Nearly died of HELLP Syndrome mcs mentioned

[caryn]

My story:

I suffered losses of three naturally conceived pregnancies, always at the end of the first trimester, after two good u/s with h/b. Two of these losses I suffered while under the care of the RE, Dr. * (also while seeing an acupuncturist/herbalist who specialized in fertility.) Dr. * and my OB, Dr. ** both told me that such losses are "always chromosomal" and advised me to move on to DE IVF. I did not fully believe them (call it a "gut" impression) and sent off a "tissue sample" from the last fetus for analysis. When it came back "XX (girl) NORMAL" Dr. * said, "That result proves nothing. Only XY (boy) normal would prove that nothing was genetically wrong with the baby. XX could accidentally have been YOUR tissue she sampled."

So I finally decided to move on to DE (donor egg) IVF. However, at the advice of my therapist whose help I sought to deal with the grief, I saw a reproductive immunologist, Dr. ***. Dr.*** recommended a long list of expensive tests (not covered by insurance) and he seemed eccentric. So I took that list to Dr. ***. and I asked, "What if anything on this list has merit?" He replied, "I'd get you tested for APA (antiphospholipid antibodies) and NK (natural killer cell) count." (I am not sure why I had to bring him this list before he suggested that) So through an outside, independent lab I was tested and came up positive for APA with elevated NK Count. Dr. M. said, "If you were to succeed in getting pregnant again I'd suggest that you inject a blood thinner, Lovenox, and also take low dose Prednisone, a steroid, for the first trimester. So with my DE IVF pg I did both. I also told my OB that I was on the blood thinner. At no point did anyone suggest that I could not safely carry a pregnancy. For most of the pregnancy I was blissfully happy and did nothing more strenuous than prenatal yoga and aqua aerobics at the local "Y."

Unfortunately, I needed a scheduled c-section due to a fibroid blocking my cervix. Due to the surgery, my OB told me to go off the blood thinner one week before the C-section (two weeks before my due date) and two days later I came down with the worst class of HELLP. It presented as a severe headache, stomach ache, vomiting and nausea. HELLP ruptured my liver and gave me a brain hemorrhage that put me in a three-week long coma, from which the doctors were not certain I'd emerge. I was on a feeding tube, respirator, and a ventilator, and when I did emerge from the coma I had no memory of ever having been pregnant or having a baby. My husband tells me that when he would put our infant in my arms I would gaze at her and say, "She's beautiful. Can we keep her?" and that when he told me she was ours I just looked at him skeptically. So he gave me the pregnancy journal I'd made and reading it was like reading new information and because so much of it was so sad it made me weep all over again. I have no memories of the early months in rehab or of our baby girl when she was small but I do remember the night I read that book and wept. I am so glad I made and kept a pregnancy journal. I thought I was writing for our daughter so that she would know the story of her origins when she got older but I was also (apparently) writing to inform myself.

My husband and I were blessed with world-class health care covered by our dual union-provided health insurance (mine has since lapsed) but unlike so many other families we were SOOO fortunate. The excellent care I received did not bankrupt us AND our daughter is healthy.

I wish everyone had the benefits of union provided health insurance. I also wish that an affordable public option existed and that my OB had paid closer attention to my health once I went off of the blood thinner. I'm not sure if any of this could have been prevented but I will always wonder about that.

Now I seem to be developing RA symptoms (stiffness in my joints) and the doctors think that it may have something to do with the damage my liver suffered from HELLP though they are not certain. Any information on what HELLP does long-term and any info on the odds of my daughter getting HELLP if she tries to have a baby (I hope none?) are welcome. Thanks!

Lisa
dressagequeen42@gmail.com

[tree]

Hi Lisa,
I am sorry to hear that you got so sick with HELLP. It is a brutal, horrible, disease, and your family is very lucky to have you here. I also had HELLP, but not nearly as severely as you did. I cannot imagine what you went through.
I don't think medical science has good answers on the long-term effects of HELLP. Caryn has mentioned the idea of PE/HELLP being signs of a "failed stress test." These complications of pregnancy suggest that we are risk for cardiovascular issues later in life or may have dormant autoimmune conditions. Many of us have had long, slow recoveries back to "normal", and I think you will find a lot of women with underlying conditions on the board. I think there are a few with APA/APS or RA. I have had RA-like symptoms before and after pregnancy, but I haven't been diagnosed yet. Hopefully someone with more useful information will chime in soon.

[caryn]

Welcome to the forums - I'm glad you've found us!

