September 8, 2016

Essential Thrombocythemia / Hydrea Update

Hello everyone, wanted to post an update.

I am doing okay, the 6 HU pills per day (3000mg) have done the trick and my platelet count is down to 650,000, which is great for me.

But, now I am having an issue with my heart.  I may have had a mild cardiac episode and my heart lining could be damaged.  I am going to the cardiologist on Monday.  I will post an update.  Anyone else have any heart issues while on Hydrea?

I turned 40 this year.  This year will be 6 years that I've been living with E.T.  Going to the hematologist every three months to check my platelet count.

On a personal note, our oldest started college this year.  Time goes by so quickly.

I hope this post finds everyone doing okay.

Take Care,

March 31, 2015

Essential Thrombocythemia Platelet Count Update

I am so sorry that I have not updated this blog in a very long time.  I have had so much going on with my five kids, etc.

I graduated from college with my AA this past December and I am working towards my Bachelors and Master's degrees.  My youngest child entered Kindergarten this school year and it has allowed me time to pursue my dream of finishing my education.  I want to become a high school English teacher.

I am feeling ... okay.  My platelet counts are still in the 750,000 which is not great, they have increased my Hydra to 3000 mg (6 pills a day).  I also still take a baby aspirin everyday.  The good news is that I tend to be symptom free as long as my count does not go over 900,000.  My platelet count has not reached 900,000 in over a year.

The greatest symptoms I experience when my platelet counts are high are the following:  pins and needles in my hands, feet and on the top of my head and also I become very fatigued.

I try not to let my chronic illness control my life.  I try to block it out of my mind.  The times that it bothers me the most are when I become very tired and when I put those 7 pills in my hand everyday at 37 years old and of course when I go to the doctor.  It never gets any easier getting stuck with a needle for blood draws.  I thought it would get easier over time but it still hurts and I dread it every time.

I am often scared when I think about the future because my illness began in my early 30's and I don't think it's ideal to have to take Hydra for the next 40-50 years.  But then I think about and the future holds no guarantees for anyone, whether they're sick or healthy.

I hope everyone is doing well and I will try to update my blog more often.

Take Care - S.

July 30, 2013

Essential Thrombocythemia Update & Platelet Counts

It's been a really long time since I updated my blog.  It's been a busy time for our family.

Essential Thrombocythemia Update:  At my doctor visit two months ago, my platelet counts went down to around 500,000 so the doctor said I could reduce my Hydrea dose from 5 pills/2,500 mg to 4 pills/2,000 mg every day.  It was not a big reduction but I was excited. The break didn't last long, at my next months doctor appointment my numbers went back up to 650,000!  UGH!  So my dose was put back to  5 pills/2,500 mg of Hydrea everyday and two baby aspirins everyday (it really helps with the pins and needles I experience from the E.T.)!

Overall, I am okay, my main side effects are fatigue and paresthesia (pins and needles).  Most of the time I don't even think about my illness.  It only hits me when I take my medications at night and at my monthly doctor appointments.  It really never gets any easier being stuck with a needle.

Next week we are taking a family vacation to Hilton Head, South Carolina.  We are all very excited to have some quality family time!  We're meeting up with my husband's side of the family for a family reunion.  The kids are very excited to see everyone. Packing everyone and driving for many, many, many hours with five kids, my husband and I are not so excited about but it will be well worth it.

The kids are keeping us busy, we are gearing up for a new school year in a couple of weeks.  We will have a high school student, middle school student, two elementary school students, and a Pre-K student at three different schools!  Also, I am going back to college in the fall, it's been a long time but I am very excited to further my education.  It will be a busy year but I really will try to do a better job at keeping up with this blog.

The best thing about my blog, is that while I wish E.T. on no one, I am grateful to feel not so alone with my illness.

Thank you for reading and I hope everyone is doing well.

Take Care -

March 8, 2013

E.T. New Doctor - Be Your Own Advocate

It's been a while since I've had time to post on this blog.

I started seeing a new Hem/Onco doctor, I like him much better than my last doctor.  I don't feel dismissed when I have questions, I feel like I get more than my fifteen minutes worth so to speak.

I am still on Hydroxyurea (HU), 2500mg a day (5 pills each day), although at my last appointment he said I could try to take 4 pills a day twice a week.  I also take two baby aspirin everyday to keep my thick blood from clotting.

The HU still makes me very tired but so do the five kids.  I have learned to deal with exhaustion, I try to take walks and find ways to relax.  Taking time for yourself is key to managing the exhaustion.  Even if it's just a long hot bath and a cup of tea, it really helps.

