Saturday, January 28, 2012

Happy 3rd Birthday to Me! A Transplant Recovery 3-Year Review

It's been three years since I received the life-giving stem cells from an umbilical cord of an Australian boy who would now be 13 years old, same age as my oldest son, and yet they'll never know this incredible story! The three years since the transplant have gone by so fast...oh yeah, I can say that NOW, but of course you remember how I moaned that first year! How slow learning to walk again felt at the time, but the progress was leaps and bounds looking at it from outside!

We celebrated last night at Hollister Brewing Company in Goleta.  Just mentioned to the waitress, Kelly C., that it was a special night when I asked her to mark the occasion with a photo of our family (without Adam who is at Jr. High Winter Camp at Hume Lake this weekend).  She surprised me much later in the evening when we ordered an old favorite dessert of mine which I haven't ordered in years, splurging since I felt a little deserving of it after all I've been through, and she came out with it like this with a candle and told me that it was on the house, courtesy of Hollister Brewing Co.!  That was our first time there and after the great service, the waitress making me cry and the super duper hamburger and creative beer on tap.  What, you ask, is creative beer?  Well, let me share!  I had a 10-oz Admiral Browning - listen to this description: "finished with Verve coffee from our friends at The French Press and Ecuadorian cocoa nibs...chocolatey notes and rich, fruity, jam-like overtones..." yeah, it was creative and exactly as described!  Ok, got sidetracked in remembering our great evening.  Now back to the real post...

Since the Santa Barbara International Film Festival is in town this week, and I've always longed to go, but never have, I thought I'd share the following 3-year-mark update in "awardesque" language.  Hope you enjoy it!  Be sure to comment and say hello at the end of this post to let me know you still read these things and do you like Hollister Brewing Company as much as I do after my first visit?!

Mike, me (with bronchitis!) and T-Man (A-Man was on a jr. high retreat at Hume Lake)
First Year Post-Transplant - 2009 - Winner of "Most Difficult Year" in the Physical Category
First day home after 3 months! The boys were 10 and 7!
Having lost so much of myself through the process--my hair, voice, tastes, nerve sensations, skin elascticity and moisture, my glands (including, but not limited to saliva, pituitary, and adrenals), some liver and kidney function, and my muscle which inhibited my ability to talk, walk, run or jump. Most of my functions and hair and even glands and abilities have returned. I am still weak in muscle because so much of it was lost and the recovery has been very difficult to return to exercise having lost that muscle, plus gaining weight from the meds and lack of normalcy has meant a loss of just my old self. My kidney and liver haven't returned 100%, but they are at good levels with no major long term damage. I still can't run or jump, but I seem to be always improving a little bit more each year. To know that I was practically paralyzed when I left UCLA in March of 2009 and now anyone who doesn't know wouldn't know unless I told them is amazing to me and nothing short of a miracle. I have had to re-learn so much and accept a new normal and I keep learning and accepting all the time.

Second Year Post-Transplant - 2010 - Winner of "Most Difficult Year" in the Emotional Category
"I look good from the outside when people see me..."
This year marked more grieving as the long-term aspect of recovery became a reality. I realized there was going to be a chronic nature to my suffering that I wasn't quite ready to accept. I still believed I could run soon. If only I could try harder. I now had to keep grieving the losses and embrace the new normal like never before. Even more difficult as support of friends and family dropped off, which is understandable as people get on with their lives and see that I too am getting on with mine. I look good from the outside when people see me because I only venture out when feeling good. When not seen though, there's usually a reason and it's a quiet suffering one goes through. Asking for help at this point is next to impossible since it's not so obvious why I would need help being over a year since the transplant. I grieve my body, my abilities, my old dreams, loss of friendships or what felt like closeness of friends, and even the spiritual intimacy I had with God as I clung to Him during that year of crisis, but let go a little when things improved some and death was not imminent (or apparent because we never know when we'll be called Home). However, with great difficulty comes great reward and I've seen God bless me so much with new dreams, new purpose, a new body (not my favorite version, but I'm alive), new opportunities, and even some new acquaintances and friendships to add to my old ones which are not forgotten thanks to Facebook!

