Monday, February 23, 2009

Making Adjustments

I have been diagnosed with Autoimmune Hepatitis. I have already come to find I have to be careful to explain to others. Since my dealings with connective tissue disease started last year I have done research and was already familiar with the workings of Autoimmune Disease. Autoimmune Disease occurs when a person's immune system is sent the wrong messages and the body launches an attack on healthy body parts as if they were foreign. Much is still not known about why and how this happens. There is even speculation that Autoimmune Disease is one single disease that affects different people in different organs. Some people carry a predisposition for the disease especially if they have a family history.

Hepatitis is simply inflammation of the liver. In general, most knowledge of Hepatitis is usually the Hepatitis viruses A,B,C (and I have found there is a D,E,F, & G as well) so when I tell people they will hesitate or step back and I quickly explain that I don't have any of the viruses. And that I don't have an alcohol problem, I haven't had anything to drink in about 4 years. My body is attacking my liver.

For this I have to make adjustments in my life. I'm not a fan of taking medications but of course take them when necessary. The treatment for this disease is high doses of immunosuppressants with the goal of achieving remission of symptoms and thus much lower maintenance levels of the medications.

I am currently taking Predinsone and Mercaptopurine (6-MP). The long term side effects of Prednisone are of great concern: diabetes, bone loss, glaucoma, as well as the less serious like breakouts and weight gain. 6-MP can lower the need for so much Prednisone but also has the potential to cause serious (but rare) problems like inflammation in the liver, kidneys, and pancreas. I will have monthly blood tests to check for this as well as my blood counts because they can lower white blood cells.

Suppressing the immune system with medication means my entire system is less protected from infection. If I got an infection I would have a harder time fighting it. So I have to avoid contact with sick people. Now, of course I'm not going to live in a bubble (though my paranoid husband thinks I should.) I will still go about my regular activities. But I won't sit next to or touch sick people, have to make sure to frequently wash my hands, and make a habit of not touching my face, nose, or eyes unless my hands have been washed.

If I get a fever (100.5 or higher) I have to receive immediate intravenous antibiotics. Here's hoping that only happens during regular office hours and that I won't have to make trips to the ER.

Another adjustment I have to make is in regard to gastroparesis. Since my stomach doesn't empty fast enough food can just sit there and cause heartburn and indigestion. So I have to eat smaller, more frequent meals. I feel like I am constantly eating. I also have to avoid too many rich, fatty foods at once. My doctor gave me medication that I can take when I feel it's necessary. This may get better over time or I may deal with it indefinitely.

It's been difficult with the barrage of information coming at me but I am grateful to know some of what is going on. I am grateful to have doctors helping to manage my health. I am grateful that we have our finances in much better order and the financial burdens of all the testing and procedures hasn't set us back. I am doing all I can to maintain a positive attitude and that has been a big help because it isn't always easy. I know that God is working in this and through this to grow me into a stronger person.

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.

Thursday, February 19, 2009

Time

I was struck the other day by how much time has already passed this year. February is almost over and I feel like I have been asleep for most of the year so far. The last month and a half have been a whirlwind of tests, procedures, doctors visits and luckily I was still able to go on some fun trips as well.

My mother and I were talking the other day when she told me she hadn't realized just how sick I had been. It hit me then that I hadn't realized it either, but thinking back I was very sick. Perhaps I was in such good shape physically that the assault on my body didn't affect me to the extent it could have. However I am glad things are being figured out, we should have answers tomorrow, and my life can gain back some normalcy.

I'm actually looking forward to having a weekend at home since we have been gone for the last 3 weekends. Strangely, I look forward to cleaning our home since it hasn't been touched since (shock, gasp) before Christmas. And mostly I look forward to finally being able to cook my dear, wonderful husband a nice dinner and bake him a homemade cake for his birthday. His 30th birthday was last week and with all the doctor's appointments and traveling I wasn't able to honor him. And he deserves to be honored for all that he has done for me in the last 2 months. He has worried about me, taken care of me, done shopping and cooking, put up with my bad moods, my pushing him away, all without complaining.

I am a very blessed woman.

Wednesday, February 18, 2009

Survey Says...

How well do I know my spouse?
(I've always found these to be fun. So, since I have lots of time while I am still being good and following doctor's orders even though I feel fine, I decided to fill it out. I'll check with Brandon later to see how close I am.)

