HELLP Syndrome (my story)Posted On Thursday, August 04, 2011 by lkw787 |
I didn't get pre-eclampsia, instead moved rapidly from eclampsia into full-blown HELLP that gave me a stroke, ruptured my liver, and put me in a three-week-long coma from which the doctors were not certain I'd emerge. I was blessed with world-class medical care, completely paid for by my Union-provided medical insurance. I also had amazing friends and family who helped care for our infant daughter, so that my husband could be with me every step of the way, advocating on my behalf. Now, more than a year later, I am finally finishing up cognitive therapy and re-testing to qualify for my driver's license again. I am blessed because my daughter and I both survived (she was delivered by emergency C-section two weeks before the due date) and I had amazing union-provided health insurance & world-class medical care. I just wish that more doctors were educated about this and that my OB had monitored me more closely as we approached my due date. I am convinced that the blood thinner I decided to inject (at the advice of a reproductive immunologist) enabled me to carry my daughter and ensured her healthy delivery. |
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wow
Posted On Friday, August 05, 2011 by Tricia what an amazing story! good luck on ur continued road to recovery! Â |
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connection to RA?
Posted On Thursday, September 01, 2011 by lkw787 Thank you! We have been blessed! Â I am convinced that injecting lovenox (something I did at the advice of a reproductive immunologist) enabled me to carry baby Sarah almost to term. Â TWO DAYS after ceasing the lovenox, HELLP hit. Â I wonder if any research supports the use of lovenox to help prevent the onset of HELLP. I also seem to be developing Rheumatoid Arthritis now (a year later) and am wondering if there is a connection. Â To treat it I am taking low dose prednisone, and doing water aerobics. Â RA runs in my family (my Dad has it.) Â I want to know if there is a connection to RA and HELLP as well. Â Thanks for any and all feedback! Â Lisa |
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REALLY WANT TO DO SOMETHING TO HELP "give back" and am having a hard time finding support
Posted On Wednesday, October 12, 2011 by lkw787  Hello everyone, Prior to nearly dying of HELLP I was a TV (film/avid) editor who led a very independent and wonderful life. I loved my job, my husband and extended family and friends, however had a lot of sadness over losing three (naturally conceived) pregnancies and having none of the fertility treatments work out. I was blessed to survive the worst class of HELLP Syndrome that hit last March, 2 weeks before my daughter's due date (2 days after ceasing the blood thinner injections I had put myself on at the advice of a reproductive immunologist.)  HELLP did a horrific number on my body, brain and soul (see above)... My health benefits have lapsed though luckily am covered thru my husband still and the support group I started (and moderated for 3 years while trying to find a donor) do not understand the trauma I've been thru and say completely clueless things. "You should be happy.  Look at the bright side.  You survived." To fill this gap I tried to start my own HELLP Survivor support group.  Two women RSVP'd "yes", then 1 of them cancelled last minute.  The woman who showed up described a pregnancy and symptoms completely different from mine.  (It was as if we were describing completely different illnesses.) She suggested that we open the group  up to include husbands.  DH and I agreed, set another date, but then she cancelled at the last minute. (I speculate that she found the topic too painful to discuss even in a supportive setting.) Thus I am currently feeling SO ALONE. Anyone live in the San Fernando Valley (LA county) and want to join a support group hosted out of my home?  We could meet once a month...NOT to dwell on sad things but merely to share our stories and give/get the emotional support and information we need. As when moving on to DE IVF I found the support group GREAT because it made me realize I was not alone, not a freak, in good company (the other women were so smart, beautiful and accomplished).  I would like to begin to feel "ok" again and help others do the same. If interested, email me off board: dressagequeen42@gmail.com Thanks,  Lisa  |
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DIET DID NOT CAUSE MY HELLP SYNDROME DISASTER.
Posted On Wednesday, March 07, 2012 by lkw787 Reading the story about weight gain and Pre E, featured on the home page of this website today, made me want to comment: I was vegetarian for the ten years prior to conception, a woman who never smoked and was underweight when I conceived (I had lost fifty pounds  by attending Weight Watcher's meetings and following their "points" system in the year prior to getting pregnant and had actually gotten to the point of being "too skinny" (according to my mother in law.)) Also, during my pregnancy I did both prenatal yoga and swim aerobics every week, until a low amniotic fluid scare in my fifth month put me on bed rest. So the HELLP Syndrome I got was in no way brought about by poor lifestyle choices or lack of discipline, assumptions many people in the health care field (I discovered) seem to make. I am convinced that genetics collided with pregnancy to give me HELLP Syndrome.  I gained the normal, "healthy" amount of weight while pregnant.  My OB weighed me every visit and expressed no concern whatsoever about the weight I gained (about forty five pounds during the duration of my pregnancy, most of it during the third trimester.)  Post HELLP (coma, liver rupture,etc) I was more underweight of course, since getting nourishment thru a feeding tube will do that to you (In an attempt at humor I call my weight loss during that period the "coma diet.") Now I fight a desire to battle the PTSD from HELLP Syndrome with sugar and caffeine, which I try to limit.  Have resumed riding horses, yoga, and swim aerobics. I still don't eat red meat,smoke, nor drink (can't drink alcohol since it would conflict with Keppra, the anti-seizure medicine I am slowly being tapered off of.)  I do look forward to one day savoring small glass of red wine (said to be good for lowering cholesterol, also yummy.) Good luck to all.  Lisa |
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DID ANYONE ELSE INJECT LOVENOX DURING THEIR PREGNANCY?
Posted On Monday, August 20, 2012 by lkw787 And if so, do you feel it made a difference? I injected it daily until a week before the scheduled C-Section and two days later I nearly died of HELLP. Â I can't help but wonder if there was a connection, but no one seems to know... Thanks ahead of time for feedback! Sincerely, Â Lisa |
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