Nancy's Update

Needless, to say I never made it to my appointment.  I got to wait for AAA to show up 35 minutes after calling them.  They changed the tire to my spare and then I got to go buy a new tire.  Oh goody....Dr. Nakamura was very understanding and was able to squeeze me in today.  Still having automobile problems following the blow out...  So I almost didn't make it there today either ..     not sure why but now the car is at the dealership being checked out.   

So, when I finally did arrive at City of Hope today, my blood pressure was higher than it has ever been in my entire life.   They weren't too concerned but, I'm sure if it's high again next time, they'll be conducting some tests or something....

The good news is that my counts remain stable.  My white blood count dropped, but Dr. Nakamura wasn't overly concerned about it.  

WBC           3.2  (normal 4.0-11.0)

RBC            4.04  (3.8 - 5.2)

HGB            12.7  (11.5-15.5)

PLT             108 (150-350)

All the other counts and chemistries are in normal range.  Although, i finally got my iron or FE (ferritin) count from last year and it still remains astronomically high at 1547 (normal 10-291).  These levels are a direct result of over 200 blood transfusions in 2006.   It's coming down ever so slowly; it used to be over 2000.  He keeps an eye on my liver and other counts to make sure the FE isn't damaging organs.  So far, so good.  A few years ago, we toyed with the idea of bringing down my FE levels using prescriptions.  Going through my insurance plan, the prescription would cost me thousands of dollars each month!  Well, that wasn't a viable option.  Then Dr. Nakamura said he can phlebotomize me, which means I would basically donate blood which would be thrown out because i'm no longer able to donate it to anyone.  This procedure would slowly help bring down my Fe levels.  At that time, my counts weren't high enough to perform that procedure safely.  Now, he's not too concerned.  So, I won't be either.

I'm experiencing a little more skin gvhd than I had in previous years.  Dr. prescribed some steroid cream for it.  If it doesn't clear, he was going to prescribe oral steroids.  I told him I really didn't want to take those again unless it was absolutely necessary.  He totally understood.   

The family is doing well.  Scott graduated from CSULB in December with his Mechanical Engineering Degree and has been working since graduation in the oil and gas industry.  Andrew is pursuing his Bachelor of Science in Nursing and will start his clinical segments this Summer.  Mark is working very hard and will be going on a Missions Trip with our Church to Kenya where he and two other dentists will be providing dental care in Nairobi for two weeks.   They have to take their own dental supplies so it has been an effort trying to prepare for this trip.  

I will post about the Bone Marrow Transplant Reunion coming up next month at City of Hope.  Always a time of appreciation and reflection.  

Thank you for checking on us.  We always appreciate your thoughts and prayers...

love, nancy