Post Reply FAQ Members Login

Questions.Help??

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

Questions.Help??

Postby afaiz » Thu Apr 05, 2012 03:13 pm

by afaiz (41 Posts), Thu Apr 05, 2012 03:13 pm

Hello,

I am new to this group and had some questions for someone that may have been through this before...I developed Hellp & eclampsia in my first and only pregnancy thus far at 24 weeks, I was delivered via c-section at 24 weeks 4 days and our little angel was to small & her lungs were not fully formed so she didn't make it. It's been almost 3 months and I still feel lost and empty as I did on that day. I have not been able to get any answers yet. If anyone has any advice or has gone through something similar. I would love anyones success stories, our doctor has not given us a yes or no answer as to when we can or if we can try again. I have always wanted a large family we were thinking 4-5 before all this happened.


My story:

My husband and I found out I was pregnant on August 24,2011 It was one of the happiest day's of my life we even kept the pregnancy test...Everything was going smoothly she was growing great and we were getting ultrasounds since 6 weeks since I had to see an REI to get pregnant after 3 rounds of clomid and one IUI we were pregnant...At 11 weeks we got all the scans for DS etc... Everything came out fine...I was 27 and neither my husband or I had any family members with issues so we didn't do an amnio but the dr didn't recommend it either. Around 17 weeks I started itching and went to my OB and told her my symptoms and she did some blood-work and my liver enzymes came back at 200-300 and bile acids at 34 so they diagnosed me as having cholestasis of pregnancy. But the high-risk ob that she referred us to did not put me on medication at 20 weeks we had a growth scan and everything looked fine except she was measuring 4- days small which they said was normal. I am not that big myself 5'2/115 lbs, my husband is about 5'10 so he said that 4-5 days is not a big deal. I was getting labs every 2 weeks so when I got them at 22 weeks my liver enzymes dropped to 100-200 range, but at 24 weeks had gone up again to the 250 range but my bile acids were normal at 13...but I was still itching...Around 24 weeks I was having horrible chest pains and was told that I had heartburn I went and saw my OB on Friday January 13, and my BP was a little high and I had gained like 4-5lbs but she didn't mention anything and said everything is fine. Saturday night I started throwing up but I ate seafood so thought I might have eaten something bad..I called the on call dr and he said if it gets worse come in I was having chest pains and shoulder pains...But sunday morning when I woke up I felt a little better but then I began having a headache and seeing spots around 3:30 I told my husband that we need to go to emergency bc I felt like I was going to die...He came in our bedroom and I began having seizures he called 911 and apparently I had another seizure in the ambulance. I was taken to the hospital by my house but then taken in a helicopter to a larger hospital with a better NICU. I had an emergency c-section at 9:15 that night my plateletts were at 44K and liver enzymes in the 300-400's.. Our baby didn't breath as her lungs weren't fully formed...I spent almost 3 weeks in the hospital because of low plateletts I had really high BP when I was there as well. My plateletts dropped down to 18K and I was given plasmapherisis but it didn't help that much I was on BP meds every 2-3 hours. I was released from the hospital on no medication on February 3,2012 with my plateletts at 55K and liver enzymes in the 200 range...I went back for an appt on Monday the 6th and my plateletts had normalized at 169K but my enzymes continued to go up. Then on the 14th they basically sky-rocketed and went in the 1200-1500 range. I had a liver biopsy to test for autoimmune hepaitits and the results came back a little inconclusive I was put on high dose stereroids and nothing happened for 4 weeks now the past 3 weeks they have gone done as my dosages have decreased?? My hepatologist is confused as to why that is and isn't sure if I have autoimmune hepatitis, that could have triggered all this or if my body was just taking a long time to recover...My enzymes are 97 & 150 so they have gotten a lot better. Does anyone have any experience with any of these things? I want to try again but am scared the dr's will tell me not too. I saw my high risk ob on March 6th but she didn't say that said that it shouldn' t be a problem once my levels are normal and that I would just be closely monitored. I am trying to get another appt with her...

