Did you know it was happening?

This section is for discussions with other women who have probably been through the same signs/symptoms that you may be experiencing. Please note, we cannot offer medical advice and encourage members to discuss their concerns with their doctors. New members, come on in and introduce yourself!
crocusgirl
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Re: Did you know it was happening?

Postby crocusgirl » Sun Dec 19, 2010 01:10 am

I figured it out because I read the PE section of "What to Expect" and remembered the symptoms (I also knew of someone who had very severe PE).

My story (short version): Because I read the PE section of "What to Expect", I figured out my swollen face (and swollen rest of me) was a bad sign. Took BP at a pharmacy when my face swelled up at 31 weeks. It was 155/100 on 3 times on 2 different machines. I called my midwife, and that night (Saturday April 17) I was admitted to hospital and given BP meds which helped stabilize my BP and also steroids for our baby. They thought then I might be able to go home Monday to bedrest, but by Monday it was obvious that my PE was severe and I was not going anywhere. The goal was to keep Violet inside until 34 weeks, but it was a day-by-day thing. I was spilling protein like crazy and had high BP (140/95 on average) but other than that I felt "fine". Never got a headache, no abdominal pain, no eye problems...just swelling. I was moved Monday night to the Women's Hospital, and the doctors were very surprised that I didn't look "sick". By Thursday, the HELLP showed up. I never got full-blown HELLP - just started the descent when I had a C-section at 4 am Friday April 23 at exactly 32 weeks. Violet was small (2.5 lbs) due to IUGR, but healthy. I had 24 hours of mag sulfate (ugh - what an awful drug), and was discharged the following Tuesday on Adalat and Labetelol. Violet was in NICU for 5 weeks, and came home at 37 weeks at just about 5 lbs. She was a superstar from the get-go, and so far has done everything she should - eats well, grows, and hits her milestones. I was off BP meds within 6 weeks, and had no permanent damage to liver or kidneys. I know we were VERY VERY LUCKY, and I thank God everyday that I read the PE stuff, and remembered it. God knows what would have happened if I hadn't.

Looking back now, I know my PE started 2 weeks earlier. I had a appointment with my midwife and my urine came up with a trace of protein, and my BP was 120/80 (normally my BP is about 100/70). But, neither of those things set off alarm bells in her, or me. Then, that night and through the weekend (it was Easter), I felt odd. When I went to bed, I felt like my heart was beating too hard and I could almost hear it in my ears. I had decided on Friday afternoon that I was going to see my midwife Monday, just because I knew something was off. As it turned out, I ended up in hospital the very next day (Saturday).

When you know, you know - even if no one believes you in the beginning. My husband doesn't tease me or call me Dr. Google any more!
Severe PE/HELLP - diagnosed 31 weeks, Violet born 32 weeks - April 23, 2010 - 2.5 lb (IUGR). 5 weeks in NICU, home and going strong.

atvlady
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Re: Did you know it was happening?

Postby atvlady » Sat Dec 11, 2010 04:54 pm

I was the same as you. It's like I was screaming but noone could hear me. My drs too told me it was all part of pregnancy but deep down inside I knew something was wrong. As drs I *thought* we are suppose to trust them cause they have degrees in this stuff but I found out that piece of paper means nothing to us. I do have a new OB and she is my saving grace. I will continue my care with her and feel comfortable getting pregnant again cause she is educated in this hence she says "we see all the sick pregnant women" and she's going to stay 100 steps in front of me. I told her I know I am going to panic and she is ok with it.

I hate that your outcome came out the way it did and yes I am with you on the what if I went to the town beside me. I hope your daughter grows out of it and even more glad to know you are her advocte. She needs you and you need her. I also saw a pregnancy book after I had Darren and it had only one page on pre-e. I think these syndromes happen to more than 1-6. Look at the cases that is undiagnosed and the results is a example of your daughter.
Delissa (38) Darrell (45)

1-Rissa-Janelle "Darren" King 20+1 June 6, 2009 10:33 p.m. to June 6, 2009 11:53 p.m. 6.8 ounces. Severe PIH, Severe Preeclampsia and Severe HELLP. No diagnosed underlying condition.

2-TTC as of August 30, 2010
8-15-2011 Now infertility is a issue. We will be doing IUI.

kellyo19
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Re: Did you know it was happening?

