I don't like MRIs, and this is why

 Today it took everything I could to finish my annual liver MRI/Elastography. [My mom died of non-alcoholic cirrhosis of the liver/fatty liver disease, and I have a fairly mild case of the same disease that we're monitoring and trying to improve.] I'd gotten a Valium to take a little before it to take the edge off of my anxiety because I'm claustrophobic. Because of that, I took the bus to UK rather than drive, since I couldn't drive back. Usually, I'd ask someone for a ride, but I'd asked them if I could go home by bus instead, and they said that would probably be okay.

I meant to wake up early, take a shower, and go in without too much trouble. I overslept, giving me twenty minutes to throw clothes on and brush my teeth in order to catch the bus. I couldn't even put my contacts in, which is okay because when I'm in an MRI machine I don't want to see it, and while I usually close my eyes, a fuzzy machine is better than a clear one. I didn't take my anxiety or allergy medicine, which became an issue. By the time I got there on the bus, my mouth was so dry I could barely talk because I couldn't have any liquid or food for four hours prior.

I got taken back to get into the gown and  I did have to get other patients to help me tie and untie the gown since I can't raise my arm or put it back without pain, and the tech had left me to undress and later, dress.

But then it came time to do the test. The techs were so good. I told them about my injury and they positioned me so that I'd be comfortable on that side, or at least as much as possible. I never felt any different from the Valium I'd taken as directed before. I'd had an MRI last month on another part of the body and there was a sort of floating-head sort of thing that lasted just long enough to get through the test. This time, nothing. To get the abdomen, you have to go really far into the machine, as the centre of the body has to be in the middle of the machine. I've been stuffy the last few days (no Covid, but a really light cold) and I'd woken up with no congestion, so I thought I'd pretty much gotten over it.

If you've never had an abdominal MRI focusing on the liver, a voice tells you when to breathe normally and when you should exhale and inhale then hold your breath. I found that in the tight space, lying down, my congestion built up and I could barely breathe through my nose. By the end, I was having to breathe through my mouth only and barely kept from hyperventilating. They have changed the protocol so the test is much longer. I wound up counting numbers to distract me and get through it.  You particularly need to hold your breath when the paddle hits against your abdomen for the elastography, which measures the pliancy of the liver. It got harder and harder to do, and the period of holding my breath was about at my limit with the breathing issues.

They asked me how I was doing because I think they knew I was breathing hard (I coughed at one point) and I asked how much time we had left, and it was about five minutes, some of the longest minutes I've experienced. By that time, I was in a state of moderate panic, although I did finish it. I'd arrived at 8:30 AM, probably started the test about 9 AM or shortly thereafter, and got out at 10:40. I immediately bought some water and then realised I had to get down from Chandler to Kentucky Clinic for my follow up in just a few minutes. When I'd made the appointment a year ago, they'd been on different days, but they had to change the appointment a couple of months ago and had put it on the same day. I'd been dubious that the results would be read in time, and that was true.  My time with the PA was spent talking about my health in general, but she'll have to get the results to me later through the portal. We will change to another drug next year. I then had to go back to Chandler on the shuttle to get my insulin from the pharmacy, then caught the city bus to the transit centre. I brought some paperwork my PCP had signed to allow me to get a disability ID so I'd pay less for bus passes and fares, since I'm coming up on a time when I can't drive and will have to go into work on the bus for four weeks. So I got the ID and pass and then caught the bus home.

By the time I got home I was exhausted by the noise, the lights, the people, and all the other stimuli on the bus, at the hospital and clinic, and mostly the MRI. I came home, changed clothes, and immediately went to bed with some soft music on, and slept for three hours before venturing out of my room.

I am so glad this is a once-a-year thing, and that I took off from work due to taking the Valium. But it was a difficult day. :(

[Update: I got the results through UK's portal. The images were fine, but the elastography did not give usable information. So the whole thing was a wash. :( The physician assistant gave me three options:

1. Repeat the MRI/Elastography in a year.
2. Repeat the Elastography itself 
3. Take a biopsy of the liver to see the amount of fibrosis.

I decided on the first. I'm not sure how the elastography without MRI works. I've had an ultrasound elastography and it had me in a much worse condition, giving erroneous results. And as far as the biopsy...no.]