In your shoes, I'd want to talk to an rheumatologist about the possibility that the elevated APA before pregnancy and the RA symptoms now indicate that you had an underlying autoimmune condition that interferes with normal implantation of placentas. Many women who develop these complications of pregnancy have preexisting diseases that make pregnancy somewhat more likely to be difficult.

For what it's worth, the only known therapy for these conditions is delivery, and HELLP tends to come on so rapidly that women develop it between appointments. We have at least one poster who was perfectly healthy at her 2pm OB appointment and in the ICU by midnight.

Welcome again!

[dressagequeen42]

Thank you for the replies.

I have been tested for RA and told that I do not have it (though you'd never know it from the stiffness in my joints) and have taken to sleeping in my wrist braces at night again. Am also taking herbal supplements recommended by my acupuncturist whom I see 1x every two weeks to try to alleviate the joint issues and will resume water aerobics again too. My acupuncturist also recommended PT which I will start next week (covered thru amazing health insurance, luckily.)

I have yet to see a rheumatologist but I have had various tests done and will take the results to him or her when I go.

Although this has been an awful experience we were so blessed to get the best medical care (covered by union sponsored dual health insurance) and blessed that my daughter and I both survived. I think, however, that it will take a long time for my husband and me to overcome the PTSD and unfortunately, this is hard for friends and family (who have not endured such a crises) to understand. Even the women in the support group I founded for women trying to move on to DE IVF say incredibly unsupportive things like "You should count your blessings. Look at what you have: a great husband, beautiful daughter." Yes, and I nearly died. One can feel blessed and still wake at night short of breath, afraid that one is stuck in a rehab house separated from their newborn baby and husband. He is suffering from PTSD as well too. It is VERY HARD.

Thanks again.

Lisa

P.S. prior to all this I was a vegetarian who never smoked and while pg I exercised regularly (swim aerobics and prenatal yoga) so when the rehab people would lecture me on diet and exercise I would say, "Hello, not all strokes are caused by the same things. I actually understand the importance of eating right, exercising, and managing stress." ): I really do wish that more healthcare providers were educated about HELLP and would like to contribute to that effort.

[blythe]

Welcome, Lisa! I'm so glad you found us but so sorry you had to. How old is your daughter now?

Quite a few of us can relate to your PTSD symptoms, though obviously you had an extreme trainwreck of an experience and my heart goes out to you and your husband.

Also, I'm glad you can see that you are lucky that you and your daughter are okay, we have entirely too many women here who have lost their babies, and husbands who have lost their wives, but I agree you still had a horrible, traumatic experience and I do not want to downplay that at all. I completely agree that you can be grateful for your life and your daughter's life and still be angry and overwhelmed about what happened to you. Do you have a therapist helping you with the PTSD? We can listen and I think that can be extremely healing, but many of us have also been helped a great deal by counseling professionals.

A long time ago I looked into this website from the UK - http://www.birthtraumaassociation.org.uk/ - I hope there might be some info there that may be helpful for you.

[catherine]

Hi Lisa, welcome to the forums. There are plenty of women here who will understand where you are coming from. I share some of your past experiences, early miscarriages with no explanation. By the time I became pregnant with Lucy, I was well familiar with the insecurities of early pregnancy and the endless nailbiting wait of those early days when you know that nothing you can do can make a difference. So, I was equally stunned when that apparently healthy pregnancy went downhill in about a day when HELLP syndrome kicked in. I was fortunate in that I had coincidentally ended up with an OB practice with a lot of MFM expertise (it was just the main OB practice where I worked and which accepted our insurance).

That enabled me to ride out all the disasters, blood transfusion, kidney dialysis and other garbage, and I too scooped the prize of a healthy baby daughter. Strange times, Lucy's birthday is Friday, which will be 10 years from the day that things went haywire for me... while the rest of the world was dealing with 9/11 and bio-terrorism. I was fortunate to recover very rapidly and with no lasting damage or overt hypertension... although I'm beginning to wonder what middle age might deal me.

What I didn't anticipate were all the sad feelings. Of course you are supposed to be happy that things didn't turn out badly in the end and you are. However, there's an inevitable sense of loss for the anticipated sense of triumph and achievement of a planned labor and delivery. There's also a feeling like your body has betrayed you and you can't trust it any more. I had no sense of things going terribly wrong, how could I reasonably expect to recognize other future signs of illness? Every headache, every twinge of URQ pain leaves you wondering.... what now?

