What It Is

Autoimmune Hepatitis is a rare disease in which the immune system attacks the liver, mistaking it for invading cells. There is no cure, but there are treatments that keep it under control. Prednisone is the usual treatment but may be paired up with or replaced with azathioprine, budesonide, mycophenolate, cyclosporine or mercaptopurine. Approximately 70% of those affected are women.

I am in no way an expert on this subject. Every day is a learning experience.

In this blog, I will revisit my experiences and post current experiences. I will also add information I find useful and probably some rambling.

Saturday, March 9, 2013


It's been awhile since I've posted. Shame on me. As of now, I am back in the game. At least, that is my plan.     My plans never seem to work out, but I truly enjoy writing this blog. It may not be top notch (far from it), but it is something that helps me and I am proud of it. Anyways, enough babbling and I'll let you in on my life the last few months.

I ended up having five banding procedures (one a month). I like to call them my banding sessions ;). It was definitely an experience I will never forget. My hepatologist and all the nurses were so great. It was kind of fun walking in each month and having half the staff recognize you. Plus, they spoiled me rotten and not one of them was floored by my odd sense of humor. In fact, they joked right along with me.

The 'sessions' themselves were unique experiences. During one, I woke up towards the end of it. That was not so much fun. Being able to feel the scope and the last band being put on was almost but not quite painful. My last 'session' was even more interesting. The anesthesiologist didn't want me vomiting on my way home again (I had done this every time), so she apparently adjusted the anesthesia. I was quite awake for almost the entire procedure. I didn't really feel anything. The worse part was trying to swallow the scope down with a numb throat. I actually found the entire 'session' interesting since I was able to listen to and watch what was going on. Too bad my eyesight is bad and I couldn't see what was going on in the monitor. Strange enough, the moment the scope was pulled out, I was out cold. But at least I didn't vomit on the way home....

The last two months have been kind of terrible. My fatigue got worse, the pain in my liver area started bugging me again and was spreading through my entire abdomen. I went in to see my family doctor first. I was very happy my husband came with me because he ended up being a valuable witness to my state of mind. I had no idea I was depressed until my doctor asked started asking questions. One question hit me hard, "Do you feel like a burden to your family?" I broke down in front of somebody for the first time in four years. I was put on an antidepressant. I still have a month to go before I get the full effects of it, but it has helped tremendously. I now get bursts of energy where I get things done. It's only small things, but to me it's a HUGE step. I also no longer feel like a burden. Yay for me!

Back to the pain. My blood tests revealed some of my levels were slightly elevated, a couple more so. A ct scan revealed my organs were fine (as long as you don't count my crappy liver). So off to see my hepatologist. Well, his assistant. After I explained everything, she did her routine physical, and after checking my eyes she asked if my legs itched. Never really thought about it since it's winter in Wisconsin. That will tend to dry out a person with or without lotion. I told her yes. I must have taken to long to answer (did I mention that I have brain fog going on too? No? I do. That is not a good thing). She gave me a knowing look  ordered an extra test with my labs and told me I probably developed Primary Biliary Cirrhosis (PBC).  I wasn't shocked. It's quite common, actually. After the test results came back positive, I started Ursodiol.

I also tested positive for a urinary staph infection. The antibiotic that it responded to was ciprofloxacin. A drug they use to treat anthrax. The side effects were a bit crazy. I didn't know if I was coming or going, but the mystery has been solved.

This past week has been pretty great. I've had bouts of energy, no more itching, eyes are looking good (I did check my own eyes a couple weeks back and they were a bit yellow around the edges) and the brain fog is starting to lift. I say that, but today was kind of an off day. Grrr. I wanted to go out and do something with my husband. Within the next couple weeks or so, the ursodiol should be at a therapudic level.

Maybe this summer I can actually enjoy a bit of life? That would be AWESOME. I've got big plans that I will happy if I can accomplish even a small fraction of .

One more thing I didn't mention. I have a new hobby that I was always to chicken to try because I have a brown thumb. Bonsai trees. My dearest friend sent one as a gift to cheer me up after all the crap that I went through this past year. She had no idea how much I love them. She just wanted to get me something that wouldn't wilt and was different from the norm. Her plan worked. I cried I was so happy.

