Jesse & Rachelle Johnson: 6 Month Checkup!

Can you all believe it?! It's been 6 months since my transplant!

(Jesse being contemplative).

Wednesday we flew to Chicago from Baltimore. It was a good travel day. Nothing eventful, just lots of walking (which I handled just fine).

When we got to our hotel, we unpacked a little and decided to go to one of our favorite restaurants called The Local. It's a little strange to be somewhere so far away from home and it feel familiar, know your way around.

After dinner, we came back and addressed our Christmas cards. I know you might be thinking, why would you do that in your down time? If you have or have had children, then you know that trying to address Christmas cards, is a very lengthy process and little ones like to "help".

Didn't sleep well...to antsy about appointments.

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Thursday:

We ran into some HSCT folks in the lobby of the hotel at breakfast. (I just ordered my #HSCT shirt). A funny thing about sharing life on FaceBook, people recognize you. ;)

Cathy Groesbeck who is here for mobilization and harvest. We chatted for a bit. :)

Then I saw Michele Richey! Michele shared some of her head coverings with me after she went through transplant 6 months before me. I completely blanked on who she was when I saw her (I blame chemo fog). ;)

Thursday was my EMG & NCV tests. If you are unfamiliar with what these tests are, they are to test the nerves and muscles reaction to electric impulses. In the past, they have always hurt, they have always shown slowing and nerve blocks. Today, they really hurt and showed NO NERVE BLOCKS AND LESS SLOWING!!!

After this, we went upstairs to meet with Dr. Burt. When we got there, we immediately saw my CIDP transplant birthday buddy, Jim Crone. He's doing great too and hasn't had any CIDP Meds either!

Next was the main event, Dr. Burt! He and Paula came in. Paula tested the strength in my hands and I was able to squeeze over 75 lbs! My previous results were in the teens and twenties. An incredible and definite improvement.

Dr. Burt asked me how I was, what has changed, if I've been hospitalized since transplant and what medications I'm still taking. At the end of it all, he asked me to walk (heal to toe). Guys, I did this with ease, I did this without thinking about it, I did this when 7 months ago I would have fallen over.

He told me I could come off two of my post transplant medications! I will still be taking acyclovir (prevents shingles) until one year post transplant, vitamin D (I'm chronically low), and alpha lupoic acid (helps with nerve regeneration pain).

After everything, he says, "So it worked?"

"It sure did." I say.

"Now, go tell people about how it worked! Get more people here." He tells me.

"Will do! Gladly!"

I'm forever thankful (just like my shirt says) that this worked for me. That my life is no longer dictated by my treatment schedule.

After my tests and appointments, I was able to meet up with a few Transplant friends. First on the list, David Vilfranc in the blood draw center. He's here for mobilization & harvest.

We shared stories, I answered transplant questions and we encouraged each other. You've got this David!

Next up were some friends at Prentice, on 16 going through transplant, Kelly Erickson & Jen Davis. It was a little surreal being there, on my floor, walking about with ease when before I could barely move. I suited up in gloves, apron and a mask to ensure I brought nothing germy into them. It was a sweet time. We shared stories and I was able to encourage them that they are almost done (even though it doesn't feel like it).

Jen and I started seeking HSCT at the same time last year. My insurance approved right away. She had a fight and had to change insurances. But she's here now and kicking her MS to the curb.

So thankful for these sisters.

I also got to see a few nurses who took care of me (amazingly, they remembered me). I was able to thank them for the care they showed me when I was so sick during transplant.

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Friday, I met with Dr. Allen (neurologist) to go over the results from yesterday and compare them to last years and Aprils tests. He also tested my strength. My hand strength was 76 lbs in my left hand and 77 lbs in my right! According to my Physical Therapist at home, I'm at 85-90% strength! That's something I never thought I'd hear. He checked my reflexes (something that I haven't had in over 4 years). They were all reactive! At the end of it all he said, "It looks like your CIDP is in remission." WHAT?!?! Remission?!?? Words I never thought I'd hear.