What's Next?

This question keeps popping up so I thought I'd do one post just about that, what's next.

Recovery takes a full year.  The body must rebuild immunity to everything.  I won't be going anywhere public for several months.  The longer I can stay in and healthy, the more we will be able to prevent sickness.  If you are sick or if you've been around anyone sick, then it's best to stay away.  

If you are invited to our home in the next year, certain precautions will have to be taken.  

-if you've been around anyone sick, we need to know (preferably before you come, so we can determine if we need to reschedule).

-come your cleanest!  Showered, clean clothes, etc.

-shoes will be left at the front door, in the closet to prevent tracking anything into the house.

-no flowers or new plants can come into our home for a full year.

-no animals can come into our home for a full year.

I will be avoiding large crowds as much as possible.  When we fly home on Sunday, I'll be wearing a mask and gloves to prevent exposure to anything.

I will be starting PT over the next few weeks to help me get my strength back.  My time in the hospital had me in bed almost everyday, so I lost a lot of muscle mass.  

Things that I was told to expect over the next year:

-exhaustion-as my immune system tries to come back on line, it takes a lot of energy.

-pain-the nerves that were damaged during my years with CIDP are still there. The disease has been stopped but damage has been done and as the nerves regenerate, pain will accompany.

-I will be taking anti viral and anti biotics over the next year to prevent infection.

-IVIG-that is officially over!  No more IVIG!!!

Things I've already gained back:

-I can feel my fingers and fingertips. I can feel soft, smooth, hard, bumpy...etc.  Prior to HSCT, I couldn't feel anything, I could sense pressure but no feeling.

-the electrifying, pins and needles, burning pain I had in my legs, is gone!

-muscle cramps that I used to get throughout my entire body, are gone!

-eye spasms that would last for days at a time, are gone!

-muscle weakness that prevented me from walking any sort of distance or up and down stairs, is getting better but will take time.

This year is going to have ups and downs.  I'm sure there will be some visits to the ER for me since we can only do so much to protect me from germs.  But, we will get through it.  This time next year, my immune system will be back on full swing, my CIDP will still be gone, and I'll be ready to take on what's next.  

Excited is an understatement! :)