Tuesday, October 23, 2012

Insomnia to Excess Sleep and Back Again

This is a difficult topic to explain properly. But I will try. I can say that the medications cause the lack of sleep and the AIH/cirrhoisis causes the excessive sleep. There is no rhyme or reason to the sleep pattern. It comes and goes in whatever mix it feels like bestowing upon me from both extremes to anything in between. I write this today because I have started insomnia mode. This does not include the days of fatigue I deal with, but I have no doubt plays a big part on how I sleep.

During any given week, I will sleep every other day with the actual sleep time varying from 4-14 hours. Sometimes the insomnia lasts for a day or two but it can go on longer than a week. What bothers me the most about these days is that I have so much energy inside, but my body is sooo heavy and won't necessarily comply. That is frustrating. On a good note, I get more done than usual. 

Then there are the nights when I can only sleep for approximately four hours. Sometimes I wake feeling refreshed, sometimes not so much. These nights can happen consecutively, but more often than not, they are just thrown into the mix randomly.

Finally, my normal amount of of sleep. Generally it is 12 hours but can go either way an hour or two. I usually feel like I received a proper amount of sleep, sometimes it's not enough and  rarely do I feel as if it's too much.

The past couple days I went 37 hours without sleep. During this time, I had almost fallen asleep a couple times, but each time was for a short moment. I would snap awake and all sleepiness would be gone. ANNOYING to say the least. After finally falling a sleep, I was blissfully unaware of the world for about 13 hours. Even then I had a hard time waking up, but my lovely kitty had other ideas and made sure I woke up just for him. Today I feel very very off and foggy. Bleh. I hope I sleep tonight. Not looking forward to the days that follow.

I do take Benedryll (or the equivalent) occasionally to help sleep, but anymore than two days in a row, it becomes ineffective. It is a double benefit since I have allergies. I don't take other over-the-counter sleep aids because most are harmful to me, Benedryll being the safest even though it is not an actual sleep aid. I have tried melatonin with my hepatologist's okay, but that did nothing for me. I am jealous of the people that it does work for. It seems to be about 50% of the people I talk to that use it, it works great. :P  I could try a prescription sleep aid, but I'm to chicken yet. I see myself becoming addicted to it. In the days of old, before this blasted illness, I would do breathing exercises that worked wonders. Now I have yet to come across one that works for me. As I write this, I'm thinking more about making an appointment.

Friday, October 19, 2012

What NOT To Say To Somebody With A Chronic Illness

This is a list anybody with a chronic illness, invisible or otherwise, hates to hear. I used a post I had seen as the basis for this, but, it is what is said. While some of it may be said with good intentions, it can really hurt. I do my best to be forgiving because I have been one of those people, but sometimes it's hard. I have heard every one of these and while some of them really aren't that bad, some open an already deep wound even farther.

But you don't look sick.
This has been said in three different forms to me.
1) In confusion
2) To possibly make me feel better with a compliment
3) An accusation
The first two, for me, are fine. I can try to clear up the confusion and I can be understanding towards the intended compliment and say a thank you. But do NOT accuse me of making something out nothing. I don't have this because I want it. Just because I don't look it, doesn't mean that I'm not suffering in some form or another. Do I have to look like I'm dying before I'm believed?

Everybody gets tired.
Yes, everybody does get tired. But do you know what it's like barely being able to get out of bed or not getting out at all more often than not? Do you know how hard it is to be to tired to be able to the things you used to do? Do you know what chronic or severe fatigue is?

You're just having a bad day.
Really? Having a debilitating chronic illness is having a bad day? I have to live with this forever not just a day.

It must be nice not having to work.
This is one I hate the most. I heard this from people I worked with for fifteen years. I was not lazy at work. I rarely took off if I wasn't feeling well. If I did, I was really sick. When I had surgeries, I would talk the doctor into letting me return to work early. These people should know better. Yeah, it's great worrying about bills and food. It's great having had to give up the life I once had. All just so I could get out of working. Yeah, it's nice. It's so nice that I sold my horses that I loved dearly. It's nice to feel completely useless.

