February 1, 2012
Dear Friend,
This is my first letter of this new year. The holidays are over, and I am looking forward to the arrival of spring. We have had so many days that give the hint of spring weather.
Two of our children and two of our grandchildren were able to spend Christmas with us. We enjoyed having family with us. I am now looking forward to more family visits.
The end of 2011 brought some changes in my medical condition. I am still trying to increase my fluid intake and finally I am having some success. I had a scare at the end of December when my hemoglobin count dropped to 8.4, and I had to have a transfusion of packed red blood cells. Following the transfusion, my counts increased to 10.4 and are continuing to improve. On January 24, my hemoglobin was up to 10.8. I would like it to go back to 12 where it had been after the transplant. At the same time, an EPO blood test was performed and my levels were too low. EPO is produced by the kidneys and are important in the production of hemoglobin. Beginning in January, I started receiving weekly Procrit shots to replace the EPO that my kidneys are not producing.
My creatinine levels were still too high having increased to over 3.0 when they should be below 1. I just do not drink enough fluids. I now have a new routine. Each morning, I put containers equaling 64 ounces on the counter and make sure that I drink enough before bedtime each day. As a result, my creatinine levels are improving. On the 24th of January, my creatinine level had dropped to 2.48. I am determined to see continued progress.
At the end of December, the iron and Vitamin D supplements were stopped because my levels had returned to normal. That did not last. The Procrit shots usually result in the lower production of iron, so the iron supplements had to resume in late January. Also, I am again taking the Vitamin D. Iron levels should be between 60 and 170. Mine was low at 13. Once the supplement starts working, I should not be quite so tired.
This will be a wonderful year for me. I will be blessed in March to turn 72, but more important will be rebirthday 9. That is nine years since transplant. In July, we will also celebrate our 50th wedding anniversary. I am so fortunate to be a survivor and enjoy these upcoming events.
I do think often about my other MDS transplant friends. And the journeys they are taking. My wish is that everyone that is healthy would register to Be the Match for someone needing a stem cell transplant. Everyone deserves a chance at life. There is not much more news here. I will be thinking about you and will write again soon.
Love,
Shirley
April 1, 2012
Dear Friend,
I realize that I just updated you on my progress at the beginning of February, but there have been enough events in my life to update you again. February was quiet, and I continued to work on fluid intake to try to keep the kidneys stable. It must be working as my blood tests remain stable. I must continue to drink, drink, drink. The part I don't like is drinking a cup of the salty chicken bouillon every day to keep my sodium levels up. I was always one of those individuals that read labels and watched the sodium intake..a mistake for my body.
When I have my blood tests in April, I will know if I must continue with the iron and Vitamin D supplements.
In February, I had two eye appointments. I went to Dr. Zuravleff about the right eye irritation. It is caused by a "droopy" lower lid. He recommended another eye surgery and suggested that my other eye doctor give his opinion. It was the consensus that I have the surgery. It is a retractor/recession of the right lower eyelid using a piece of ear cartilage. The purpose is to build up the lower lid so that the eye closes properly without causing extreme eye irritation. I just hope that I am in a deep la la land as when I had the eye surgery in November, the surgery did not hurt, but I was alert throughout the procedure. I thought I should do this update now as I might have a little difficulty reading for a week after the surgery. This surgery will be at 8:45 AM on April 4.
March brought some very happy events for me. On March 2, I celebrated my 72nd birthday. At about 9:00 AM, there was a knock on the door. I was still in my pj's and robe and could not imagine who would be knocking that early. Surprise! I had two very special birthday presents. Kelli and Cameron flew in for the weekend. Cameron was the first in the door, and he was wearing birthday bows on each shoulder. A great present! They spent that Friday, Saturday, and Sunday with us. We ate out on my birthday, ordered in on the next day, played several games of Rummikub and just enjoyed ourselves. Since I have to share my day with Dr. Seuss, Ross took Cameron to the movies to see the new movie.
March 15th was another day of celebration for me with my 9th stem cell transplant rebirthday. I received many messages and also a beautiful spring bouquet from a young transplant friend. For some reason, I do like the month of March!
I continue to enjoy most of my time. I have a few new crafty projects that I am working on. So far, I am pleased with results. I thought about going to the Spring Bazaar this weekend, but I think I would rather go to Hobby Lobby. I sure love that store. I also like Pinterest as I can find incentives for new projects. I have been working on a different kind of crocheted necklace, completed a flower wall hanging, and have made a pretty rose from coffee filters. Must make a few more for a bouquet!
Must close and enjoy the day. For some reason, we went from fall to summer with just a touch of winter and spring mixed in. Now I am waiting for warmer nights so I can put tomato plants on the patio.
I do think often about my other MDS transplant friends. And the journeys they are taking. My wish is that everyone that is healthy would register to Be the Match for someone needing a stem cell transplant. Everyone deserves a chance at life. There is not much more news here. I will be thinking about you and will write again soon.
Love,
Shirley
NOTE:
The Myelodysplastic Syndrome is gone, but the journey continues. It continues through the healing process and the rebuilding of my system. I am so thankful for my friends, family, the doctors (especially Dr. John McCarty, Dr. Harold Chung, and Dr.Yogesh Gandhi) and all of the nurses at the MCV Bone Marrow Transplant Unit (clinic and inpatient), Dr. Gandhi's nurses, and the nurses on the second floor east at John Randolph Medical Center. I am so thankful for having Judy Davis as my former nurse, my therapist, and my continuous friend. To the list of doctors, I must add Dr. Gilligan, Dr. Toor and Dr. Iuorno. I have great respect for the Medical College of Virginia Pathology (Apheresis) Department, especially Dr. David Wilkinson, Dr. Richard McPherson, Dr. Susan Roseff, and Dr. Kimberly Sanford. I am also thankful for Jenni Anderson and her staff of nurses in Apheresis. I now have a Post-Transplant Coordinator, Laura Couch, to coordinate my appointments, answer my questions, and support me.
If you are a transplant patient, be an active advocate for yourself. It is important to follow the rules. Be sure to ask questions about everything; become an expert. Research everything on the Internet, as you can never know too much. Yes, listen to others, but always remember you are the final decision-maker. Do not leave anything to chance. Have an unrelated confidant with whom you can share your joys and fears. Double-check all medications and have an understanding for their purpose and their side effects. Do not allow �pity parties� to last more than five minutes as they are really a waste of time and make your eyes hurt. Do not shake hands, just become a hugger. Do not touch doorknobs; let others open the doors. Wear latex gloves when handling raw meat and vegetables. It is always good to carry a clean latex glove in your pocket. You never know when you will need one. Wash your hands frequently and constantly remind family members to do the same. The most important thing to remember is to count your blessings. It sometimes helps to list them. Keep a positive attitude. One of my best pieces of advice is to eat peanut butter, special dark chocolate, and Colby-jack (or cheddar) cheese.