I’ve decided, for several reasons, to start a blog about my experience with Essential Thrombocythemia, or ET. First of all, it will help me as I try to sort things out. Being a new diagnosis for me, I am still floundering in all the new information and emotions that I am dealing with. This blog will also serve, hopefully, to help anyone else who is dealing with this disease. Comfort in numbers, so to speak…knowing you are ‘not the only one out there’ and all that. It will also be a way to update my friends and family that are asking me for updates, and help them to learn along with me.
This first post is a summary of the events leading up to the actual diagnosis. It is written in retrospect.
Back during late summer I noticed a blurry spot in my vision. Picture a window representing your field of vision. At roughly the 5 o’clock position in this window, about a quarter of the way up from the bottom, there is a blurry area. If you hold your hands out at full arms’ length, and make an oblong circle with your hands with the fingertips barely touching, this is about the size of it. When I say ‘blurry’, what I mean is that if you were to dip your fingers in Vaseline and smear them on the ‘window’ in that spot it is the same effect. Whatever I look at, in that area, appears ’smeared’. I notice it more when I am looking at something with a pattern to it. For example, grass or carpeting. When I am looking at several objects this ’smear’ is not as noticeable. I went to my doctor when this vision problem had remained for about a month. Yes, I know that is a long time to not act on something like that…at first I expected it to go away, as do other vision problems that I sometimes have, but it didn’t. So off to the doctor I went.
I have a history of level 3 Hypertension. When I was 22 I was put on blood pressure medication. During the summer of 2007, my BP got so high that my vision became nothing but rings of flashing lights. I spent 2 days in the cardiac unit of the emergency room, undergoing stress tests, CT scans, EEG’s and several other tests to make sure that I had not had a stroke. Then my medications were changed, I changed my doctor (to the one I saw in the ER), and for the first time in my adult life my BP is normal. But, when I developed this new vision problem my doctor was worried again that I may have had a stroke.
My doctor did a series of blood tests first. He checked for Lupus, MS, and some standard blood work. He also scheduled me to see an Opthamologist on September 29th and to have tests done at Huron Valley Hospital on October 2nd. I was to return to Dr. Barber (my D.O.) on October 1st.
My first visit to the Opthamologist didn’t turn up anything out of the norm. So he scheduled me to come back in a couple of weeks for more extensive testing, like Field of Vision tests. I don’t recall the date of the second appointment, and it appears I didn’t write it on my calendar, but I seem to recall it was about 2 weeks. My blood work showed nothing really abnormal, except the Lupus test showed something positive so Dr. Barber drew blood for the next level of Lupus test. He also briefly mentioned that my platelet count was very high. He drew more blood for basic blood tests as well, and I was to return to him on the 15th of October.
On October 2nd I had my first round of tests at the hospital. I had an Ultrasound of my Carotid artery, an MRI of my eyes and brain, an Echocardiogram, and they ended up having to do an x-ray of my head when they found out that I have worked extensively with metals: cutting, grinding and welding. They were worried that if I had too much metal dust in my system and they did the MRI it could cause a problem. Standard precaution, I guess. They didn’t find any results that told them the cause of the vision problems, but lucky me…they did find some other problems. They found a cyst in one of my sinus cavities, growths on my Thyroid, and the Ultrasound showed a 60% blockage in my Carotid artery. The thing about the Ultrasound, though, is that it didn’t show an actual blockage…the result came from measuring the velocity of the blood through the artery.
My next visit to the Opthamologist didn’t give us any answers, either. The tests that they did came back normal. However, he did point out that because the vision abnormality was the same in both eyes he believed that the problem wasn’t in my eyes, it was in my head. And no, contrary to the resulting jokes, he didn’t mean it was my imagination.
On my October 15th visit to Dr. Barber, he told me that the new Lupus test had come back negative. Once again my blood work was normal, but he again mentioned my elevated platelet count which was now even higher. Because of this, he told me to start taking 81mg aspirin daily. He decided to do a new round of tests at the hospital in response to the results of the first round. I had an Ultrasound of my Thyroid, a Thyroid Uptake Scan (which was a 2-day test), an MRA (which I learned was like an MRI but only showed the blood vessels) of my brain –he was still concerned about a stroke–, a more extensive Ultrasound of my Carotid and an Ultrasound of my abdomen.
So on November 11th I was back at the hospital for those tests. A few days later (again, it is not on my calendar for some reason and I don’t remember the exact date) I was back at Dr. Barber’s office reviewing the results. Once again, no Carotid blockage, the tests showed that I have non-cancerous growths on my Thyroid, and there had been no aneurisms in the blood vessels in my head. But once again, platelet count was higher. He finally said to me, “Julie, I am stumped. The only thing I can think of is this platelet count. I want you to go see a Hematologist.”
I just want to add here…I have no problem with a doctor telling me that he is stumped and referring me to someone else. I don’t see that as a sign of inadequacy, I see that as a sign of a good doctor who knows his limits and has the best interest of the patient in mind as opposed to the best interest of his ego. I don’t expect a single doctor to know everything.
I went to see Dr. Appel at Huron Valley Hospital on November 24th. At that time my platelet count was 814,000. Normal is around 250,000. Right away, Dr. Appel told me that he suspected Essential Thrombocythemia. He drew 9 vials of blood for various tests, including the JAK-2 test. I was scheduled to return to him on December 16th.
On December 16th, I learned that the JAK-2 test came back positive. I was officially diagnosed with Essential Thrombocythemia. My platelet count was also now at 863,000. ET is a rare disease – only about 1.5 people in 100,000 have it. It puts me at high risk for problems caused by blood clotting, such as strokes and heart attacks. It also puts me at high risk for hemorrhaging. My next post will give more details about the disease itself.
Usually, patients are categorized as either low-risk or high-risk. If you are under 60 years old and your count is below 1,000,000, you are low-risk. If you are either over 60 or your count is above a million, you are high-risk. My doctor has categorized me as intermediate-risk. He did so for two reasons: my count is still rising and looks as though it will quickly pass the million mark, and also because I am symptomatic. Only one-third of ET patients show other symptoms. Usually, there is no clue of a problem except for elevated platelet counts discovered during routine blood tests. In addition to the vision problem, I also suffer from heavy fatigue, muscle aches, dizziness, extreme itching over my entire body after showering and more itching than normal at other times, my hands always fall asleep on me, especially at night, my hands and feet are always cold, and often I have excruciating, burning pain in the soles of my feet when I first get out of bed in the morning. I have learned that these are all caused by the ET.
So this is where I stand now. I return to Dr. Appel on January 14th. At that time we will see if my count is still rising and we will also decide whether I will start oral chemotherapy and have a bone marrow biopsy. In the meantime, I am doing as much research online as I can and learning everything I can about this disease. I have joined a wonderful online forum about ET, and have been in contact with a local support group and will be attending their next meeting in February.
