ITP does not discrimate when it strikes its next victim. It affects the young and old, rich and poor all over the world. Dealing with this blood disorder is no easy task. The fear and frustration of not knowing where the roller coaster will take us next can be daunting.

This blog is for ITPers to express thoughts, feelings and lessons learned during their ride. Send your post to We want to hear from you.

Thursday, August 9, 2012

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


  1. Lisa we are definitely ITP sisters. I too have ITP and heart issues. I feel I am on a teeter totter over flaming hot lava!!!

    1. Linda - thanks for sharing! That is a great description but you forgot to mention the juggling flaming torches :)

  2. You realy do have a balancing act there! Would be nice if something could be found for both issues.

  3. Dear Lisa, Linda and Hap,
    Believe it or not your comments helped me at this point. I was just diagnosed with A-fib and had TWO bouts of ITP - one at 31 and the 2nd at 68 (I'm now almost 71). I have excellent care in Dallas, but when the Cardiologist called today he prescribed a baby asprin until he sees me again in 11 days (I wore the Holter monitor for 48 hours). How have your physicians balanced the need for the blood to clot (ITP) and the A-fib? I'm off of the steroids (Thank goodness), but wonder where I'm going next!! Right now, I'm scared as I have too much that I want to do. Lisa, I, like a true Southern gal, believe in Scarlet O'Hara when she said "Oh, well, tomorrow is another day." Blair

    1. Hi Blair - I guess for short term baby asprin would be ok. I'm not a doc but I was on a daily aspirin 325 mg dose before I got ITP and the hema thinks the aspirin may have been a contributor. I'm currently taking warfarin and so far so good. I'm scheduled to have the cardiac ablation next Monday so hopefully that will work and I'll be off everything soon!

    2. Dear Lisa - thanks for responding. I wrote you a long reply which disappeared from my computer. The short is that I've had ITP twice (at 31 and 69) and have had Afib about 2 months (I'm almost 71 and active). I have excellent medical care in Dallas, but it's not like talking to someone "in your shoes." Please call me and I'll call you bacl on my $$. (972) 803-4144. I'd love to hear from anyone else in our same situation.
      Blair Wehrmann

    3. Hi Anonymous
      My Mother has Chronic ITP. Has had it for years. Recently she was diagnosed with A-Fib (wonder if there is a link between the 2) She has also been diagnosed with TIA for several years which leads the Drs to beleive that she has had A-Fib for years and has just been lucky but with her history of TIA (mini stroke) she is HIGH risk for stroke. He Platelets are currently 62. Friday she will undergo her first (of a set of 4) Chemotherapy treatments with Rituxan (medication that destroys B-Cells so the immune system stops killing her platelets) She needs to have this done so her Platelets rise above 100 so she can have the blood thinners. Doesnt make much sense to raise the Platelets with one drug and then thin the blood with the other but her Hematologist said that thinning the blood is in a different way then dropping the platelets. Does anyone have any experience with this type of therapy ?

    4. Hi Virginia,
      Thanks for commenting on this blog post. Have you been to They have information about everything relating to ITP and forum groups that may be able to help you. You may also want to join some of the Facebook ITP groups such as Purple People. I hope you can get some answers to your questions through these sources.

  4. Forgot to check the Notify me button on the first post