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Survivor HELLP Class I, My Story/ Questions

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

Survivor HELLP Class I, My Story/ Questions

Postby evancaleb10 » Wed Oct 06, 2010 05:00 am

by evancaleb10 (18 Posts), Wed Oct 06, 2010 05:00 am

Hello, I loss my sweet beautiful angel, Evan, at 33 weeks on 8-23-10 due to HELLP (Class I). I had a total normal first pregnancy. This 2nd time around, I had an uneventful pregnancy up until that day. I always had normal blood pressures and no protein in my urine at all my OB appointments. I had some leg swelling that came on about 2 weeks prior but my job requires long hours on my feet at times so I didn't think anything of it. The swelling improved with leg elevation. I had intermittent headaches which were not severe and was use to headaches prior to pregnancy. I wasn't feeling bad and didn't even work that weekend so was not stressed.

Out of the blue one night i started feeling upper epigastric abdominal pain, chest pressure, pain and numbness down my right arm, and started with continual vomiting all simultaneously. From the time I noticed the first symptom to the time i told my husband to bring me to the ER was no more than 15 minutes. When i got to the ER my BP was 258/150 and they tried to get my BP down but had a hard time. There was no OB department at this hospital (which i was unaware of but this was the nearest hospital from where i lived). I was started on magnesium to help prevent seizures and once my BP fell below 200 they transferred me to a hospital for emergency c-section (this took a total of 3 hours). By the time I was transported to the other hospital the OB was unable to find my baby's heart beat. My baby was alive on arrival to the first hospital and a hand doppler measured his heart beat at 140 at that time. At this time my BP went back up and was higher now at 262/158 and labs showed that my platelets were rapidly decreasing as low as 32,000 (normal is greater than 150,000), my liver function tests were above 2000 (normal is 20-40), my kidney was failing and i had severe anemia (low blood count). The only treatment for this syndrome is delivery. I was immediately taken for emergent c-section under general anesthesia and had to receive a total of 8 units of blood, in addition to units of platelets and FFP and was in the ICU for a week.

I was hospitalized for 11 days and had to be discharged home on 4 BP meds. The only meds i've ever been on prior to this my entire life was prenatal vitamins when pregnant. Now I am obsessed about my BP and check it at least 3 times a day. I'm praying that the meds can be weaned off soon. It's been 6 weeks and I'm still on the 4 meds but 2 of them have had the doses cut in half; i guess thats a start. I experience daily bad headaches which i think are side effects of the BP meds.

I tell my story in such detail to let people know that this condition has atypical presentations and can present differently with everyone. Also PE/HELLP can be life threatening to mother and baby and nothing should be taken lightly or ignored. Do not let anyone brush off your concerns, its better to be safe than sorry. As devastated as I'm for losing my baby, i do understand how blessed i am to be alive. HELLP is extremely dangerous because it more so than preeclampsia presents abruptly, like in my case, and without preceding signs and symptoms. In retrospect, the leg edema, mild headaches, and big weight gain may have been the subtle signs and sypmtoms that something bad was lurking around the corner. The problem is that all these things can occur during a normal pregnancy. I also wanted to bring attention that though these conditions usually occur during first pregnancies that they can proceed normal pregnancies as well, as in my case, and we should never let our guards down (if you're on this site then you've obviously had PE/HELLP but its good info to know when educating others).

I'm very happy to have found a place where i know others truly understand what i'm going through. I understand all our endings are not the same and some of our angels will have a chance to leave their footprints in this world while some of our angels would have only left their footprints in our hearts but we are connected by how our lives have been touched or changed by PE/HELLP. We owe it to our angels to continue to bring awareness to PE/HELLP and to continue to encourage and help each other. Thanks for allowing me to share my story. God bless.

Question 1: If anyone was discharged on blood pressure meds, how long before your BP stabilized and you were able to get off of them?

Question 2: Are headaches a residual effect of PE/HELLP that may remain after everything is over or could this be a side effect of the BP meds? And if so how long before the headaches subside?

Question 3: Has anyone been told by their doctor that they should not become pregnant again and if so what was the reason?

Thanks in advance
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Re : Survivor HELLP Class I, My Story/ Questions

Postby ambermcn » Wed Oct 06, 2010 09:47 am

by ambermcn (3 Posts), Wed Oct 06, 2010 09:47 am

I'm so very sorry for your loss. I have an Evan too. The only symptoms I had with HELLP was the upper epigastric abdominal pain and nausea. Very intense pain. My BP was not high and I had +1 protien. I was lucky enough to have doctors that took the pain seriously and at face value and didn't have to have a symptom staring them in the face to believe that something was wrong. You are so right; Everyone presents totally different.
Q1) No BP meds for me. While I had bad blood, I didn't have bad BP.
Q2) I never had the headaches (probably because I didn't have bad BP).
Q3) I went to MFM Specialist on Monday and was informed that I would have a 20% chance of getting HELLP again, but with close monitoring he thinks getting pregnant again is OK.
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Re : Survivor HELLP Class I, My Story/ Questions

Postby ozierja » Wed Oct 06, 2010 11:21 am

by ozierja (584 Posts), Wed Oct 06, 2010 11:21 am

Hi Ester,
I am sorry to hear about your sweet angel; it is a terrible disease! My story is similar but HELLP started at 26 weeks. I was on BP meds for about 6 months after delivery, they were tapered but it takes a long time for your body to "equalize" itself and i think it varies with everyone. You can have headaches for many reasons and definitely your body trying to compensate for the medicines or the medicines themselves are reasons to have headaches. My doctor said it was not advisable to get pregnant again but I knew what it was like to go through and they'd watch me closely if I decided to try again. For me, I just decided my daughter needed a mother much more than I needed another is a truly personal tough decision to have to make.
Welcome here, there are a ton of amazing women and men here to talk with!
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Re : Survivor HELLP Class I, My Story/ Questions

Postby l412angel » Wed Oct 06, 2010 06:59 pm

by l412angel (1746 Posts), Wed Oct 06, 2010 06:59 pm

Hi Ester. So sorry you had to find but but then again glad you did. Im so happy to hear that you are ok but am so sorry about your sweet angel :( This disease is scary and NOTHING to take lightly.

