How the diagnosis of an autoimmune immune deficiency disease filled me with more Grace
than I ever imagined and how I am now living in that Grace each day.

Friday, September 14, 2012

Lucy, You've Got Some 'Spleening To Do!

I apologize for being "off the grid". About 24 hours after that cute picture in the previous post was taken, I came down with Aseptic Meningitis, a very rare but not unknown of reaction to my first infusion. Apparently my body did not like either the brand of IVIG or the rate at which it was infused, so I started with the worst headache I've ever felt, neck aches, and fever. My doctor had me to immediately to the ER and after the most terrible ER experience, including a doctor who was very condescending to me about my condition, another physician who was unable to do my lumbar puncture causing me to have to be sent to radiology where after 15 punctures they announced that "there was blood in the fluid" (ya' think!?!?) and they couldn't see anything, and then another nurse trying to sit me up after my spinal tap when I had to lie flat for 4 hours. 

I was admitted for 4 nights, had some very uncaring nurses, and a bed that started moving in the middle of the night and turned the TV off and on and changed channels while the bed was going up and down. NOT fun when you are trying to lie flat and you are nauseated. The nurses said that I must be dreaming or rolled over onto the control (it was nowhere near where I was sleeping), and it happened three times before Carl saw it while he was there and finally got me a new bed. I was never so happy to go home, especially since they didn't want to give me a shower because it was "too difficult" to do with the port. 

Anyway, I RECOVERED and have had several more infusions since then. Each time the side effects are less and I am infusing over 6 hours, hydrating and pre-medicating with steroids and some other medications. I have also found a wonderful online support group where I get some wonderful information. I was feeling so good that I was able to attend MOPS Convention in August. I will blog about that amazing experience before the end of the month. 

With my BFF, Neighbor and MOPS Field Leader Laurie

I started feeling pain in my side a few weeks ago, and I have actually been very tired, like I can't get out bed in the morning and have to take a nap tired. I attributed it to recovering from Convention, then to just the craziness of life after school started. This past weekend the pain got so bad, and I decided it wasn't muscular or back spasms, and I asked my Naturopath if he knew what it was while I was there. He palpated and felt around, pushing and making me yip like a poodle. He explained to me that what he was feeling was my spleen, not a muscle. God made our bodies with the spleen all tucked up under the rib cage, safe and sound from any harm. However, for unknown reasons, mine has swollen and expanded out beyond the safety of the ribs, and is hanging out, exposed and vulnerable. 

The spleen one of those organs that is not very necessary in a healthy person. However, in someone who is immunosuppressed, it has does some extra duty work sometimes. I had blood work done, and my labs were pretty normal. My urine had blood and some other proteins that did not make my doctor happy. I am spending a lot of time resting and doing nothing waiting on the Epstein-Barr Virus titers to see if I have active mono, because of the exhaustion that I am feeling, and I will see my immunologist on Monday. I will be getting my infusion as scheduled on Tuesday. 

As of right now I am still scheduled for surgery on Friday to repair my deviated septum in my nose, and "clean out the turbinates". I really am praying that this does not hinder my surgical status because I have gone off my meds to prepare for surgery and I am so miserable with a continuous sinus infection. 

Stay tuned as I will update as I have more information. And please pray for me once again. 

Proverbs 18:10 (NKJV)
The name of the Lord is a strong tower; 
the righteous run to it and are safe. 


1 comment: