DID CEASING LOVENOX HAVE ANYTHING TO DO WITH MY HELLP?

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

DID CEASING LOVENOX HAVE ANYTHING TO DO WITH MY HELLP?

Postby lkw787 » Sat Feb 08, 2014 11:25 pm

Please forgive me if I have already asked this question but I'm still hoping to find an answer.

My story (which I've shared before, please forgive if this is too repetitive) is that I tried to conceive for ten years, beginning at the age of 35, when my husband and I decided it was finally time to start our family. (We worked freelance in a high pressure field and were both dealing with financial insecurity/difficult work schedules for many years.)

I was able to conceive naturally at age 36 only to discover at the first OB appointment that the pregnancy had already ended around 9 or 10 weeks.

I then was diagnosed with endometriosis which I had removed via laparoscopy and went on to doing many rounds of stimulating hormones and fertility treatments (IUIs, 2 attempts at IVF with my OE) which never worked, instead, conceiving naturally two more times when we'd stopped "trying" at ages 38 and 41. These times because I could tell I was pregnant very early on, and wanted to give the pregnancies the best chance of success (having already lost one) I asked a fertility doctor who I'd already consulted to monitor the pgs so he did, putting me on progesterone suppositories and performing the early "HcG tests and u/s. I had two good u/s with a h/b before the third u/s (around 10 weeks) revealed no h/b.

After the last loss (age 41) I was devastated and finally accepted what several REs and an OB had told me: that my "eggs" must be bad and I needed an egg donor.
I also consulted a therapist to help me cope with the grief of recurrent m/c and she referred me to an RI, the now retired Dr. William M______. Dr. M.____gave me a long list of expensive tests that weren't covered by insurance and he presented as, well, eccentric, so I took his list to my reputable RE in whose care I'd lost my last two pgs, Dr. M____s_and I asked him which tests on the list (if any) had merit and he told me that APA, ANA, and NK Count did, drew my blood and sent it off for testing with West Coast Labs, an outside, independent lab. I came up positive for APA with elevated NK activity and he put me on low dose prednisone, a steroid, and retested the NK Count. On the steroid it came back within "acceptable" limits, he said. Based on these test results he told me that if I were to conceive again I should inject lovenox daily while pregnant to treat the APA which can cause tiny micro clots to form and to suppress the NK Activity that I should take low dose prednisone once a day during the first trimester only, tapering on and off of it.

Dr. M__s. agreed that at this point DE represented my best and probably only hope to have a baby.

So I started my own support group for women considering DE (to help me navigate the process and also to get emotional support) negotiated a "free rematch until live birth" agreement with a local egg donor agency, and finally, after two attempts at DE had to be canceled prior to retrieval due to problems with the donors' health histories and/or response to stims, donor #3 gave us the egg that became the single hatching blastocyst my new RE (RE #4) transferred. (I asked him to transfer only one embryo to avoid twins which, due to a large fibroid that could cause crowding, I'd been told would be too high risk for me.)

Thus I was 44 when I FINALLY got to my DE IVF transfer and though not a spring chicken, was in good shape. I was underweight, a ten year long vegetarian and a life long nonsmoker who rode horses and went boogie boarding on weekends.

I had a blissful, easy, relaxed pregnancy during which I did prenatal yoga and swim aerobics and took it easy since I got laid off from my job early on in my pregnancy. Then one week before the medically necessary scheduled C-section my OB instructed me to cease lovenox and 48 hours later I became violently ill (nausea, vomiting and headache.) My husband called the OB who told him to bring me in to the hospital. Once at the hospital I was diagnosed with eclampsia and an emergency C-section performed. My daughter was delivered healthy but I began to have seizures.

A brilliant neurosurgeon happened to be in ICU visiting another patient when he looked over and noticed I was having a stroke. He took me in to the OR and performed the craniotomy that saved my life. Afterwards he told my husband he thought I would make an excellent recovery though I might have some weakness on my left side.

The next day my liver ruptured and the surgical team told my husband to accept the fact that I was going to die. In addition to the ruptured liver, I appeared to be suffering a second stroke and I wasn't stable enough to be removed from life support and put in a CAT scan to see how bad it all was. My husband told the surgeon, "That isn't an option. There must be something you can do."

