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.

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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.

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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.

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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.

Busy, Busy, Busy (Day +416)

Things are eventful here.  Life doesn't slow down and I've thankfully been able to keep up!

We've fixed our deck, helped my brother roof his house, taken the boys swimming...none of this would have been possible before my transplant.

Life is constantly moving.  

I still can't feel my toes.

I still have pins and needles on my feet.

I still have numbness that sometimes hurts.

Did HSCT work?  YES!

The goal of HSCT was to stop the progression of my CIDP.  Any improvement that patients experience after the transplant is considered a bonus.  

Thankfully, I have experienced a ton of improvements.  

-the constant electrifying feeling is gone.

-muscle weakness is gone.

-debilitating fatigue is gone.

-I no longer take any medications related to my CIDP or HSCT.

-intimacy has improved.  This was an area of life that I hadn't realized had changed from being sick from CIDP. 

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Thoughts:

We are in the throws of school prep here. Our oldest son, is going to kindergarten in a few weeks.  While most moms experience some feelings about their kids going to school, I've had some different emotions.  

-all that I missed out on in his life.  You see, I got CIDP soon after he was born.  When most new moms are dealing with curious crawlers and sleep deprivation, I was dealing with worries of why my legs weren't working, why I suddenly wasn't able to hold my son standing up, why my toes and feet were going numb.  The week before his 1st birthday, I had my first IVIG infusion in the hospital that lasted 5 days and made me soooo very sick.  His entire life has been mommy leaving, mommy throwing up, mommy not able to play.  I've missed so much and while I know sending him off to school is what he needs, I'm more than sad about all I missed.  And all at the same time, thankful for all the love my family and friends have shown him over the years.  When I couldn't be mom, he had grandparents, aunts, uncles and friends who cared and loved him.

With all of that, I'm trying to live presently.  Trying to be a better mom.  Trying to make new and fun memories with him that will show him that I'm well.

Here's to 2016-2017, a year of new experiences.

I'm ONE!!!!!

How can it be? An entire year since my life changed.  One year ago, the tingling and burning in my body stopped.  One year ago, one very painful chapter closed while a new chapter opened.  One year ago, we watched the fireworks over the lake and felt hope again for the first time in years.  One year ago, began the emotional healing from years of slowly dying.  

My husband and I were talking the other night about how hard life was.  How he's finally in a healthy place emotionally and spiritually.  I told him how hard it was for me to watch him turn off and fade away.  It was what he needed to do in order to handle the way our life was.  He then told me how unbearable it was to watch me slowly dying.  Slowly dying, it really was that.  I was approaching the end of my rope.  I don't know how much longer I could have gone on with the treatment and schedule we had, how long I could have kept working, how long before we would have had to move in with my parents for help.  At the end of that conversation, we both had tears in our eyes.

This year has been one of healing.  My body had to endure a hard reboot in order to stop the CIDP.  I've lived this last year in as much isolation as I could to reduce my exposure to any major illness.  Thankfully, my new found appreciation for being OCD, has kept me well all year; no hospital stays, no emergencies!  Only a few colds that knocked me out for a few days.

I've started to feel things again, in more ways than one.  I hadn't realized how much I had gone into an emotional protective mode in order to survive it all.  I only felt what I had to and everything else, I managed.  

My ability to physically feel, specifically in my hands and feet is getting better and better!  My fingers are only slightly numb. I expect them to get back to normal in the next few years.  My feet and toes have more sensation than before.  My toes are still numb but nothing like they used to.  I remember in the hospital feeling like I had just taken off 5 pairs of socks.  It was an amazing feeling.  My muscles are working great and I'm able to walk and run and bike and play like I did before CIDP became an acronym we knew by heart.

If I had to sum up this year, it's been one amazing feeling after the other.  This journey to healing has been hard, so hard, but its also been amazing.  I now have the opportunity to share my story, my life, with countless people all the time.  I get to share about the loss of life and the desperation we had on finding a cure.  I get to watch these same people process the possibility of not having to be on medications (that have tons of side effects) for the rest of their lives.  

