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.
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's Blog: http://www.interanimate.com
Posted by Inka Smith at 1:11 AM