LIVING LIFE WITH ESSENTIAL THROMBOCYTHEMIA

AN INCURABLE DISEASE

My name is Kanetta and I have Essential Thrombocythemia (ET).  Essential Thrombocythemia is a disease where there are too many platelets in the blood.  Platelets are in everyone’s blood.  You need them to survive.  Blood platelets are the components that will create a scab after a person scrapes or cuts themselves.  If you had no platelets, you would probably bleed to death from a simple accident.

When I was first diagnosed I had over a million count and the normal is not over 400 count.  If not controlled, the platelets can stick together, clot, travel to the heart and lungs causing a stroke or heart attack.  They can also build up in the liver and spleen, resulting in death.  I am writing this to let other people who have this disease know that they are not alone.  They put Essential in front of Thrombocythemia because they don’t know how anyone gets this disease or where it comes from.  When I was first diagnosed I tried to find information on this little known and rare disease and could not find much.  I do know that there is no cure.  My oncologist is very involved in the research to find a cure.  When my illness was first diagnosed, one of the things I really wanted to know was how other victims of this disease have coped and if there was any light at the end of the tunnel.  I can tell you right now that there is a light and you can make it as bright as you want it to be.

My disease was first diagnosed in November, 2005 and at this writing it has been 4+ years.  Prior to my diagnose I was a happy, energetic, busy real estate agent.  Always on the go.  I started experiencing a burning sensation on the tips of my fingers and toes.  This would come and go.  The really awful symptoms were the pain and aches in my leg muscles.  It could happen if I was walking or sitting.  It felt as if I had been on a treadmill or a bicycle for hours at a time.  The pain was almost unbearable.  This would also come and go.  I never knew when I was going to have one of these attacks.  I can remember one incident when the pain was so bad that I had to lean up against a store front at the mall.  A sales lady came up and asks me if I was okay.  I knew the pain would go away in a little while if I could just sit down and rest.  Sometimes I would experience spots in my vision.  The spots were like very bright lights that were blocking out part of my sight.  Most of the time it looked like I was looking through a jagged piece of broken glass.  One time when I was at my office, I looked down at a document that I had been working on and the whole inside area of the paper looked like a bright light with a jagged circular pattern around it.  Throughout all these symptoms, I had gone to doctors continuously to find out why I was having these symptoms.  They did not think there was anything wrong with me.  One doctor told me that my age may have something to do with it.  On my own I went to an optomologist to see if perhaps something was going on with my sight.  I had seen him at least twice before, but on this visit he told me that he thought I could be having migraine headaches without the headache.  He showed me a paper that he said pictured what people saw when they had a migraine.  It did look somewhat like the spots I had been seeing. 

I ended up in the emergency room on two different occasions when I fainted.  Once in a convenience store, where thank God I was with my husband and the second time was at home with my family.  At the emergency room they did a brain CAT scan.  Everything came up normal.  No one could give me an answer to anything. 

I went for my yearly appointment for my mammogram and they found a small area of cancer in my left breast.  It was located very close to the skin and the doctor said he could cut it out and there should be no problems with my breast.  I went to the hospital for my surgery where my blood was drawn and tested.  The day of my surgery, my doctor came out and told me that I had an elevated blood platelet count of over 1 million.  They almost did not do the breast surgery, but after a telephone call and an okay from my future oncologist, the surgeon performed the operation.

I made an appointment and went alone to the oncologist and I was not worried in the slightest.  I thought he would probably just give me a pill and all would be just fine.  I really didn’t think anything was wrong with me.  The cancer was gone from my breast and the worst part was over.  How little did I know!

He examined me, looked at my chart and then asks me if I had any loved ones with me because he wanted to talk to me and he wanted them to come into the room to be with me.  I told him that I had come alone.  He proceeded to tell me that I had a disease called Essential Thrombocythemia (ET).  I had too many blood platelets.  He said that they can stick together in the blood stream and create clots which can travel to my heart, lungs and throughout my body.    He proceeded to talk to me but it all seemed like a blur to me.  I became extremely frightened and I ask him if I was soon going to die.  He said I was a very lucky person that they had found the disease when they did and with treatment I could live a normal life span.  Without treatment I would die of a stroke due to a blood clot.  He also said that too many blood platelets can build up in the liver and the spleen, enlarging them both.  He wrote out a prescription for Anagrelide and told me that he wanted to put me on Hydrea (generic is Hydroxyurea) but he wanted to do a bone marrow biopsy first.  My feelings at the time were that I was a walking time bomb.

With prescription in hand I left the doctor’s office and went to my neighborhood pharmacy where I was told that they did not have the medicine in stock.  They sent me to another pharmacy that was located about 15 miles down the road in another town.  It was turning dark by now and when I got into my car with the medicine, I quickly downed it with some bottled water.  I was so very scared.  I sat there for a while and thought what in the world is going on.  This was all just plain crazy!  Then I called my husband.

Since then my husband has accompanied me to every appointment that I have had with the oncologist.

After starting the medication, I felt nauseous and felt as if I was going to faint all the time.  Sometimes when I was with a client I would excuse myself to sit down.  It seemed it was like that most of the time.  After my bone marrow biopsy test my doctor finally started me on Hydrea.  I felt a little better on that medicine, but not normal.  When my blood platelets were not coming down fast enough my doctor increased the dosage of Hydrea.  When he increased the Hydrea I started feeling more nauseous and light headed, but I had to live with it.  The medicine made me anemic and the doctor ordered iron shots.  That helped some.  Eventually, my platelets started coming down and the doctor decreased my medicine.  However, since then my blood platelets have been up and down like a yoyo.  The count has been as low as 350 and as high as 825 during the last 4 years. 

The oncologist sent me over to the hospital for a CAT scan to see how my liver and spleen looked.  That all appeared normal, thank God.  When I was leaving and walking to the car my teeth started chattering.  This NOT a symptom of Thrombocythemia, this was simply my nerves.  I could not stop my teeth from chattering and I broke a tooth.  As soon as I got home I had to call my dentist to make an appointment.  I felt so drained.  This was such an ordeal.  Anyway, my liver and my spleen are okay, but now I have a brand new cap on my tooth as a souvenir.  Oh well!

I have adjusted very well with all of this and I can still do about everything I want to do.  I run out of breath easily and I can’t do a lot of vigorous exercise, but life is good.  My faith in God has helped me get through all of this and I have a wonderful husband who I love and I know loves me.  I also have a beautiful daughter that I adore.  She keeps checking in with me all the time and comes over to see her dad and me at least once a week.  Life couldn’t be better.

I am one of the lucky ones diagnosed in time.  If it had not been for my breast cancer surgery when my high platelet count was discovered, I probably would be dead by now. There are people running around out there with this disease that don’t know it, just as I didn’t.  They will probably die from a heart attack or stroke, not ever knowing it could have been prevented.  All a person needs to find out if they have this disease is to get a simple but COMPLETE blood test.  Most of the time doctors will do a blood test that is relative to the complaint a patient comes in with.  A complete blood test is the only way to find out if you have Thrombocythemia.   Next time you visit your doctor, ask him for a complete blood test and if the platelets are over 400 then start asking questions.  There could be a problem.

If you would like to learn more about Essential Thrombocythemia, then visit my Web Site:  kanetta.com.  There, you can read letters from other ET sufferers.  Some are heartbreaking and some are enlightening.  One thing is for certain with us ET sufferers, we are all in the same boat and we are fighting to stay alive.

On my last visit to the oncologist, he told me that there is a new medicine for ET and he plans to try it on me soon.  I don’t think it’s the cure we’ve been waiting for, but it should really help.  May God be with all of you, Kanetta