Preeclampsia – My HELLP Syndrome Story

Preeclampsia – My HELLP Syndrome Story
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Brian holding Aram for the first time. (My first time holding/meeting him was three days after this photo was taken.)

300,000 women each year will be diagnosed with Preeclampsia or HELLP Syndrome.

Knowing the signs and symptoms is the single most important thing you can do to increase you and your baby’s chance of survival.

Unfortunately, you can’t always trust the medical community to make an early diagnosis. Preeclampsia, and especially HELLP, are finicky diseases in the beginning stages and often go undiagnosed until the situation becomes severe.

Preeclampsia affects between 5-10% of all pregnancies. HELLP is considered rare, but I have met multiple women that have casually brought up that they had suffered from HELLP.

500,000 infants and 79,000 mothers die from Preeclampsia and HELLP each year.

I don’t think I have ever shared my full birth story on here. It is really hard to talk about in detail….but for this cause I definitely think now is a good time. I am a prime example of why awareness saves lives.

Since my HELLP Syndrome pregnancy, I have developed PTSD and a severe anxiety disorder- Aram and I are both alive.

Pre-term Labor

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In Hawaii right before preterm labor started.

I remember being around 29 weeks pregnant and going into preterm labor. Brian was working nights and I was all alone. He lived 62 miles away from our house so I had to drive myself to L&D with my sister on the phone with me the whole way there.  When I got to the hospital, they took my vitals and I met “S” my nurse. She was from Ethiopia. I told her we were planning on adopting from Ethiopia, and she sat and told me stories of what it was like there while we waited for the doctor to come in. She told me why her family came to America. Her sister had developed a rare eye cancer and they came to UCLA for treatment. Unfortunately, her sister passed away from her illness. It was clear that her compassion in nursing came from her own experience on the other end of care.

The doctor came in soon after. They gave me terbutaline and released me a few hours later.

A week later, I had been in twice with the same scenario. My sister being on the phone with me the entire time each visit. No one could really explain why I kept going into preterm labor. “Sometimes it just happens,” At this rate, I knew we were going to be in for an early delivery.

Something is wrong

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At our baby shower. At this point in my pregnancy I was gaining weight daily from fluid retention. By the time Aram had arrived I had almost doubled my pre-pregnancy weight.

At 30 weeks, I remember noticing how swollen I really was. I was an unhealthy 93lbs when I became pregnant and at 30 weeks I think I hit around 130lbs.  Doctors and nurses said nothing about my weight gain except they were happy I was putting on so much because, “underweight women should really gain more than women with normal BMIs.” Which was completely correct. The only problem was that the weight I was gaining was water weight and no one noticed because of how underweight I was to begin with.

At 31 weeks, I was so swollen I thought they were going to have to amputate my finger to get my wedding ring off. I started thinking that this couldn’t be normal. This never happened to my mom or sister in their pregnancies. I Googled “swollen hands in pregnancy,” and the first 100 hits were all Preeclampsia related. At this point, I had never even heard of Preeclampsia. I called in to L&D and a nurse came on. Our conversation:

me: I think I have Preeclampsia, but I’m not sure

nurse: Why do you think that?

me: My hands are really really swollen

nurse: Do you get a ringing in your ears?

me: Yes (it was happening every day)

nurse: Do you see flashing lights?

me: I’ve been seeing stars lately for no reason. The kind like when you stand up too fast.

nurse: Um… you need to come in immediately.

It was about 11:00PM and I told Brian. Off we went to L&D.

When we got there, my favorite nurse from my first trip there was working, the one from Ethiopia. She came over and hugged me and took a look at my blood pressure. At that point, the other nurses told me my pressures were not high and I was fine. “S” had another opinion. She said, “You need to look at what your blood pressure is normally, and then base it off of how much it has changed. Your pressures last time I saw you were like an athletes, now at 135/88, they are less than ideal. I don’t like this at all.”

I, once again, was discharged. They noticed my uric acid was high (a sign that Preeclampsia may be starting) but the midwife I saw gave me antibiotics and told me I had a UTI. I told her I had many UTIs and I know even when the most mildest is forming and I did not feel like I had one..but they didn’t believe me and sent me on my way.

Severe Symptoms

I made it another few days and noticed a dull headache was forming. I went to see a nurse practitioner for a dermatology referral. The tech took my blood pressure and her eyes were popping out, “your blood pressure is REALLY HIGH!” I was over 145/93. I went in to my appointment and the NP said NOTHING about my blood pressure. I figured it wasn’t bad and went home.

