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When life threatening situations become more life threatening . . . .

A recent trip to the oncologist and hematologist left me feeling a little defeated and scared about things that could go down in the future. I suddenly was finding out something as little as a tooth extraction or other major dental work would require a platelet transfusion and something life threatening suddenly was  . . .  "more life threatening!"  I'm supposed to see my oncologist quarterly to alternate between given mammograms or the Dr performing breast exams.  My sister and first cousin were both diagnosed with breast cancer when they were in their mid to late 20's and I'm considered to be a high risk candidate.  My oncologist has been trying to convince me to take the BRCA gene test since before I got pregnant with my second child. . . But after talking to my husband and discussing how big of a hypochondriac I am, we decided to hold off on taking the test until after I was done having children.  Now here we are, 3 1/2 years later . . .  and I'm finally ready to take the test.  Being proactive is the best way to deal with having Platelet Storage Pool Disorder and I am thankful that the Dr's at Kaiser are proactive enough to take initiative but have let me follow through at a pace I feel comfortable with.
They are sending me to a genealogist in San Francisco over the next month to go over a plan once I've taken the test.  I've screamed, cried, and stayed up worrying about taking these tests for too long and I'm ready to find out what my future beholds.  It's obvious just from the conversations I've had with my oncologist and hematologist thus far, that we will have to take a lot of things into consideration before making any drastic decisions if I come back positive with the BRCA gene.  Normal preventative measures (like a hysterectomy or a mastectomy) aren't obviously on the top of the list for ways to prevent cancer because Kaiser doesn't want to willingly put me under the knife for fear of my bleeding disorder. . . . And I've heard most chemotherapy's thin out your blood, another things Kaiser wants to avoid if possible.
This is where being diagnosed with a rare bleeding disorder like ours makes things difficult. . . everything is a guessing game.  We have to assume the worse in most situations so that we can be better prepared, yet there's no proof the plan will work.  I get frustrated sometimes because I feel torn between convincing myself Platelet Storage Pool Disorder is a mild bleeding disorder that doesn't put my life in danger . . . . to the realization that if I were to get diagnosed with something like cancer, it could be more life threatening because of my bleeding disorder.
My Dr's have been wonderful and supportive in all decisions being made about me and my daughter and I appreciate all that they are doing . . . I hope through spreading the word about Platelet Storage Pool Disorder and hearing more stories, we all can become more educated of this rare bleeding disorder.
Written by,
Kari Peepe

©KariPeepe/atouchofscarlett.blogspot.com
http://atouchofscarlett.blogspot.com

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