Day +30 (1 MONTH)

It's been one month since I got my stem cells back.  One month since my CIDP was stopped.  One month since we watched fireworks over the lake.  One month since I felt so sick and longed for my children and their sweet hugs.  

Being home is a lot of work.  My body aches everyday like I've done an extensive workout at the gym.  

We are all still getting used to this "new" normal.  What it means for mommy to need to wash hands all the time and stay away from lots of people.

This was my view for the past week and a half.  Thanks to Jesses Aunt & Uncle for sharing their condo with us, we were able to be together at the beach, the boys got to enjoy the sand and waves and I was able to sit, listen and heal.  Such an awesome way to end our transplant journey.  My brother Caleb and his family joined us for a week.  He is also the one who made my video.  At the end of our time at the beach he said, that was the exclamation point to our transplant adventure, a good way to end it.

Next week, I see my PCP and will be talking about physical therapy and massage as I heal.  My muscles ache so much each day.  My nerves are trying to heal and this is very painful at times.

So far, my blood work has all been great! All in all, my recovery is going well.  It's lots of work.  I can still remember what the constant CIDP electrical surges felt like.  The fact that I can feel some on my fingers and feet, amazes me!

I've had to explain this sensation a few times now.  This is what I've come up with, imagine that you're wearing 5 pairs of socks and gloves.  You go to pick up your cup, but can't feel it, you feel the pressure of it as you squeeze it, but you can't feel the cup.  Now imagine that someone just took the socks and gloves off!  You can now feel the sensation of the cup.  After not feeling things for 4 years, being able to feel anything is amazing!!!

My last IVIG treatment was 53 days ago!!!  I can't even tell you how awesome this is for me and my family.  If you haven't seen my video, go here and watch (http://youtu.be/mxTq3tz1yeY). IVIG saved me in one aspect but it destroyed me in another.

This is hard work but so worth it to be able to live again. :)

3 Weeks Old! (+21)

It's hard to believe that it's been 3 weeks since I got my stem cells back.

We are currently at the beach.  The air has never felt or smelled so good.  I may not get to enjoy the sun or the waves this year, but I am appreciating the time away with a new perspective.

Monday, I went for my weekly blood draw.  I'm masking up because I don't want to risk someone sneezing or coughing on me in there and getting me sick.

Our youngest son, he's a little over one, spiked a fever and daddy just wouldn't do.  So, I did what most Mommys would do, I put on a mask and held my baby...I also prayed I wouldn't get sick.  ;). I woke up looking like this...so tired.

We were exhausted from lack of sleep and dealing with the kids (who are still adjusting to us being home).  Thankfully, he slept better and so did we.

As for the kids, it's been a little over a week of us being a family again.  There have definitely been some trying moments.  The oldest has been experiencing some major stress due to everything.  I read this great article several months ago that helped us remember what we needed to do to help him process...we forgot, so we read it again last night.  

http://www.handinhandparenting.org/article/setting-limits-with-young-children/

The baby, has been dealing with separation anxiety.  Everyday he is getting better.  The cumulative 6 weeks away was hard on both of us.  I've had to prove to him everyday, that I'm not leaving for long periods of time...that I'm coming back at the end of the day. 

As for this week home, each day I feel little stronger.  Our first day back, when our boys came home, I pushed myself and did way too much.  Ended up getting sick from the stress of it all.  Lesson learned, I have to take it slow.

I am extremely grateful that I was able to get the transplant when I did.  My CIDP was "under control" with the IVIG I was receiving.  I had built back most of the muscle in my legs that I had lost from previous flares.  As the transplant was approaching, I could feel a flare coming on (probably due to the stress and all the traveling back and forth).  That meant that my body was telling me I needed the IVIG every 1-2 weeks instead of my usual 4.  This was not an option for me.  If you've followed my journey, you know that IVIG makes me extremely sick.  It takes me an entire week to recover.  So the transplant happened at the perfect time for me.

I lost almost all the muscle in my legs from being in bed at the hospital nearly the entire length of my stay.  Every day, I've tried to walk a little bit more than the day before.  