My OB appointment was a few days later. The tech was covering for multiple people. I asked her what my urine dip was, “just trace” (meaning not Preeclampsia) I told her my blood pressures had been high. She never came back in to take my blood pressure. I left the appointment and forgot to have her take it. When I got home, my medical record was emailed to me. I saw that she put in a fake very healthy blood pressure of 105/69, which would later come back and bite me in the butt. This was partially the reason I kept getting misdiagnosed.

I made it to my dermatologist appointment, where the tech took my BP and it had made it to 150/98. I decided at that point I better go down to the OB nurse. She took my blood pressure and it was 156/105. She told me I needed to immediately go to L&D and with my blood pressure so high, I shouldn’t walk. Well, this was pre-hypochondriac Jamie, so I walked.

This is where I met Nurse Rudolph. She had me lay down to get my blood pressure unnaturally lowered. It then went down to 138/80. The doctor came in to check me, but she got to him before he could see me. She just said, “She’s fine!” and gave him something to sign without reading my chart.

My mom flew in that day.

The next morning I started bleeding and going into preterm labor. If these doctors weren’t going to notice something was wrong, Aram was going to make them.

We went to the hospital where I had the most lovely Asian doctor and nurses. They worked together as a team, which was great, but since they all spoke Mandarin to each other I felt a little clueless as to what was going on.  However the team took me seriously, and finally gave me the validation I had needed. At that point, I realized I was sick and I was expecting to be sent home again. Luckily because I was bleeding my urine dip came up a misleading “plus 3″ (needed for diagnostic Preeclampsia) The doctor looked nervous and immediately gave me a steroid shot in my side (to mature babies lungs for an inevitable preterm birth).

I then was taken into an observation room where I met my Perinatologist. I saw him a couple of times months after my delivery where I found him to be the most kind and ethical doctor. Unfortunately, that would be the only time I saw him during my stay in the hospital.

Feeling Completely Alone

In the days following, I became a nervous wreck. One of the physical symptoms of HELLP is nervousness and anxiety, which I noticed increased significantly right before I found out how sick I was. However, I believe the majority of this came during the time I discovered none of the doctors or nurses believed I had Preeclampsia. My mom and Brian knew nothing about the disease and also trusted the doctors, so I felt like I had lost them, too.

I had a resident doctor who actually thought my nervousness was caused by my blood pressure getting taken every 30 minutes. She then called for my blood pressure to NOT be taken. I also refused any more terbutaline (the perinatologist advised against more due to my heart rate being so high, but apparently no one was reading his orders). The same resident doctor told me that the staff would be mad and essentially hold a grudge against me if I had a preemie baby because I refused the medication.

The single most damaging moment for me was when nurse Rudolph returned, giving me “care” during my time in observation. I remember telling her how I was glad I had made it to 33 weeks and had my steroid shots in case the baby had to be born early due to Preeclampsia. She sat down next to me and said, “Oh Dear, stop saying you have Preeclampsia. You don’t want Preeclampsia. Worst case scenario, you and the baby would die! So stop saying you have that because you don’t.”

She then explained to me that Dr. Rudolph would be discharging me that night, and tried to make me feel guilty because other people who “really needed” the beds in observation could not get in and I was basically taking it away from “people who really are sick.”

I really don’t understand what her motives were behind all of that, but I have never fully recovered from the psychosis that came after realizing I was totally alone. I knew I was sick and I thought, “Wow, they are really going to let me die…”

I was on the phone with my sister in a panic and I remember her and her husband praying for me.

I then had a new doctor walk through the door.

Breakthrough

He came in and sat on the cot that Brian had been sleeping on for the past few days. He introduced himself and said, “Well, your 24 hour urine showed that your kidneys are functioning beautifully (which means I did not have diagnostic Preeclampsia) but how are YOU feeling?” I told him I felt like I was going to die. He then answered with the best words I have ever heard, “You are the best judge of you. We will keep you here and I’m going to run a few more labs.”

At that point, they came in to do some blood work and I began to read 1 Samuel chapter 1. I remember vividly reading and praying.

I was interrupted by two nurses carrying in a bag of magnesium sulfate. The nurses were really calm and sweet, but wouldn’t let me know what was going on. Then the doctor came in.

Doctor: “We have your blood work back. Your liver enzymes have tripled and your platelets have dropped to 120K. I would like your permission for a cesarean.” 