Postby kellyo19 » Sat Dec 11, 2010 04:01 pm

With my first pregnancy, at 20 wks I had vision issues and felt sick, went in and the nurse got me at 140/90 for BP and told me to stop hyperventilating (I wasn't even close to doing that). The dr came in and said I needed to practice calming breaths. I went home and laid on the couch the rest of the day and told myself I overdid it at work. As the symptoms started to pile up, I mentioned them to the nurse and the doctor... but was repeatedly told it was just how pregnancy worked. It wasn't until after my daughter was born and the placenta was delivered that the dr realized she'd royally messed up, and she told me our daughter had lost 1.5 lbs pre-birth and the placenta was aged, but to let my next dr know about it at my next pregnancy and things were gonna be fine. It was a new town, new dr, and 2nd pregnancy before my new dr informed me exactly what had happened with our daughter. 2nd time around I had BPP/NST and tons of labs, but stayed at PIH. 2nd time around I was a loud advocate for myself, constantly checking up on my test results, wanting to know my BPs, reminding nurses if a lab or test wasn't done. I'm sure by the end they were sick of me. Looking back I have no idea why I didn't question my dr more with my daughter. I trusted her, I read the "What to Expect" book, read the few paragraphs on PE and IUGR and didn't think it applied as it was rare and no one in my family had had it before. Sadly - the PE/IUGR likely contributed to my daughter's Sensory Processing Disorder and this is having a huge impact on our home life and on her education. I can't help but wonder - if I'd just called the OB service the next town over, and at least spoken with an OB nurse, if the PE would have been caught, if she'd been delivered earlier, if the SPD would have been prevented or lessened. I do feel guilty sometimes, but I'm making up for it by being my daughter's biggest advocate and making sure she gets what she needs. I can't undo the past, but I can influence our futures as best I can.
2005: PE/IUGR pregnancy with Daughter, born 40+2 induction. Diagnosed with Sensory Processing Disorder (or Sensory Integration Dysfunction) in 2010. Diagnosed with ADHD in 2011. It's getting better with OT and treatment!
2009: PIH pregnancy with Son, born 38+5. Diagnosed in 2011 as Developmental Language Delays, Social-Emotional-Communication Delays. More testing Nov. 2011.
2011: I'm undergoing neurological testing. Praying for the best!

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kerisue
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Re: Did you know it was happening?

Postby kerisue » Thu Dec 09, 2010 10:28 pm

I knew very little about PE prior to it happening to me. I had heard about it but my whole concept of it amounted to "something that happens at the end of a pregnancy, you go on bedrest for a couple weeks, have your baby, then you're fine." I guess I thought bedrest was the answer. How wrong I was!! My timeframe from disease onset to delivery was pretty short, but I did have VERY swollen ankles and I KNEW it was too early in the pregnancy for that. Doctor blew it off as a normal part of pregnancy but I knew it wasn't. Didn't have any idea what it did mean though.
Mama to Millie
born June 2010 @ 24 wks. gestation due to my severe PE and CHF
lived 25 days, loved and missed

brandib
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Re: Did you know it was happening?

Postby brandib » Thu Dec 09, 2010 10:24 pm

First time around I was having HORRIBLE URQ pain and thought it was gall bladder attacks :0( I felt horrible and had brown colored pee.......I don't quite remember not being able to pee though.....also never heard of it before I got it :0( The URQ pain was so bad I would lean against the wall on the floor and could hardly take in a breath at times.....(usually ended up on the floor from all the puking)

Delissa, you should NOT feel guilty! You know with Hellp syndrome, delivery is quick.....there is nothing you could have done! Also you are rarer than rare because if PE is rare to start with its quadruple rare to have pe and hellp at 20 weeks!!!!!! :0(

atvlady
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Re: Did you know it was happening?

Postby atvlady » Thu Dec 09, 2010 04:01 pm

Sam...mine hit me wide open at 18 weeks and delivered at 20. The URQ pain was unreal. I set and cried my eyes out it hurt so incredibly bad.

Jen....I don't think elevated BP is part of HELLP. It is PIH or PE that causes that to rise. Hopefully Caryn or one of the more advanced members will let us know. I couldn't pee from the time I found out I was pregnant which was 3 weeks. I would drink tons of water and only urinated like 5 drops. I retained ALL of that fluid for the 20 weeks. When I delivered I was puting out massive amounts of urine. They done urine measurements on me and I would fil the hat up 2 and 3 times! My swelling started in my ankles and moved up my body. The swelling jumped on my hands in a matter of minutes. That is when I called the dr office and said to go to L&D. No there is not much info on HELLP. I think there is some Universities that is trying to do more research on it.

I just wonder, if I knew what was going on, could I had gotten further along? Could it had been managed? I know I started out with PIH but then it jumped to PE and HELLP. I know I will never get a answer and the good thing is I have a VERY good OB now. She is going to stay 100 steps ahead and I have stressed to her that the first signs I am going downhill, I want delivered. I don't want to wait especially if my liver and platelets start to stray. Keeping on top of things is key IMO. Thank yall! Just wanted to see if anybody else had the same experience.
Delissa (38) Darrell (45)

1-Rissa-Janelle "Darren" King 20+1 June 6, 2009 10:33 p.m. to June 6, 2009 11:53 p.m. 6.8 ounces. Severe PIH, Severe Preeclampsia and Severe HELLP. No diagnosed underlying condition.

