4 years on and still impacted by HELLP

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

4 years on and still impacted by HELLP

Postby tessadodwell » Sun Jul 17, 2011 10:25 am

So here’s my story…
I was at 31 weeks gestation when I went in with pains in my lower abdomen – it was my husband’s 40th birthday – so being whisked into hospital put a dampener on celebrations ! They thought nothing of it at first, then the bloods & urine came back & pre-eclampsia was suspected. I was thankfully transferred to another hospital with a specialist unit - **** UK. It is to them I owe my own & my daughter’s life. After 5 days I had put on a whole stone of extra fluid and had ever increasing blood pressure. It was about 7pm on 7th March 2007 that I started hurting on my right hand side & said something lame to my nurse like – it’s a bit painful. After 5 days, my nurse had got to know me and knew my pain threshold was high so she knew to react. Within 15 mins, I was down in intensive care & it was there I deteriorated quickly. It was a bit of a blur in there – remember rocking back & forth from the pain & remember a lot of Drs around my bed and some panicked calls for Magnesium Sulphate injections (to prevent seizures). After only 3 hours I had an emergency c-section at 10pm. As the surgeon sewed me up he said the placenta was within half an hour of being fully detached so I was very lucky to have my precious 2lb 9 baby who was whisked away to special care before I got to see her. I did not see her then for 3 whole days. The night that followed the surgery was surreal – I knew something was wrong as I had a nurse by my bed the whole night just watching me – she was refusing me water and providing ice cubes as a substitute. It is now I know, I had severe Class 1 HELLP – they kept the epidural in for platelet transfusion. My oxygen saturation was low so some specialist came to check out my lungs and my liver was obviously playing up! I had a huge bruise develop – the entire of my abdomen was black & blue. It was relatively quickly that physically things improved and after 3 months I was back to “normal” regarding blood, urine & bp measurements. What has amazed me though is how much the event has impacted me mentally, emotionally & relationship-wise. I think about it most days and feel like I haven’t yet got closure. I know how close we both came and what a slight change in decision making or timing could have meant. I am really keen to talk to others who feel similar.
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Re: 4 years on and still impacted by HELLP

Postby jenprzygoda » Sun Jul 17, 2011 07:54 pm

Well is was 2 years in May for me and I still have trouble with the whole thing - I still think about it everyday!. I was at 36 weeks, with no stay in the hospital ahead of time. I had the bad pains in my side and my husband made me go to see my doctor. They sent me straight to the hospital to be induced and rerun blood work. A half hour after the blood was drawn they came in telling me that I was going in for an emergency c-section under general anesthesia. We were so lucky that my son was just fine, while I had an awful time for the next few days. I too had the same expereince that first night where the nurse never left my side. She kept adjusting the IV's and checking things all night - that is when my family realized how bad it was (I was to out of it to really know what was going on). She even pressed the button for my medication every six minutes because I could move my hands since they were so swollen. Oh, just thinking about it hurts. But that is it - I still think about it. It has had a greater impact on me than I ever thought childbirth (or as I like to say I didn't give birth since I wasn't there - I was gutted like a fish and had my son ripped out of me) could. I knew for quite a while how lucky I was since I was the one who got so sick, but it is just recently that I have realized how lucky we were that this was caught in time that my son was ok. If my husband hadn't insisted that we go to the doctor, what would have happened to my son? As for relationships - my husband wants another and I don't think I want any more children. I don't think he even realizes how lucky we are that my son and I are ok. I think that the way he dealt with the situation was that he never fully realized just how serious things were. I want to share this with him, but I can't talk about what happened without crying, I just get so emotional about it. Do you have other children? Do you too feel that others don't understand you and the way you feel? This forum is great - people here really understand!
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Re: 4 years on and still impacted by HELLP

Postby tree » Sun Jul 17, 2011 09:03 pm

Welcome, and sorry you had to find us here. You had a rough time with HELLP. I had it at 35 weeks, so I consider myself sort of lucky after spending a lot of time on these boards in the last two years. It has had a lasting impact on me. We all experience it differently, and I have found these unique perspectives on a shared experience to be really helpful. In addition to the boards here, I also spoke with a counselor a few times. We didn't focus too much on HELLP, but it was still really helpful. She talked me into meeting with my doctor again. I came away from that meeting absolutely certain that I wasn't ready to get pregnant again, but that I would be in the next couple of years. That was really reassuring for me and my husband. I also finally physically recovered from HELLP at about the same time. Staying healthy for almost a year has also done wonders for my mental health. Nearly dying is scary, and I think it is pretty uncommon to come away from a traumatic pregnancy/delivery without some issues.
Keep talking about it. Unfortunately, we have all been there, and we are here for you now.
Daughter born April 2009 at 35 weeks due to Class 1 HELLP
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Re: 4 years on and still impacted by HELLP

