IVIG Infusion

Yesterday and today I saw my old friend and nurse Bello.  He came to my parents home and spent the day giving me my infusion.  He didn't leave here last night until after 9:00.  I am thankful that I was able to get him again as my nurse.  I'm a rare case in how badly I react to the medicine and we have to have a very strict order of events.  The days before I drank nearly 100 ounces in water.  This is to ensure hydration and to prevent negative side effects.  The day of, he gets my line in, I take oral Tylenol, he gives me fluids via IV, then steroids via IV, then Benadryl via IV.  If you've ever had the pleasure of IV Benadryl, I'm sorry, it burns your veins like liquid fire when it goes in.  This is also when my body goes into a twilight sleep where I can't really move but I can still hear what's going on around me.  After all that, we start the IVIG.  Both days, we ran it at the slowest speed we could since it's been over 18 months since my last infusion.  After the IVIG is complete, we run another bag of saline to make sure I'm properly hydrated.

My dad came in at one point and looked at the line in my arm.  He gently hugged me and said, "I'm sad that you are having to do this again."  Me too dad, me too. 

My post medications this time consist of a steroid pack and anti-nausea meds.  The worst side effects will start showing up in a day or two so if we can stay on top of them, the better off I'll be.

I have never been too good about taking time for me, or downtime.  As a wife, mom and business owner, I am constantly going.  I enjoy the hustle and bustle of life so being forced to lay down for days on end is really difficult for me.  You see, I desperately want to live a normal/healthy life.  I had a taste of that for a little over a year and it was sublime.  There was no scheduling conflicts around my infusions, no lost work, no little boys being sad that mommy couldn't play.  Since I have tasted freedom and health, I long for remission like a dessert yearns for rain.  I desperately want to live a normal life free of IV lines and Benadryl comas.  I desire to run in our new yard kicking around a soccer ball, climbing trees and hiking the nearby trails.

Dr. Burt is hopeful that remission is possible again.  The course of action for now is we will infuse for one day, every 3 weeks.  I was able to only do 2 days and not 3 because I've lost 15 lbs since before the transplant!  Yay me and yay one less infusion day!  So, we march on, hoping this works and stops the progression.  Until then, I'll keep snuggling with these guys.

Relapse

Back in August, when we were at the beach, I developed shingles.  It was one of the worst cases my Dr. had ever seen.  I took the medications prescribed and the shingles cleared up completely about 6 weeks later.  Also during this time, I noticed some tingling in my toes.  I wasn't too concerned at the time as this is a common occurance for us HSCT veterans when we get ill, the old damage/symptoms reveal themselves.

At my one year checkup in June, the only symptoms I had were slight numbness in the tips of my toes.  Fast forward to today, my fingers, feet, and parts of lower leg are numb.  The shooting electrifying feeling is back and I'm having major difficulty walking.

From my shingles outbreak in August to today, I have been in touch with my team in Chicago.  Up until a few weeks ago, we were all hoping that my symptoms were just my body dealing with the shingles outbreak.  My symptoms got so bad so quickly, that Jesse and I flew out to Chicago for appointments and tests yesterday & today.  

We sat in the exam rooms, staring at the floor, anticipating the truth that we already knew.

I am sad to say that I am no longer in remission and my CIDP is back.  I have officially relapsed.

----------------------

How did this happen?

Dr. Burt explained it in major medical jargon so I will do my best to interpret.  The shingles virus was dormant in my spinal fluid which lives right next to a large cluster of nerves.  When my body started fighting off the shingles virus, it also started fighting those nerves because they were all right there, next to each other, breathing the same yucky shingles virus air.

--------------------

Now what?

Dr. Burt told me he has had one (1) other CIDP patient who relapsed.  (Remember, the remission rate for CIDP is in the 90% range).  That patient went back on IVIG for 18 months and was able to stop taking it and go back into remission.

So, we again get to figure out this horrible balance of medicine that makes me feel like dying versus a disease that is killing me from my extremities inward.

---------------------

Did the transplant really work?

Yes!!!!!!!  Yes it did.  Hands down.  100%.  My CIDP was gone and I was disease free for over a year!  

The transplant let me get to play soccer with my boys, paint, move and sell our old house to get our boys a yard they so desperately need.  I am thankful for the year I had disease free to live a normal life.  I am of course sad and in grief over this relapse and what that means for our family, for our future.  Dreaming has now stopped again.  

We are scheduled to settle on our new home on December 30th and I am scared out of my mind.  Wondering if we should break the contract and wait and see where we are in a few months.  When we put the offer in on this house, my symptoms were minimal and we all thought my body was just taking its time healing.  The joys of being an adult mean you get to ask the super fun questions like, "are we making the right choice? Is this the path we should go down? How will my disease affect the boys again? Will I be able to keep working? Will Jesse ever get to pursue his career? Will he ever get to finish his degree? Will he ever get to stop putting his life on hold for my breaking and failing body?...". The list goes on and on and on.

I am sad, very very sad.  As I told Jesse the other day, I will keep fighting but there will be times when I don't want to, when the physical pain is to great to bear.  Those are the times when I need help picking myself back up, dusting myself off and starting all over again.  

For whatever reason, this is my journey.  None of us get to choose what hard things we endure in this life, we just get dealt them.   We do get the privilege to choose how we respond to the hard things.  

I will try to remember that how I react to this is what I can control and that my example will shape my boys into some amazingly compassionate men.  But, that is only if I choose the higher road, the road of love and vulnerability.  

I desperately wish that this was not something I had to deal with in this life.  I wish the only hard things I had to endure were things like career choices and whether or not to relocate our family.  

Having this disease has given me one thing that I am grateful for, perspective.  It really takes a lot to ruffle us, to disturb our souls so much that it causes a panic attack.  When you're constantly in the hard, daily issues like traffic, disgruntled customers, terribly tantrumy two year olds just don't affect you the same way.

So, we march on and keep fighting to live and love.