I am no longer taking Aggrenox (blood thinner med), just the baby aspirin.  I still experience some pins and needle sensations from time to time, especially in my hands, arms and the top of my head.  My new doctor seems to think it's a side effect of the HU meds.

Every week is different.  I am past the freaking out stage now that I am 2 years into dealing with the Essential Thrombocythemia (ET).  I have become more aware that the meds are just a part of my life now.  It use to really freak me out that in my thirties I have to take so many pills every day.  My pills are just a part of my nightly routine now.

My every two month doctors appointment and every month blood draws are the times when it really hits me that I have a lifelong disease.  The hardest part is just worrying about the future and what is going to happen with our health care system.  I think about how much these meds cost and it's scary.

Today, I am feeling okay, my platelet numbers were 450,000 at my last appointment and that is the lowest they have ever been since I was diagnosed in January of 2011 with ET.

I hope that all your good days out number your bad days.

Take Care - Shayna

August 7, 2012

Essential Thrombocythemia Update - Hydroxyurea

It's been a long time since I updated my blog, life is very busy these days with our five kids.

I have been taking 2000mg a day of Hydroxyurea (HU), one pill of Aggrenox (aspirin & blood thinner), and one Iron pill every day for about the last year.  The best my numbers have ever been was about 500,000!

My last blood test showed my numbers were 850,000!  It's very upsetting to be taking HU, a drug with many side effects and not see real results.  The only good news is that the pins and needles, parathesis, has not returned with my high platelet count.  I only had one issue with the pins and needles and it was at a time when my stress was through the roof!!

I am currently trying to get an appointment with another hematologist/oncologist to get another opinion.  Surprisingly enough, HU, even with all its side effects seems to be the medicine that has the least side effects.  I am told that the Pegasus injections cause flu like symptoms, etc.  I am looking forward to meeting with the new doctor and getting his opinion.

My biggest concerns are that I could have a major stroke, my Essential Thrombocythemia could progress into Polycythemia Vera or Myelofibrosis or that I could develop a form of Leukemia.  

Most of the time I try to forget that I have a chronic illness, an illness that will NEVER go away.  I have many days that I feel fine, but every day I have to take six pills and they remind me of my illness.

It's hard to look fine on the outside but feel exhausted and sick on the inside.  It's a lot of work for your body to pump two times the normal amount blood through it, everyday.

Thank G-D, I have not had any hospitalizations since last August.  I will post again after my meeting with the new doctor.

I hope everyone is doing well.

October 9, 2011

Turning Three Years Old - Upshern

Our son, our baby, turned three years old last week!  He is really growing up fast.  We're having a party for him today to celebrate his birthday and we're finally going to cut his hair!  YEAH!

Some people in the Jewish religion, wait until a boy turns three years of age before they cut his hair.  Once they turn three they throw a birthday party/haircutting ceremony called an Upshern:

Once his hair is cut, he puts on his kippah and tzitzit.  Our son's hair is almost to his tush, it's long, curly on the bottom and dirty blond.  Once we cut his hair it will be short and probably all brown but most of all it will make him look like a big boy.  I don't think I am ready.

The days are long and the years fly by! 

He is our fifth and last child.  With four sisters, he has more "Mommys", than he knows what to do with.  He is one of the most loved little boys on the planet.  He is also very spoiled, his poor wife will be very upset with us one day.  LOL!

We hope that this Upshern (haircutting ceremony) will one of many, many more joyous occasions in his life. 

We love you Y!  You're a sweet, little, handsome, friend and pal.  You make us HAPPY every day!

Happy Birthday to our sweet baby boy!

- Shayna

September 9, 2011

In Hospital - Blood Clotting, Chest Pains, Aggrenox

I was in the hospital two weeks ago for about three days. 

It all started when I was at home and I started feeling some sharp pains in my chest.  I felt the first sharp pain, it lasted about a minute and I thought it's probably heartburn and I was going to let it go.  About ten minutes later I felt another chest pain, also lasting about one minute and I thought this is odd.  Then right after the chest pain subsided, I felt a horrible pain in my left arm and another chest pain followed shortly after.  Thank G-D, my Mom was visiting and I told her what was happening and then I threw up.  My Mom said just to be sure we should call an ambulance and rule out a heart attack.  I then explained that if it's not I am going to feel really stupid, maybe I should just lay down for a while.  My Mom then SCREAMED, if you are wrong you will feel really DEAD which would you prefer?  We called an ambulance.