I wish I had time to take a nap.
I gotta say, naps are great when fatigue sets in. My naps are borderline narcoleptic. They are gonna happen whether I have the time or not. Did I mention the chronic fatigue before? Oh, I did, but you chose to ignore that part.

If you'd get out more...
If I get out more, that's going to make me what? Magically cured? I get out as much as this body lets me. Yeah, sometimes I force it, but I pay for it dearly. I wish I could get out more, the bed or the couch aren't exactly my favorite hangouts. I get told this by well meaning people. Some are struggling to understand, others just don't bother to.

You're just getting older.
My husband used to say this to me before I was diagnosed. I would get so mad because I knew I was to young to be feeling like this. Now he knows better.

If you'd get more exercise...
This one make me frustrated, guilty and angry. And again, it comes from well meaning people. They seem to think exercise is a cure all. And no matter how I explain, they refuse to listen because they know somebody with an illness and it did wonders for them. Awesome for those people. While I agree I need more exercise, desperately, Fighting the severe fatigue is a battle. I used to be extremely active. I lived with ants in my pants. Now, the guilt and frustration of not having the energy to even go for a walk  is tremendous. And then to have somebody say that makes me want to crawl in a hole. On my good days, I make the most of it. Some of the not so bad days, I push it.

It can't be that bad.
I will trade bodies with you for one day. Then try telling me that. Do you know what it's like not being able to hold a fork because your hands hurt so bad? Or not being able to hug somebody because your skin is sensitive? Not being able to go out with your friends because you are to exhausted just from grocery shopping? Do you know what it's like just struggling to get out of bed and then pray you have a good day? Do you know how hard it is to sleep when every part of your body hurts and you can't take anything to help? Do you know how hard is to be left behind because your body can't keep up? Granted, everyday isn't that bad, but that's not what you mean.

It's all in your head.
Yeah, that's why I see a specialist. That's why I take pills every day to stay alive. That's why I end up in the ER for related issues. It's all in my head.

You're just depressed.
Yup, I get depressed because of my illness. But my illness is not because I'm depressed.

There are people worse off than you.
Yes, I know this. I feel absolutely horrible for those that are suffering more than I am. But don't expect that comment to make me suddenly better or okay with having this illness. My pain is my own. My problems from this illness are my own. I have to struggle every day just to stay afloat. When you break a leg, don't worry about the pain or setbacks, because there are people worse off than you.

You'll just have to tough it out.
Yup, for the rest of my life. Tough it out? Is this a blizzard or something?

You just need a more positive attitude.
I don't even know how to respond to this one. I thought I was rather positive. Other than the bouts of depression that can't be helped, my attitude hasn't really changed. I'm naturally happy. I think I'm doing pretty damn good considering this chronic illness sucks donkey butt. Stick that in your pipe and smoke it.

It'll pass.
What part of chronic did you not understand? Is it another blizzard?

Ha ha. I was getting pretty upset writing this. But now I feel better after getting all that sarcasm out. It's a shame most people will still never "get it" until it happens to them. I have patience with people that honestly try to understand and be forgiving of them when they stick their foot in their mouth. I've said it before, I have been one of those people. I ashamed of myself for it, but it helps for me to remember that so I don't get so upset. But there is always those people out there that know it all and you will never change their thought process.

Sunday, October 14, 2012

Getting My Varices Banded

Thursday I had my esophageal varices banded. The procedure went well but the overall experience was interesting for me to say the least. I'm a bit loopy on a painkiller right now, so please bear with me. =D

I went into the procedure room fully expecting to have those annoying things banded, when my hepatologist came in he explained he might band them. I was slightly disappointed but had a feeling he'd end up doing it anyways. He also told me, while explaining the procedure and possible outcomes, that 1 in 10 people experience pain after banding. I know my luck and knew I was that one. It could have been one in a million and I would still be that one.  I was right, but I'll get to that later. Since I was in a good mood, I told my hep that I loved being able to go there and I was happy to have him as my doctor (I was not given any anesthesia yet). He looked quite embarrassed (but happy) and told me nobody likes coming to the hospital.