Last night, I walked on the beach!  I got to see my boys play in the water, I got to take photos of them like I used to, I got to cuddle with my baby on the beach.  And the best part?!  My legs hurt...in a good way!  Not in the "I can't take another step from the pain" way or the "my legs aren't going to work much longer" way.  They hurt in the I've used the muscles and they are sore kind of way...a feeling I haven't felt in a long, long time.  

We are enjoying the ocean, we are enjoying each other, we are uniting again into a new and improved family.

We're Going Home!!!

Today, I'm at a loss words.  I feel like jumping, screaming, crying, all because we are going home!  

This journey to healing has been hard.  It has tested me in so many ways.  Would I do it again to get rid of CIDP, in a heartbeat.  

This morning at the hotel, a fellow CIDPer & HSCTer, came up to Jesse and I and introduced himself.  He told us he'd been following the blog and when he recognized me this morning, he couldn't help but watch me walk.  The ease I had.  The confidence in the next step.  When CIDP is a part of your life, you never know if your next step is going to keep you up or send you tumbling to the floor...there is no trust in your legs, there is no trust in your body.  This gentlemen told us his story and how he starts mobilization tomorrow. :)  

HSCT & Dr. Burt are giving people their lives back.  We are getting second chances.  It is also bringing a community of complete strangers together in crazy ways.  We are able to encourage each other and help the next person be healed from this disease.

As we headed home, I was thinking of the team at NorthWestern.  They are constantly going.  The stream of patients is never ending as they heal us one at a time.  Thank you Dr. Burt.  Thank you team.  We are forever thankful.

Now I sit in the quiet and safety of my home.  I hear the birds chirping, the wind rustling the leaves, I feel the cool breeze on my head and I am thankful.  

And so continues my journey to healing...my journey to living again. :)

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! :)

Day +9

Last night was strange.  We've been in here for over 2 weeks.  During that time, the noise has been constant.  The pumps going all the time, beeping, vitals being taken every 4 hours, middle of the night blood draws, non stop questions...last night, it all stopped.  It was quiet in our room from 9:30 - 2:00. One final lab draw, then back to sleep we went.

Upon waking up this morning, I checked my "score card".  White Blood Cells = 4.2!!!!!

We are getting outta here!!!  We met with Dr. Burt and the team this morning.  Grinning from ear to ear, I got a photo with the team (minus Kaitlyn), that has given me my life back.

Once they left, we started packing and Jesse had begun the journey to get all of our stuff back to the hotel.

While he was doing that, I was having my PICC line removed.  

This thing has been in my body for the past 2 1/2 weeks.  All of my medicine came in that tiny little tube.  I'm still in shock.  Grateful and in shock. 

Now, I am laying on our king size bed at the hotel...realizing how good it feels to lay on something soft and comfortable.

I will always be thankful for my hospital room #1665...it is where we were given new life, new hope, a new lease at life.

Day +8

Painful is an understatement.  In the evening of Day +7, my bone pain reached new levels...my body felt like I was giving birth to a third child.

We tried to get the pain controlled with the norco.  It didn't even kind of help.  I asked for something stronger as I was sobbing and shaking from the pain.  Dilaudid was ordered for every 6 hours.  This worked great for the first 2 hours, but my pain was so severe. I was burning through the pain meds faster than they were prescribed.

Finally, around 1:30 AM, we broke through.  The Dr.'s increased the dilaudid to every 2 hours on top of of my norco every 6.  The pain was finally manageable again.  

Yesterday, that's all I did, pain meds, and laid as still as possible.  Any movement, sent the bone pain back up into unmanageable categories.  

One bad side effect of pain meds and I, I get extremely nauseous.  Yesterday, I ate nothing, threw up what I had eaten for dinner the night before.  Thankfully, by dinner time, I was able to get down some fries (potatoes, still my go to food when I feel like crap). :)

Mary has been my nurse most evenings. She's been wonderful and I'm so greatful for her.  She's helped me through the worst days here.

