HAYLEY'S ITP JOURNEY
In December of 2011, at the age of 32, I was diagnosed with
ITP, immune thrombocytopenia, a blood disorder.
ITP often with no known cause and occurs when your immune system
mistakenly begins destroying platelets that are needed to make your blood clot.
A normal platelet count is 140,000-300,000. Mine at time of diagnosis was
5,000. This meant that I was at a high risk of internal bleeding that could be
hard to stop even with medical intervention. There is no test to determine the
cause and determining a treatment is often a process of trial and error once
more common causes such as cancer have been eliminated. The first line of
treatment for me, and most, was the corticosteroid, prednisone. A drug whose side effects are body and mind
changing but works for most at suppressing the immune system and thus stopping
the body’s ability to destroy platelets. When my platelets began to drop as I
tapered off of the prednisone, it was decided I would have my spleen removed.
After my splenectomy I developed a life-threatening blood clot in my portal
vein that was treated in the hospital for 2 weeks as it was difficult to
monitor keeping my platelets high enough that my blood would clot, yet being
treated with IV blood thinners and monitored closely to attempt to dissolve the
portal vein clot. It was then determined through further blood testing that I
also had a blood disorder known as APS, antiphospholipid syndrome which means
my immune system also attacks the normal proteins in my blood and causes clots
to form. All of this occurred during the first 5 months of being diagnosed.
These conditions, along with many other health issues that I’ve endured as side
effects and symptoms of them, have cost me and my family lost time together
while I’ve spent what has added up to months of time spent in hospitals and
clinics for testing, procedures and treatments including, but not limited to
chemotherapy even with the absence of cancer. I am currently lucky enough to
have been in remission from ITP since April of 2013.
2015 brought both hope and challenges related to my ITP
diagnosis. Thanks to the success of the
previous year’s Hope for Hayley 5K I earned a membership status with the PDSA
that helped send me to the annual PDSA conference in Nashville, Tennessee. I had the opportunity to meet a lot of great
support people, other people with similar health issues and experts that were
working to find a cure. Following that I
was asked by the American Society of Hematology to join 1 other ITP patient on
a panel with doctors, who are experts in the area of ITP, to rewrite patient
guidelines for diagnosis and treatment. In December 2015 I went to Florida to
meet with them and begin the planning process for the guideline. The day after
I returned from Florida I went into the hospital in Ames for an esophageal
bleed. They were unable to get the
bleeding under control and I was rushed to the University of Iowa Hospital
where I was intubated and placed in a medically induced coma. Thanks to the
physicians and staff at U of I, as well as 17 units of blood products and an
experimental procedure, I was able to recover.
After recovering from this I had monthly endoscopies to monitor the
areas that had bled slowly working up to every 3 months, then 6 months and now
after 3 years since that incident I am finally having them yearly.
This will be my 5th Pump It Up For Platelets 5k to benefit the PDSA. This organization has played a big role since being diagnosed with ITP not only by helping me find the right doctors to treat me, but also in being able to connect with others in similar health situations.
PDSA is a 501 (c)3 organization.
Contributions are tax deductible to the extent of the law.
PDSA is eligible for corporate matching programs.
PDSA receives NO federal funding.