Me: “YES!”

My mom: “There is no way of having a natural delivery?” (my mom was delirious and has no memory of saying this, but when Brian and I told her what she said, she replied with, “Why didn’t you punch me in the face?”)

Doctor: “No, her condition is very severe. We will be operating in 30 minutes.”

Aram is born

It wasn’t even 5 minutes and I was in the delivery room. There was a staff of about 15 people waiting for me (and Aram)- it was weird knowing they had all known about the severity of my condition before I was even told.

Aram was born quickly after. I remember hearing him crying and one of the NICU staff members trying to bring him over to me, but I was groggy from the mag and don’t remember much.

The next few days are a huge blur. I thought my blood pressure was going to go down immediately after delivery, but it didn’t. My doctor was away and I somehow convinced the on-staff doctor to keep me on the magnesium sulfate an extra day.

I remember my doctor frantically coming into my room when he returned. At this point I had turned into a huge hypochondriac and I felt I was the only one that could take care of myself.

Doctor: “Why are you still on magnesium sulfate!?”

Me: “My blood pressure is still really high and I thought I needed an extra day of it.”

Doctor (laughing, kind of): “How were you able to convince the doctor to do this? You know that this is a delicate balance? If you stay on it for too long it becomes toxic!”

Me: “I had no idea…”

Great, so I already almost poisoned myself….

I was discharged and told to come back in two weeks for a blood pressure check. I was not told that most preeclampsia deaths happen postpartum, or to be checking my blood pressure at home. I had to figure this out on my own. I had scary but benign symptoms like weird jerking movements from my brain being swollen…Oh and spontaneous bleeding from my eyes and nose due to my platelets dropping under 100K.

However, my blood pressures were still a cause for concern.  We bought a blood pressure cuff, and made a trip a few days later to the ER where they were so concerned I had to get a CT scan of my head.

I then went to see a GP about controlling my blood pressure. It eventually went down, but I needed a lot of medication to balance it out the first several weeks. My GP knew nothing about Preeclampsia, definitely never heard of HELLP Syndrome (much like a lot of the L&D nurses)- and he was even more confused about how to wean someone off of blood pressure medication.  Once he puts people on blood pressure medication, they are generally on it for life. We had to learn together.

I’m not forgetting about Aram, just saving him for last. There are more deaths of infants from Preeclampsia than mothers. Aram was one of the lucky babies.  Preeclampsia is a disease that leads to a catastrophic cascade of events. Eventually your blood flow gets messed up and your entire body starts to attack itself.  PE babies often have IUGR from the body trying to protect the mother (a balancing game of nutrients in any pregnancy). In my case it chose the baby over me, and my body was still able to hold out to 33 weeks.

He was born with developed lungs (thanks probably to that quick thinking L&D doctor), a healthy weight, and was doing as well as a full-term baby. His sucking reflex wasn’t quite developed yet, but it took about 10 days and he was able to nurse like a pro.

So that was my story. Unfortunately, it isn’t that unusual. Here is an almost identical story (in terms of care) to mine, except this mother did not make it. Her husband wrote this story, here is the most heartbreaking section (at this point in the story she had the baby, was discharged, and home with no instructions):

That evening we went to bed at around 11:15pm. About an hour later I was awoken by her and was told that she “needed my help.” Quite groggy, I took a moment to get my bearings and then accompanied her into our kitchen. When I asked her what was wrong, she said she couldn’t breathe and quickly devolved into what appeared to be hyperventilation accompanied by extreme anxiety and fear. I tried to calm her but it just increased to a point that about 5-10 minutes later I called 911, having determined that it was beyond my scope of understanding. I stayed on the phone with the dispatcher for 7 painful minutes while my wife went from a seated-on-the-chair position to a seated-on-the-ground position to a laying-on-the-ground position. At the same moment that the paramedics arrived, my wife stopped breathing and began to turn blue. Though the paramedics tried in vain to get a pulse and start her breathing again, they ultimately left the house performing CPR on her, heading to the hospital only 5 minutes from our house.

I was told upon arriving at the hospital that they had managed to regain a pulse after 25 minutes but that my wife had most likely suffered severe brain damage from the lack of oxygen. Their prognosis for recovery was grim, with little hope given for any meaningful recovery. For all intents and purposes, my wife had died in my arms on our kitchen floor, her final words being “I love you.”

