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HELLP Syndrome...My story

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here

HELLP Syndrome...My story

Postby tob » Sat Sep 24, 2011 07:18 pm

by tob (2 Posts), Sat Sep 24, 2011 07:18 pm

I suffered a class 1 HELLP syndrome. I was working at a major medical center in NYC. When I was 26 weeks pregnant I had ocular changes and I started to swell. I had pitting edema but no other s/sx of preeclampsia HELLP. Having a nursing background I went to my physician a couple of times between week 28 and 30 and asked for labs to be drawn to see if I was developing the disorder but everything came back normal. My blood pressure was WNL, (within normal limits) and I had no protein in my urine. On my 30 week visit I had gained 8 pounds in 2 weeks.....my OB was concerned. He had labs drawn and my blood pressure was 160/90. I was sent to the L&D unit. My pressure normalized and they sent me home and said I can resume normal activities and to follow-up with my OB on Monday. I went up to the local drug store and purchased the best blood pressure machine they carried. I sat on my couch all weekend and took my pressure every few hours. I lied on my left side and listened to classical music. I was trying to buy time b/c I had a feeling I was going to develop preeclampsia. By Sunday evening I had a terrible headache. My BP was 160/100. I was admitted to the hospital and put on bed-rest. I was giving steroids and closely monitored. I was on bed-rest four days. The night before I went into HELLP I suffered terrible insomnia. I became extremely anxious and couldn't sit still. I started to have the worse pain I ever felt and I became extremely sensitive to light. My OB came to see me at 5am and drew labs...they came back normal. By 11am I knew something terrible was happening. I went to the nursing station and insisted they call my OB and have him come see me right away. He came and sent me for a stress test. He drew more labs. At 3pm the team came in to see me and said we need to take the baby....I had developed HELLP syndrome. My son was born at 330pm and weighed 3lbs 3oz. He spent 5 weeks in the NICU. I was recently found to have a clotting disorder ( low protein S and PA1 mutation). My suggestion to anyone who has suffered from preeclampsia and HELLP syndrome is to get a 2nd and even a 3rd opinion and see a hematologist. Be your own advocate and if something doesn't feel right speak up!! I was fortunate b/c I had a doctor who believed me and took all my symptoms very seriously. Don't be afraid to see another doctor if your physician doesn't believe your symptoms. I am now 8 weeks pregnant. I am taking 2000mg of CA, Vitamin B6, Vitmin B12, MG, extra folic acid, Baby asa and lovenox injections. I will hope for the best!!
tob
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Re: HELLP Syndrome...My story

Postby Lee2011 » Sun Sep 25, 2011 12:30 am

by Lee2011 (30 Posts), Sun Sep 25, 2011 12:30 am

Didn't want to read and run. Am sending all my positive thoughts to you that this pregnancy goes smoothly - keep us updated.

**HUG**
Mother to baby boy Lee born 12/3/2011 after emergency induction at 38weeks following diagnosis of severe atypical HELLP syndrome. Having come within hours of losing both our lives every smile is a celebration.
Baby sister Paige c-sectioned at 38 weeks with no signs of HELLP :)
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Re: HELLP Syndrome...My story

Postby blythe » Mon Sep 26, 2011 10:50 pm

by blythe (3060 Posts), Mon Sep 26, 2011 10:50 pm

Welcome! I'm glad you found us but sorry you had to! Thank you for sharing your experience and congratulations on your new pregnancy.

One of our moderators, HeatherJ, also has the PAI mutation, you can search her posts for more information or shared experience.

I wish you a quiet and uneventful pregnancy, we're here to cheer you on if you're complication-free, and we're here to listen if you hit any bumps. Hang in there!
Heather, mom to
#1 7-18-03 - 5#8oz 37 weeks PE/PIH
#2 8-11-06 - 6#14oz 37 weeks PE/PIH
#3 9-10-09 - 5#10oz 37 weeks PE/PIH
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Re: HELLP Syndrome...My story

Postby flowerwife » Sun Jan 15, 2012 09:09 pm

by flowerwife (2 Posts), Sun Jan 15, 2012 09:09 pm

my story is so similar. developed pre-e at 32w and put on hospital bed rest. developed HELLP at 33w and delivered at 33w1d. my daughter was 3lbs8oz and spent 3.5 weeks in the NICU. i also have known PAI-1. i was on lovenox and baby aspirin entire pregnancy. in the hospital before i delivered they switched me to heparin. i partially feel this may have been why i developed HELLP. i also have PCOS and conceived with IVF which are known risk factors for pre-e.
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