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.