Has anyone had hellp & eclampsia and found to have an underlying autoimmune disorder?
If the underlying autoimmune issue was treated were you successful a second time?
Did anyone have hellp and eclampsia and get worse 2 weeks to a month later? I know t could take a while to recover but has it gotten worse for anyone....
I never had any protien in my urine or high BP till 2 days before delivery... I also hadn't put on that much extreme weight I had gained abut 27lbs at 24 weeks. I was walking and eating very healthy...
When you are monitored and it hits early what have they been able to do??
I am so discouraged and sad feel hopeless as to how we will have a family....How long did it take for your cycles to come back??

Thanks so much for listening to my story..
afaiz
Registered User
 
Posts: 41
Joined: Thu Apr 05, 2012 07:21 pm

Re: Questions.Help??

Postby caryn » Tue Apr 10, 2012 03:14 am

by caryn (10131 Posts), Tue Apr 10, 2012 03:14 am

Welcome to the forums - I'm so sorry that you lost your daughter to this brutal disease, but I'm glad you've found us.

Women do worsen after delivery, sometimes. Some of our regular volunteers are even raising their grandbabies because their daughters worsened after delivery. Delivery starts the healing process in motion, but there's substantial repair to be made and the chemicals that cause the symptoms are still in your bloodstream for some time postpartum, where they can cause further damage. I don't know if any of our current active posters have gotten worse postpartum, but we do see it here regularly.

These conditions are strongly tied to underlying autoimmune conditions including diabetes and lupus, but like your doctors, I'm suspicious of the idea that you have autoimmune hepatitis. Since we know that some women worsen after delivery and take time to heal, it's hard to say much for certain - especially with an inconclusive biopsy and a positive trend! Do you have another followup scheduled?

Most women who develop this cluster of diseases (gestational hypertension, preeclampsia, eclampsia, HELLP syndrome) in a first pregnancy are at high risk to develop it again in later pregnancies. That said, in those later pregnancies it generally appears later, in a more mild form. This is thought to be because the area of the uterus where the first placenta implanted is developed in a way that makes it easier for other placentas to implant. Although most of our posters have had later and more mild onset, some worsen with some later pregnancies - or have a successful second pregnancy and then a loss in their third pregnancy. Thank goodness, this doesn't happen often, but it's something to take into account.

A pregnancy achieved through any sort of fertility treatment is at higher risk for these conditions. This is because they're thought to result from a "dysregulated" implantation and what the researchers call "breakdown of maternal tolerance," which essentially means that the placenta, which is a foreign organ, wasn't able to coax your immune system into ignoring it, for any of a host of reasons (so far as researchers can tell at the moment, mostly genetic ones - and this is one reason it varies so much with each pregnancy, as each sperm has wildly variant genes from the swimmers next to it.)

Lots of us were really healthy. There was nothing you were doing wrong! The correlations between these conditions and lifestyle are exceedingly poor to non-existent. There is a known dose-response curve with obesity - the more you weigh, the higher your odds - but it is a shallow curve. Your odds curve upwards, but gently, especially at first - and even women who are underweight experience this disease with a pretty steady frequency at around 2-5%. That number is fairly constant worldwide, with spikes for infertility treatment in the countries that have it as readily available medical care. Currently, they're thinking that both a genetic predisposition to preeclampsia *and* some environmental influence from obesity are in play when a woman with a BMI over 30 gets pregnant.

There is no known treatment or therapy for this condition, apart from some very slight benefit from a daily baby aspirin that only appears in meta-analyses, calcium supplementation in extremely calcium-deficient women in Third World countries (supplementing US Americans had no effect), and some preliminary work on metformin for diabetics. But monitoring women closely allows for the timing of steroid shots for lung development and for delivery before women get critically ill and for transport to a good NICU if one is not close by. (Some of our posters live in parts of the country or the world where they need to travel to a good NICU.) Many of our posters have some sort of underlying condition like PCOS or chronic hypertension that needs to be managed to reduce the risk of "superimposed" preeclampsia, or preeclampsia on top of another runaway condition.