There was some amazing news yesterday! All that pain was paying off.  My immune system came back on line!!!!!  My white blood cell count went from .03 in the morning, to 1.9 by the afternoon!  

We would have gone to the hotel last night except I was still taking the IV pain meds and needed to be weaned off of them.  We stayed so I could do that and not be in fear of the horrible pain returning.

Day +7

Last night was pretty uneventful (considering the previous weeks).  My body is still adjusting and so I'm sweating like crazy...kind of gross, but it's keeping my temperature in check.

Today, I woke up and felt good.  Had a donut and some coffee.

Thank you Dunkin Donuts for being right in the hospital!

Around 10:00 AM, I started my first of two units of blood.  My hemoglobin was 8.1, when it goes below 8.0, blood is given.  So as they say, "we are giving it all she's got" (Star Trek reference for the fans).

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Kid Update:

For those of you on the fence about HSCT because you're concerned about how it will negatively impact your kids, this is for you.

I too was scared.  I too was afraid of what my long term absence would do to them.  I realize that not everyone has the same support going into this like I have.  My family has literally been amazing and I know that I am blessed.

Here is what I've learned.  Children are resilient.  If they know they are loved and cared for, their worries are small.  

I talked to my mom last night.  She told me that the day before, she saw our oldest, he's 4, sitting on the floor of his room (at their house) holding our photo.  She went in picked him up, sat with him and they talked.  He said, "I miss mommy." He continued that he really missed me and wanted me to come home.  She reminded him that she missed me too, and that it was just 7 more sleeps and then we would all be home again.  This was the first time he's expressed any feelings about missing me.  

A few things to note:

-he's 4, and is expressing his emotions!  That's huge!!!  He can name them and say how he's feeling (proud momma over here).  

-difficult times, circumstances or situations don't break kids, it makes them stronger.  They are able to process and handle hard situations as they grow because they've already learned that even though it's hard, it will eventually get better.

-if they know they are loved, no matter what they do or say to try press your buttons (and trust me, our oldest pushes), they are confident that what you say is true...they are loved.

As much as it breaks my heart that my absence is hurting his little heart, I'm also incredibly proud of him.  His emotional growth excites me!

Our 1 year old, he's also doing great.  We decided early on, that he was going to stay with my parents the entire time so that he could attach and bond with them like he does with us.  He has security and familiarity in knowing that my parents will be there everyday.  

I keep getting told how strong I am, but my kids are strong.  They are fighters too.  I'm not the only one who has beat CIDP, my entire family has!

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On with the day...

Kaitlyn went over discharge instructions with us this afternoon!  No, I'm not out of lockup yet, but she said it's either tomorrow or Friday!!!  SO EXCITED!!!!!

On the discharge paperwork, there is a section that says current medications.  It listed everything I've been on for IVIG.  The best part, next to IVIG, it said DISCONTINUE!!!  That's right!  

NO.

MORE.

IVIG!!!!!!!!!!!!!!!!!!!!!!

Soon after this wonderful news, my bone pain started.  For those who don't know what this feels like, there are few similar pains I can relate it to.  

Pain 1: back labor, like the baby is coming and you've been in labor for 12+ hours already.  

Pain 2: kidney punch or injury, if you've ever fallen on your kidney, bruised your kidney etc., imagine this and then imagine someone repeatedly punching you.

Pain 3: growing pains. If ever as a child you experienced growing pains, this is that feeling times 20.

This, this is my face on bone pain:

Any questions?

The nurse was called, more pain meds were given, heating packs were put on.

Despite the horribleness of this pain, this is amazing news!  It means my stem cells are in the engraftment phase.  They are moving back into my bone marrow.  Once this process starts, discharge is on the horizon!  

While we were waiting for the pain meds to work, Jesse rubbed my neck and said, "Rachelle, you birthed two babies!  I know it hurts, but you can handle this!"  He was right.  It hurts.  And I can handle it.  

Now we anticipate my blood draw tonight and what my numbers say in the morning!  Numbers are how I make a living...I've never been so excited for a set of numbers in all my life!