Tuesday, November 6, 2012

Liver Update

Back around the beginning of October I made another trip to Chapel Hill for a liver check-up with my specialist so I thought I'd do an update since I haven't had time to do one yet.

So the big news is that I'm off the steroid. Hooray for that! And the lingering effects are gone. Which means that I am no longer sweating like I'm having a hot flash for no apparent reason. Also the swelling and bloating is also gone. My doctor told me that being off the steroid will help me with weight control...he's so subtle.

Other big news: my liver levels are normal. They haven't been normal in almost a year. It's great news because it means that my medication is working and it doesn't need to be messed with right now.

I guess I've been officially diagnosed with Autoimmune Hepatitis even though he hasn't "officially" said it. So far, it seems manageable. I'm not crazy about the "hepatitis" part of it so if I'm in a situation that calls for talking about it, I just call it a "liver condition". Hepatitis scares people into thinking that if I touch them or breathe on them that they'll get it too. Obviously, they won't...but some people are weird.

Another issue that's come up is that lot of people like to ask us when we're going to have another baby. "Is Grant going to be an only child?" "Are you ready for another one?" "When is Grant going to be a big brother?" I realize we have a child that is at an age where people generally announce a sibling. I really want people to stop asking. I realize that I'm no longer yellow and I don't LOOK sick...but my health is still an issue and will continue to be because this doesn't go away. If Grant has a sibling someday, and I really want him to, it will have to be carefully planned with my doctors (and I'm very unlikely to share about here). We would like to add to our family one of these days but that is our decision. Not one made because we have a two-year-old and it's what people typically do. My health is coming first. If Grant is the only child we have, then he will have a healthy mother who loves him and will hopefully be around a long time for him. I know it sounds like a lighthearted question when asked but it does not have an easy answer. And, frankly, it's no ones business but ours (unless we make it your business - and you know who you are because I/we already talk about it with you).

So that's pretty much that. I'm "getting better" but will never be cured. Well, who knows, maybe someday they'll have a cure for it but I think it's rather low on the list of diseases to cure. Now that the scary OMG-what-comes-next part is behind us for now, I'm adjusting to life on an immune suppressant which means I get sick often and it's harder to get rid of (although I did manage to escape catching strep throat from Grant recently). It's also a blood thinner so this fall is already a little rough because I'm very cold very often (and long term use can be linked with cancer...a "rare" side effect). I have to be on this medicine for two years before they'll consider reducing the dose but my doctor does have a plan to put this into remission, it just takes a while. My joints are adjusting to being off the steroid. As much as I hated most of the side effects of prednisone, it really made my joints feel good but now I generally always hurt somewhere. Overall, I'm just trying to get used to always feeling like something is "off" with my body. If my joints don't hurt then I have a headache, I'm lightheaded (I can't say I'm dizzy or I'll have to go to another doctor for that), I'm incredibly fatigued, or my stomach is messed up. All that aside, though, I'm better off than a lot of people. My medicine is helping to keep my liver in a time-out so we all just get along.

 PS...I was told once again by my doctor that I shouldn't drink or smoke (he did let go of the IV drug use thing). I tried to tell him that he really doesn't have to give me that lecture. I'm really not going to do it. I might be the only patient he has that's not even tempted by it. But he insisted that he's spent years arguing with people about how little is too much and that if I have a drink even three days before, it can mess up my blood work. So I nodded my head like a good patient but I have the feeling he thinks I was hiding a six-pack in the car. I'm perfectly ok with the idea that I'll never be able to have another drop of alcohol...but if he tells me I have to swear off ice cream, we're gonna fight.


  1. Well said! I am so happy that you are better and no longer yellow!

  2. Just 'catching up' with some of your post. I really enjoy the time you spend sharing pictures, recipes, and special moments of your sweet family. I don't know how you do all that you do. Love ya'll!


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