The role of PE information in your loss

A place for those bereaved to receive and offer support
4evermyangel
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Re : The role of PE information in your loss

Postby 4evermyangel » Wed Mar 11, 638607 11:42 am

Thanks Elanie, I had sent you an email last week and I guess this explains why I hadn't heard back...lol.

You've got mail!

eleni
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Re : The role of PE information in your loss

Postby eleni » Mon Mar 09, 638607 6:21 pm

If ANYBODY has contacted me via my profile in response to this post, know that we've been having technical problems with those emails and I probably haven't received it. Please email me directly at eleni.tsigas@preeclampsia.org.

thank you.

eleni
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Re : The role of PE information in your loss

Postby eleni » Mon Mar 09, 638607 6:17 pm

Annointed - sending warmest wishes to you for a "boring" last few weeks and hugs for our shared memories.

Amber - can you pls email me directly to talk? don't use the profile emails - we're still having technical difficulties with those. eleni.tsigas@preeclampsia.org

thanks!

sckitzo
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Location: Cedar Rapids Iowa

Re : The role of PE information in your loss

Postby sckitzo » Tue Feb 03, 638607 5:57 pm

I was having a perfect first pregnancy, I had low BP and every appointment went perfect Until.... I went into my 29 week appt, had an ultrasound, everything was perfect. Over the next week I noticed that my hands, face and ankeles were swelling. Over the next month I placed 11 calls to my obgyn asking if this much swelling was normal. I basically got the response your pregnent your gonna swell. So I never went in until my scheduled 33 week appt. My OB took one look at me, took my urine sample sent me to L&D with no explanation. In L&D I was told I was there for a two hours observation, which turned into induction two days later. Lucky for us we had a perfectly healthy 3.3 pound girl. Fast forwad, 1 1/2 years later, I had spent nearly everyday on the Preeclampsia forums soaking up all the info I could. Makeing a very educated dicision we got pregnant again. All was perfect again. Until...23 weeks 1 day I was in the shower at home, and my ankles looked the slighted bit puffy but I had no other symptoms. I called into my OB and was told that it was normal, and to rest with my feet up. There was no need to go get checked out. Because of these forums and all the knowledge here, I now know that it is always better to get checked out. So Against the nurses advise I went in. In the first nurse who I talked to did not want to even take my BP B/C she thought I had no reason to come in. With much arguing they finally did a workup. I was admitted 1/2 hour later with Severe PE. On 23weeks 5 Days I went into seizures, and had an E c section. 5 Days later the hospital was trying to release me from the hospital, but I did not feel right, and I had many of the symptoms that I had learned about on these boards. I refused to leave the hospital. That night I got the PE headache back, then was DX with Post partum PE and Hellp. I ended up having three strokes. I was another 5 days before I could go home on bedrest. But this knowledge saved my life. Unfortunatly It did not spare my son, who died after fighting for 27 days. I am forever grateful for this foundation. Sorry alot of history, to put in a breif overveiw.

annoited
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Re : The role of PE information in your loss

Postby annoited » Wed Nov 26, 638606 12:05 pm

Eleni,
I just saw the date you lost your daughter and it brought chills to my body... I lost my Ella exactly 10yrs after the loss of your daughter. I was just sending DH an email telling him how i remember checking into the hospital this same time last year not knowing my faith and not ever having heard of PE... and to be told that delivery of a 23wks5d baby was the only option to save my life, yet i held onto to faith hoping all will be well with my baby soon as she came into the world. We lost her on the 23rd, she was indeed a fighter.. my only consolation is knowing that she is in a better place!! My angel Ella - the 2days she spent on earth gave me a new meaning to life. The void can never be filled... I am currently 34wks pregnant and i'm grateful for having the gift of life in me again!!!

eleni
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The role of PE information in your loss

Postby eleni » Fri Nov 14, 638606 10:42 pm

I have to admit I have a love/hate relationship with this particular board. I love that there is so much support for one another during what is probably the toughest thing you'll ever have to go through, I love that in some small way this place can help your healing; I hate that we even have to have this section, that there is so much life-sapping grief out there during a time we should be rejoicing with you.

I know.

We are getting ready to do our annual Spring Appeal letter, where we ask our friends and supporters to help the Preeclampsia Foundation continue its important mission. These letters are most effective when we can tell a real-life story to help people understand in a very personal way, just how important this cause is. And, of course, we have to be brief!

We'd like to profile a story this year that expresses the deep emotion of losing a baby, but also touches on the impact preeclampsia awareness had on your situation. For instance, at 29 weeks, my daughter had a really good chance of surviving (and a later autopsy showed she was otherwise healthy) had an undiagnosed, preeclampsia-induced, placental abruption not taken her life before an emergency c-section could rescue her. In retrospect, there were signs and symptoms as early as two weeks earlier that should have directed me to the doctor's office and had my health care providers responding more aggressively to the symptoms I DID report. I had known nothing about preeclampsia and never been informed about the signs and symptoms.

We know that my situation is far from unique. Our 2008 awareness survey demonstrates as much. http://www.preeclampsia.org/pressroom/c ... id=8165050

So, despite the grief and agony you are living in right now, if you would be willing to share your story publicly, in writing, and feel that the lack of PE information in some way contributed to your outcome, please contact me.

Please forgive me if this request in any way offends you... grief is a crazy beast and there's no telling what is the right or wrong thing to say to somebody who's hurting. 10 years out on the "healed" side of this trauma, I can tell you that time and love and support helps; but in a good/bad sort of way, the hole in your heart will never completely heal.



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