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11/22/2017 Latest post:
In 2011 I was diagnosed with a rare bone marrow disease called myelofibrosis. The bone marrow develops scar tissue until it is totally scarred and cannot produce blood cells and there is no treatment. Luckily, I have not had symptoms, other than some fatigue, for the last 6 years. In April they did another bone marrow biopsy and found that the disease has progressed so my doctor here in Santa Cruz referred me to Stanford. The doctors at Stanford confirmed that it has progressed and my spleen is enlarged as it tries to produce the blood cells that the bone marrow no longer can. The doctors also told us that in about 20% of myelofibrosis patients they can also develop Acute Myeloid Leukemia (AML) and mine is progressing in that direction. With this complication the doctors feel that I would survive less than 2 years.The only cure for Myelofibrosis is a Bone Marrow Transplant so on Aug. 16th we met with the Transplant Doctor, and they have recommended doing it as soon as a donor can be found. Once a donor is found the next step would involve a week of heavy chemotherapy infusion to kill off my immune system and prepare me for the transplant. Once I start the chemotherapy I'll be in isolation at Stanford, as my immune system will be so compromised. If all goes well I will be in the hospital for about another 4 weeks after transplant while they monitor me continuously to see how the donor cells are doing. The donor cells need to clean the fibrosis (scar tissue) in the bone marrow so that they create a healthy environment for the new stem cells to create new blood cells. Because of this extra work for the stem cells, myelofibrosis patients only have a 50 % chance of a successful transplant. The doctors will also monitor me closely for graft vs host disease which is the most common complication with any transplant, your new cells attacking your body. After the four weeks, if I am showing good signs of the new cells engrafting in the bone marrow, I would move out of the hospital to housing nearby. They will need to see me daily or every other day at first so they want me close to the hospital in a sterile environment and in case of any complications. Assuming that goes well, they would move my visits to twice a week at which point I could come home. This is normally about 100 days from transplant. Full recuperation takes about a year or more and I will need to limit my exposure to any germs as my immune system rebuilds. What I've learned through this is that there is a huge need for stem cell/bone marrow donors. So, I would ask you to consider being a bone marrow donor. You probably won't be a match for me but you could potentially save someone else's life. If you want to get on the marrow registry, go to BeTheMatch.org and find out how to be a donor. If you are between the ages of 18-44 registration is free and there is never any cost for a donor. Doctors choose donors in the 18-44 age group 95% of the time but you can register up until you're 60 (45-60 cost is $100.00). Regardless of your age, you can encourage more people to go to the website and register. The more people in the registry the better chance that patients have to find a match. Most bone marrow donations are done with peripheral stem cells that are collected through a blood draw, it s a pretty simple procedure. There is a lot of information on the website and I would encourage everyone to join the registry, you never know whose life you may save. With the love and support of my wonderful husband, my family and friends I plan to fight this the same way I approach every challenge in my life, with a positive attitude and hard work. Failure is not an option. With your prayers and God's guidance, I can do all things through Christ who strengthens me.