what's next?

A month ago today, I was exiting Prentice Women's hospital with my MS turned off and a new immune system taking charge.  It really does seem like my transplant was ages ago, but when I look in the mirror and view my bald head or feel like a senior citizen with my pill organizer...I'm reminded that it wasn't so long ago.

We think I look like the Lorax in this picture...I have to agree!  Thank you Lemmon Family!

 I can't begin to tell you the number of times I've been at my computer and had every intention to post an update, but I got busy with kids (our lab just turned 1), cleaning, laundry, more cirque du soleil tryouts, participating in the world cup, invading a small neighboring country and imposing my will upon them...you get the idea!

Some of you have asked how I'm doing?  What's next?  How do you know if your transplant was successful?  How was the transplant/chemo, REALLY???  What precautions do I still need to take?  I know you've all been waiting with baited breath for my update (note the sarcasm), so I will kindly oblige.

Let's see...I'm doing great...the end.  No, really, I'm feeling extremely well.  I would say shortly after my transplant I felt like 95% of my MS symptoms/disabilities were gone (ringing in my ears, leg weakness/spasticity, debilitating fatigue, headaches, mental fog, just to name a few).  Craig might object to the mental fog subsiding, but I'm 40, blonde, and I've got some lesions in my brain!  For me the increased energy level alone, post transplant, would be worth doing it all over again!  I think my kids are a little shell shocked and frankly somewhat annoyed at my new energy because some of it has involved deep cleaning/organizing several rooms in the house...exactly what every 11 and 8 year old envisioned for their summer activities!  I have a new fatigue at the end of the day, but it's from a well lived and productive day.  I feel so blessed to be able to participate in my kids activities instead of viewing them while supine on the couch or only hearing about them because I didn't have the energy to go.

I made it home for the big dance recital make-up application!

I still experience some numbness and tingling to my left hand and the vision in my right eye is still not what it was prior to MS, but I would say it's better.  Now, when I exercise my vision remains the same, instead of complete blurriness to my right eye, and my left hand tingles instead of completely going numb.  My legs have normal muscle fatigue, but I don't experience muscle spasticity or heaviness at the end of my workout.  Dr. Burt and Amy say that most MS patients see the greatest improvement/decrease in disability score (EDSS) by two years...so I have a long way to go.  I might not ever completely regain my vision or be free of the numbness/tingling in my left hand, due to lesion scaring on my c-spine, but I can live with that.  I'm extremely fortunate my MS was diagnosed early, and I was made aware of HSCT at that moment! A big thank you to Dr. Pfefer!  Yes, I had some "hard" days during the transplant, but I think every MS patient who has gone through HSCT, to stop their MS, would do it all again in a heartbeat!

So the plan for me, post transplant, involves medications, blood work and MRI's.   I'm on a three month course of Diflucan and Bactrim.  These medications help prevent any nasty fungal or bacterial infections, mainly PCP pneumonia.  I will be on a 1 year course of Acyclovir.  This is an anti-viral that helps protect against shingles.  Since my discharge, I've had weekly lab draws to check my blood chemistries.  These have been every week for the last month, every other week for the next 8 weeks, and then monthly for three months.  Makes me sorta miss my PICC line...kinda...not really.  I still need to avoid buffets, sushi, restaurant fruit and veggies, public swimming pools, lakes, rivers, oceans, sick people, denim golf jeans, voldemort...yes, I said voldemort! (Just wanted to see if you were paying attention).  I will require a yearly MRI and follow up with Dr. Burt.  Hopefully my MRI's will be free of any new lesions and I will not experience any new symptoms or relapses.

A week ago we celebrated this great nation's independence.  It was significant for me in many ways.  I reflected on the many freedoms I have and enjoy as an American citizen, and the fact that I was alive to celebrate them.  I also reflected on the freedom that I have gained by stopping my MS.
1.  I'm free of sharps containers! No more painful injections of disease modifying drugs that make you feel "crappy", suppress your immune system, and at best have only a 30% success rate.
2. I'm free of costly, neurology appointments that only offer "new and better drugs" on the horizon.
3. I'm free of thinking and planning (for the last year) how I was going to get HSCT done to stop my MS
4. I'm free to think about the benefits and possibilities that now involve a life with my MS turned off.
5.  I'm free to be the engaged mom and wife I want to be.

These babies are headed for the local pharmacy/medical waste...never to return!

I know I've said it before, but I'm thankful for all the beauty today will hold...and all the great, big beautiful tomorrow's I have yet to experience!

~Veronica