I am so thankful that I get a second chance at an almost normal life.  I am so thankful that my boys won't always have memories of mommy being sick all the time and not being able to play.  I am so thankful that my husband no longer has to stand by and watch me slowly fade away.  I am so thankful that we are able to heal from these 5 years of struggle and pain.

We received a ton of support and love from our family and friends.  This has been a year that I can look back as the one in which my community came together to help me live again.  You guys ROCK!!!!

Despite the healing, there are some wounds that will always remain, wounds from people that we once called friends.  I can understand why they left.  I can see how they could have thought everything was fine, because from the outside, we looked completely fine.  These friends didn't understand or maybe care to understand what was happening in our little world.  I think they missed out.  They missed out on witnessing a miracle up close.  Seeing door after door open was amazing, and we kept walking through.  We kept trusting that this was what we were supposed to do, and God kept providing.  These former friends, wounded us greatly.  At a time when we needed the most support, they chose to push us away.  Sadly, many people take this route, leaving because they don't know how to help when the situation is so bleak.  The best thing you can do is simply show up.  Bring dinner, play with their kids, even to sit and read a book in the same room may be just what your friend needs.  I emplore you, do not leave your friend when it gets hard, sit with them between the rock and the hard place and pray together for relief.

What's next?  I don't know.  Who knows what this next year will hold.   Maybe we will get back to singing again.  Maybe we won't.  But it's amazing knowing that it's at least an option.

To a new life, as we continue on our journey to healing.

One Year Followup

I can remember this time last year so vividly: packing myself for transplant, packing the boys for the 4 weeks they'd be away, saying goodbye to them, crying big heavy tears, the fear and strength all rolled into one.  It felt like the next year post transplant would never come, and yet, here we are.

Wednesday morning, we flew out of BWI to head to Chicago for my one year follow up!

We had lots of time to be quiet together (which is hard to come by with two little boys).

We got to the Worcester House around 3 PM.  I had never stayed there so I wasn't sure what to expect.  The rooms were comfortable.  They provide all linens for the bed and bath as well as complimentary shampoo and hand soap.  The kitchen has all appliances but no dishes or cookware.  We brought some plastic bowls from home and some plastic cutlery.  This let us get some basic essentials (cereal, milk...) so we didn't have to eat out all the time.  If you're staying for longer than a few nights, it would be helpful to have: a pot, a pan, spatula, dish soap, aluminum foil, etc.

Wednesday night, we were able to meet up with other HSCTers.  Some were vets, some were going through pretesting & mobilization and others were there for their initial evaluation.  It was great to be able to share stories and experiences to help squelch fears of unknowns.

I was able to meet Wendy & Eddie Nash. Wendy had HSCT 4 years ago and is doing great!  Her husband, Eddie, is the one who gave me the final nudge I needed to apply and investigate this further.  I'm forever thankful for them and the simple way they helped change my life.

Pictured is me, Wendy (4 years), Megan had just had her mobilization chemo and was handling it great!  

There was a large group of us CIDPers (which is odd because the disease is so rare).  The neurologist that we see is only there 2 days/month so we all get scheduled around the same time.  

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Thursday started with us going shopping at the Lego store for our boys.  We had tons of fun.  

I was scheduled to see Dr. Burt at 12:30...we didn't see him until almost 2:00.  We are used to the waiting after all the years of appointments so we made the best of it by reading and taking goofy pictures.

Finally, we get called back.  Paula comes out and takes us to our room.  They must have been short on space because this room was the size of a closet.  So funny. We sit, we chat, we exchange paperwork.  Dr. Burt comes in a few minutes later.  We talk about this past year, no CIDP medications have been taken since before transplant, I can stop taking the antiviral medicine.  I'm off ALL medications!!!  No steroids, no IVIG, no Benadryl, no Tylenol, no anti viral, no anti fungal...the list goes on and on.  And I don't have to TAKE THEM!!!  Yahoo!!!

