Medical Background

             Chris was diagnosed with Polycythemia Rubra Vera an acquired disorder of the bone marrow, which causes an overproduction of all three blood cell lines: white blood cells, red blood cells, and platelets. It is a rare disorder, occurring more frequently in men, and is rarely seen in those under 40 years old. Its cause is unknown, and the disease is considered a hematologic malignancy. Polycythemia Vera or simply abbreviated as PV is one of four Myeloproliferative diseases. MPDs are a closely related group of hematologic malignancies in which the bone marrow cells that produce the body's blood cells develop and function abnormally. The disorders are progressive, and there is no cure, except for an expensive and risky bone marrow transplant. In end-stage MPDs, the body may completely lose its ability to produce blood.

Myeloproliferative disorders are rare enough to be considered orphan diseases, which means there is no financial incentive for the big pharmaceutical companies to do research in the field. At the same time, MPDs can affect anyone at any age. There are no proven causes. You may have a myeloproliferative disorder for some time, progressively and silently growing worse, and be completely unaware of it until it suddenly causes a stroke, heart attack, blood clot or hemorrhage. Many primary care physicians never notice the abnormal blood counts that are early signs of MPD's.

In Chris' case, a investigation by one of his hematologists / Oncologists into his hospital records from years before showed that he had this disease 5 years before diagnosis. It showed an elevated Hemaglobin level which was still present at the time of diagnosis in April of 1999. The surgeons at the time never questioned the elevated blood levels.

In the summer of 2002 Chris' blood test started to reveal tear dropped shaped red cells, commonly known as Poikolcytosis. Ally happened to perform her own slide of his blood and found these cell's during a review of Chris' slides in her laboratory at the University. Further tests done and reviews by pathologists confirmed what she saw. A later visit to Chris' Michigan oncologist revealed he had entered the spent phase or commonly referred to as Myelo Fibrosis or Post Polychythemic Myeloid Metaplasia.

Because of the higher hemoglobin levels in his blood, Chris has to undergo periodic phlebotomies. To date he has had 125 of them, each one removing a unit of blood from his body. In addition his disease has effected his spleen, causing a great deal of pain at times and enlargement of the organ itself. His bone marrow has been aggressive and despite ongoing use of the Chemo drug Interferon, his bone marrow continues to be rev'ed up and making to many red cells. This has resulted in his bone marrow " burning out ". In 2003, his blood production had started to show signs of slowing down and while this is good in some respects it is also a fear of the marrow becoming so fibrotic it cant produce blood properly. This sooner or later leads to being transfusion dependant which is never a good thing.

Throughout the course of his disease, Chris has had several set backs. Due to the high viscosity and volume of his blood, in addition to his platelets becoming sticky Chris suffered well over a dozen TIA's ( Transient Ischemic Attacks - mini strokes ) in addition to several CVA's ( Cerebral Vascular Accidents - strokes ). Some of the brain damage is permanent while he has recovered from others. All strokes have effected his cognitive ability as well as his short term memory center. To date, Chris has made great strides in recovering, but still has damage that he will never be able to overcome including left side deficit problems, inability to solve simple math problems, loss of coordination between the left and right hands, loss of short term memory skills and word usage problems. He will still stutter and stammer on occasion when weak or tired but has overcome the majority of his speech problems. Chris does a wonderful job of hiding his cognitive deficits by avoiding contact with the outside world on " bad days " and allowing people to see him only on his good days. Before the strokes, Chris was an extremely high functioning individual with a very high IQ which accounts for his frustration and agitation on some days when trying to deal with simple problems he once completed with little thought. While he lost a great deal of his short term memory, the sad part for him is his long term memory is still in place and he can remember everything he used to be able to accomplish. Overall, he has adjusted well to his " new self " and on most days he remains positive.

Click on the Links below to read:

The Cruel Effects of Strokes ( Chris' Comments )

Chris Speaks about his Disease

 

The Caregivers
Jeniffer " the vampire " does weekly blood tests on me at Sr. Brockmyre's office. No matter how hard I try and stir her, I can't ever seem to get her upset.:) These Nurses are smiling because I am to drugged up to talk. Taken just after my bone marrow biopsy at Seattle, Actually they are part of the    " Green Team ". I am assigned a team of specialists at Seattle and this is my nurse team that will always look after me when I am Seattle.
   

Sarah is also one of my vampires at Dr. Brockmyres office. I do believe she thinks I am a bit nuts and I try heap tons of harassment on her whenever I can. She really is a sweetheart.

  Dr. Deeg at the Hutchinson Center in Seattle is my lead Doctor. A hematologist / Oncologist, Dr. Deeg is rated as one of the best Stem Cell Transplant specialists in the world

 

         The Doctor extraordinaire who oversees my treatment plans - Dr. Andrew " Homey " Brockmyre. One of the best family physicians I know and a great friend. He is also a St. Johns, MI native and a big MSU Spartan fan. My Tennessee Oncologist Dr. Sue Prill When I need to see an Oncologist at home, Dr. Prill handles my needs.
   
 
 
Brenda handles my Phlebotomies at Wellmont Regional Hospital. She always has a smile and a hug for me.