Inklings Designs

Life in the South:

The adventures of three sisters: Gracie Hope, Faith and other things to make you smile.

Monday, September 1, 2008

Meet Jim...a follow-up story from "Who's your Hero"

This is an amazing story of giving, receiving and new friendships! I hope you take the time to read all of it. It has truly warmed my heart. Thank you Jim for sharing your story and thank you Steve for your wonderful gift.

Jim's Story:

Inka asked me to provide a short story for her blog about my stem cell transplant experience. First of all I'd like to thank Inka for blogging about Steve because, on a whim a couple weeks ago, I searched Google for a key date, January 8th, and a few other related words. Google eventually displayed Inka's June 29 blog post about Steve. I was both elated and surprised when I realized Steve was my donor. It also became a delicate situation in my mind because the National Marrow Donor Program promises their donors total anonymity. They only allow contact one year after transplantation and then only if both parties agree. But can you blame me for wanting to know who saved my life? Not knowing Steve or Inka, I Emailed Inka asking her if she would ask Steve if he was interested in establishing contact with me. I wanted to respect Steve's privacy but I also wanted to thank him in person for what he did for my family and I. About 2 hours after sending the Email to Inka, Steve phoned me! I'm so happy he made that decision because now I've had a chance to thank him. In today's high tech world, I suppose the NMDP should inform both donors and recipients, if they really want to remain anonymous then they should not provide their stories in a blog or other website! I have blogged about my experience starting last November. Steve could have very well have Googled and found me to! Since I have a blog, if you have the curiosity, please check it out for my posts. You can browse the post archive by month. Look for the January dates when I was hospitalized for the transplant procedure. I tried to post every day during that month since I got progress updated daily from my 3 doctors. Here is a brief summary of how I came to need new bone marrow stem cells and how my life was saved by the kindness of a total stranger.How a Hero Saved My Life By the end of 2005 I was tired a lot. When going to sleep on my side I could hear my heart pulse whooshing in my ears. I couldn't exercise because I'd get out of breath very fast. On January 26, 2006 I saw my primary doctor. He said I looked pale and had me get a complete blood count. That afternoon he phoned me at work to say he needed me to get a ride to the hospital immediately. My hemoglobin count was 40% of normal. Well, that explained being out of breath! Over the next 24 hours I stayed overnight in the hospital and they transfused me with 5 pints of blood to bring up my hemoglobin level to 80% of normal. I felt a lot better. They performed a bone marrow biopsy (ouch) and delivered the verdict, I had Myelodysplasia (MDS), sometimes called Pre-Leukemia. MDS is Greek (like most medical terms) for 'Abnormal Marrow'. My marrow stem cells were laying down on the job, not producing critical blood cells to keep me ticking. Unlike Leukemia though, MDS progresses slowly. Over the next 20 months I pondered the only cure, a Stem Cell Transplant (SCT). There were no drugs that would end the nightmare. The eventual endgame was what they call 'patient morbidity'. I needed red blood transfusion from donors every few weeks. It got worse as the MDS progressed. By last summer I needed 2 pints of donated blood every 2 weeks. I was trying to avoid the stem cell transplant and prayed for the MDS not to transform into Leukemia. I had a family that needed me and I enjoyed being with them very much. I gave my doctor the go ahead to do another donor search. A search in 2006 yielded a 'partial match'. That was another reason I chose to wait. The summer 2007 search came back with what they called an 'exact match', so my family and I decide to go forward with a SCT. I quit my job in October to prepare, undergoing many tests including a bone marrow biopsy, and getting my affairs in order. The survival rate for a SCT is not great but it was my only hope. Other than needing transfusions often I was not very sick, no infections. I enjoyed last Christmas with my family. I checked into the transplantation unit on January 2 and started the process. While I was getting 6 days of chemo that would kill my existing marrow stem cells, hero Steve flew across the country to Baltimore and got one shot per day that would stimulate his own marrow to produce so many 'wonderful and working' stem cells. So many new cells were produced that there was no more room for them in the marrow, they were pushed out into his blood. On January 8, I got one day of no chemo while Steve, in Baltimore, got hooked up to 2 lines in his arms and they filtered his blood through a special matching that filtered out a good quantity of his new stem cells. They flew his cells across the country that night in a cooler and delivered them to my hospital the next morning. On the morning of January 9th my hospital 'scrubbed' his donation, filtering them again to remove some of his platelets and white blood cells that were also in the donation. In the afternoon, the 2 head nurses came in the room with a big round orange bag holding Steve's donation (pictures in the blog). They hung the bag from the chemo tree next to my bed and hooked a line to the 'Groshong' catheter that entered my chest. In less than 1/2 hour Steve's cells were in my system. For reasons probably only known to God, these cells travel through the blood stream until they reach the inside of the major bones, the bone marrow. Once there, they 'seem to know' that this is the place to settle down. That night I had the only adverse reaction I've had to Steve's cells. I got a few hours of chills and fever. My body was confused. The next day those symptoms were gone. Then the waiting began. Every day I'd get a blood test. Every day my white blood cell count was zero. I had NO ability to fight germs! Around 12 days after the transplant new white blood cells started showing up! Hallelujah! During this time my blood type changed from A positive to Steve's type, B positive. Over a ten day period they had to transfuse me with approximately 14 units of red blood cells, and a large quantity of platelet cells. My old blood cells were dying off. When the 10 day period was over, my transfusion days were over! Steve's new cells were now mine and they were cranking out all the blood cells I needed! Hallelujah again! The team of doctors and nurses were very surprised at how quickly Steve's donation grafted in my marrow! They let me go home earlier than usual, January 27th. Ever since then I haven't had so much as a sniffle, no infections. My Graft Vs. Host (GVHD) side effects have been ever so slight as my body seems to have had almost no problem with the new cells. In fact, it's the other way around. If there were to be a problem it would have been the new white blood cells having a problem with my body. It has been very smooth sailing! My doctors are all smiles. I am all smiles. My family is all smiles.However, I'm not out of the woods yet. The remaining danger for me comes from my immature new immune system. It will take another year, and a whole set of childhood re-vaccinations, before my immune system can be considered totally ready for prime time. I have to exercise special care not to expose myself to obvious sources of pathogens. I am so grateful to Steve and the organization he belongs to that helped him make this a miracle for me and my family. I thank the NMDP for having a bone marrow/stem cell donor database. I thank my family. I thank God.
Jim Anderson
Jim's Blog:


