March 8, 2008

Dear Friend,

Well, my birthday has passed and my re-birthday is on March 15.  I am 68 in real years and almost five in re-birthday years.  So far, it has been an eventful 2008.  I am on a self-imposed quarantine as the flu season is at a peek in Virginia.  I am determined to stay healthy.

The end of January brought some discomfort.  I had my Photopheresis treatments the last two days of January.  The first day of treatment was quite eventful.  In Photopheresis, blood is drawn in six cycles with the white cells removed and the red blood cells returned to the body.  At the end of six cycles, the white cells are treated and returned to the blood stream.  At the end of the first cycle, I felt quite bad and finally told the nurse.  My throat was dry, it felt like my mouth was swelling, and I had trouble swallowing and breathing.  My blood pressure went to 87/35 and I turned the red color of the hazardous waste bin.  The three nurses sprang into action.  Up went my feet, down went my head, an ice bag was placed on my head and I was infused with fluids.  I finally stabilized and the treatment was aborted after four of the six cycles.  Well, I went back the next day, and the same thing happened at the end of the first cycle.  The only difference was that I reported it as soon as I started feeling bad.  They stopped the process.  They reset the machine and started over.  In the meantime, a doctor came in and watched.  Well, at the end of the first cycle, it happened again.  They went through the same process, up with the feet, down with the head, ice, and fluids.  The doctor had the treatment aborted.  He immediately started checking patient records.  That was on a Friday.  He called on Monday morning, to let me know that the common denominator was the bolus dose of Heparin.   He called the FDA, Baxter Healthcare, and the CDC.  The Virginia State Health Department visited the hospital on that Wednesday to check patient records and filed a report with the CDC.  The result was a further recall by Baxter Healthcare and the inspections of the supplier in China.  I am naturally anxious to hear what the contaminant was.  I have been following the reports on the Internet and in the paper.  I sent letters to our district representative and senator in the United States Congress.  They did not acknowledgement of receipt of my e-mails.  Hmmmmm….future voting decisions.

Kim and Tyler have been here for a visit.  We are busy planning our spring travel.  Ross will have the motorhome ready for travel by the end of the month.  In April, we will travel to Savannah, Georgia.  We have never been there.  Then we will continue on to see Kelli and her family in Marietta, Georgia.  We plan to travel to Michigan to see my older sister in July.  My younger sister will also be there.  It will be a sisters’ reunion.  Then in November, it will be back to Georgia, and Myrtle Beach, South Carolina.  We will plan additional trips based on the price of gas!!!.  A motorhome is a gas-guzzler. 

This is a brief picture of the last eight years.  Besides being a five-year transplant survivor on March 15, it will have been 2810 days since I was diagnosed with Myelodysplastic Syndrome and 1826 days since my transplant.  Before the transplant, I had 125 units of blood.  Since the transplant, I have had 162 Photopheresis treatments, two ports and two Hickman implants in my chest….all removed except for one port.  I also have a pacemaker….the beat goes on.

Now the better stuff….I have four grandsons – two since transplant.  I have had an additional 8+ years of marriage for a total of almost 46 years.  We bought a motorhome in the summer of 2005, and we have traveled through or to West Virginia, Pennsylvania, Ohio, Indiana, Maryland, Michigan, North Carolina, South Carolina, Georgia, Tennessee, Oklahoma, Texas, New Mexico, and Arizona.  Naturally, some of our trips have been in Virginia.  We have visited many important people that have touched my life from family to high school and college friends.

I still use a cane.  I actually own four of various designs and colors.  Hmmm…five years, maybe it is time for cane number five.  I have not decided if the cane is a necessity, security or a fashion statement.  I do need the cane for a few hours after the Photopheresis treatments.  I try to match the cane to my outfit.  I still decorate the mask that I must wear in the hospital until I arrive in the clinic.  The mask also matches the outfit.  I am maintaining a weight of between 114 and 118 pounds.  The blood counts are still spectacular.  No “baby” shots yet as the treatment for the mouth GVH continues. 

I continue to enjoy life.  Yes, there have been some little bumps in the road, but no “potholes” since the spring of 2004.  I feel very fortunate to have been part of a clinical trial and to be a “survivor”.  I hope sharing my experiences will help others.  I am now up-to-date on my letters.  I will send another one after our travels this spring, summer and fall.

Yes, we will keep in contact by telephone and e-mail.  Thank you so much for being my friend.

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 do not expect any cell rejection. 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 and Dr. Toor. I have great respect for the Medical College of Virginia Pathology (Apheresis) Department, especially Dr. David Wilkinson, Dr. Richard McPherson, and Dr. Susan Roseff. I am also thankful for Jenni Anderson and her staff of nurses in Apheresis.

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 cheese.