Friday, October 24, 2014

Lab results/medical update for me

Lab results/medical update for me:
I have been debating since I found out this morning on how to post this, so I'm just gonna put it out there. PRAYERS ARE NEEDED.
My blood work is back and I have tested positive for Atypical HUS.
What is this, you ask? well, this is the best explanation I have.
There are a lot of big words in there and I understand if you have questions, PLEASE ASK ME. I will answer any and all questions that I am able to.
I had a medi port installed in my chest yesterday. This is to do blood draws from and get IV medications through it.
I am meeting with the hematologist on Monday to discuss the results, get my vaccines, and schedule the treatment.
There is only one drug for treatment for aHUS at this time. It is called Soliris and its done via IV infusion. From what I understand, I will get this once a week for 5 weeks and then every 2 weeks for possibly forever, depending on how I respond to it. It's a fairly new drug and the long term side effects aren't really known yet.
This disease is not common and I am the first diagnosis for my specialist. She had suspected this and took my case to a conference of doctor's to review before my appointment last week. (I do think its kind of neat that my case has been reviewed by multiple doctors at a conference lol). All of these specialists were in unanimous agreement that I have aHUS. After this, we did the blood work for genetic testing to confirm.
So, what do I need from you? I need prayers, and lots of them. Not just for myself but for my family as well. This isn't an easy pill to swallow. There is no cure and I do have all the symptoms/signs. Please add me and my family to your Church prayer lists. Please donate blood/plasma when you can. Please just pray.
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