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 again...like 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 www.bethematch.org 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: 

25 comments:

Lisa Goode said...

Thank you sharing your truly inspiring story!!

Wendy said...

Wow, just ...wow. Thank-you for being brave enough to share this. I know some people that have gone through cancer don't like to share. If You hadn't said/written something I wouldn't have ever guessed.

Aadel said...

That is an amazing story! I am thankful that you have had such an amazing recovery. You have been a blessing to me in the CU group.

Patrice London said...

You my dear are absolutely beautiful! Thank you so much for sharing your story. I praise God for a full recovery for you!

Dr. Lisa @ Naked Moxie said...

You are truly amazing in beauty and spirit. Your journey is a song to be sung for many... keep on singing!

Krista or Mike said...

Thank you so much to my new friends that I spoke of in my post! :)

Anonymous said...

Maybe you guys could set up a sink right by the front door for hand washing and then hand sanitizer!

Will you always be imuno-supressed, or will that be another victory in the future?

Thanks for keeping us updated!

No, I am not subscribed to any blogs, so it works out great that you sent the link for this milestone.

Happy 3rd birthday!

- Becky H

Johnlyn ~ Frugality and Homemaking said...

Wow! Just WOW!!! You have been on an amazing journey. The world can learn so much from you!

Thanks for sharing your story Krista.

I would love to try that brew!

Krista English said...

Thanks, Johnlyn! If you ever come to Santa Barbara we can go have one together!

melanie said...

Wow, Krista! That's so interesting to hear your story as someone who has just met you and would have had no idea if I hadn't heard your testimony. God is so good and thanks for letting Him be good through you. Looking forward to getting to know you more! And if you ever want to talk nutrient-dense eating to build up the immune system - let me know.

Krista English said...

@Becky H. Just sending folks to wash their hands is enough for me...way to small a doorway for any washbasin! And I'll only be immune-suppressed as long as I am on the medications which I'm slowly working on and hope to be able to get off of them all eventually! Thanks for your comments.

Krista English said...

@Melanie - Thanks Melanie. I am thankful God keeps putting amazing new people into my path as well. Nutrient-dense eating is my plan starting with a 7-day raw food cleanse tomorrow morning which consists of some kind of drink for bkfst and lunch, a raw food dinner and some fruit in the a.m. if I get hungry and some raw veggies in the afternoon if I get hungry. On day 7 the dinner is steamed fish. Thanks for your sweet comment!

Allison Gobbell said...

Krista, juicing is awesome and boosts your immune system and keeps the energy up and the cravings down. I highly recommend it! I'll never forget how heavy you were on my heart when you were unconscious for so long. God answers prayers!!!!!!! I was nursing Abigail during the night so you got prayer in the middle of the night. :) I am sure most all of the homesteaders were praying, among others. We are so glad you are doing sooooooo much better, but understand things can still be tough. Who said, "Most men live quiet lives of desperation"? Thank the Lord for salvation, peace and his Holy Spirit, not to mention family and friends, so that although we have tribulation we can be of good cheer. :)

Anonymous said...

I just wanted to tell you that your unrelenting,passionate, and tenacious faith and hope in Jesus is such a powerful message of encouragement and inspiration for all of those who suffer through any trial or dire circumstance. I admire your determination to live your life to the absolute fullest. I also admire your desire to minister help to those who struggle with any learning issues. Thank you so much for sharing your journey. recognizing God's faithfulness, and maintaining your compelling commitment to live life hanging on to Him and His Word while depending upon His strength and grace to carry you through. I praise God for you! By the way, you look GREAT!

Krista English said...

Thank you, Alison! I have a juicer and just need to be able to get more fresh organic food for it - it's amazing how much food it takes to get juice so I'd gotten away from it. And thanks for all your prayers (and taking the time to post your comment!)

Krista English said...

Thank you for commenting, Anon! ;) That was very sweet of you too...I appreciate your comments!

p3anut said...
This comment has been removed by the author.
p3anut said...

Krista,

Admittedly I am reluctant to read your posts because I know it will be no small little note. However, like many things in life I am compelled to avoid, it is worth the time and attention. Anything that draws me out of my own little selfish shell and into someone else's world is a step in the right direction. Maybe now when I meet new people, here in West Virginia where I am on a job for a month or two, or wherever I venture afterward, I can see those new people as not just meaningless strangers, but as those who, like you, have seen and experienced so much. And even if they haven't they may one day....
It is unbelievable to see how beautiful you look now! I am sorry for doubting your recovery and I know it's not over.....you truly are an example of God's healing power (Gag, I hate those christian saying, but it fits!) and a conviction to me that there is more out there than my little pessimist attitude sees!
If I'm ever out on that West Coast again (sorry I missed you on my little bike trip) I hope to visit you and your family.

Adam Grieco

ps- send me your addres and I will mail you a dvd I made of my bicycle trip!

Krista said...

Aw, Adam, you! I always love your comments because you keep it so real! Thanks for taking the time to comment and...well, thanks for everything you said right there, and for the coming DVD! Can't wait to see your amazing trip! Take care!

Krista said...
This comment has been removed by a blog administrator.
Anonymous said...

Totally amazing! Yes, our God is totally amazing, you are totally amazing, Mike is totally amazing, your whole family is totally amazing. You are a fabulous writer, quite gifted obviously. You may just have convinced me to try the Hollister Brewing company as well... wow what an amazing journey!
xoxoxoxoxo
in Christ,
Phil

Krista said...

Thanks, so much Phil! Really appreciate it coming from the one who took so much time donating platelets for me! You rock!

Anonymous said...

What a journey . . . and you are still walking the path. Take it step by step. Jehovah Rapha - The Lord that Heals.

Mia

Diane said...

Oh, Krista, how I relate to your story! I was diagnosed with breast cancer, went through lumpectomy, chemo, and then radiation. Shortly thereafter, I told the docs I felt tired. "We've checked your thyroid and you're fine--Take a nap!" they said. "When I take a nap, I wake up feeling worse than when I laid down". Nothing was done. Fast forward to nine months later--I was 6 weeks pregnant, with a continued low-grade fever--thought I needed fluids, so went to the ER room. They drew one vial of blood and knew something bad was happening. "Cancer is back", they said. "No, cancer was last year and baby is this year" I responded. I began chemo for AML (acute myelogenous leukemia) and went into a coma. My husband said I frowned when comatose and he told me that I had lost the baby.
I finally woke up and had to learn to walk again and to write my name.
About six months later they found ONE match out of 4.8 million people! Praise the Lord Jesus Christ! I went into the hospital and came out 32 days later. As I was recovering, I asked my husband about adoption. We got a 7 month old girl from Vietnam! I flew over, and she was 11 pounds! Then, in the Spring of 2008, I found out I had bronchiolitis obliterans. I had trouble carrying my baby in Vietnam--thought it was asthma! I've been in the hospital for coughing up blood for a week, and my daughter is now five,but it is difficult for her to understand why Mama is so sick sometimes. We live a truly blessed life, and I feel fortunate to ha around to have raised her this long!
Thanks for sharing your amazing story. It is helpful to read someone else's story,....gives you perspective!
Thank you!
Because of Jesus,
Diane

Krista or Mike said...

Diane,
Thanks for posting your story...I'm blown away by it on many levels :) Yes, praise Jesus for holding you through that and creating many miracles for you. So glad you know Him! Let's keep in touch!