We've always said on these forums that there really isn't a sliding scale for pain... it's what you feel personally. Tragically, there are women here who have lost not just one child, but children to this disease, or who have required just unimaginable amounts of medical intervention to recover their health, even organ transplants. We have posters who hardly felt ill but had to deliver their babies at incredibly early gestational ages and then find a way to come to terms with the roller coasters of NICUs, the complexities of PT, OT, RT and a myriad of therapies and who may have to come to terms with the fact that their child's future health and life-expections have been irrevocably altered simply because they had to be born too soon. We have posters who inch day by painfully anticipatory day through 20 weeks of pregnancy hoping that their diagnosis will not advance or who simply are hoping that this time they get to bring a baby home. Everyone's experience is different, but we are all brought together by our mutual loathing of this disease and our hope that some day we can contribute to preventing the bad outcomes. In the meantime, we've gained strength from learning about each others experiences and that has certainly helped me gain perspective. Recovering from preeclampsia is a journey. I became involved here and ultimately moderated partly because I realized that I was still on mine.

Ten years later, my journey of reconciliation is nearly over, but my determination to participate in this foundation hasn't wavered... I mean to be part of the battle to the bitter end. So, don't hesitate to listen, ask questions, seek support... we can help each other through the worst of this.

[dressagequeen42]

Thank you for your sympathetic responses.

Yes, I am grateful for all that went right WHILE SIMULTANEOUSLY dealing with the grief and PTSD. I adore my daughter and am blessed with an amazing husband who advocated for me every step of the way, but not being able or allowed to live with my daughter for the first six months of her life WAS AWFUL and we are both still feeling the emotional repercussions.

I am blessed in that I do have a good therapist who also endured several pregnancy losses and brain injury so understands both, but I am struggling to adjust to my cognitive disability. I USED TO BE THE ONE who could be counted on to remember everything...my wonderful husband was the one who would forget names and things on our "to do" list. Now I am the one who does that and this is a tough adjustment for both of us.

As grateful as I am for all the excellent medical care (including the cognitive therapy and physical rehab) I do wish that they weren't provided by a "one size fits all" treatment system. Not ALL brain injuries are due to poor lifestyle choices (high fat diet, smoking, or engaging in high risk sports) and receiving numerous lectures on diet, etc. really made the treatment feel even worse than it had to.

Still, I do consider my family (husband, daughter and myself) very blessed.

We recently participated in a "promise walk" for march of Dimes to raise money for research/prevention of infant prematurity and our team (named after our daughter) raised $1,000. Am now considering volunteering with the brain injured or stroke survivors...trying to "give back" though of course raising my daughter and staying "on track" in my own recovery is a full time job right now too.

Good luck to all and God Bless.

Sincerely,

Lisa

[dressagequeen42]

P.S. Ironically, we were due to go in for our next u/s exam a day after HELLP hit. It was just "bad timing."

P.S.2 I had switched from a much more experienced OB to the one who presided over my pg and performed the emergency c-section because I liked **** hospital (when I visited it) better than **** and the other OB did not have privileges there. ****, a small community hospital, is NOT one a patient goes to for any kind of major health crises but I was (wrongly) confident that mine was to be a "straight forward, simple c-section" and I liked the rooms and nursing staff/lactation consultants at **** better than **** or ****. Ah well...

I guess there are no such things as "straight forward, simple c-sections." Birth (as my insurance company informed me when I tried to get life insurance while pregnant) is always "high risk."

It all turned out in the long run (sort of.)

Sincerely,

Lisa

[blythe]

Hello again, Lisa! I had to edit out the hospital names you mentioned, sorry!

I'm so glad you have an amazing therapist who understands just what you're going through. We are always here to listen and share, but sometimes a professional can help with the healing as well.

Congratulations on all the money you raised on your Promise Walk! Your commitment to helping others after your tragedy is an inspiration. Best wishes and recovery to you, your daughter, and your husband.

[dressagequeen42]

Thank you Heather.

I appreciate the kind words.

Even though I have some sadness and anger towards some of the experts who I feel failed me on this long, difficult journey to motherhood, I also have immense gratitude towards all the amazing neurosurgeons, ICU nurses and cognitive and occupational therapists who have helped me recover. I just saw ***, the brilliant neurosurgeon who saved my life, for another cat scan. The scan showed that my brain is healing beautifully (thanks in large part to his expertise).

I just hope that *** likes home baked cookies because he is getting them for the holidays for the next couple of years at least. I love to bake and share them with people I care about and he is at the top of my list. I am also bringing some to the ICU nurses at ****, ****, **** as well as ****, places that all played important roles in my recovery and made sure that baby Sarah would grow up knowing her mama.

Sincerely,

Lisa