A Bone Marrow Donor's Perspective
This article is not meant to inform medically or make any judgement as to the typical Bone Marrow, Stem Cell Donor Process, it is merely a perspective from the "other side of the process." My perspective. Thanks for reading.
Update: Robin Roberts
In recent weeks we have heard more about this procedure and MDS thanks to the courageous battle that ABC'S Good Morning America Host Robin Roberts has made public. It is the same procedure that her sister recently went through that I speak of here. Sadly, Ms. Roberts lost her mother the evening before she was to begin the initial chemo to prepare her for the transplant. This author sends condolences and sympathy for the loss of her mother, as well as best wishes for a successful transplant and recovery for Ms. Roberts.
My Bone Marrow Donation Experience
Every person dreads receiving the news that someone they care about has been diagnosed with a deadly disease. About a year ago, after many tests and doctors visits, my oldest brother called to let me know that he had been diagnosed with Leukemia. I cried and he kept his positive attitude and assured me the doctors could help him with all the newest medical breakthroughs. I have to admit, I was so scared and assumed the worst at first. Our mother passed away 10 years earlier from a blood related disease called myelodysplastic syndrome(MDS) and the first thing that came to my mind was that this must be a genetic problem for our family. I remembered the panic and confusion we all dealt with around her diagnosis and treatment and sadly her ultimate, and what we considered, untimely death.
After sharing the news with all of our family, my brother set course on his recovery journey. They admitted him into the hospital and started immediate chemotherapy treatments and transfusions to try to halt the progression of the Leukemia. While he was in the hospital for these initial treatments the doctors suggested that his siblings get tested to see if any of us might be a possible match for donation of Bone Marrow Stem Cells which would be the best course of action to cure the Leukemia. Shortly after my mother's death, I was swabbed and put into the "Be the Match" registry. I never received any calls or notifications that I might be a match for anyone else. And I learned that a sibling holds about a 25% chance of matching. Surely with 5 siblings my brother's chances were increased! Unfortunately, due to health reasons, two of our siblings were not even tested as possible donors. That left my brother's chance of a donor to three of us: my youngest brother, my only sister, and me.
I received a call from my brother's Patient Advocate with instructions on getting to a lab and obtaining the preliminary blood work. Upon receipt of these instructions I went to the lab, where my blood was drawn. As I recall, they took about 2-3 vials of blood. I remember the lab tech asking what I was there for, and I said , "I'm here to help save my brother's life, so please be sure to collect only matching cells." I have always been a firm believer in the power of positive thinking and sent all the energy I could muster into those vials of blood.
I live about an hour away from all my other siblings so the other two were able to get tested right at the office where my brother was being treated. When they do the tests on the blood they look for "markers" and hope to match as many markers as possible. If the first three don't match they don't pursue further tests. If they do match the first 3 they continue testing in hopes of matching the ultimate number of 10 - like a "Perfect 10." The idea behind the matching is that the stronger the match, the greater the chances for the implanted cells to thrive and grow without creating a threat to the host. Their results came back and showed that my sister did not match at all, and my younger brother matched only 3. I got a call from my brother and he said, "Guess what?" And my reply was, "I already know, I am a match, right?" And he said,"A perfect match, ALL 10 MARKERS!" Then he posed a question to me and at the time I thought it was a strange question, "Would you consider being a donor for me?" Of course I said yes, but he encouraged me to discuss it with my husband and kids and really think about it. It was a unanimous decision, I would be a Bone Marrow Donor for my big brother. Now the real "fun" begins.
Shortly after I decided to do the donation, I began my own testing. A donor needs to be free of diseases, and be in good health. The medical questionnaire was lengthy and they pretty much knew every detail of my life - all confidential. And I received a complete physical, chest x-ray, EKG, and extensive blood work. My other brother called it an "Executive Physical." All the costs for these tests are covered by my brother's insurance company, no monetary cost at all to me.
Finally, after about one month from the initial testing to see if I was a match, I was cleared, and took my second pregnancy test in that month - better safe than sorry! Now the harvesting procedure begins. I was given Neupogen injections every day for 5 days. This was hard on the family as I had to drive an hour every day from my home to the hospital where the transplant was taking place to get the injections. The nurses who gave me the injections were very compassionate and kept a close eye on me. As the Neupogen builds in the body, it literally expresses the necessary cells into the bloodstream so they can be harvested from the blood, rather than doing the needle into the bone type of extraction. As the week progressed, I felt more and more achey in my bones. I had previously broken my coxis bone and that was extremely sensitive. Please keep in mind, that the reactions are different for different people. It just happened that I was in extreme pain from about day 2 1/2 until about 3 days after the procedure. I was determined to keep my body clean of medicines, i.e. Ibuprofen or Tylenol, and endure the pain. I did not realize until about day 4 that I could have asked for strong pain medication- which I ultimately got and took as minimally as possible to alleviate some of the pain.