MFMs, maternal-fetal medicine specialists, or perinatologists, or high-risk pregnancy doctors, are precisely the people you want to be seeing. I'm glad you already have a relationship with one. Hopefully we can help you sort out which questions to ask at your next appointment so that you can make a concrete plan about a next pregnancy.

I hope this helped - and this place is completely huge, so holler with any more questions!
Science! The articles you don't want to miss:
The Preeclampsia Puzzle (New Yorker) and Silent Struggle: A New Theory of Pregnancy (New York Times)
Looking for recent articles and studies? Lectures from researchers?
A chance to participate in research? For us on Facebook or Twitter?

Caryn, @carynjrogers, who is not a doctor and who talks about science stuff *way* too much
DS Oscar born by emergent C-section at 34 weeks for fetal indicators, due to severe PE
DD Bridget born by C-section after water broke at 39 weeks after a healthy pregnancy
User avatar
caryn
Forum Moderator
 
Posts: 10131
Joined: Fri Jun 25, 2004 06:36 am

Re: Questions.Help??

Postby kerisue » Tue Apr 10, 2012 12:39 am

by kerisue (623 Posts), Tue Apr 10, 2012 12:39 am

Caryn's reply was so comprehensive regarding the preeclampsia issues that I don't have anything to add. But I did want to say that I'm sorry your pregnancy was so traumatic and that your little one didn't make it. My baby was born at 24+ weeks too and she ultimately didn't make it either. It's a crushing, devastating, unfair loss for both you and baby.
Mama to Millie
born June 2010 @ 24 wks. gestation due to my severe PE and CHF
lived 25 days, loved and missed
User avatar
kerisue
Forum Moderator
 
Posts: 623
Joined: Fri Jul 09, 2010 11:43 pm

Re: Questions.Help??

Postby afaiz » Tue Apr 10, 2012 02:09 pm

by afaiz (41 Posts), Tue Apr 10, 2012 02:09 pm

Hi Caryn, thanks so much for the reply... Last I talked to my hematologist he said he is pretty sure I have autoimmune hep since my body is responding to the meds...but he will be more certain if I have a flare when they decrease or take me off the meds... Ugh it'd just so hard bc I can only think about getting pregnant again. I want to try again, but a, not sure when I will get the ok or if I will get my cycles back... Its been almost 3 months but no cycle yet.. I have been trying to get another appt with my maternal fetal dr but it seems that she doesnt want to see us... She had mentioned that she would show my case to ***** ( who just transferred here to Houston and is an expert in hellp & eclampsia)

I'm just so frustrated and sad now, don't know how this is going to get better... I talked to the dr about the IUI and clomid making my risk greater but they said probably not it's usually more with aggressive treatments but I have also read contradicting stuff online....Im so confused and the dr keeps telling me we will have to be satisfied with some degree of uncertainty.

I know everyone's pain is different but I'm still so depressed.. How long did it take you ladies before you started feeling ok... And maybe a little bit better... I feel like I will never get better at this point...I'm seeing a grief counselor but I don't know how I am supposed to feel and if it's helping? How did you ladies cope? What did you do? I know I will always miss her but I try to tell myself that I am glad she isn't in pain and she never had to suffer, but I feel like my life is over and my husband and I have no future..

It feels nice to let out my emotions here with people that understand how I feel...beyond miserable...

Thanks
Asma
afaiz
Registered User
 
Posts: 41
Joined: Thu Apr 05, 2012 07:21 pm

Re: Questions.Help??

Postby caryn » Wed Apr 11, 2012 09:05 am

by caryn (10131 Posts), Wed Apr 11, 2012 09:05 am

It's only been a few months and you've been dealing with a medical crisis on top of losing your daughter. You are allowed to be angry and sad. This is a brutal disease and there's no fairness about it. Keep posting - it helps to talk to other women dealing with the same issues.

