Friday, August 14, 2015

The Setback


I feel like I owe everyone a huge health update. Now that I seem to have my feet under me, I can catch you guys up. I've updated you on my chronic active EBV over the past few months. You can read about the first time I talked about it {HERE} and my other updates {HERE}. 

Since I updated last, things have been a rollercoaster. When I originally went to my doctor with strange symptoms, I thought I was having a vitamin deficiency or maybe blood sugar problems. I got dizzy and light headed often and had zero energy. I continued to check my blood sugar even when my doctor said it was perfect. 

A few weeks ago, I was joking around about having perfect blood pressure. Someone had a blood pressure machine and we checked mine. I happened to be having one of my really rough days and we discovered I had very low blood pressure (95/55 consistently). My tongue and face would be numb, I could see my surroundings tilt sideways while I was sitting still, and my resting heart rate was much higher than normal. 

After rounds of steroids (and weight gain), my doctor referred me to an infectious disease doctor over an hour and a half away. When I met with this new doctor he confirmed all of my symptoms were related to my immune system going absolutely nuts. We then decided to go ahead with an IVIG treatment to boost my immune deficiency. 

This past Monday, I had my treatment. 




I was told it could give me a headache during the treatment, but I didn't feel anything. The first 24 hours were very promising. I didn't have a slump in energy the next day and I thought that I may have been cured. My blood pressure stabilized.

On Tuesday evening, I took Caleb to football practice. We all went to dinner after and I developed a headache. I came home and went to sleep. Around 2 am, I woke with a severe migraine. I couldn't lay down or sit without unbearable pain. So I paced for hours. Around 4 am I became nauseated and got sick several times. At 4:30, I woke my husband in a panic. I normally have large veins in my hands, but I couldn't see them. I knew I was dehydrated. Ryan insisted I go to the hospital. I wasn't sure how I could tolerate the pain long enough to ride to the hospital at that point.

We went to the largest hospital in Chattanooga only to find out they had no beds available and an average wait time of 7 hours. We met the nicest triage nurse that came over immediately to let us know so we could make a choice. He told Ryan he didn't know if I could wait that long to be seen. Ryan decided to take me to a nearby hospital while my doctor called ahead (we are fortunate to have a good friend as a doctor). They took me back quickly, started an IV and morphine. I was taken back for a CT scan to check for aneurysms. My parents were two hours away and headed home to be with me. I was severely dehydrated and needed plenty of fluids. I ran a fever and had chills. It was one of the most miserable things I think I have ever been through. I can't remember being in so much pain.

I can remember Ryan was on the phone a lot, but I can't really remember much of it. I know the doctor came in several times, but I can't remember much of it either. They wanted to do a spinal tap and I could not go through that. I know they did another round of morphine. Aseptic meningitis is a side effect of IVIG treatments. I can't remember getting home. All I can remember is waking up at 5:30 pm Wednesday night when my parents came to sit with me while Ryan took the kids to his parents.

Thursday I still had a bit of a headache, but it wasn't awful. I haven't had pain meds in over 24 hours so I feel like the worst part is over. I was able to watch Caleb play football again Thursday night and I came home and had energy to clean some. I haven't been able to do that in months. Normally I am wiped out by 8:30 in the evenings. I clean in the mornings or at lunch, so it's a relief to finally have the energy to do that.

I am hopefully optimistic. I'm almost afraid to get excited at this point, but I am supposed to see a difference on day three or four. I don't really know how long it should take to see a full effect. I am terrified that it hasn't worked and this is just some temporary placebo effect. I don't know what the next step would be if it didn't work.

That's basically where I'm at. I have tons of things to write about, but I have to just get through this right now. Hang in here with me.

1 comment:

  1. Sending prayers that you are the mend and back to yourself soon!

    ReplyDelete

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