I suddenly became stable enough for them to perform a liver and brain scan and afterwards they told my husband, "We were wrong. She's not hemorrhaging in the brain again and though her liver has ruptured the capsule that surrounds the liver seems to be holding the blood for now. Livers can heal. She may survive."

Well, obviously I did survive but it took six months in hospitals (that I remember none of) and 18 months of cognitive and physical therapies to bring me back to full functioning. (I received respiratory and speech therapies, as well as 18 months of cognitive, occupational, and physical therapies.)

My questions are: did ceasing lovenox have anything to do with my getting HELLP? (I've read that women who test positive for APA are more at risk for HELLP and that it is advisable for them to plan to deliver in OB units that are well equipped, something my RE, Dr. M_____did not tell me. --Perhaps he didn't know.)

Also, three (almost four years) post HELLP, though I'm lucky that my cognitive function has returned to normal (due to all the intense therapies I got) I find myself plagued with pervasive joint pain that no one has been able to successfully dx. Is it likely that the joint pain is a result of damage caused by HELLP? Or is it some OTHER issue and if so, what? I've been tested by a rheumatologist for a host of things but all she could find was that I have Srojen's Syndrome (but joint pain is not one of the symptoms of that illness.) She has put me on enbrel just to see if that helps since my father has psoriatic arthritis that is being successfully treated by that drug. I think she's just guessing and hoping that it helps. So far (two weeks in/two shots of enbrel accomplished) I see no improvement.

My most important questions are about the lovenox (from a curiosity standpoint) and about the joint pain (from a quality of life standpoint.)

Thanks ahead of time for any and all replies.

Sincerely,

Lisa W.
dressagequeen42@gmail.com
lkw787
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Re: DID CEASING LOVENOX HAVE ANYTHING TO DO WITH MY HELLP?

Postby CptSpacely » Tue Feb 11, 2014 02:37 pm

Lisa,

I have seen your story on the RESOLVE forums before, and reading it again here made it no less horrifying. How lucky you are to have survived such an ordeal (and mostly unscathed at that)!

I am by no means an expert on preeclampsia or HELLP, but after experiencing severe PE in my first pregnancy (with the beginnings of liver dysfunction that likely would have eventually lead to HELLP), I've done a lot of reading about the disease. There's a wealth of information here in the PE foundation forums. What I've learned is that PE and HELLP are related diseases that are both ultimately the result of the placenta failing to properly imbed itself within the uterus. There is no single cause for this, although genetics play a large role, and the process of the placenta implanting and invading the uterine arteries occurs primarily in the first trimester and early in the second trimester. There's a fantastic explanation of the mechanisms involved in an article linked within this post: http://www.preeclampsia.org/forum/viewtopic.php?f=28&t=17623

Since the groundwork for the later development of PE and HELLP occur early in the pregnancy, I don't believe that ceasing Lovenox led directly to you having HELLP. In science, there's a concept that can be summarized simply as "correlation is not causation". Ceasing Lovenox was associated (correlated) with your subsequent development of HELLP, but that doesn't necessarily mean that ceasing Lovenox caused the HELLP. Instead, the HELLP likely developed for some of the same reasons that you were taking Lovenox in the first place--because you had clotting and immune disorders that caused miscarriages (which themselves can be an indicator of poor placentation).

The reason that PE and HELLP occur in the third trimester (or occasionally late in the second trimester) is because that's the time when rapid fetal development puts a great strain on the placenta to deliver the oxygen and nutrients required. As discussed in the linked article, when the placenta can't supply the necessary oxygen to the fetus, it releases factors into the maternal bloodstream that damage the blood vessels, kidneys, and eventually the liver, all in an effort to divert resources from the mother to the fetus. Is it likely that the Lovenox was helping maintain blood flow to the placenta? Yes. If you had stayed on the Lovenox longer, would the HELLP have been delayed or even avoided? Possibly, but probably not. You developed HELLP because the placenta did not develop properly, and it was likely only a matter of time and circumstances largely beyond your control before you started getting sick.

