Trying to get pregnant after hellp!

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

Trying to get pregnant after hellp!

Postby afaiz » Tue Sep 18, 2012 09:55 pm

Hi all,

I haven't posted anything in a while but have been following along with everyone's posts. It's been 8 months since our loss and as things seem to get easier they also are getting harder. Remembering all the happiness & excitement this time last year. It's been so hard and even after all these months there is no definite diagnosis, but I guess unfortunately with medecine there never is. I might have some underlying autoimune issue. But not really sure since I have no clear issue yet. I had really high liver enzymes for months & was on stereroids and another medecine but now have been off since June with normal levels since may. I guess I am just hoping to hear some encouragement that this wouldn't happen again. The dr's aren't sure if I had hellp or if it's the autoimmune issue or maybe if I had all 3 hellp, eclampsia & this autoimmume thing... And is it possible to not have anything in another pregnancy? I guess now that we are trying its just very scary I can't go though all this again.....

I lost my daughter at 24.5 weeks on January 15,2012... And it runs through my mind every second of every day. I still cry a lot and really am not sure how I should feel.

I had irregular cycles before and used clomid and an iui to get pregnant but this time my cycles are a little bit more regular not completely but at least I am getting them on my own... Without any medical intervention. And could that maybe help decrease my chances of getting it again? Or are my chances do high anyways it doesn't matter...

Also from reading other ppls posts it seems that there drs are more concerned maybe because I wanted to have a baby so badly while in the hospital. My dr seems very relaxed that if I get pregnant abd am highly monitored I will have a better outcome. They didn't mention surrogates but another high risk OB did. I'm just confused on who I should go to if I even am lucky enough to get pregnant again. I feel comfortable with the original high risk OB she followed me in the hospital and is very caring and works with my hepatologist very well.

I guess this is mostly just rambling just wanted a place to vent and talk to ppl that understand.
afaiz
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Re: Trying to get pregnant after hellp!

Postby tree » Wed Sep 19, 2012 09:00 pm

Welcome back. I am so sorry for your loss. This is a great place to vent and think through things. There are other Moms who have developed HELLP and/or PE very early in pregnancy who have gone on to have healthy (or at least much healthier) subsequent pregnancies. It has to be frustrating to go through all of that and still not have a diagnosis. Five months seems like a long time to have high liver enzymes after HELLP. Most women return to normal very quickly. I think mine were back down in 2-3 months.
It sounds like you have a good medical team ready if you do get pregnant again, and that is a huge advantage. The fact that your doctors are pretty optimistic is also good news. They understand your condition much better than we do. I would suggest going to the doctor that makes you most comfortable. In your case, the doctors need to work well together to manage a pregnancy and your potential auto-immune issue. Fear and anxiety are very normal after experiencing PE, and I would want a doctor that made me feel comfortable about my treatment plan and how we would manage any complications that come up.
Daughter born April 2009 at 35 weeks due to Class 1 HELLP
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Re: Trying to get pregnant after hellp!

Postby afaiz » Wed Sep 19, 2012 10:57 pm

Hi teresa,

Thanks for responding to me, My enzymes went really high about a month after the pregnancy & I was put on stereroids but they just stayed high for another month then started going down... So that is why there is a potential of facing autoimmune Disease. Also my maternal uncle has arthritis. And I have a positive ANA but no other symptoms or issues. So odd bc even after the biopsy my liver dr just said it was inconclusive... So it's hard to really know I'm just scared that with so many issues my chances aren't very good... :-( but im still trying to be positive and just hope for the best and that everything works out if I can get pregnant again...

I do feel comfortable with my high risk OB, her and my hepotologist dont seem concerned that I should not try again.
but it's just very scary. I really want to be healthy & have healthy babies...

Thanks for listening
afaiz
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Re: Trying to get pregnant after hellp!