We talked a bit about vaccines and getting my titers checked and which vaccines I should avoid.  Side note: no matter what your stance on vaccines, please be careful with the flu shot.  It has been, HAS BEEN, proven to cause GBS in recipients.  GBS stands for Guillain-Barre Syndrome and is the acute form of CIDP.  I don't wish this disease on anyone so if you can prevent it, do.  Don't take the risk unless absolutely necessary.

Ok, back to the appointment, he listened to my heart and lungs, had me stand up, walk toe to heal across the "closet" sized room.  He said I looked great!  Quarters were so cramped, I didn't get a picture this time.  No worries.  I'll be back in a year for my 2 year checkup.

After the appointment, we went upstairs for my blood draw.  Nothing spectacular here.  They took about 10 vials, bandaged me up and sent me on my way.

Now, we had the afternoon and evening to do what we wished.  Out of all the times I've been to Chicago over the past year, I've never been well enough to see any of the sites.  So, we headed to the bean!  

Next we walked and walked and walked and walked and walked!  We walked over  4 miles!!!

At the end of the day, we went to one of our favorite eats, DOC B's (I'll have to let Dr. Burt know they named a restaurant after him, hahaha).  

I ordered ribs, I wasn't expecting that much!  Thankfully, Jesse ordered a salad so we shared.  A perfect meal.

Before we left, I noticed this piece of art that I couldn't pass up.

"What lies ahead of you and what lies behind you is nothing compared to what lies within you."  A truth that all those going into the transplant should remember.

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Friday started extremely early.  I had to be at the hospital for my EMG/NCV tests at 7:00.  I was up by 5:45 so I could get ready, finish packing, and have enough time to walk over.  

Breakfast on the go at 6:15.  I'm not a morning person.

I made my way to the 18th floor for my testing.  The kind man Vinny was there waiting to take me back to the room to begin my NCV.  You must know, Vinny is excellent at administering this test.  He's fast, he's efficient and he's a great communicator.  If you have to ever get this painful test, he's the guy for you.  He was happy with the way my nerves were reacting, good velocities.  

This is the setup of the computer and equipment for the tests.

This is a close up the tool used to test the nerve velocity.  The two electrodes send a shock into the nerve, the computer reads the time it took to go from point a to point b, then thy measure the length of the nerve they just tested with a tape measure.  Physics for you distance / time = velocity.

Dr. Allen came in and finished the remaining part of the tests.  The EMG is not pleasant.  Imagine a acupuncture needle.  Now imagine an electric current going through that needle in your leg muscle.  Not fun.  I then have to make my muscle flex with the needle in my muscle.  Not pleasant.  All the tests finished and I don't see Dr. Allen until 11:30.  Free time!

I grab an iced coffee and a donut from the amazing Dunkin Donuts in the hospital (during transplant, this was my morning ritual) and I have some time to relax.  Jesse checked us out and packed up the rest of our stuff and brought it over to the hospital.

I then had the privelage of going up to the 16th floor and meeting a friend from the FaceBook page for HSCT.  The "Burt Pages" are great and provide so much support.  I'm so thankful for technology.  We had a good visit. :)

Then it was time to head up to floor 20 and see Dr. Allen.  We went over paperwork, I answered the usual laundry list of questions about pain, medications, fatigue, depression...etc.  He told me that me tests were nearly identical to the ones from last time!  Which means I am officially in remission!!!  The CIDP has been stopped!  I asked him about what I should expect this year.  He told me much of the same, getting more strength, balance, muscle mass...etc.  He told me I was doing great and to call if I ever have a concern.  

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Then we began our journey home!  There's always a lot of hurry up and wait.  Getting to the airport was just that.

The plane ride was beautiful and I took this picture to show our son how close to the clouds we were (he often says that he wants to touch the clouds).

And just like that, our one year follow up trip was done.

IVIG-Versary!!! (1 YEAR)

Today, I celebrated an entire year from my last IVIG infusion!  For those of you with CIDP, you know what a huge deal that is.  

One year of not being stuck with needles for days.

One year of no Benadryl comas.

One year of no aseptic meningitis, migraines, vomiting, diarrhea, etc.

