Here's what I learned from the OKC doctor I saw Friday.
1. He believes I have Sjögren's ("SHOW-grins") Syndrome. Sjögren's is a chronic disease in which white blood cells attack the moisture-producing glands. Learn more here: The Sjögren's Syndrome Foundation.
2. Besides Sjögren's, he believes I also have a secondary autoimmune disease. The tests Friday were to find out what it is. We'll have the results from them later this month.
3. He started me on the drug Plaquenil aka hydroxychloroquine. After a month as we find out how I tolerate Plaquenil, he will add a second drug or third, depending on what the secondary autoimmune disease turns out to be.
4. He also believes that I do not have lung cancer. Instead, he believes I have "chronic pneumonia" caused by ongoing inflammation in my lungs.
5. Whatever is going on with me, is serious and life-threatening, but he believes we can control it and perhaps over time even reverse some of the damage done to my organs.
6. Speaking of organs, my liver has taken "much damage." With the drugs controlling my raging immune system and if I lose weight, my liver should recover. If not, I will be looking for a liver transplant within "five to 10 years."
7. Autoimmune disorders are "not curable, but they are controllable."
8. The costs for this treatment are ... unpleasant. Friday alone cost me nearly $1,500, with the visit and the tests. Thank the Good Lord for credit cards. And now I must go and rob a bank.
9. I return to him Monday, April 6th. We get test results, take more tests, and add more drugs to my treatment regime if things go well.
And that's about it. I feel somewhat encouraged by the visit. He seemed to think he could really help me, and I'm ready to not feel as bad as I do. So I'm hopeful this is the beginning of the healing.
I appreciate your prayers and support. You all have been a great blessing to me. Talk to you soon.
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4 comments:
That's kind of scary, but at least you have something to work with. Looking at the web site, I began wondering if your IBS might really have been a symptom for this. Or did I misread the secondary information?
If not, you're just one complicated medical guy. Prayers for your continue.
Please, please,go to www.sjogrens.org. Yearly I go to 2-3 mini-conferences in the Boston area to meet with other SSers and hear knowledgeable speakers. These and the Sjogren's foundation have helped me greatly. Other areas of the US have similar groups. Like many people, I have multiple autoimmune/inflammatory diagnoses. The two most prominent are Behcet's and Sjogren's. Just make sure you are going to a physician who has had LOTS of experience with your diagnosis. The SS foundation will help you locate one. Good luck!
{{hugs}}
Great! you sounded a bit hopeful :)So do we get lunch in the city soon?
Roen
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