Curtis Wuest: Iowa Physician with MDS Makes the Most out of Life

“Cantering” Physician Counts His Blessings

Written by Curtis Wuest

I am an 82-year-old retired family physician, and I was diagnosed with MDS in May 2007.  Before a routine follow-up appointment with my cardiologist at the University of Iowa Hospitals and Clinics, I called him and requested that I have a complete blood count (CBC) drawn as part of that check-up, because I said, “if I am not anemic, I don't know siccum (anything) about medicine". 

I was experiencing shortness of breath with what I determined to be minimal exertion, and I was more tired in spite of adequate rest.  His comment after reviewing the CBC report was, “This is something I can't handle---your white blood cell counts are down. Your red blood cell counts are down, and so are your platelets. I am referring you to the Holden Cancer Center” (part of the University of Iowa Hospital complex).

I was seen by the hematology oncologist the next morning. A bone marrow aspiration and biopsy were done, and the diagnosis was made.  The word “myelodysplastic” was not to be found in my Stedman’s Medical Dictionary that I used throughout medical school.  At that stage, my attitude was one of ignorance and/or indifference. I just needed to learn more about it. I never had a patient with that diagnosis during my 40 years of practice--at least, no one for whom I made that diagnosis.  Nor was it ever mentioned in our lectures or at any seminars that I attended.  I assume that the disease was around, but under another name.

The hematologist informed me that I had "a blood cancer” (bone marrow failure) and he was going to treat me with a bone marrow “stimulant".  My response was, "Isn't that like whipping a dead horse?" to which he replied, "No, it may be crippled, but it can still canter a bit."  So I am cantering!

My activity has always been "as tolerated" and I really appreciated the fact that my hematologist planned to follow my disease with venipunctures and complete blood counts rather than bone marrow aspirations and biopsies! I do not feel that I’ve been treated any differently because I am a physician.  Nor have I ever felt that I wanted or needed any special treatment.  I appreciate and enjoy my hematologist!

Because of my age, I was not a candidate for a bone marrow transplant. His plan of treatment was that if my hemoglobin was below ten (considered anemic), I would receive a dose of darbepoetin (Aranesp®), and if it was below nine, I would also receive two units of packed red blood cells the next morning.  During the next two years I received a total of 17 doses of Aranesp® (200 micrograms), and a total of 12 units of packed red blood cells.  I have required neither treatment for more than two years!  My most recent routine follow-up was in September 2011, and my counts (hemoglobin equaled 11.3) and physical exam were fairly normal.  My only symptom is fatigue, which is relieved with a nap.  My next scheduled appointment is in one year, but I can request a complete blood count whenever I am suspicious that my counts may be down. 

I feel that I am truly blessed.  I have a very loving, understanding and energetic wife. Joan and I will celebrate our 60th wedding anniversary in May 2012.  We have five children, fourteen grandchildren, and one great-grandchild.  We live in Coralville, Iowa, less than two miles from the aforementioned hospital in Iowa City where we have top-ranked medical specialists in all fields. Our condo is on the city-owned, 18-hole golf course where I have been a volunteer for approximately ten years.  We play between three to nine holes of golf several times per week or whenever the spirit moves us. Our PGA pro provides me with a "company car" (a Yamaha golf car) as one of my "perks" which I illegally drive a short way down the street from our condo to the pro shop. Our Lutheran faith constantly provides us with sufficient strength to cope with the cares, worries and concerns of daily life and living.

We look forward to receiving the AA&MDSIF literature that contains many useful, helpful articles.  We also attended an AA&MDSIF one-day conference in Chicago in 2010 and are planning to attend the one scheduled for October 2012.