Friday, February 20, 2009

Getting Answers

This whole diagnostic process has been overwhelming to put it mildly. I have been through more tests in the last few weeks than I think I have had previously in my entire life. I am constantly being reminded to pay better attention to my body. You would think I have learned my lesson over the last couple of years. But with mystery ailments and no answers it's easy to feel like it's just my imagination. And yet again, when the new symptoms started my first inclination was to trivialize them.

I began feeling like I was catching a cold on New Year's day. A week or so later I lost my appetite. When I did eat I would feel full after a few bites and then feel a dull pain. I had begun to notice the dull pain back in December but it wasn't major and I didn't want to visit the doctor for something as vague as that. My heartburn became so bad that it kept me up at night. I quickly lost 10 pounds. After inwardly debating (yes, still) I decided to call my Gastroenterologist and shockingly I was scheduled for an appointment the very next day. After listening to my symptoms she said it sounded like my digestive process had slowed. I also mentioned a symptom that in hindsight is important to note, my urine was the color of iced tea. She said it was most likely due to dehydration since my intake had become much smaller and that I didn't look yellow so my liver was probably fine. (Interesting considering my later diagnosis.) She ordered a few test for the slowed digestion and also decided to do a control CT scan to check my intestines for signs of Crohn's while I wasn't having symptoms.

1/28 - Upper GI - I previously had this test 2 years before so I knew what to expect. I drank the crystals mixed with water that remind me of pop rocks and then the thick, chalky barium. I kept repeating thinking to myself that it was a milkshake. :) Then under the direction of the doctor I flopped around like a fish on the x-ray table. Results: Minor acid reflux, but that was found on the previous test as well. They also found what appeared to be a polyp in my upper small intestine. An endoscopy was ordered to remove that.

1/30 - My doctor called with the results of the Upper GI. She had also reviewed my chart (which she didn't have on my previous visit due to me coming in on such short notice.) She had noticed a very mild elevation in my liver enzymes about a year ago which was what got me started on the road with the connective tissue disease in the first place. Based on my history of other autoimmune issues she asked me to go in for blood work to recheck my liver enzymes just to be sure.

2/3 - Went in for blood tests, they took 5 tubes worth to check liver numbers and other autoimmune factors. I used to hate needles and would get lightheaded, but a sure fire way to get over that fear is to have lots of blood tests. Over the last couple of years I have gotten over that one.

2/4 - Gastric emptying study - For this one I had to eat oatmeal with radioactive material mixed in then lay under a machine that took pictures of my digestive process for an hour. I got to take a nap during. Results: Gastroparesis. A fancy word that means my stomach empties slowly just as she suspected. She gave me a medication to take as needed to speed up my digestion.

2/5 - My doctor called with the results from the blood tests. My various liver numbers were sky high. Normal range is below 40, mine were in the 500 - 800 range. My bilirubin level was also elevated. They also found I have elevated anti-smooth muscle antibodies. She said based on my history she believed it to be autoimmune hepatitis and asked me to go in for an ultrasound to check my liver, kidneys, and gallbladder to rule out gallstones. She also mentioned possibly having a liver biopsy.

2/6 - Ultrasound of liver, kidneys, and gallbladder. Results: Possible spot on my liver, no gallstones. Also submitted more blood tests to check bleeding rate in preparation for liver biopsy.

2/9 - CT scan originally ordered to check for signs of Crohn's while asymptomatic. For my previous 2 CT's I drank some solution that was mixed in sprite and it wasn't so bad. For this one I had to drink more barium only this barium was thinner and tasted horrible. It was about 5 large glasses worth that I had to drink in 30 minutes. The tech told me I might need to use the restroom after drinking it. I thought she meant one thing, boy was I wrong. That stuff upset my innards pretty badly. Results: No signs of Crohn's (yay, I don't have IBD) They also found a small spot on another part of my liver but my doctor isn't worried about that and a small cyst on my right ovary (I had just ovulated so perhaps that's what they saw.)

2/10 - Esophagogastroduodenoscopy (sheesh) - This is an endoscopy where they stick a tube with a camera down your throat. I was luckily knocked out for this procedure though it only took a few minutes to perform. Results: I didn't have a polyp, it must have been food or a bubble that they saw on the Upper GI. They found gastritis (inflammation in my stomach) and did a biopsy that ended up being negative. She also noticed before the procedure that my eyes looked white which meant that my bilirubin had come back down. (For the record, I never really noticed that I was yellow although my bilirubin numbers were high enough to cause me to.) She asked me to repeat my liver blood tests again to see if my numbers had come down and perhaps I wouldn't have to do the liver biopsy after all.

2/12 - My doctor called with the results of the blood test. She was surprised and pleased to see my bilirubin was back to normal and the liver enzymes came down dramatically though they were still high (200) so she asked me to proceed with the liver biopsy.

2/16 - Liver Biopsy - This one I was actually scared of doing. I have seen doctor shows and yes, I know they are all dramatic but I knew what went on for a liver biopsy. Under local anesthesia they insert a long needle through your skin to retrieve samples from your liver. I was nervous to say the least and had a reaction to the anesthesia. I got lightheaded and had ringing in my ears, I was so embarrassed. That passed quickly and the test was over quickly. I couldn't even feel the biopsy needle. (Thank the Lord.) I had to remain at the surgery center for 4 hours of observation. The first 3 hours I spent lying with a rolled up towel on my puncture wound. Painful. I was given pain medication but it never took effect. I was given a second dose a couple of hours later and again, no real effect. When I had an hour left they allowed me to lay on my back and the medication finally kicked in and I was out. My nurse came to discharge me. She had a thick Indian accent that I could understand perfectly before but because of the medication she might as well have been speaking a foreign language. I was that out of it.

2/20 - Last visit with my doctor. My liver biopsy was consistent with Autoimmune Hepatitis. She said it was mildly chronic meaning it has been going on for a little while but it was caught early. I have no major damage. She reviewed results from the other tests and procedures. She formed a plan of action in the course of treatment and helped me choose one of her colleagues for my next doctor. Today is her last day, she is moving to another state. I am so sorry to lose a doctor whose philosophies about medication and patient/doctor relations were so in tune with mine. I made sure to thank her for everything she had done for me. I believe she went out of her way, knowing she was leaving and yet not turning me over to another doctor until she figured something out. That's integrity to me and I wish her much success wherever she ends up.

1 comment:

  1. WOW! What a trip through the medical world. I have also had a couple of those tests. I am really glad that the answers are beginning to come for you (maybe you should be on the mystery diagnosis show when this is all over. Good luck and God Bless!