The Caregiver Perspective                 by Peet Sööt         10/21/05          page1   

It was the same illness but seen through the eyes of the caregiver.

My wife, Aldeane Sööt, has survived a bone marrow transplant (BMT) that cured her
myelodysplastic syndrome (MDS).  Three calendar years - filled with a lifetime of
experiences - left me with a desire to share it with you and others who may have to
travel a similar path.  There were many legs to this journey, from diagnosis to finding
a donor, to moving to Seattle for the transplant, to going through the transplant, to
recovery at the clinic and to coming home for what turned out to be an extended
recovery.  Even the extended home recovery consisted of increments when the first
taper off of the immune suppressant drug (cyclosporine) was not successful and
Aldeane had to sink back into another 9 months of restricted life style.  The restricted
lifestyle stems from the patient's compromised immune system while taking
cyclosporine, requiring that the patient almost develops a sense of paranoia from
exposure to infection sources  - like the general public.

Given the long journey that we traveled, I have broken it down into segments so that it
might be easier for you to follow.  These are all macro-elements that are easy to
define after the fact.  When you are in the middle of the struggle you only focus on
making it through the day, or reaching the time for the next meal, or administering the
next dose of medicine, or simply seeing the hour hand pass another digit on the dial
while you wait for the longed-for improvement.

Diagnosis

Lessons learned by the Caregiver during and after the diagnosis:

   what the word "commitment" means as I applied my mind, body and soul to
the task of helping my soul mate through the ordeal of a lifetime,

   how  daunting the tasks seem when you have never taken this path before,
but how fulfilling it is to complete the tasks - even if it is a minute task such as
preparation of a schedule for taking medicines,

  that I was blessed with parents who insisted on acquiring medical insurance
so that finances would not be another stress added to the total picture (even
if the insurance costs keep one from having a  vacation or other non-
essential thing in life), and how helpless one feels while the local
hematologist performs a bone marrow aspiration  with only local anesthetic.

This last lesson should never have occurred.  After finding that conscious sedation
reduces the discomfort of an aspiration to almost nothing, I could only gnash my teeth
over the way Aldeane suffered as the local hematologist ground the tool into her hip.  
My failing is that I have never contacted the local doctor to enlighten him that there is a
better way of performing this procedure rather than the medieval approach he took.
Caregiver Perspective