Please send good thoughts

So the sensor to my glucose meter is expiring in a little over an hour, but I can't replace it, even though I do have others, because Tuesday morning I have an MRI and I can't wear it (it has metal in it), and I don't want to waste a ten-day sensor for just a little over a day's time. So it's back to pricking my finger for about 36 hours. Not bad, really, in terms of the timing.

I am nervous about the MRI for a few reasons. One, I'm claustrophobic. They've given me hydroxyzine to take a little while before to take the edge off. Second, it looks like I'll have to lie flat for about 45-60 minutes. I sleep with a CPAP. I'm a little iffy on breathing while flat for that length of time. I may ask if they can put the fan on. Third, it's an MRI/elastography of the abdomen to measure the pliability, of lack thereof,  of my liver. Back on the summer, I had an ultrasound/elastography and I had to spend some amount of the time exhaling all my breath out (in a mask) and then holding without breathing over and over, so my abdomen would be still. It made me light-headed. I'm thinking this might be the same, and that's why she didn't want to sedate me. (An open MRI was not an option, as the images would not have been clear enough). Lastly, this is to see just how damaged my liver is. I know it's enlarged. The ultrasound indicated cirrhosis due to non-alcoholic fatty liver disease. If that's the case, it's very serious. It could mean liver tumours, advanced liver disease, paracenteses (drawing fluid off the abdomen that had built up with a long needle), encephalopathy from a build up of toxins (think loopy as someone dealing with dementia--my mom once put a lighter in the microwave, and my stepfather caught it before she turned it on...she'd thought she was making soup), even an eventual wait for a transplant. If it isn't full-blown cirrhosis, but a milder stage, that's great, and there are things I can do to reverse our stabilise it. I've already lost 25 lbs., although that was mostly from being put on another diuretic. That's one thing I can do, along with lifestyle changes and exercise. So it's good to know exactly what we're dealing with. But I'm nervous and a little scared. My mom died of this, and it was terrible. If you wouldn't mind, send some positive thoughts my way Thanks!

I've been processing some news rather than writing about it

For years I have been concerned that my bloodwork always shows my liver enzymes as very slightly elevated, because my mother had the same thing happen to her. It eventually progressed to fatty liver disease secondary to diabetes, then NASH Syndrome (non-alcoholic steatohepatitis), then cirrhosis, then to liver cancer, and then to liver failure, and it finally killed her.  It was terrible. 

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!

Sad

Someone in my life and I aren't really close anymore. Once we were enmeshed, and it wasn't healthy. Now we see each other on some holidays and when either of us is having health issues. We talk occasionally on the phone. There are good reasons for the distance. But tonight, I received a phone call from her that really brought up a lot of emotions, mainly sadness and concern. They're pretty sure she has cancer, and she will be having a tumour removed next month from her liver; at that point, they'll know more about course of treatment. She already has several health issues, and this must be a blow to her emotionally as well. So tonight I'm feeling sad, concerned, and regretful that our relationship is such as it is, even though I know it's unrealistic to expect better. I love her, though. I don't want to lose her. I'm sad she's going to go through this.

Anyway, we'll see how it goes. The evening took strange turns tonight. I was reminded that I was supposed to dose the dogs for fleas, so I after 'Big Bang Theory', which was great, especially one of Sheldon's mom's lines--'When your idiot brother redeems others, he can marry whomever he wants', I went over there and dosed the dogs, gave one her pill with peanut butter and bread and the rest peanut butter on bread without the pill, cleaned her up a bit, and we were watching the premiere of 'Minority Report' when my mom called. It looks to be a good show, we liked it, so it probably will be cancelled. YKWIA is a bit like Sheldon, not particularly comforting, so afterwards he got A up out of bed (he works very early in the morning) and had him hug me. That was sweet, on both parts. But now I'm home, and away from the distractions of TV, and it's starting to hit me, not just the sadness but the fear of losing her. She's really the only family I have left in Kentucky, and we've shared a lot of life together. But, it must be much worse for her right now. Anyway, I'm going to go on to bed. Tomorrow is an early day, and I'll be in registration part of the morning. Keep her in your thoughts and prayers, if you don't mind, and thanks for doing so. Good night.