Postby tessadodwell » Mon Jul 18, 2011 02:42 pm

Really great to have an opportunity to talk to others who really understand this - thanks for the responses. We had always planned on 2 kids but we took a long time getting pregnant with Ellie (4 yrs) and after the horrendous close call with HELLP for both Ellie & myself, we were so happy to have "got away with" one healthy baby. I had a 6 month check up when they spelt out the risks were high for a repeat issue should I get pregnant again and that I would need to go under close monitor the moment I was pregnant. It was too big a sacrifice for us to go for another with the chance of either losing a child or a mum for Ellie so we decided to stop on one. My husband had quite a few chats with the staff at the time and knows how close we got to death so it is his choice as well as mine that we stop. Could not face it again. Must be really difficult if the views about having kids again differ. Have you got anywhere close to having a conversation about it with him? The tears do get less - I still cry on the anniversary though when I am supposed to be celebrating her birthday! Have tried counselling - as have now developed fear of getting pregnant - but my fear is so intrinsically linked to HELLP that it was difficult for the counsellor to understand! Hence why I thought I'd try this forum.....
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Re: 4 years on and still impacted by HELLP

Postby Lee2011 » Wed Jul 20, 2011 09:12 am

I just wanted to say **HUG** and that I'm here if I can help.

Its only been 4 months since I first heard of HELLP (viewtopic.php?f=85&t=42655); but I've yet to find a counsellor or medical person who really understands; my Obs consultant was superb at saving our lives - but is now more interested in the medical mystery that was the nerve damage! I know that every persons experience with HELLP is different but I guess what we all share is the thoughts of how things could have turned out very differently!
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: 4 years on and still impacted by HELLP

Postby lilysmommymindy » Tue Jul 26, 2011 10:48 pm

3 years on August 28th since my battle with HELLP, the impact is incredible, I think about it often too. Getting involved with the PF's Promise Walk this year was a really powerful experience and was a healing experience. I've also found that sharing my story and chatting with others on these forums to be incredibly healing as well. It's crazy how something can change your life so dramatically so quickly. Welcome to the boards!
Mindy
Mindy

DD#1 Lily Adrianna: 8/28/08 Born 36wks 0days due to Class 2 HELLP Syndrome and Severe Preeclampsia via csection. 4lbs 10oz 17in
Fortunate to have a healthy baby and mommy, no NICU needed.

DD#2: Tatum Nicole: 8/6/10 Born 39wks 5days Scheduled CSection Preeclampsia and HELLP FREE!
7lbs 3oz 20in
Took Baby Asprin between weeks 20-36 and was co-monitored by MFM & OBGYN
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Re: 4 years on and still impacted by HELLP