Finally the day came to do the procedure to harvest the "life saving" cells. Leading up to this day I was a bit of an emotional wreck. I cried a lot, and prayed a lot. I spoke to my Priest and expressed my concerns, and the extreme range of emotions I was experiencing. I was being told by everyone what a wonderful thing I was doing for my brother. How incredible a person I was for this sacrifice of time and inconvenience, not to mention the discomfort and pain I was experiencing. But I was not seeing all of this. I was worried that I was not going to live up to all the expectations. What if something went wrong? What if my cells would not be the answer. My Priest was very comforting and assured me it was in God's hands, and what I was doing was an act of Love. Love? Yes, I believe he was right. I love my brothers and sister and would do just about anything for them. Let this harvest day begin.
My husband, who was my trustworthy chauffeur for this whole week of injections and "harvest day" drove me the hour long drive through the foggy morning traffic to the hospital. I peed about 20 times before they started hooking me up to what I deemed the "Frankenstein Machine." I was terrified that I would have to go to the bathroom with tubes and machines and help from the nurses. After attempting to put the needles in and out through my arms the nurses determined they had "blown my veins." Not as bad as it sounded at 7 am in the morning. Unfortunately that meant I needed to have a central line put into my neck. My husband freaked! He was ready to call it quits then. I assured him I would be fine as they took me to the surgery department to have it put in. All of this was a bit of a blur as I was in a daze, or mantra maybe. The surgical staff was so upbeat and I remember thinking, "do they have any idea how important this day is?" I think every day to them and what they do is important now.
Central line installed! Peed one more time just in case. Frankenstein Machine plugged in and out of my neck. I must have looked like a million bucks. Machine turns on. I get lots of pain meds. I finally sleep. I wake up intermittently to the sound of the machine and the nurses coming in and out. I had a few visitors, my brother's wife, mother in law and sister in law. The look on their faces told me I did look like Frankenstein. I don't remember what they gave me, I just know that the nursing staff was wonderful and took great care and steps to make sure I was comfortable. My husband sat in the corner chair as I lay in the bed, with tubes coming in and out of my neck and watched with amazement and curiosity the process his wife was enduring. He was concerned for me. I was concerned that the blood coming out was depositing as many millions of needed stem cells as possible. I think our goal was 6 million cells. If we did not get enough that day, they wanted me to come back the next day. Eeek.... do this two days in a row? After what seemed like forever (I think it was 5 hours on the machine), the machine was turned off and I was unhooked and allowed to use the restroom, thank God!
They did not want to remove my central line until they counted the cells they had collected- just in case I had to return the next day to do the process again. My entire blood supply had gone through the machine 7 times I think, out through the machine and back into me. I called it a "cleansing." What they were left with is a bag, (see the photo below) with what we hoped contained 10 million stem cells. All that for one little bag. One little bag of Life Saving Cells!
My husband and I went to see my brother, who was in the same hospital, and had been for almost a month preparing for the transplant. His cells were completely wiped out at zero waiting for my cells to move in and take over. Needless to say, he was vulnerable to infections, and was in a sterile environment. He took one look at me, his little sister, who he had to take care of in the past, exhausted, tubes sticking out of my neck and looking totally disheveled and I could see the admiration, love and thankfulness in his eyes. We sat waiting for the count to come back and shared stories and laughed. He was complaining about the awful coffee in the hospital, and I asked him how he took his coffee. "Black, " he said. "Not anymore," I said, "French Vanilla Creamer, once my cells take over!"
After about an hour, a nurse came in and said they counted 11 Million Cells! They were so excited! It was a huge harvest success!! They gave my brother 7 million of the cells right away and put 4 million in the freezer - in a high tech ziploc bag I assume. I told them to make sure they put his name on it too... did not want those precious cells lost.
My job was done. It was in God's hands now. Probably, as my Priest said, always was in God's hands. It was one year ago this week that we learned of my brother's diagnosis with Leukemia. It has been 9 months since the transplant. He is still undergoing treatment, and waiting for the results of a new bone marrow biopsy as I write this article. If needed they will give him the remaining 4 million cells.
It took me about a week to feel "normal" after the procedure. The Neupogen finally wore off and I was back to my usual routine. I wanted to share this story because I felt a little "lost" in this process. I may not have experienced the "normal" complications, or pain associated with what should be a simple donation. But I wanted to let others who may be considering this, or needing this, know that despite what may happen the outcome and possibility to save a life is priceless. I would go through this all over again, not just for my brother, but for a stranger.
I am still on the registry list, and I hope that others are inspired to get swabbed and join the list as well. Who knows who needs you?