Year Three - 2011 - Winner of "The Most Difficult Year" in Mixed Bag Category

Acupuncture at NIH in Bethesda
The first half of 2011 was immensely challenging with my health being very poor and living with the constant mystery of it all. I didnt' realize then that much of my fatigue, pain and stomach problems were related to adrenal insufficiency. That adrenal problem was still landing me at the ER once a month when it turned adrenal crisis, yet I still didn't know it was adrenals! They fixed me up with fluids, anti-nausea, anti-pain, and steroids shots and I was as good as new to leave a few hours later. I called the ER my pit crew, nothing to fear. I suffered greatly with the stomach issues though and wanted to get to the bottom of it. So in May I went to the National Health Institute (NIH) to join a study on Graft-vs-Host Disease (GVHD) to find out what symptoms were from GVHD and what weren't! Come to find out much of my problem was medicine-related and I only had GVHD limited to my skin organ and my mouth. At that point I still didn't know what caused my stomach issues. By the time NIH was done with me, they'd reasoned that they did as much to me as one can take with tests 8 hours a day 5 days in a row. I was cut, poked, photographed n*u*d*e (I never mentioned that!), cut some more, poked again, and again and again, MRI'd, hooked up to machine after machine, and yet, they never got to my stomach! So as soon as I returned to Santa Barbara I saw a GI doctor who looked at me inside from both directions and concluded it was NOT GVHD of the stomach. Finally. I had ruled out everything except Adrenal Insufficiency and that was it. Immediately off Predinisone which was a real source of problems too from moon face to breaking both ankles and now taking a little bit of Hydrocortisone...I felt like a new person! That was June.

The second half of 2011 was markedly better with more energy and determination than ever. This relief made way for new dreams which include:
  • full restoration of my health (not there yet!)
  • to get off all meds
  • to lose the post-transplant weight (I've lost 15 pounds in 12 weeks and continue to go)
  • to begin exercising more (have since Xmas, but taken a break to recover from a tough case of bronchitis)
  • continue my ministry of hope and encouragement (I shared my testimony at Believing Woman and have been asked to speak for about a half hour at a MOPS--Mothers of Preschoolers--meeting in April!)
  • put together a book of this journey, maybe an inspirational devotional for those who suffer - if you have ever published a book and can mentor me as a ministry opportunity, contact me!
  • have more adventures with the boys
  • help others find joy in their home school experience through my consulting services, my blog and future ebooks (Since the transplant, I was certified as a LearningSuccess™   coach in order to transform the lives of children and young adults with the principles that have helped me so much!)
  • simplify - get rid of excess and create more room and time for others
  • oh, and incidentally, go to SB Film Festival...maybe this is my year! Just threw this one in for fun since technically it is something I've always wanted to do and it ties into my 'theme' well.
Thanksgiving Day 2011 -- Praise God!  We are so thankful!!!
Feeling so much better from July through December allowed me to take on many more activities and adventures and found myself getting more infections as a result.  As I write this I still have bronchitis and have been pretty sick all week...sick since Dec. 25 actually which is over a month ago!  I have to continue to keep learning how to balance the new me and the remnants of the transition me that is still immune-suppressed.  I have to remind myself not to get complacent about hand-washing (I stopped asking people to wash their hands when they come over, but I'm re-instituting that policy!)  I have to keep learning how to balance the no-energy me with the energetic me and the desire to live a calm and relaxed life with my desire for adventure, social activity and service to others in ministry and in business !  I know there is a better balance.  Seeking the Lord first will only help me to find tune my compass and live with God alone as my True North.  I like how God says it in Isaiah 48:17 --

I am the LORD your God, 
   who teaches you what is best for you, 
   who directs you in the way you should go.  

Say hello and let me know if you still read my posts...and do you like Hollister Brewing Company?...and do you want to help me publish my journey into a devotional or other book?!!  Please engage in the comments section - I'd LOVE to hear from you!

UPDATED to add this video...visit to find out more on how to donate your baby's cord blood if you are pregnant or will be.  The same website is your source for information for becoming an adult stem-cell (bone marrow) donor for someone waiting for a life-saving match! Here's the video, "Give Birth to Hope" that explains the importance and miracle of cord-blood donation all so well: