Skip to main content

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

For more on me and my health issues please check out:

Labels:

Comments

Post a Comment

Popular posts from this blog

2020, you suck! Her introduction into womanhood wasn't supposed to look like this......

2020, what a year. It seems appropriate that Halloween weekend during the pandemic would end up being when my little girl become a woman.  Friday October 30, 2020 It started at 12:35 pm on a Friday. Halloween was the next day and my son's school was having a safe-distance trick-or-treating event that we'd been anxiously awaiting to attend. This would be the first time either of my kids were getting invited to come onto one of their campus' since the school year started. So, we were dressed in our Halloween outfits and ready for a fun filled day.  Keeping on her brave face as we rush out the door. We were rushing out the door, late as usual. Since the pandemic... we've definitely taken advantage of having a minimal schedule and being on time hasn't become our strong suit. Scarlett came running up to me whispering “ Mommy Mommy, when I wiped there was blood. ” I scurried her back to the bathroom to the assess the situation and assured her she’d be oK. " This was
Post a Comment
Read more

PSPD 101- What is Platelet Storage Pool Disorder

Hello, My name is Kari Peepe and in 2011 my daughter and I were diagnosed with a platelet storage pool disorder. After several years of researching and going online to find men sharing their stories about hemophilia, but never women talking about platelet disorders. . . I decided to start my own personal blog, A touch of Scarlett. This has become a place where I share stories about our life with a rare bleeding disorder, spread awareness and hopefully empower others to help me in the fight for a better treatment plan.  1- What is PSPD? PSPD is as autosomal inherited disorder (like Cystic Fibrosis) PSPD is a rare autosomal inherited bleeding disorder. Unlike hemophilia which is an x linked recessive bleeding disorder. Platelet disorders fall into 2 categories Qualitative (abnormal function and/or structure of the platelet) vs. Quantitative (from having too few or too many).We fall under the qualitative category. Platelets are small parts of the blood cells that help wo
Post a Comment
Read more

Give Kids the World Village. . .Go to your happy place-Scarlet's Make-A-Wish PART 5

When people say . . . "To go to your happy place". . .  I now have somewhere to go.   My name is Kari Peepe and I am the lucky parent of Miss Scarlett Peepe. . . We just got back from Give Kids the World in Florida and we are literally beaming and my jaw hurts from smiling so much from watching my daughter in a state of such pure joy for one whole week.   I want to cherish the feeling we had when we returned from Scarlett's Make-A-Wish trip . . .forever!  Scarlett was diagnosed when she was 3 years old with Platelet Storage Pool Disorder- a rare bleeding disorder which has left her with a life time of blood work, medications, restrictions and fears of life threatening situations.   As soon as Scarlett found out about Make-A-Wish, she was ecstatic but nothing could’ve prepared her or us for the experience that was about to take place and the joy it would leave in our hearts and our minds forever.   Prior to meeting Scarlett's Make-A-Wish team I had never even he
Post a Comment
Read more