Postby bubbyzlove » Mon Aug 08, 2011 10:39 pm

I had HELLP Syndrome 6 years ago Sept 23rd and have never been the same. I did not have pre-eclampsia at all. I went from elevated blood pressure for several weeks (controlled by BP meds) straight to severe HELLP Syndrome in a matter of minutes. Thank God I was already in the hospital on bed rest and I had a pic line in place. My BP hit 225/156 over a few minutes time and my liver was incredibly swollen. OB did an ER C-section. I delivered at 34 weeks and my son was 4lbs 10oz, apgar 9/9. He stayed in NICU for a month and was released b4 me (he did great with no problems). When I woke up in the recovery room I was in the same excruiciating pain I was in prior to the spinal tap. Again, thank God that my OB recognized I was in HELLP. Over the next few days I worsened: my liver crushed my rt lung & it filled with fluid, I was on a respirator breathing at 100% for me, both kidneys failed, retna separated in my left eye, heart enlarged, etc. I had multiple plasmapheresis transfusions & blood transfusions along with kidney dialysis for a month. I was on standby to be air vac'd to a nearby hospital for a liver transplant. Thankfully my liver started to function again on day 4, slowly. I have NEVER known pain like that (well over a month all the time). My belly was larger after I delivered my son than rt before delivery. My whole body was huge & they were pulling 10lbs of fluid off me each time they did dialysis. My family & friends did not recognize me. The drs had my husband call my family in b/c they thought I would die. My family lives in LA & we are near Cincinnati so they had to fly in....problem was that a major hurricane hit our hometown the same night so my family was evacuated & spread out in different states trying to get to airports to get to me. My brother & his family were hit by a drunk driver the night they were traveling to see me (thank God they weren't hurt but the drunk driver died). I stayed in ICU for nearly a month then TCU. I had 9 specialists attending me. When they discharged me home they forgot to wean me off the morphine so I ended back in the hospital with severe dt's. Later, drs discouraged us from ever getting pregnant again since I had no room for margin. We sought 6 different opinions & all said I probably would not live thru the next pregnancy so we are blessed to have our one and only son. I had to have in home help for the 1st few months at home. And since the HELLP, I have suffered with a multitude of severe symptoms. It has taken 6 yrs but the drs have now discovered that I have primary AND secondary adrenal insufficiency combined (secondary from damage to pituitary during blood loss and primary for same suspected reasons). I also was diagnosed with autoimmune thyroid disease, severe fibromyalgia, a rare migraine disease called hemiplegic migraines that cause me to have stroke like symptoms without the stroke, new unexplained widespread edema and new elevated diastolic pressure (still investigating the new heart symptoms). I'm unable to work & at times unable to get out of bed depending on if I'm in an "episode". My adrenal medication & thyroid meds have been a huge help but I'm nowhere near close to being the person I was prior to the HELLP. It is hard to find people who have been through the HELLP who have the ongoing severe health issues. They did a case study on me and we plan on having the drs include the long term affects in my case study. Despite all my health issues, I can honestly say that I feel so blessed to be alive & be with my amazing son and husband. My husband switched careers & became a nurse - pursuing nurse practioner degree - in order to care for me better. I thank God daily for literally saving my life & my son's (my drs said I am a walking miracle & still make comments when they see me). I wouldn't trade one moment of it! God has given me so much in my family, friends & great drs too. It is hard to persevere thru the ongoing health issues but I remember that there is always someone worse off than me somewhere. I have a lot to be grateful for! Sorry this was so long (I actually left parts of my story out too :P ). I pray each of you heal from the trauma both physically and emotionally!
Tressa
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Re: 4 years on and still impacted by HELLP

Postby surfergrl5726 » Fri Aug 12, 2011 11:23 pm

Lee2011 wrote:I just wanted to say **HUG** and that I'm here if I can help.

Its only been 4 months since I first heard of HELLP (viewtopic.php?f=85&t=42655); but I've yet to find a counsellor or medical person who really understands; my Obs consultant was superb at saving our lives - but is now more interested in the medical mystery that was the nerve damage! I know that every persons experience with HELLP is different but I guess what we all share is the thoughts of how things could have turned out very differently!



I am intrigued that you had nerve damage, I had HELLP aswell and had mysterious nerve damage to my retina, which effects my vision. The doctors dont really know exactly how it happened. Where was your nerve damage?
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Re: 4 years on and still impacted by HELLP

Postby LizzieF » Tue Nov 08, 2011 10:56 am

I can't say it better than some of the others who have posted a reply to your message, Tessa; yet again, I come to this site after avoiding it and I end up in tears and nodding my head in agreement. It's been almost a year for me (I was admitted to hospital on Nov 15th, 2010 with HELLP, but my results kept fluctuating so broadly that the emergency C-section didn't happen until everything went haywire on Nov 25th--the day I hit 35 weeks and my daughter's birthday--she's healthy and happy, thankfully!). I still have vision issues because of my detached retinas, but other than that I'm healthy. Like so many of you, I think about my experience, my 3 days in the ICU, not being "present" for my daughter's birth or even meeting her until she was 2 days old, how close to death I came....It scares the * out of me. Although everything is fine and I have so much to be thankful for, I do have moments of painful recollection. I'm trying to look forward, but sometimes the trauma of it just pops into my head. I guess time will heal. It's good to know that others are feeling this way. Hugs to you all...
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