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.