Miniature Patisserie Chef said...

Hi Inka,

What a great inspiring story. It's so amazing how internet helps 2 people to find each other.
Thanks for sharing this story.

Have a great Labor Day.

Pei Li

Dianne Long said...

Incredibly touching stories Inka. Also, isn't it amazing how you came to be the catalyst for these two to find one another! God surely does work in mysterious ways. I was inspired to look into volunteering for bone marrow transplant donation when I read the first story, and ashamed to admit I'd forgotten about it since. But now there's no way I could forget. Funny, I woke up thinking I really should contact my Dr. this week and get an appt. since I haven't been doing my regular diabetes checkup. I don't know if I am even a candidate for donation, but other than some low level diabetes that is diet controlled, I'm very healthy, so I will ask to see. I am blood type O positive which makes me a universal donor if my blood is healthy. Thanks Inka, you inspire and help more than you know!

Lisa McDonald said...

Inka ~

An amazing man with a very inspiring story. Thanks for sharing this story with us.


Carolyn Kocman said...

it is so sweet that you are so involved in helping others, inka. thank you for sharing this inspirational story.

Susan said...

AMAZING!!! I read everything, but I am commenting here...I hope that our future leaders will accept science and its contributions with open arms!!! Thank you sooooo much for sharing these experiences.
Susan *dutchrose*

Shabby in Pink Boutique said...

What a touching story Inka. I so enjoyed it... Wishing you a Happy Labor Day!

Cathy said...

Inka, What a story! I so enjoyed reading it and thinking about how one person literally can Change another's life. I'm so glad Steve chose to be the Hero and save your life. I'm so inspired.

An absolutely wonderful ending. Thank God daily.

xo Cathy

Dawn-Hydrangea Home said...

Wow - Inka what an amazing story of Steve and how Jim found the both of you. Have a great week!

Cottage Flair said...

What an incredible post. And to think you brought these two people together. Your photos of St. Jude's and your trip are wonderful. I am so happy I stopped by today.

gail said...

Wow Inka, what an amazing follow up story. Thank you for sharing it. Its wonderful what your blog post accomplished. What a true miracle! I know this special man will always be thankful to you for posting Steves story. This is the best kind of show and tell!!! I just cant wait to meet you...luv,gail

Susie said...

Hi Inka! What a wonderful story of hope for recovery through stem cell research.Thank you for bringing it to us.
The Polka Dot Rose

Susan - InHerOwnWords said...

Inka thank you for sharing such a personal story. Steve certainly is a Hero! What an amazing person! May his life be blessed in the many ways he has blessed your life.

cathy said...

Wow what an amazing story! Steve is an amazing person for sharing his marrow. I know it's not a painless process.

Carol at Clutter Bug Studio said...

Thank you so much for sharing Jim and Steve's amazing story. What a blessing for Jim that someone like Steve stepped up.

Noelle Garrett Designs said...

Hi Inka,

What an inspiring story. We really can change the lives of others if we take the chance. Thanks for sharing.

Brown Bee Studio said...

Hi Inka....I'm a good way! Thanks for sharing this inspiration....xoxo

Patricia said...

Wow! What a story. That is so inspiring and beautiful. It certainly enforces the idea of transplantation, doesn't it? What greater gift can we give one another? Great story, great men, great outcome.


Silena said...

Hi Inka,
I am so touched by these two inspiring stories. The fact that your interest was piqued enough to get these two stories on your blog shows that you are a great contributor to our world....which after hearing this story, seems so small! My own DH was a kidney donor to one of his brothers who lived, fully, for 18 years after the transplant. And if it had not been for a staph infection that he got in the hospital during a knee operation, he would still be alive. Anyway, you have two wonderful friends now...a wonderful neighbor and your new friend, Jim!! I pray for Jim's continued good health!!

Angel Heart Designs said...

Inka...what a beautiful story! my hubby and I just did the bone marrow testing for a dear friend of ours who is dying...and needs a marrow transplant ASAP! We hope we are a match...we made our kids test too! LOL... How wonderful to be able to save a life..with just a test and blood!
Thank you for sharing...Cindy:)

Michelle May-The Raspberry Rabbits said...

What a wonderful story. Just wonderful. Thanks for sharing Inka.

SoCal Helene said...

Hi Inka,
Thank you for sharing the wonderful story about two remarkable men. Have a great week!
;o) Helene

Crystal ~ CJO Glassware & Gifts said...

Hi Inka ~ Steve is a Hero, and I'm so glad that Jim is doing well. Give him a big hug from all of us.


Shelli said...

Inka, Thank you for sharing this story! This man Jim is my uncle and I could not thank Steve enough for doing what he did! I am so glad these postings went on and they were able to find eachother! THANK YOU