Today, I celebrated with the boys by playing soccer with them outside!  We ran, we kicked the ball, we walked around the neighborhood.  A year ago, I could barely walk let alone kick a ball.  

Continuously thankful for Dr. Burt and HSCT and what its given me, LIFE!!!

11 Months!!!!!!!!!!! (Day +336)

11 months snuck up on me.  I looked at the calendar and was shocked that I missed my monthly birthday!

April & May have been busy.  We've put our house up for sale (still waiting for an offer) which involved a ton of work.  I think I said last month in my post but I'll say it again, when you are only able to survive day to day, things get pushed aside.  Our house sure did.  It feels so good to be able to see it how we always wanted it to be.

I've been able to go on walks with the boys, play at the park, keep up with house work, do my job, grocery shop and more!  

My body is still healing but I've never felt better.  How I feel now, was only a dream a year ago.  This is what we all hoped for and dreamed could be a reality.

We are finally making progress with our oldest son.  He really struggled with me being ill and him being cared for by everyone else.  

He still has his bad days and moments but it's getting better and better the more he sees that mommy is getting better and better.

Next week is a big week for me.  It will have been one year (ONE YEAR) since my last IVIG treatment!  I never thought IVIG would no longer be in my life.  I thought that life was going to be that way forever.  I thought that the "red weeks" were going to be a part of my families life forever.  I thought that life was going to be that horrible cycle of sickness.  

I still can't believe it!  This is like winning the multi-billion dollar lottery of life!  

The weight/gravity of these past years have started to creep up on me emotionally.  When you're chronically ill and facing uncertainty, parts of you turn off in order to survive.  I turned off, so did my husband.  We are figuring out again what healthy looks like for us, for our family.  

Symptoms I'm still dealing with?

-numbness in my toes

-muscle strength (I try to do more than my body is ready to do).

-insomnia (my brain won't shut off at night, I keep thinking about what needs done, what still to do, what could happen...).

Besides that, not much else to report.  I haven't seen a Dr. since a cold I had over the Winter!  Want to know if HSCT works?  Look at my insurance history for the past year, you'll see IVIG, HSCT, PT, then nothing!  Absolutely nothing.  It's amazing.

I'm headed to Chicago for my one year Followup, June 1-3.  I expect that I will be done taking my last medication, I expect them to say I'm still in remission, I expect Dr. Burt & Dr. Allen to say I'm doing great!

Yahoo!!!

10 Months (Day +306)

Time is flying by now.  At the beginning, it felt like a year would never get here.  Now, it's around the corner.

We've been discovering, exploring, being outside as much as we can.  It's a very different change of pace from what we've been used to.

We've been fixing up our house to sell.  I've been able to help and do lots...things I never would have had energy for before HSCT.  Replacing blinds, air vent registers, door knobs, light fixtures, mudding, sanding, painting, moving and lifting boxes and furniture.

We are getting excited about our next home and look forward to this part being done.  It has taken a lot time to fix our house that had been neglected for 5 years.  When I got sick with CIDP, we had a new baby and we didn't know what was wrong with me.  Our life went from joyful moments, to those of fear and dread and in turn, we neglected our home.  We piled boxes in the basement instead of going through them because we didn't have the energy to deal with them.  Simple repairs weren't ever simple and often involved more time than we (my husband) had to give.  I had no extra energy to spare towards anything but living.

As I look back on my CIDP life, I realize just how bad I felt, how much pain I was constantly in, how little sleep I got because of the pain, how miserable life had become on my IVIG.  I think that in order to survive it, I blocked out a lot of it.  It seems that every treatment reality would come barreling in.  When the vomiting and migraines began, my thought life wasn't healthy.  The darkness always crept in...those were the moments/days when I wanted to give up and stop fighting.

For me, HSCT, saved my life in more ways than one.  I don't know how long my CIDP will be in remission.  But I do know, I don't take any day for granted.  Every step I take now, I know that it is a gift.  I was so close to losing my ability to walk...I still can't believe it some days.

So, happy 10 months to me!  :)