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.

4 comments:

  1. I'm glad that you've been diagnosed, but I wish it wasn't such a life-altering one. You will continue to be in my prayers.

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  2. As Adrienne said, I'm glad at last you know what is going on, and I also will continue to pray. I'm impressed with your attitude--I would have a tendency to sit and whine! I pray that God continues to use this for His glory and for your ultimate good, my friend!

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  3. So very glad to hear you finally have some answers. You're in my thoughts!

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  4. I am so glad that you can finally be treated and have the answers for your troubling health concerns. Good luck with everything!

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