Saturday, June 3, 2017

I Need A Jail Break!


Today is one week that I have been in the hospital for a chronic sinus and bronchitis infection.  My Dr came in yesterday and said maybe by Tuesday I will be able to go home.  Believe me, I am ready.

I am in isolation; few visitors can come in and they must not be sick - even a little sick.  All of the staff has to dress in gowns, masks and gloves to enter my room.  God forbid should they forget something... they have to strip the sterile gowns, gloves and masks, go get what they forgot and redress to come back into my room.  I don't bother them.  Once they come in, I give a list of what I need; bottled water, spoons, sterile water... whatever.  Other than that, they don't know I am here until their computer tells them they need to change my IV or bring me medicines.  All of this means I have very little contact with anyone.    


I am not allowed to have fresh fruits and veggies, not allowed to have ice or water out of the machine.  I get bottled water only and it must be washed before opening - and no ice at all - not even from the hospital kitchen.  I can't go out of the room without a mask or gloves.  I have to wash when I return.  


All of this because of the lack of immune system.  My ICL was bad enough, but now I have been diagnosed with hypogammaglobulinemia - another word I have to learn to pronounce because I have it.  The Dr explained since my T-cells are missing, they cannot tell my B-cells what to do.  Since the B-cells are clueless, they don't make antibodies to protect me from germs, viruses, and whatever... yep, it just means my immune system continues to tank.


"Hypogammaglobulinemia is an immune disorder characterized by a reduction in all types of gamma globulins, including antibodies that help fight infection"


There is help for the hypogammaglobulinemia - I will start monthly IgIV's to replace what my body doesn't make.  This does not help my t-cell deficiency, but it will help me fight the infections my IgG should be fighting.  I had no idea the immune system was so complex!

So that is my update today... I know you may get sick of hearing about my ICL and immunity problems, but I am honestly trying to find someone else that has it and to open people's eyes to immunodificiencies.  It is just not that common and I need to tell my story.

In the meantime, I am wrapped in love while I am here:



And thanks to the few who have braved coming up to see me.  I was not allowed to have visitors, but my hubby, sister and another friend have dropped by.  And the cards are adorable!  Thank you, thank you!  

I need a jail break.  Seriously need to just go home.  I miss my life. I miss my hubby most.

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