a doctorate-level nurse practitioner. So maybe they didn't think I was as urgent as my endocrinologist's office thought. Or maybe, being a major univeristy teaching hospital, they just don't have the availability. I don't really want to make any assumptions. So it looks like I won't really know anything about my condition until then. I have to admit, I'm pretty disappointed and more than a little scared.
I know that it often takes big things to scare us into making even small changes. The best thing for fatty liver is to lose about 30% of your body weight. For me, that's about 100 lbs. Yeah, that's a lot. I saw my rheumatologist the next day and told him about what was going on. He asked me what I planned to do. I told him I was cutting out the processed food in the vending machines. I was trying to find ways to walk a bit each day beyond going to and from work (I get about 6200 steps in on average. I'd like to slowly increase that to 8000.) As far as losing weight, 100 lbs is too much to tackle. My plan is to try for 15-20 lb. weight loss and then add another goal after that, taking it smaller bites. He thought that was good, and he offered to get me to a nutritionist if my endocrinologist didn't. I appreciate it.
I haven't eaten anything from the vending machines in over a week. I ordered and tried out some walking poles to help with my balance so I can walk around the neighbourhood, and some walking shoes are being delivered today (my New Balance work shoes, which look like black trainers, are actually steel-toed, and not flexible enough). I went and spent $100 on things like large bags of nuts, raisins, craisins, jars of sunflower seeds, cheese I can cube, baked crackers, yoghurt, etc., so I have snacks and breakfast at work. Here's hoping this helps.
UPDATE: My appointment has been pushed back to November 5th! Arrrgghhhh!