Is it the ITP or A-Fib?

Lisa Cassella has 3 daughters, 2 grandkids, a dog, a cat, rides a motorcycle and lives in Middletown CT. She was diagnosed with ITP in February, 2012. Lisa works with special needs teens (autism & asperger's syndrome), has a cracked sense of humor and is a bit of a hockey fanatic (go Bruins!).  Her favorite quote: "Courage does not always roar, sometimes it is the little voice at the end of the day that says "I will try again tomorrow."

My name is Lisa and I live in central CT.  I’m a 42-year-old mom of three daughters and grandma to a beautiful 2 year old boy and a gorgeous 11 month old girl.

 I have ITP and Atrial Fibrillation.   The A-Fib has been an issue for the past couple of years and I was put on heart meds and a blood thinner.  On the morning of February 24, 2012, I woke up with a weird “rash” on my lower legs and feet.  It wasn’t raised or itchy but I had red “spots” all over me.  I made an appointment with my GP to find out what was going on.  I had to see someone different because my regular doc wasn’t in that day.  By the time I was seen, the “rash” had spread to my hands and forearms. 

The doctor I saw argued with me at first, telling me that it was an allergic reaction to fish.  I told him, “I don’t eat fish and I’m like a 3 year-old if I get some in my mouth – I spit it right out!  It is not a fish allergy!”  He really did continue on with the allergy thing until he finally gave in and said “Fine!  I’ll order a Lyme test and bloodwork – will that make you happy?” 

 I did the bloodwork and waited 4 hours for a phone call – meanwhile the “rash” was still spreading and I was starting to panic.  I called the office and was told they didn’t have the results and that I should call Monday for an appointment with my regular doctor.  Three hours later I received a phone call from the on-call doctor.  “Ummmm Ms. Cassella?  We need you to come to the emergency room immediately.  Your bloodwork results show a platelet count of less than 1.  By the way, don’t bump anything, especially your head, on your way in.” 

That was the start of a terrifying road.  The scary part of ITP is the Idiopathic – is it Latin for “We have no idea where this came from”?  I was given four bags of platelets during my eight-day hospital stay.  I received multiple infusions and massive doses of steroids.  I was bleeding from everywhere (and I mean everywhere!) but no doctor was willing to come anywhere near me for diagnosis until my platelets were above 1000.  It was determined that I was severely anemic, elevated liver levels and all my numbers were askew.  I had a number of related gastric issues including H-Pylori and an ulcer.

That was the start of my journey of ITP and A-Fib.  It is an awkward combination to treat.  The treatment for ITP is to increase my platelets so I can clot if needed.  The treatment for A-Fib is to thin the blood so I don’t clot and have a stroke.  I have blood tests every ten days or so.  More if I find a lot of bruises or petechiae.  My platelet counts have been hovering at the bottom of the normal range once I’ve weaned off the steroids and I have my fingers crossed that I will be one of the lucky ones who don’t have to struggle with constantly tanking numbers. 

It has been almost 6 months and I am trying to be optimistic.  The drawbacks are that I am constantly exhausted.  I’ve packed on 30 pounds with the help of the steroids and am just too tired at the end of the day to do anything about them.  My daughters don’t understand that I can’t do the things I used to.  My friends don’t understand why I don’t go out.  My co-workers assume that if I’m at my desk, all is well.  How many times have I heard “But you don’t look sick!”?

Is it the ITP or A-Fib?  Could be both, can’t find a cure for either