I have spent a few days trying to decide the best way to update everyone on what is going on in my life. I discovered I can cut and paste from my care pages where I kept my previous blog. SO, I am going to cut and paste everything from that so I can have it all in one place AND update the past year of medical history. I am toying with the idea of trying my hand at writing a book since I have an extremely unusual medical history. I have had quite a few people encourage me to try it. This will also help me keep some structure and help me with an outline if I decide to try it. I know a lot of this will be boring, but I think this will be a therapeutic outlet for me. And let's be honest-I seriously doubt I will have a lot of followers:) So without further ado, I am going to start at December 2008. I will post each entry as separate blog entries.
Posted Dec 22, 2008 9:02pm
Hello All,
I just wanted to let everyone know what is going on in "Kinsley's World of Health." During the end of October/start of November my blood work was looking better. Then the week before Thanksgiving I fell down the stairs at Trentt and Amy's house and hit the back of my my head. Being on blood thinners, my parents thought I should to the ED. I started having vision issues, balance issues, etc. A week later things were not better, they were getting worse, so I went back to the ED, this time I had lesions on my brain stem. I could not get in to see a rhuemotologist and nephrologist quick enough so I was admitted to the day hospital this past Tuesday, and I am still here.
We were not here expecting to get a diagnosis, especially since it has been almost 2 years of not going anywhere, just maintaining what I have. Then, the new rheumotolgist came in after reviewing my case and he is really familiar with this disease and is convinced it is what I have. I have all of the symptoms, but the only problem with it is the test for it. It has only showed up positive one time. When I was tested this week it was negative again. Dr. Mishra says being on warfarin (blood thinners I am on) will cause the test to show up negative. So, my hematologist/oncologist wants to run two more tests before they will say without doubt that this is what it is. The name of the disease is Antiphospholipid Antibody Syndrome. My type would be catastrophic because it has affected more than one organ or system in my body. Things seem to line up with the progression of the disease and how things have been brought on.
The reason past treatments have not worked is because my body was basically rejecting itself and the drugs were not strong enough to kick its butt. With all of this being said, I am going to include a website if you care to browse, and also tell you what they plan as far as treatment for me. Treatment makes me a little uneasy right now, but I will get through it and I hope to feel better than I have ever felt in the past. I am waiting for my blood to get thick enough (which it is now) to have a perma cath put in my neck. This will also access to my jugular without having to be stuck all the time. I am number one on the list Monday morning. I will be somewhat sedated to do this. Then I will have a MRI of my brain with contrast to make sure there is no tumor and or infection, which is not expected. After that I will have ONE treatment on dialysis to get all of the dye out of my system, because it is so harmful to my kidneys. (I guess I should say at this point that I have had a lot of damage to my left kidney from vasculitis, and it is in the process of dying.)Then, I will have a spinal tap for the same reason, just to rule out any fungal/bacterial type infections. After that I will be hooked up to a machine that will take out all of the bad antibodies in my blood. I don't know how many sessions I will have yet, but the original goal was Mon-Wed and be done with it. Depending on my blood work will depend on how often I have to have the plasmapherisis done. Now, that gets as many bad antibodies out as possible, and I am taking chemo to prevent more from forming. I started chemo on Thursday. (The chemo drug I will be taking is Cytoxan.)
Anyway, this is what is going on at the moment. I am in Room 808 in the North tower and my number is 702-6808. I hope to be home for the holidays, but I am not holding my breath on that one at this point. I hope this finds you all doing well! If anyone would like to visit feel free!
http://www.apsfa.org/index.html
Love,
Kinsley
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