During the procedure, I started coming to. This has happened before with another doctor and it was very painful. Not this time. While it wasn't all that comfortable, it didn't hurt and it was very weird feeling what was being done. I fell back asleep right at the end and woke up in recovery feeling rather giddy. I have no idea why, my only guess is that I was just so happy to have things taken care of.

After being checked over by a nurse, my hep came in to discuss the details. I started to feel pain in my chest at this point and he wasn't surprised. He had done thousands of these procedures and never had to band more than 3 in a person. He banded 5 in me. Also, the varices were extra large (last year they were only medium sized). He had not expected them to be that big. I was extremely lucky that they had only leaked and not burst.

I was monitored a bit longer than normal because of my pain. All the nurses there were so great. I made sure to thank them and did not hesitate to tell them I loved them all. Yeah, I blame the anesthesia this time.

Omeprazole - to block acid production
Sucralfate - to coat my esophagus and protect it from acid, bile, and enymes. Also to keep food    from breaking the rubber bands. It's liquid and actually tastes pretty good.
Liquid oxycodone - for the pain. This also is surprisingly tasty. Not necessarily a good thing.

Prescribed Diet:
Day 1 - full liquids (any type of liquid as long as there is nothing lumpy)
Day 2 - soft foods (like cooked noodles and potatoes, no solid chunks)
Day 3 - regular diet

My Reality Diet:
Day 1 - sipping water and milk
Day 2 - drinking water and milk. Trying a couple tablespoons of tomato soup.
Day 3 - drinking water and milk. Eating a small bowl of homemade creamy potato soup
Day 4 - eating a small bowl of rice crispies. Sipping on a soda. Chancing a couple pieces of lunch meat.

The first two days I couldn't walk around or sit up to long without vomiting so I spent the majority of my time laying on my sides. Yesterday I could walk around more and sit up longer than previously, but I still got nauseous. Today is far better although I still need to lay down occasionally. The pain should have been gone by yesterday, but I still have it today, it's not as bad, but that is the primary reason I need to lay down. Friday, a nurse called to check in on me and I explained what was going on. She felt horrible for me but told me not to hesitate to call if it got worse.

The Pain:
Think of how your chest feels if you have ever hiccuped and burped at the same time, then multiply it a few times. It isn't constant, but comes and goes. When it hits, it travels up my neck and jaw and causes a headache right in the middle of my forehead.

Despite everything, I've been in a very good mood. I'm in the process of having my biggest worry fixed, my husband is doting on me and my best friend spoiled me with the potato soup she made (she spoiled my husband also by making steaks and cookies). I feel blessed.

Wednesday, October 10, 2012

A Better Day

It always feels good to make through the rough days. I ended up fighting something off the last couple days. Had a slight fever and all the fun along with that, but oddly enough, I felt good mentally. Today is a very good day. Barely any aches and pains today, no depression and an appointment I'm looking forward to tomorrow. Finally getting my varices banded. YAY! I am not looking forward to the spray they use to numb my throat. It's hard not to panic when you can't swallow and the drooling...MY GOODNESS, THE DROOLING! It's so embarrassing even though it can't be helped. I just lay there praying for the anesthesia to kick in faster. It always reminds me of the times I fell asleep in school to wake up with a puddle on my desk. What a thing to remember. It's almost as bad as the naked-at-school dreams. Ha Ha! It is good to feel good. Now, to get something done around the house...

My wish for any readers is that you have a wonderful day and if you too are having a hard day, that you safely make it through it. <3

Saturday, October 6, 2012

Turmoil Within

Today is not a good day. Lots of inner turmoil. I've noticed it happens after I've had good days. Having trouble organizing my thoughts and struggling to stay out of depression. I am physically and mentally wore out.

When I have good days, I am able to accomplish a few things around the house and be physically active. When one feels really good, one can't help but enjoy it as much as possible. The aftermath sucks, though. Too much activity means excessive sleep and when awake, thoughts of uselessness and self pity set in. I am at that point.

