Essential Thrombocytosis

Hi there. Just read your message about your premature birth.

I was diagnoised 10 yrs ago with Et, platlet count ranging from 600-1000. I am now 40. I had a baby 16 months ago and my pregnancy was treated as normal? when it should have been treated as high risk!, anyway thats another story i'm taking up with my lawyers. My pregnancy seemed normal until i had my daughter, she was born at 38 weeks, weighed 6 pounds, which isn't that bad, but quiet small for our family. Usually the babys born in our family are around 8-9pounders. 48 hours after she was born her blood glocose levels went down to 0.4, which is death. She stopped breathing and the doctors had to resus her back to life. She had 15 sezures all in a few hours and was placed on antisezure meds and had to be put into an induced coma. She was in neonatal intensive care for 8 weeks as the doctors had to wait for her BGL to be normal. She came out of this completly normal and is a healthy normal little girl, thank god!

While this was going on with my daughter, i got a pulmonary embolisim (clot in the lung) when she was 3 weeks old and still in neonatal intensive care. The clot in my lung nearly killed me and i was in intensive care for 5 days. Placed on warfarin for 6 months. Now i just got another clot in the lung. I will need a VQ test in a few days, i'm home, but scared! doctor advised i will need to stay on warfarin for good now, bugga!

I believe my preganncy sould have been considered HIGH RISK. I should have been placed on heparin while pregnant, this would have helped with my placenta working properly and would have prevented any clots in me. I've read a high platlet count, while pregnant, can cause problems with the placenta. That's why my daughter came out with a BGL problem, she was starving inside me and because your milk doesn't come in till day 3 this made her even more hungry and it caused her BGL to drop to a very dangerous low level. In my oppinion,  The reason why miscarriage is high in patients with ET is because a high platlet count stops the fetus getting all the nutrients it needs. 

There is so much doctors need to learn about ET and its affects in pregnancy. I'm wondering how many women out there have the same story as mine?

Would love to hear how it does with you.

Thanks

Jodiemarie

Hello Pam!

 My name is Jo. I was diagnosed 10 yrs ago with essential Thrombocythemia when i was 30, i'm now 40. Only symptoms i have had are the visual disturbances and headaches every now and again. My platlets have ranged from 600-1000. But my doctor never thought it nessesary, (is that how you spell it)? brain block :) to put me on any meds due to my young age. However, i had a baby 16 months ago and 3 weeks after i had my daughter i got a massive pulmonary embolisim (clot in the lung) that nearly killed me. My platlet count, at the time of the clot, was 850 per microlitres of blood, which is high. I was placed on heparin and warfarin for a period of 6 months. About a month ago i got another clot in the lung, but it was small, thank god!. I'm going to have another VQ scan on wed 14/2 to see whats going on in my lung. My doctor "Hemo", wants to place me on warfarin for good now, bugga, hate that, but what can you do. My hemo said we must manage by blood every couple of months now and the warfarin should keep clots from happening again. I asked if this will affect my life expectancy, she said, if we can keep these clots from accuring again, then i should live a normal life expectancy. It's bloody terrible having this ET, to me it's like a time bomb ready to go off, but my doctor puts me right by saying it's managable with medication. I don't want anything to happen to me because i could never leave my babies. I have a lot of faith in my doctor and plus i've studied heaps on the subject. I can live to 90 and so can you if its managed.

God bless!! would love to hear from you!

Take care

Jo

On 5/8/2006 Ckaren wrote:

My daughter passed away on April 13, just shy of her 32nd birthday. She had ET. ET is caused by Factor V mutation of the DNA. She also had Factor 2 defiency. Leslie was diagnosed in July of '03 after her spleen was removed-it weighed 10.5 lbs. She spent a month in the hospital and had a bone marrow biopsy to diagnose and treat her deep vein thrombosis. She had solid clots in the hepatic and mesenteric veins. After 3 years the clots had been somewhat cannibalized, but blood flow was still very limited to her liver. ET effects all of the body. On April 1 she went to the emergency room with Reactive Arthritis, caused by a virus that she couldn't clear because of the spleen removal. While in the hospital, her INR was allowed to fall very low and perhaps she threw a clot to her liver. Her liver ruptured and required 3 emergency surgeries to stauch the bleeding. She was transfered to a teaching hospital, with reknown doctors. She required another surgery for her liver, which stopped the bleeding completely. However, she had received over 90 units of blood products and her body just couldn't take the stress. She developed kidney failure and threw a clot to her heart. She died of a heart attack. I know this is a long message, but PLEASE keep very dilligent track of your INR and platlet levels. The effects of ET may strike in an unusual way. Hematologists are very knowedable and skilled, but they see many patients and it is easy to fall through the cracks. Be your OWN best friend where it comes to your health. Read on the internet about the Factor V and Factor II and be tested. I cannot begin to express the heartache that losing my only child has caused. She leaves behind a husband and 2 beautiful children, 9 and 5, who will never feel their Moma's arms again.

THank you so much for your message RE; your daughter... I am 35 almost 36yr old female with ET with Jak2 mutation- considering having a child... but don't know if I should even try....sounds scary...we def. all need to be praying for one another- thanks to everyone who posted :~0

I just turned 48 and about 4 years ago I had mesenteric veins that had clots and they had to do bypasses on them. I am on warfarin now for the last year. My platlets range from 500to600 the hemotaligests did a bone marrow byopsie and other tests and found that I have a factor v and protein c def. Now they did the jak2 test on me yesterday and it takes 2 weeks for it to come back . he is looking for disorders. It is scarry for me because they have know clue why my blood test also comes back abnormal.

On 5/5/2007 Bjindc wrote:

 

On 5/8/2006 Ckaren wrote:

My daughter passed away on April 13, just shy of her 32nd birthday. She had ET. ET is caused by Factor V mutation of the DNA. She also had Factor 2 defiency. Leslie was diagnosed in July of '03 after her spleen was removed-it weighed 10.5 lbs. She spent a month in the hospital and had a bone marrow biopsy to diagnose and treat her deep vein thrombosis. She had solid clots in the hepatic and mesenteric veins. After 3 years the clots had been somewhat cannibalized, but blood flow was still very limited to her liver. ET effects all of the body. On April 1 she went to the emergency room with Reactive Arthritis, caused by a virus that she couldn't clear because of the spleen removal. While in the hospital, her INR was allowed to fall very low and perhaps she threw a clot to her liver. Her liver ruptured and required 3 emergency surgeries to stauch the bleeding. She was transfered to a teaching hospital, with reknown doctors. She required another surgery for her liver, which stopped the bleeding completely. However, she had received over 90 units of blood products and her body just couldn't take the stress. She developed kidney failure and threw a clot to her heart. She died of a heart attack. I know this is a long message, but PLEASE keep very dilligent track of your INR and platlet levels. The effects of ET may strike in an unusual way. Hematologists are very knowedable and skilled, but they see many patients and it is easy to fall through the cracks. Be your OWN best friend where it comes to your health. Read on the internet about the Factor V and Factor II and be tested. I cannot begin to express the heartache that losing my only child has caused. She leaves behind a husband and 2 beautiful children, 9 and 5, who will never feel their Moma's arms again.

 

THank you so much for your message RE; your daughter... I am 35 almost 36yr old female with ET with Jak2 mutation- considering having a child... but don't know if I should even try....sounds scary...we def. all need to be praying for one another- thanks to everyone who posted :~0