1. He's sitting in front of the TV, what is on the screen? 24 or House
2. You're out to eat; what kind of dressing does he get on his salad? Oil & Vinegar
3. What's one food he doesn't like? Pickled Beets
4. You go out to eat and have a drink. What does he order? Dr. Pepper
5. Where did he go to high school? Same as me, we met each other in 3rd year English.
6. What size shoe does he wear? 10 1/2
7. If he was to collect anything, what would it be? Computer bits & bobs (they are all over our shoe box sized apartment.)
8. What is his favorite type of sandwich? Buffalo Chicken Sandwich
9. What would he eat every day if he could? Chips & Salsa
10. What is his favorite cereal? He eats oatmeal the most but I don't think he really has a favorite.
11. What would he never wear? Flip-flops
12. What is his favorite sports team? He doesn't care to watch sports but would say the Texas Aggies if he had to.
13. Who did he vote for? I honestly don't know. We discuss politics but don't usually discuss who we vote for, he can vote all over the place because he gets strategic. In our last governors race I do know he voted for Kinky Friedman.
14. Who is his best friend? Me
15. What is something you do that he wishes you wouldn't do? Worry about my future endeavors
16. What is his heritage? German, Polish
17. You bake him a cake for his birthday; what kind of cake will it be? Homemade chocolate cake (but what he really wants is rum cake, I can't stand the smell so I refuse to make it, I'm so mean.)
18. Did he play sports in high school? Cross-country running
19. What could he spend hours doing? Reading/Surfing the net
20. What is one unique talent he has? He's very detail oriented. He's not afraid to ask lots of questions which makes him very helpful at the doctor's office and quite entertaining at church.

Tuesday, February 17, 2009

Abilene Weekend Highlights

I have a lot of catching up to do what with all the doctor's visits and busy weekends lately. And now I am on bed rest until tomorrow so I have the perfect excuse.

My mother, Brandon and I traveled to Abilene on Thursday night to spend the weekend with my brother's family. We were entertained by my 3-year-old nephew, charmed by my sweet baby niece, and amused by my brother's antics.
  • While making lunch Friday I made the mistake of offering a 3-year-old his choice of sandwich. I went down the list of options and he said no to each. After that I decided to just set a turkey and cheese sandwich in front of him. While I was making it he announced, "I like peanut butter." I had only placed the slice of cheese on the bread at that point so I took it off, broke it into pieces and set it on the side of his plate and proceeded to make the peanut butter sandwich. When I set the peanut butter sandwich with cheese on the side in front of him he sternly informed me, "No, the cheese goes on the inside of the sandwich." He then pulled the bread apart, put all the cheese on the peanut butter sandwich and ate the whole thing without complaint. He also demanded a pickle to complete his meal. YUM!

  • Ella is the calmest, happiest baby I have ever met with no exaggeration on my part. She is all smiles and coos when she wakes up, smiles all day long and only cries when you take away the bottle half-way through feeding to burp her. She loves having her diaper changed and goes to sleep easily. She is also sleeping through the night. Bryan and Lindi must have hit the baby jackpot as far as easy babies go, though Collin is making up for it a little now in refusing to potty train at home.

  • Lindi's mom and brother came over Saturday night to play Cranium with us. Towards the end of our first game they drew a Club Cranium cameo where we had to pick one person from each of our teams to do a charade. They all looked at the word and burst out laughing and I thought, surely they wouldn't put THAT in there. So laughter ensued as my husband, sister-in-law, and brother started miming the various stages of procreation. We guessed all the obvious answers but they kept going. When they were about ready to give up Lindi picked up some flowers, pointed to the pistils and stamen while Brandon started holding up more and more fingers. Finally it clicked and I guessed reproduce. We were in tears through the whole process of actions, answers offered, and confusion when we weren't right.
  • After the Cranium games were over Bryan and Lindi's brother, Zach were wound up so they decided to go through the acting box to entertain us further. Brandon made the observation that we were getting a glimpse into the future of Collin and Jaxon. (Jaxon is Zach's son who was born 5 weeks earlier than Collin. Hardly a day goes by that they don't see each other so they are more like brothers than cousins.)
  • We took Collin to the zoo on Friday. He was so excited, "I want to see the lions.. and the monkeys..and the 'jig-geraffes'.. and the snakes." He would run over to one cage, glance at the animals and run off to the next. We played at the park afterward where he didn't want to leave. When told we were going to go see mommy and daddy he informed us, "I don't like mommy and daddy."
  • Collin is headstrong and very particular about doing things a certain way. He has a bit of a temper at times. (just like his Daddy did) If he wants your attention he says, "HeyHeyHeyHeyHey..." until you give it to him. He loves Dora, Elmo, working puzzles, and playing trains.
  • We went to The Homeplace Restaurant while there which is always a treat. The country food is to die for and the atmosphere makes you feel like you are in another time.
It was quite an enjoyable weekend minus the drive. It's just a shame that we only see them 2 - 3 times a year but with a 6 hour drive one way, it's difficult to find time to go more often. Both Collin and Ella change so much each time we see them. And I miss getting to hang out with Bryan and Lindi.

Thursday, February 12, 2009

Rejoicing in the Simple Things

I sometimes struggle with being grateful for my life.  I spend too much time wondering what in life I am meant for instead of enjoying where I am right now.  I beat myself up for my perceived inadequacies.  I don't give myself credit for being good at anything.  In short, I am incredibly hard on myself.  It's been a life long struggle.