Postby tree » Thu Sep 20, 2012 11:07 pm

You are in pretty good company here with a lot of women who have had inconclusive autoimmune and underlying condition test results. Many of us have tested borderline or barely normal for autoimmune issues. It is frustrating and can be really scary, and I found it pretty difficult to accept that I got sick and no doctor could tell me why it happened. Bad luck is an unsatisfying answer, especially when you have good reason to think that it could happen again. You have a really good care team in place this time, and you have a lot more information about what your liver might do. That should help.

Have you talked with your doctors about your chances of having a healthy or much healthier pregnancy? Many women on the board have experienced successful subsequent pregnancies. It is common for PE to stay away after the first pregnancy. We are kind of the "worst of the worst" here, but even most of the women here have had a milder and later case of PE in second (or more) pregnancies. Your doctors might give you pretty scary or rotten odds of developing some form of PE (20-60% is a common range), but that still leaves you with a good chance of a successful outcome.
Daughter born April 2009 at 35 weeks due to Class 1 HELLP
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Re: Trying to get pregnant after hellp!

Postby afaiz » Wed Sep 26, 2012 09:39 pm

Hi Teresa,

Thanks for responding to me, at my last appt in April I met with a research dr who does studies on preeclampsia & hellp he's supposed to be an expert in the field, the perinatalogist that followed me in the hospital after delivery explained my case to him and they looked at my recent blood work & didn't seem concerned. He gave me a 5% chance of hellp & a 2% chance of eclampsia... I don't Remeber what he said about preeclampsia or if I even asked this was in April, and I was still on medications for an autoimmune disease, but they didn't seem concerned told me that they don't see a reason I shouldn't get pregnant again, I should have been happy but felt a little bit confused. I went to another perinatalogist that was more blunt and talked about a surrogate a couple of times and wasnt as supportive i left the office bawling bc he was very blunt. He didn't say though that I shouldn't try again but said he would treat me with a immunosuppressant or stereroid ( for the autoimmune disease) baby aspirin & lovenox. I feel concerned bc I am off all medications for the autoimmune issue, and we are trying but, I am so terrified of everything that could go wrong and has already... I just feel overewhelmed. I think with my hospitalization I was tested for everything but still am worried that there might be something else of something missing :-(. I am scared to even go to the dr bc I just hate talking about it and what happened. It just sounds like something from a horror movie...
afaiz
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Re: Trying to get pregnant after hellp!

Postby afaiz » Wed Sep 26, 2012 10:05 pm

Also the autiimmune disease ( autoimmune hepatits) is the only thing that they have found that is plausible for the elevated enzymes, but is not related to hellp or pre-eclampsia... There hasn't been any link found... Yet I still think there has to be something... All problems of the liver yet not related... :-( idk it just seems like a huge failing chance that I could possibly go through a pregnancy and not have a flare of autoimmune hep or hellp or preeclampsia...
afaiz
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Re: Trying to get pregnant after hellp!

Postby KelliMeyer » Sun Sep 30, 2012 00:46 am

Hi ladies; I had been tested for lupus afterward; as i was told there may be some kind of link between HELLP and lupus. I found that very interesting, since both my grandfather and father have lupus. The problem is that it can be a hard diagnosis as there are many "criteria" that you may or may not have with lupus. Has anyone else heard of this?
Mother of a little girl born at 24 1/7 weeks (550g - 1lb 3oz) and survivor of severe class 1 HELLP syndrome.
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Re: Trying to get pregnant after hellp!

Postby afaiz » Thu Oct 04, 2012 11:26 am

Hi Kelli,

The idea is that autoimmume disorders give you a greater risk of developing preeclampsia / help syndrome. Lupus also seems to be related more so to this. I was also tested for lupus, but all my labs came back negative thankfully. I think your blood work plus your symptoms can give a diagnosis of lupus I think there are 11 criteria and you must meet 4? I'm not sure though? Since it seems you developed hellp early they will test for those things. Hope you are doing well
afaiz
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