The paramedics came in and did a twelve lead EKG test which came back slightly abnormal so we went to the emergency room.  They said they needed to keep me over night in order to complete a full cardiac workup.  Which included every test under the sun, an IV (which was never needed) and they drew blood from me every hour (or at least it felt like that).  I stayed for almost three days because they need to draw  blood three times at different times of the day to test your blood enzymes to rule out a heart attack.  The cardiac doctor came on day two in the hospital and said all my tests looked fine and that whatever was going on was not cardiac related.

For information about signs of a heart attack, please visit this website:

The chest pain stopped shortly after I got to the ER, of course.  But the left arm pain and left leg pain never subsided.  The pain was there the whole time I was in the hospital.  On day three in the hospital my hematologist / oncologist came in to see me.  He said that the leg and arm pain were due to my blood clotting from my Essential Thrombocythemia (Blood Platelet Disorder).

I am still going to be taking my Hydroxyurea (HU) 500mg, three times a day and now I have to take a new medication called Aggrenox, two time per day.  Aggrenox is a blood thinner and aspirin all in one, so far I have not experienced any side effects. I am still exhausted, which I am still positive has to do with the Hydroxyurea.  Still the exhaustion beats not taking the HU and my platelet level rising so high that I have a major stroke.

The following links are for anyone looking for more information about Hydroxyurea or Aggrenox:



Please remember that I am not a medical professional.  This is just my experiences with my illnesses.  If you're not feeling well, you should see a medical professional, ASAP.

Also, all my kids have been passing a cold around (school is back in session) which made it's way to me and flared up my Asthma.

Hopefully, everyone will be feeling better by next week.

I hope all is well with everyone.

Take Care -  Shayna

August 18, 2011

Update on Summer, Essential Thrombocythemia - E.T. and Meds

I am so sorry that I have not posted since July!  It has been a crazy summer to say the least.
All five kids stayed home this summer and I was the acting cruise director.  UGH!  The kids actually did pretty well.  They spent time with their grandparents and we went on a lot of day trips. 

Thank G-D for my oldest daughter who helped me a lot with the kids this summer!  I was able to do my work thanks to her help.  We did some special one on one things together when Dad was home.  She is really growing up into a beautiful young woman.

My hematologist/oncologist said that he wanted to give me a solid two months before he checked my blood again to determine whether we can start weening off the Hydroxyurea (HU).  I will be going to the Dr. next week and I will post an update.  (I am wondering if he wanted to wait for two months because he knew the kids were going to be home and I would bring them in with me?  Hummmmm LOL)  Meanwhile, the HU is still making me so tired.  Also, my teeth are starting to have a lot of problems.  I am wondering if this is a side effect of the meds?  I never really had any issues before my diagnosis with Essential Thrombocythemia.

I hope everyone out there is doing well and I will start posting regularly soon!  The kids go back to school on Monday!   =)

- Shayna

July 5, 2011

Caylee and Casey Anthony

I had a feeling that Casey would be found not guilty of murdering her daughter Caylee. 

The state of Florida could only prove to the jury that she was a party girl and not a good person, not that she was a killer.

I believe she did kill her daughter and I believe the jury also knows that she killed Caylee.  Although, without hard proof you cannot convict someone of murder.  There was no cause of death, etc., that left room for reasonable doubt.  The jurors are probably sick to their stomachs.

The whole thing is sad, sad for the Anthony family but most of all sad for a little girl, who, at two years old, was killed, probably by someone she loved and trusted.

Going to go hug and kiss all of my kids and say a few prayers for baby Caylee.

June 17, 2011

Hydroxyurea - Update

I went to the oncologist (I still can't believe I have an oncologist in my 30's!) last week and my platelet count is still high 650,000.  5,000 less than last month but not a great improvement.  He was hoping to be able to decrease my Hydroxyurea (HU) or see how I fared without taking the meds all together.  Instead, I need to stay on my 1,500 mg (3 pills) per day of HU, 1 baby aspirin per day and 1 Iron pill per day!

I told the doctor that all five kids will be home with me this summer, (no summer camp here, we are just trying to keep up with the bills), and he said I don't have to come in for another two months.  LOL!   =)

Hopefully, in two months time, my numbers will have come down enough to reduce my dose of HU!  I really don't want to have keep taking a chemo drug for 40 years!  The exhaustion is a lot to handle when you are trying to raise five kids.  Actually, scratch that, I think it would be a lot for anyone to handle.

No matter how I feel:  exhausted, overwhelmed, scared ...  the thing I feel the most is, BLESSED!

I am ALIVE!  I am with my family and while annoying, this is a disease I can live with for many, many years - Please G-D!

I will posts more updates soon.  I hope everyone is doing well!

- Shayna