The fact this disease can come on at the drop of the hat makes me wish every pregnant woman would know their baseline BP and that doctors would advise all pregnant women to check their BP daily. Or at least warn all pregnant women on PE. But thats in a perfe3ct world right?

answer #1. It can take some women 6 months to get off meds. Sometimes PE and HELLP can unmask the fact that you are chronic hypertensive. Which lets hope is not the case but a possibility.

answer to #2. At 6 weeks since you were so very sick, I would imagine its safe to say that it could take you the full 12 weeks to recover. 12 weeks is when you are in the safe from getting postpartum pe.
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Re : Survivor HELLP Class I, My Story/ Questions

Postby dsingson » Thu Oct 07, 2010 03:48 pm

by dsingson (1 Posts), Thu Oct 07, 2010 03:48 pm

I am so sorry to hear of your loss. I too suffered from severe HELLP with a sudden onset. I also had a normal pregnancy until 34 weeks with only occational headaches, large weight gain and leg swelling. My doctor assured me along the way that these mild issues were "just part of my pregnancy". I went along with my doctor until the abdominal pain and vomiting began. I waited a day to see if the vomiting would subside, but the pain eventually became unbearable and I went to the ER. They observed me for ANOTHER day before i started showing of the "medical" signs of HELLP (blood pressure, enzymes, platelets...), thankfully they had already given started me on steroids for baby's lung development "just in case". Eventually I had an emergency C-section. Baby was okay, has some respitory issues initially and had to be in the NICU for a few weeks, but otherwise, very healthy. We were lucky indeed!

In answer to your questions:
1. No BP meds for me
2. Headaches continued for about 2 months
3. I spoke with several doctors and specialists. All were "concerned" about another pregnancy. Most said that if we did decide to have another baby, they would monitor me closely and that I could probably expect bed rest if at any point I began to swell (since that was my primary symptom in the first pregnancy and started in month 4) or show any other symptoms. I was also told that the chances of having HELLP again would be around 20%. Well, my husband and I are VERY thankful for the daughter we've been given and that I am still hear today, so we decided not to try to have more children. Also, we simply could not afford for me to be on bed rest for months at a time.

However, I would imagine that if our precious little girl had not made it, we would have tried again in spite of the 20% statistic.
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Re : Survivor HELLP Class I, My Story/ Questions

Postby evancaleb10 » Fri Oct 08, 2010 02:11 am

by evancaleb10 (18 Posts), Fri Oct 08, 2010 02:11 am

Thanks for answering my questions. Wow, 6 months on BP meds; I was hoping for a couple of months but I guess just as long they eventually get weaned off is all that matters. Thanks again!
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Re : Survivor HELLP Class I, My Story/ Questions

Postby evancaleb10 » Fri Oct 08, 2010 02:21 am

by evancaleb10 (18 Posts), Fri Oct 08, 2010 02:21 am

Funny you would mention the thing about doctors telling women to take their BPs daily because I was telling my friends that are pregnant to do just that. Having someone check their BP at home is so easy and inexpensive and could help prevent maternal and fetal illness and death that its crazy that its not standard of care for doctors to recommend to every pregnant woman. But like you said, its not a perfect world. Well I'm telling all my friends to pass it along to other women as well as informing them on the symptoms of PE/HELLP.
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Re : Survivor HELLP Class I, My Story/ Questions

Postby kerisue » Fri Oct 08, 2010 10:47 pm

by kerisue (623 Posts), Fri Oct 08, 2010 10:47 pm

Esther, I'm so sorry about baby Evan. I lost my baby too and it's the worst, worst thing.

To answer your questions
1. I started on bp meds just a couple weeks before I delivered, am still on them, and probably will continue to be on them for the forseeable future for chronic hypertension.
2. No headaches for me
3. My OB did recommend no more pregnancies because of how early and how severe my PE was (with congestive heart heart failure and pulmonary edema) she said it was too likely to occur again
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Re : Survivor HELLP Class I, My Story/ Questions

Postby atvlady » Sat Oct 09, 2010 04:01 pm

by atvlady (1000 Posts), Sat Oct 09, 2010 04:01 pm

1-I was discharged only on LDA. It was a month later my old OB put me on Methyldopa that ultimatley gave me AIHA.
2-I only had a headache the day after delivery and that day was when my pre-e hit me bad.
3-my dr has not discouraged me. She has explained the risks but more so leaned on the side of if and when these could hit again. I think the key is having a good dr who will stay on top of things, frequent work ups and labs and your own personal experience. Knowledge is key.
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Re : Survivor HELLP Class I, My Story/ Questions

Postby evancaleb10 » Sat Oct 09, 2010 08:59 pm

by evancaleb10 (18 Posts), Sat Oct 09, 2010 08:59 pm

Delissa, thanks for answering my questions. I'm not familar with the acronym AIHA, what does it stand for?
Good luck TTC!
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