Jon has been diagnosed with Lupus Nephritis, which is a kidney disorder that is a complication of systemic lupus erythematosus. So, he has systemic lupus erythematosus, or lupus, which is an autoimmune disease. It is a lifetime disease that can have flare ups at any time, so we will need to live a healthy, cautious, lifestyle to avoid flare ups. He is between stage IV and V, V is the highest stage. You can read about it.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001512/
http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutintroduction.aspx?articleid=100&zoneid=9
I should also mention that he will do a 6 month aggressive treatment to get his immune system regulated. From there, he will be on a medication for life to keep things in check.
We are hoping he will get to go home tonight. They have to give him his third round of steroids and another procrit shot. His potassium level is still very high, his hemoglobin is up to an 8.2, his albumin (protein) is still very low. If his levels are okay tonight and Jon feels like he is strong enough to go home, they will send him home.
He has been waking up in the morning feeling great, but by afternoon he is so sick again, and then by evening he is okay.
It is going to be a long road, but we just hope his body will respond to the medications so that he can get feeling better quicker. He will need to stay on a low potassium diet for a while (my education is starting to pay off already!)
I'm sure I am forgetting things, but I will repost if I have forgot something. I will post pictures as soon as I get home (I don't have the cord to upload the pictures and my card reader doesn't work).
Thanks everyone!
4 comments:
I bet it's so nice to finally have a diagnosis. Poor Jon this must have been so awful feeling so sick and not knowing for sure what was causing it. Lupus huh...my cousin has lupus and when you were describing his symptoms I had the thought it might be that because that sounds exactly like when she was diagnosed. I know how awful she feels at times so my heart goes out to Jon, it's a daily struggle for her....but yet she is still able to do all that she wants to, so I hope that is encouraging for you guys to hear. Thinking of your family Holly, and I so hope he is feeling well enough to go home real soon.
Wow Holly. You send him our love and prayers for me. If you need ANYTHING you let me know!
My goodness Holly, your mom had mentioned something to Ashley about all of this the other day when she did her hair. I have been thinking about you ever since then. What a scary couple of weeks you have had. Glad to hear you finally have a diagnosis, although I am sorry he is going to have to deal with this. My cousin has lupus and for the most part is pretty healthy and happy so hopefully his will be the same. Keeping all of you in my prayers, hang in there.
Oh Holly! My word this has been such a hard year for you!! I hope Jon gets feeling better soon. Let me know if I can watch your kids anytime
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