Hugs to you.
Science! The articles you don't want to miss:
The Preeclampsia Puzzle (New Yorker) and Silent Struggle: A New Theory of Pregnancy (New York Times)
Looking for recent articles and studies? Lectures from researchers?
A chance to participate in research? For us on Facebook or Twitter?

Caryn, @carynjrogers, who is not a doctor and who talks about science stuff *way* too much
DS Oscar born by emergent C-section at 34 weeks for fetal indicators, due to severe PE
DD Bridget born by C-section after water broke at 39 weeks after a healthy pregnancy
User avatar
caryn
Forum Moderator
 
Posts: 10131
Joined: Fri Jun 25, 2004 06:36 am

Re: Questions.Help??

Postby Lee2011 » Thu Apr 12, 2012 09:01 am

by Lee2011 (30 Posts), Thu Apr 12, 2012 09:01 am

I just had to send you **big hugs**.

From spending time on this forum, there is no one way to deal with the impact of HELLP on your life. Some people find formal counselling, informal communication, arming themselves with information, just taking some time all useful things to do. Just don't place a time limit on "feeling OK", our experiences stay with us always - whatever you are feeling is a valid response to what you have been through.

**HUG**
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 :)
Lee2011
Registered User
 
Posts: 30
Joined: Fri May 13, 2011 01:24 pm

Re: Questions.Help??

Postby afaiz » Thu Apr 12, 2012 05:44 pm

by afaiz (41 Posts), Thu Apr 12, 2012 05:44 pm

Thanks Ladies,

I guess I can just come to here to vent I am having such a difficult time dealing with all this, and no one seems to understand I have become obsessive with reading forums and going on blogs...I feel just utterly completely lost. On top of everything I am dealing with emotionally I am having a hard time physically because of the autoimmune disorder they found I am on steroids and another medication that have these bad side effects puffy face, random hair growth on my face, weight gain....I know it seems so trivial to worry about because hopefully it's just temporary, I have been taking the steroids for 2 months and my labs have improved a lot and it has brought down my ALT & AST but it was odd the way it happened. I have read all the things online about getting people getting off and the relapsing or sometimes being on treatment and getting off and being ok..UGHH it's so frustrating and scared beyond belief of what the future will hold.

I feel cheated from life, this happened when I was 27 & I feel my life was just beginning and now it's already over. Like my life has ended before it even began. I am still trying to get an appointment with my MFM but I don't think she has any answers for me till my liver tests come back completely normal. I met with her March 6 and she seemed so positive that my next pregnancy could be successful, but now after reading other people's experience about there dr's saying not to try again, and then reading that maybe a surrogate could get hellp or eclampsia...It's like what is wrong with my life.....!!!

I just feel over-whelemd and that it can never get better because I won't get to experience the joy of being pregnant again, through everything those 6 months were the best of our life...I just don't know how and why this happened.....it's so unfair. I am just hoping to read someone's success story that had hellp and found some underlying isssue and once the underlying issue was controlled had a successful or multiple successful pregnancies without having hellp or eclampsia!! I feel like I am not in control of anything in my life. I have labs tommorow to check my levels again so am terrified for that as well...
afaiz
Registered User
 
Posts: 41
Joined: Thu Apr 05, 2012 07:21 pm

Re: Questions.Help??

