My name is Amanda Volker-Loguidice. I am a hellp survivor. I have also been recently appointed in charge of fund raising for the NJ chapter of the PE foundation.
I am in the process of gathering information on hellp syndrome and stories of survivors for the purpose of putting a book together. Please check back onto this forum for updates on the book...
This is my first post here on this forum. I'm usually just a reader. I've finally found the courage (after meeting with the NJ chapter for the first time just yesterday) to post my story...
My best friend had Preeclampsia with both her first and second pregnancies. In fact, she became eclamptic with her first. Her son, Tyler, was born at 25 weeks and is now a healthy, thriving 10-year-old. Her high-risk doc was able to get her to 36 weeks with her second, a daughter, Nicki, who is today a thriving 6-year-old with much of the spirit of her mother in her.
I found out I was pregnant a month before my best friend died. Three months after her death, on Thanksgiving night, I remember feeling the first signs of hellp; an uncomfortableness in the space right between the right and left sides of my ribs - that space where the ribs come up and meet, right under the sternum. It wasn't a pain, but it just felt like someone was pressing right there in that spot.
Anyway, that same night I had a dream in which my best friend started showing me her blood pressure cuff and saying to me, "you have to do this for me", and I looked at her and said, "ok", and went to put it on her arm. She stopped me, saying, "no, you have to do this for me." This pattern went on a couple of times. In the dream, I also noticed her labsticks were sitting on the counter.
I woke up a bit shaken from such a vibrant dream. What kept resonating in my head was the vision of the bp cuff, the labsticks, and how she kept saying, "you have to do this for me", but, apparently, didn't mean herself. That day I went out and got a bp cuff and labsticks (the same sticks you pee on in the ob's office to check for glucose and protein - you can get them at any pharmacy or have them order them). I started taking my bp once in the morning and once at night and peeing on the sticks 2 or 3 times a week from that point on.
In my 33rd week, I woke up one morning and took my bp - the night before it had been 115/65 - that morning it was 160/102 - I called my doc and she had me come in. Bed rest until 35 1/2 weeks, when, lying on my left side, my bp was again pretty high and finally there was 1+ protein in my urine. To the hospital for blood work. Monitering bp in hospital for a couple hours and sent home. About an hour after I got home, doc on call calls me and says come back to hospital, we're going to deliver you within the next 24 hours.
My daughter and I are alive today, I believe, because my best friend told me to moniter myself at home, checking my bp and urine. This was my first pregnancy. I was as healthy as a horse - eating right and exercising every day until I was put on bed rest. Had a perfect pregnancy (with the exception of that "pressing" feeling in between the ribcage.)
It is very frustrating to me that this syndrome and preeclampsia are medical mysteries. I cannot wait for the day that we figure out WHY this happens. I hope this realization happens before my daughter has children...
I have not been able to find a book out there on hellp. I've decided to write one. Please send me your story. I will give you updates as the book progresses.
Also, if you have had hellp or PE in the past and are pregnant or thinking of getting pregnant again, do yourself a favor and get a bp cuff and labsticks and moniter yourself at home. Your doctor can't be with you 24/7. Be proactive about your health and that of your baby. Just a bit of advice that might save your life. It did mine.
Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here
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