My Platform NMO Rare Disease

Saturday, March 16, 2013

Discharged home

So the plan to be discharged Friday was in our favor, my white count was up and everything else was going along as planned.  After the usual morning hospital routine, I told my sister I didn’t feel well.  She came over felt my head and said you may have a temp, she put the nurse light on and my temperature was 101.6, from there it went as high as 103.6, there was no way I was going anywhere, until the fever subsided  
My girls have all had a fever at one time or another and you know they are punie looking, whiney, and you just know they do not feel well.  You do you all can to make it better but fevers do their own thing.  I do not believe I have had a fever that I can recall that made me feel so bad for three days.  They cultured everything they could, however they were unable to find a source for the fever.
We watched online church service, and prayed to All Mighty God that the fever would go away and stay away so we could come home.  God is so faithful; I do not know how people make it without Jesus Acts 17:28 declares that it is in Him we move, in Him we live, in Him we have our being, I cannot, don’t want to do anything without Him. 
Dr. Burt released us Monday we came home Tuesday PTL. The recovery will be long and sometimes difficult, but I got a beautiful card that will serve as my reminder …recovery is a process.  It takes time.  It takes patience.  It takes everything you’ve got and more to get through the process but you will get through.
From start to finish the Lord’s hand has been on this transplant.  From not knowing if I was a candidate, to not having insurance coverage because this has not been FDA approved, each, every obstacle that came up the Lord made provision.
I’d like to say that because of God’s provision this was a piece of cake,  it was not there were some very cloudy days and sleepless nights but I am so glad that I was able to remind myself that Jesus has already bore my sickness and disease, and by His stripes I am healed.  I know that there is purpose for my life and there are those hopeless, helpless ones living with this disease that do not know about a transplant, and if they did they would not have the resources to have the transplant.  From the transplant team point of view without enough of data from actual transplants then there would not be a FDA approval. As I am recovering join me in prayer for God’s direction to be the voice that cry out for Devic’s Disease and other rare Autoimmune Diseases.


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