Postby kerisue » Fri Apr 13, 2012 11:04 pm

by kerisue (623 Posts), Fri Apr 13, 2012 11:04 pm

Afaiz,
When my baby died I felt like my life was over too. Like I said above, it's the worst most crushing pain ever and I'm sorry you know it too. You asked above how people cope. I took off my full maternity leave and let myself wallow for a little while- anytime I wanted to cry I cried, anytime I wanted to talk about Millie I did, I didn't make myself function at full capacity. In fact, the only thing I made myself do in the early days was exercise and shower. I spent time researching preeclampsia and being on this forum, I went to a grief group of other parents who had lost infants (from any cause), I read a book called "A Broken Heart Still Beats" which wasn't about "moving on" or "getting over it" because I knew I couldn't do that then. And almost two years later, I'm still grieving, I think I always will. The physical pain of her loss has lessened, but I still think about her multiple times a day and I still ache for her and everything her life might have been. Some days now I can even look at the positive- that I had some time with her, that I got to know that unbelievable love- instead of just the loss. Though everyone's grieving is different, whatever you're feeling is natural. Also remember that even though one of my doctors recommended I not try again, your doctor may not suggest that and even if she does you can always get 2nd opinion. There are women on this website here who have had it bad like you and me and have gone on to have successful pregnancies.
-Keri
Mama to Millie
born June 2010 @ 24 wks. gestation due to my severe PE and CHF
lived 25 days, loved and missed
User avatar
kerisue
Forum Moderator
 
Posts: 623
Joined: Fri Jul 09, 2010 11:43 pm

Re: Questions.Help??

Postby afaiz » Sat Apr 14, 2012 05:36 pm

by afaiz (41 Posts), Sat Apr 14, 2012 05:36 pm

Hi kerisue,

Thanks so much for the support, I guess I'm only trying to find some things people did that helped them. My husband is very supportive and I have been seeing a grief counselor and I find solace in prayer. But most of the time I just feel like who cares what difference does anything make. I am not working as I had quit when I found out I was pregnant, I feel as I have no purpose and point in life. Like there is no reason of my life. I know there is no answers or guarantees for anything, but I try to stay positive and think that hopefully soon I will be off meds and we can get pregnant again...it's just how everything happened was so severe and scary...most of my in-laws are dr's and they never noticed anything....I also was seeing a high risk obgyn that kept saying that everything looked good and would be fine...

Kerisue, I am so sorry for your loss...it just sucks doesn't it...I am sorry that your dr said that you should not try again? What reasons did they have, in my case the dr's were all saying everything is fine and great and not to worry....and nothing was fine it just shows how much they know..i think there is only so much they know and the rest is really gods way...
afaiz
Registered User
 
Posts: 41
Joined: Thu Apr 05, 2012 07:21 pm

Re: Questions.Help??

Postby afaiz » Mon Jun 11, 2012 06:50 pm

by afaiz (41 Posts), Mon Jun 11, 2012 06:50 pm

Hi ladies,

It's been a while since I posted, I met with my maternal fetal med dr & a specialist dealing with hellp & eclampsia. They didn't seemed concerned at all to have me get pregnant again. They said my chances of getting eclampsia was less than 2% and hellp was 5%. I keep hearing they are not even sure if it was hellp or the autiimmune disease. Or vice versa... Lol it's a very confusing situation...

I am still on steroids but a very low dose and if my levels remain normal ( they have been for the past 8 weeks) then I should be off by July.. My dr has put me on an immunosuppressant though which is not considered safe in pregnancy but him & my OB have said that they use it all the time. Have not seen any issues or problems.. Not sure though we have an appointment with another high risk OB next week to see what he recommends. I want to start trying but I know that when my husband spoke with my dr he said he would prefer to be off the stereroid... I only listen when I hear what I want... :-(

I had no cycles before and used clomid for my first pregnancy that ended with hellp & eclampsia..I have now had my cycle twice ( pretty regular 30 days ) 2 weeks after ovulation. Am hoping I won't need any treatments this time.

How long did you wait after a hellp pregnancy to start trying? How long did it take you? I have so many questions but was just wondering if any ladies had some other questions or advice that helped them for the second pregnancy.

Thanks so much for the advice and for reading my rambling! :-)
afaiz
Registered User
 
Posts: 41
Joined: Thu Apr 05, 2012 07:21 pm


Return to HELLP Syndrome Survivors and Underlying Disorders

Who is online

Users browsing this forum: mamc2003 and 2 guests

cron