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.

Friday, June 29, 2012

I Have What?

Hap Hapner has been a part of our ITP family for a while and has shared some of his experiences with us via the Facebook ITP support group pages.

Now, we get the rest of the story....

I Have What?

That was the question that kept running through my head over and over. The doctor standing at the door to the room in the E.R. was talking to my Lady saying something about removing my spleen. REMOVE WHAT? Wait a minute, what the heck is going on here. Things were moving way to fast. So where did this all start?

The Lady in my life had been suggesting that I should be getting all those 50+ year old test done while I had the time being unemployed. So off I go into the public health care system. It all started the way any new patient going to see his/her doctor for the first time. Fill out ALL the paperwork. Who had what, did you break that, bla bla bla. Off to lab to get blood drawn. I had an appointment set for 2 weeks to get all the follow-up stuff going. The next morning I receive a call from my doctor’s nurse asking for me to come in as soon as possible. Yes, ALL of the “BAD” thoughts came up. “Great Gods, am I going to be alive next week?” What would cause the doctor’s office to call first thing in the morning asking me to come in.

My doctor goes right past “Good Morning” straight to “You need to go to the E.R. and have a platelet infusion.” I do have to give Dr. Garcia proper respect, he said all of my blood work looked great except for 1 (one) very important part, platelets. He hands me a copy of the lab report and he is right. My blood looks fine, everything hitting almost mid point on any of the scales. All but platelets.

“OK Doc, what the heck causes that and is there a pill or something for it?” What Dr. Garcia said next floored me and still does today when I think about it. He said, “I have only read about it, but I believe you may have ITP.”

I have what!” He gives me a rundown as he understands it. Well, what he understands and what I heard are two very different things. So off I go to the house (not the ER) to look ITP up. There is a lot of stuff out there if you Google ITP.

My platelet count was 3,000, way to low to be doing anything other then lying down. Using the computer, I found that almost everything I had listed on that “how do you feel” part of the doc’s form was listed with ITP; bruises, nose bleeds, fatigue. That explained a lot, but now what to do about it. Again enter my Lady. I’m told (by her) we are going to the ER and that was it. So armed with my new knowledge I got into the car. More paperwork and another blood draw and waiting. Then after hours of waiting, the ER doctor comes to the room and all I heard was “set up to remove his spleen.” Being half a sleep I freaked out! Wait a minute, remove what! I got up and left the hospital.

Being a mechanic this made no sense to me. If a part is broke, you look at it, try to fix it, and if all else fails, remove and replace. Well, no one could say “Your spleen is broken.” They could not say it’s only working at 50%. NOTHING! It took an Assistant Professor of Clinical Medicine to help me understand just what my body was doing to itself. I’ve been told at times that I can be a bit “self destructive,” but this takes it to another level.

I have discovered that depending on which doctor you’re talking to, which treatment they believe works. There is not one kind of treatment or cure for ITP because it affects each person differently.

So after being reassured by Dr. Harrington that they would try all they could not to remove the spleen, I headed back to the ER to get a steroid injection to get my count to a safer level than where it was at 3,000. So they get the count up to 27,000 after 2 injections and set up LOTS of doctor follow-up appointments & blood draws and send me home.

I’m still learning something new about ITP every day. My body does something different or I read it here on the internet. So far Prednisone seems to be the only thing to keep my numbers up, but the price the body pays for that are HUGE! I’ve done IVIG and did get a nice boost (short term) in numbers. Right now I’m going thru Rituxan treatment, one treatment a week for 4 weeks. Then it will be weekly blood draws for 4 weeks, then twice a month and see where thing level out.

It’s all “Wait & See!”

1 comment:

  1. I don't know how long the Rituxan will last, but after doing the 4 weeks worth of treatments I am feeling better. Now to get the "Predisone" weight off and somewhat back to a normal.