I hate not having the energy to get up off the couch. I hate not being able to do something as simple as sweeping the floor. I hate the thought that I can do these things, but why am I not doing them. I hate the conflicting desire of wanting to do something and not caring about getting it done. I hate feeling useless yet not being able to be useful. I hate the thought of my husband having to do everything and what he is truly thinking about me on these days, which are numerous. He says it's okay, but I can't help but wonder. I hate wondering about my existence in this state. I hate feeling sorry for myself and being unable to move forward. I hate being like this. I am afraid to be left alone, yet I want to be left alone. I am afraid of what the future holds for me. I am afraid of failing in God's eyes. I hate being afraid. I hate this. I don't want to be like this.

I used to be a very active person. I had horses and rode a lot. I loved taking care of them and the all the work it required. I loved to garden. I loved picking rocks to make a patio. I loved making that patio. I loved going out in the woods to help cut up fallen trees. I loved running everywhere to do interesting things. I miss starting a project, getting sidetracked and starting another one. I miss my husband being mad yet entertained by my inability to stick to one thing. I miss running through the woods with my dog. I miss helping out anybody that needed an extra hand. I want my life back, even if it's just a portion of it.

Every day I have joint pain, some days are worse than others. Occasionally my skin is extremely sensitive and wearing clothes is uncomfortable. If I'm not careful, I pick up whatever bug is floating around  (and thanks to some people, even when I am being careful) What lasts a day or two for most people, last a week or two for me, usually morphing into a secondary infection. I am okay with all of the physical aches and pains because it reminds me I am not crazy. I am not okay with the fatigue that results in mental distress.

I don't even like to talk about it much to my husband, family or friends. I feel like I'm putting them in an uncomfortable position. I am told I can lean on their shoulders, but I keep thinking who wants to listen to the same story over and over again. If I am asked questions, I have no problem answering. I am told I am strong for dealing with this. I am not strong. I cry a lot. I don't want to worry or burden anybody, but I want somebody to take it all away. I am not strong. I can honestly laugh and make jokes about all the bad things. My personality is to make light of a bad situation, but the bad days kill that part of me. I am not strong.

Being part an online support group has helped in so many ways. I learn we all go through this, plus more. I can tell them things I can't bring myself to discuss with the people close to me. I have learned through this method that writing out how I feel is much easier than talking about it. I find the thought of people whom I have never met reading my inner thoughts is easier than letting people I care about know. I am guessing it is because I don't want them to worry. I want them to believe I am strong. I don't want sympathy, just understanding. If you feel sympathy towards me, I find no fault in you. Thank you for caring enough to feel that.

I believe that starting this blog will help me whether anybody reads it or not. My thoughts may not make sense, but I am already feeling a bit better having gotten it out.

I will become strong.

Friday, October 5, 2012

Insurance Woes + My Upcoming EGD

I am envious of anybody that has a good, hassle free health insurance. I empathize with those that have insurance they have to constantly fight with or have none at all. I have the difficult-to-deal-with insurance, which I am covered by my husband through his work. I shouldn't complain over the premium cost considering it is not that much, but the low cost also comes with a minimal coverage area and a need to constantly cross one's T's and dot one's I's. Along with this is the fact that they are not very forthcoming and have been less than truthful. Because of them and my lapse in judgement, I had to have my latest EGD cancelled. During this procedure, I was to have my esophageal varices banded. The result was not pretty (see ER Visit).

The last couple days, I have been in contact with my old gastroenterologist that had made the original referral to see the hepatologist I am with now (my case was a bit difficult). My insurance had told me I could only have him renew my referral if I wanted coverage. My current hep is out-of-network, including about 3/4 of any doctor in the state and half of the doctors within the covered area. Yesterday, I get a call from his office saying that I was covered now with my hep but that they had nothing to do with it. Huh? I thanked them for taking time out of their schedule to help me. They were happy to help, but think something is wrong with the insurance company. You think?! 

Now to get things going with my hep. Called them and explained what had happened with the ER and that my insurance was straightened out. The EGD is now scheduled for Thursday and I will be given a call if they can get me in sooner. YAY! I didn't ask, but I think the GI clinic I go to had a few words with my insurance company. They really do not like them. Can't imagine why...