2-TTC as of August 30, 2010
8-15-2011 Now infertility is a issue. We will be doing IUI.

jenmatt1
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Re: Did you know it was happening?

Postby jenmatt1 » Thu Dec 09, 2010 03:17 pm

Delissa
That was one of my complaints too. I felt off for a few days, but the night before I felt like I had to pee and couldn't so I called doc and made appt for that morning. By the time I got to doctors they took my BP then told me to pee in a cup and it was rust brown. That was when doc sent me to hospital. This time around, everytime I don't actually have to use the restroom a million times a day I think about that and worry it is HELLP again. The second time around you learn to be forceful and not afraid to call the doctor all the time.

Sometimes I feel like I am a hypochondriac but I suck it up and call the nurse. Like today, I have headache for a few days- no other symptoms except my bp has been creeping up from 100-110/50-60s to last week was 120s/ 70 and today it was 133/80. Everyone says not to worry about that BP yet, but I think it is just HELLP creeping up on me again. I insisted I come into the doctor for them to check BP and urine. BP slightly elevated and no protein in urine- but I did have sugar in my urine so they took bloodwork to double check. The next time around you will learn not to take no for an answer when you sense something is wrong- good luck with trying to conceive.

Even after I had HELLP I still had trouble finding out a lot about it. This one one of the only websites that I could find info on. I think that it is a shame because the consquences are too high risk not to understand.
Mom to Olivia 4/4/2008 born at 34 1/2 weeks due to class I HELLP
Declan born 1/4/2011- no HELLP or PE- YEAH

sam10
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Re: Did you know it was happening?

Postby sam10 » Thu Dec 09, 2010 02:51 pm

I remember reading about PE/HELLP in a pregnancy book. It was just a very short paragraph and mentioned that it was rare and that is all I knew about it when I was hospitalized.
I felt off and now I wonder how I could not have run to the doctor with the symptoms I had. Even one of my friends suggested that this sounds like PE. I just thought that my symptoms was pregnancy related and I did not want to be a wimp. For me PE hit in-between the regular check-ups (20 weeks and 24 weeks), so at my 20 weeks check, I was still fine, even though my hands were already swelling, and at my 24 weeks appointment I was hospitalized.....and I SHOULD have gone back to see my doctor. I felt ill, but I did not. Why? will remain the ever unanswered question, which never will be answered along with the question why Henry had to die.

Sending you hugs.
MC 3/2009 and 3/2011
H (1/1/2010-1/7/2010) - forever loved and missed; severe PE with Hellp; partial placental abruption, classical c-section at 25.6 weeks
M (Nov. 2012, born at 35.4 weeks) - severe PE

atvlady
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Re: Did you know it was happening?

Postby atvlady » Thu Dec 09, 2010 01:28 pm

Thanks. I kept telling my drs "I can't pee" and it was dismissed as part of pregnancy and wasn't. I was in trouble from the get-go. It was like I was screaming but noone heard me. I should have been more aggressive about not feeling well. I just feel guilty cause I should have read up more about pregnancy online. I never thought it would happen to me. I don't blame myself but I just feel bad. When I started swelling and had the URQ pain, I knew them something was badly wrong.
Delissa (38) Darrell (45)

1-Rissa-Janelle "Darren" King 20+1 June 6, 2009 10:33 p.m. to June 6, 2009 11:53 p.m. 6.8 ounces. Severe PIH, Severe Preeclampsia and Severe HELLP. No diagnosed underlying condition.

2-TTC as of August 30, 2010
8-15-2011 Now infertility is a issue. We will be doing IUI.

jenmatt1
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Location: Florida

Re: Did you know it was happening?

Postby jenmatt1 » Thu Dec 09, 2010 12:17 am

Delissa you should not feel guilty. But I know how you feel- my daughter ended up being ok but I still feel guilty about it.

There is no way you could have know this. My doctors caught it- but only because I told them I felt off. And then they checked my pressure and urine and sent me to hospital right away. I think that I would have had a much different outcome if I didn't go in that day- because within a few hours my daughter's heart was racing and she was in distress. I would have never known that unless they were monitoring it- because honestly I felt no different when her heart started racing.

I had heard of HELLP one time earlier in my pregnancy- my bp was elevated slightly- but I went back in every day for a week and it dropped to normal. The doctor had asked me questions to see if I had PE/HELLP. But that was at about 26 weeks and I ended up delivering at 34 1/2. Honestly though the symptoms they mentioned to me at that time were nothing that I thought were connected to the way I was feeling the day I delivered my daughter. I just felt off. I had a headache- but nothing painful or severe. I had back pain and a little swelling (both of what I thought was normal for pregnancy) and I had no upper right quadrant pains. In fact, my bp just days early at an appointment was relatively low- 110s/60s
Mom to Olivia 4/4/2008 born at 34 1/2 weeks due to class I HELLP
Declan born 1/4/2011- no HELLP or PE- YEAH


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