As for your joint pain, I've not heard of HELLP or PE causing joint damage in and of themselves. However, joint pain and damage is often caused by auto-immune disease. Auto-immune issues are correlated with PE and HELLP. Lots of women who have PE and/or HELLP find that underlying disorders (hypertension, kidney disease, auto-immune issues, etc.) that may or may not have remained dormant in the absence of PE/HELLP become "unmasked" after surviving PE/HELLP. Why this is the case is the subject of ongoing research. I certainly hope that you find relief in treatment of your joint pain--I know that joint pain can truly be debilitating.

I hope you find this somewhat helpful. As I mentioned before, there is a lot of information on this website. If you have any more specific questions, I can try and help find links for you.
DS: Born via C-section on 7/4/12 at 33w5d after sudden onset of severe PE. Now a happy, healthy toddler!
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Re: DID CEASING LOVENOX HAVE ANYTHING TO DO WITH MY HELLP?

Postby lkw787 » Wed Feb 12, 2014 03:11 pm

MENTS: PG, BABY & ILLNESS

Thank you much for your kind and thoughtful reply. I greatly appreciate it.

Will check out the link.

To say that I have enormous guilt over getting so sick would be an understatement--guilt and a huge sense of inadequacy, of course.

Wasn't it bad enough that I needed the help of an egg donor to have a healthy baby? Apparently I also should have hired a surrogate since the ONE fact I was counting on--"at least you can carry a pregnancy" (as RE #3 told me) turned out not to be true. (Though oddly I've heard that even surrogates have been known to get HELLP.)

My husband tells me that the thought that I might have some underlying problem that made pregnancy particularly perilous had occurred to him, which is another reason he was interested in exploring adoption, but of course he never shared his concerns so I had no clue.

I literally spent most of my pregnancy, relaxed and happy---blissed out even, while he lived in a constant state of low grade anxiety. I had no idea.

Ah well, at least our DD was born healthy and I made a good recovery (despite the joint pain and PTSD.)

Thanks again for your kind replies.

Sincerely,

Lisa
Who wishes that more REs
And OBs knew about immunological
And placental function issues.
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Re: DID CEASING LOVENOX HAVE ANYTHING TO DO WITH MY HELLP?

Postby CptSpacely » Thu Feb 13, 2014 03:34 pm

Although I absolutely understand the feelings of guilt and inadequacy, having gone through them myself, the most important thing that I've learned from my research here at the Preeclampsia Foundation is that this disease was NOT MY FAULT. There was no way I (or anyone else) could have known that this would happen to me and no known way to prevent it. The same goes for you. The vast majority of women with underlying diseases (chronic hypertension, diabetes, immune and clotting disorders, kidney disease, etc.) and all the other known risk factors for PE (obesity, age > 35 or < 18, conception using any ART, but especially IVF...the list goes on) do NOT go on to develop PE or HELLP. It's a rare disease and you were simply unlucky to have been hit with it. You shouldn't feel any more guilty about it than guilty about developing a disease like rheumatoid arthritis. You, and I, and all the other women who are unfortunate enough to get this disease simply have some genetic predisposition that makes some placentas imbed improperly for a variety of reasons. Many women who have PE and/or HELLP go on to have normal, healthy pregnancies. Unfortunately, some don't, and it's really hard to predict in advance which women will and which won't.

By the way, I had to use an egg donor to conceive my son as well, and I was much younger than you at the time. It is simply a cruel irony of life that not only was I unable to conceive naturally, but I was also unable to carry a healthy pregnancy to term. So I can definitely relate to feelings of being betrayed by one's own body. While I feel like I drew the short straw on fertility and child birth, in many other aspects of life, I've been very lucky. Maybe it all averages out somehow.
DS: Born via C-section on 7/4/12 at 33w5d after sudden onset of severe PE. Now a happy, healthy toddler!
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Re: DID CEASING LOVENOX HAVE ANYTHING TO DO WITH MY HELLP?

Postby lkw787 » Thu Feb 13, 2014 05:08 pm

Thank you so much for your kind reply.

I'm sorry for what you went through and glad both you and your son made it!

Sincerely,

Lisa
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