But this morning I was able to come out of my morning fog very early.  My fatigue seems to be lifting, my energy is increasing.  My appetite isn't back yet, but I am able to eat more without the acid reflux and pain.  And my doctor seems to be getting closer to figuring out this mystery.

I have been distant with Brandon, I have been dealing with a lot and sometimes I don't know how to think or act.  I have been talking to him, working through the emotions but I'm sorry to admit I haven't been very affectionate with him.  That and he has a cold and I'm supposed to be avoiding those with infections right now.

But today is his birthday, and I've felt bad for pushing him away.  I got up this morning to cook him breakfast while he was showering.  He was so grateful.  I have already cleaned the kitchen, started and finished some laundry and am about to make cookies for my little brother's birthday this weekend.  I have some packing to do and some errands to run and feel like I actually have the energy to complete it all.

I am becoming aware of my limitations with health.  That it is alright to say when sometimes, I don't have to push myself to do everything.  I have been to the doctor's office for tests and procedures more than I would like, my arms are black and blue from the IV's and blood draws, my body is trying to adjust to some potent medicine that I don't exactly like having to take.  I have a liver biopsy coming up on Monday that I am absolutely terrified to have performed.

However, I am grateful that my energy is coming back, that I am able to have more of my life back.  I am grateful that through all of this I haven't had to sit in a hospital bed, that my family is being supportive in taking me to the appointments I can't drive myself home from.  I am thankful for a doctor who seems to genuinely care and is working hard to find answers and solutions to my problems even though she is leaving next week.  And I am blessed to have a husband who loves me and cares for me when I am sick even though I am slightly distant from him.  And most of all I am grateful that God loves me so much that I'm never alone. He is always with me and He will help me through this, no matter the outcome.

Monday, February 2, 2009

Traveling is Fun..

..but it's nice to be back home. We just got back from a long weekend in Los Angeles. We went out for a good friend's wedding. I visited L.A. about 12 years ago but had forgotten how sprawling that city is. There are so many people, cars, buildings, and traffic there.

People here in Houston complain about the bad traffic and rude drivers, but Houston has nothing on L.A. It takes 30 minutes to go 9 miles in L.A. Mind-boggling. Brandon kept driving super-carefully. Ha! They ate him for lunch. In L.A. there is no right-of-way. You do not slow down and you definitely don't stop when the light turns yellow. If you haven't moved within a second of the light turning green, you get a honk. The turn signals on all cars are broken. I snickered at Brandon's shock when a motorcycle zoomed in between two lanes of stopped traffic on the freeway. Thank God we borrowed a GPS from my mother, it was a God send. Although the GPS did get confused a few times, apparently they move streets around there. :)

It was a short trip but we did get to drive around for a bit of sight-seeing. On Saturday evening we made our way down to Santa Monica to walk around the beach and then the promenade. It was fun going around watching and listening to the street performers. There was a middle school kid out there playing classic rock songs. A crew of b-boys that reminded me of the 80's. This guy was out there playing his violin. Some guy was out there boldly evangelizing.

Our flight out was nice and smooth and fairly empty. On the completely full flight back we rode a roller-coaster. Fun times! Thank God for Dramamine. I didn't realize that some airlines have started charging for the first checked bag. I have always been able to carry on my luggage. But with the ridiculous liquids rule in place, this is the only time I wish for stick straight hair. With naturally curly hair I have to put a lot (A LOT) of conditioner and mousse in to tame it, and I can't put it in my carry on. I have heard that they might do away with the rule so that's good news for me.

We were given a good talking to by Chu when we got home. She reminds me so much of a dog when we get home from trips. She is at the door waiting, she excitedly runs back and forth not wanting to let us out of her sight. She demands attention and won't take no for an answer. She did express her displeasure either with our leaving or not giving her sufficient attention by loudly knocking things off of great heights in the middle of the night. It usually takes her a few days to adjust to other's homes, so for weekend trips we are able to leave her at home with a continuous supply of fresh water and a large bowl of food. For longer trips she stays with my parents or sister.

Now it's time to unpack and clean up and get back to somewhat normal life. I have more medical tests this week and next and one that has yet to be scheduled. My doctor called while we were on the plane Friday morning to say they found a polyp in my small intestine so they are removing and biopsying it as a precaution. Perhaps it's the cause of my lack of appetite and pain. The likelihood of it being malignant is small so I'm not worried. She would also like me to repeat a liver enzyme test since I had elevated numbers twice within the last year. Those numbers were the fluke that caused my doctors to later find the connective tissue disease. My pain has decreased somewhat and I am able to eat a bit more, but my appetite still hasn't returned to normal. Here's to hoping that they solve the mystery soon.