Essential Thrombocythemia

A lot of people have been asking what is going on, and some people are just to shy/polite to ask, so instead of telling the same story over and over again I am just going to type it all out :) Last summer I went to the Doctor and they had me do blood work because I was pregnant. The lab results came back saying that I had high platelets; the average person has between 150,000 and 400,000. My platelets were at 800,000 which was more than double that of the average persons. Since my OB had no idea what was going on, he sent me to a hematologist (blood/cancer Dr).

That first visit was so nerve-racking, going into the cancer center at the hospital not knowing really what was going on, can we say panic :). We met with the hematologist and he said that since I was pregnant all of the tests I needed couldn't be done because my hormones would throw off all of the results. So all that was left to do was monitor me and make sure my platelet levels didn't go up, and I was told to take a baby aspirin daily to help prevent blood clots. I went once a month between August and February and my platelets fluctuated between 600,000 and 850,000. I also had to go to a maternal fetal medicine specialist and have ultrasounds done every month to make sure that Kenna was growing and that I hadn't developed blood clots in the umbilical cord. Thankfully there were never any issues while I was pregnant, and besides lots of Dr's visits every month and taking an aspirin, nothing happened.

When I went into labor they checked me again, they needed to make sure I wasn't at risk for bleeding to death during/after labor. I was at 850,000, and thankfully I bled the normal amount and everything went good. The Lord was def watching over me. All of my Dr's were hopeful that somehow my pregnant hormones were causing the high platelets, and my hematologist said he wanted to see me when she was 2 months to see where my platelets were at.

When Kenna was 2 weeks old Brandin and I were sitting on the couch chatting after the kids were in bed, and out of nowhere my foot turned blue and a huge knot formed on the top of my foot. We panicked and took the kiddos to our bishop and went to the ER - thank goodness for the amazing Bishop Hernandez family :). They confirmed that I had a blood clot in my foot, but thankfully none anywhere else. The blood clot in my foot was not life threatening, so they sent me home.

I called my hematologist the next morning and went in to see him. They checked my platelets again and I was now at a million. They concluded that this was clearly not linked to the pregnancy and there was something else causing the issues. My hematologist was not entirely sure what was going on, so he referred me to the hematologist that all of the hematologists in the area go to if they have any questions. He is a renowned expert located at the Huntsman Cancer Institute in Salt Lake, so we started our weekly treks to Salt Lake.

I had a good amount of tests done, including a bone marrow biopsy (ouch! It hurt so bad I couldn't even sit up on my own for a week and Brandin's mom had to come help out with the kiddos) to determine that I have Essential Thrombocythemia, which is a bone marrow disease. This disease is extremely rare - only about 1 in every 150,000 people are diagnosed with the disease every year, the disease also is typically only found in those 65 years and older. They are, however, starting to find that women in their 20-30's have it as well. It is a life long disease that is not curable but treatable.

During my first appointment, in Salt Lake, blood test showed that my platelets were now at 1,300,000. This high level put me at very high risk for blood clots in the legs and lungs, which could lead to heart attack, stroke, and brain aneurysms. The treatment I was prescribed is a form of chemo called Hydroxyurea (it is not an IV, it's 2 pills I take every day). I started treatments this week and so far so good, no extreme side effects - nausea, hair loss, exhaustion, ulcers on my legs. . etc. - although they could take a while to show up, for now I am super lucky cause for the most part all is good. I go back in a week to see if the chemo is working at all.

Overall we are doing great, we are very thankful to be living in Utah right now, to be able to go to this hematologist, who's life work is on my specific disease. I am also very grateful that so far insurance has covered everything, so we are not going into crazy debt trying to get the help that I need. I am also so happy that Brandin's teachers have been so supportive by let him turn things in late when he needs to. Overall we are very hopeful and feel at peace with everything.  :)


Update. . . I had my 2 week follow up after starting chemo and my platelets have dropped to 700,000 (wa-hoo) which is a ton better than where they have been the past couple months. We are hopeful that they will continue to drop :)