Here is a video about another mother that died of HELLP:

And this video demonstrates the importance of blood donors out there! Saving so many mother’s lives pre- and post- pregnancy.

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59 comments

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  1. Zoe - SlowMama 13 December, 2011, 15:19

    My blood pressure soared just reading this story! Indeed, you are one of the fortunate ones; Aram, too. No wonder you developed PTSD and other anxiety issues.

    I’m amazed at the numerous things quite common to women and pregnancy that still get very little attention…including post-partum depression. A friend who just had a baby struggled a lot in the first three weeks and thought she was abnormal only to find out many women have such troubles. She wondered why more women don’t talk about it and more experts don’t bring it up.

    Reply this comment
  2. Ronni 14 December, 2011, 14:32

    I did not know that pre-eclampsia could be this serious! Wow. I’m so glad you’re OK. It’s so frustrating that the nurses and doctors weren’t listening to you. Sometimes, they just need to check their egos and take care of their patients.

    This entry is super serious, but I had to giggle at the “Things I Don’t Like” tag.

    Reply this comment
  3. molly 21 December, 2011, 09:09

    That story is crazy!! I am glad you are sharing your story!! thanks for the info!!

    Reply this comment
  4. Vanessa 2 March, 2012, 16:07

    Being a HELLP survivor that went to the very brink of losing my life and my sons life, I really feel it is Essential that PE and HELLP be brought to the forefront internationally. Alot of doctors and baby books etc don’t discuss the sinister illnesses enough and therefore not many women have even heard of it before they get it or even know what to look for as key symptoms. Bring on PE Awareness month!! Needs to be more information readily available for EVERY pregnant woman. Too many women and babies are losing their lives for something that can be treated and managed if caught early!!

    Reply this comment
  5. Carlo/Carlo At Your Service Productions 9 March, 2012, 09:10

    Wow Jamie, you made it. You and Aram made it, thank God.

    Thank you for sharing your extremely painful to tell story with everyone. I never heard of the disease that you were plagued with, making your post invaluable. You never know who I might meet, who might be pregnant or be related to someone who’s pregnant, who is experiencing the same symptoms. We all have to look out for each other, and “play doctor”, as you well know due to some of the people in the medical community that you encountered.

    I’m just glad you made it. You’ve lived to still be here to experience having a beautiful family. God rocks!
    Again, thank you for sharing your story. I learned a lot. Stay blessed.

    Reply this comment
  6. Alecia E 28 March, 2013, 22:11

    This sounds much too similar to mine (not trying at all to take away from yours). I know how much courage this has taken to share, I have yet to share mine. Reading this brought back memories of calling the hospital bawling because I felt so awful, and them telling me to sleep it off. They finally took me seriously after 6 weeks of this and making the poor Walgreens pharmacist call my doctor after getting several readings around 180/115. Sending positive energy your way.

    Reply this comment
    • Jamie Lynne Author 28 March, 2013, 22:15

      Oh no, you’re not taking away from it at all. There is comfort when someone can empathize with you about this. Especially because of how alone you feel when the medical professionals aren’t taking you seriously. *hugs*

      Reply this comment
  7. Mandi Woolery 28 March, 2013, 22:28

    Oh Jamie, first of, huge hugs to you. I am so thankful that you and Aram are alive today. Secondly, I can not thank you enough for sharing your story. It is SO important for people to know the signs, and understand how severe pre-e & HELLP can be. I can promise you that someday this post will save someone’s life.

    Reply this comment
  8. Laura 29 March, 2013, 00:32

    My best friend went through the same thing and ended up delivering her daughter a month early. We were only nineteen, but we all realized something was wrong when she started complaining of constant, debilitating headaches, gained seventy-five pounds and began swelling horribly. It just wasn’t right and we could tell. Luckily her and the baby both made it through, but Lydia was very small, only 3lbs. 15oz. Lydia’s nine now and she has some medical problems, but none too serious. Ashley’s afraid to have any more children for fear that it will happen again.

    Reply this comment
  9. Becca 29 March, 2013, 01:30

    My (second) baby is 2 weeks old, and I suffered high blood pressure during pregnancy. I was placed on strict bed rest at 34 weeks (and I had to fight for a doctor’s order for this. I told them that I get a migraine when I did anything besides lay on my side and that I need to lay on my side until the baby comes). It took my doctor a week after that (and 3 trips to the hospital with blood pressure spikes, vision changes, and migraines) to sign paperwork for my employer so that I could be on bed rest. There were a few minor scares for the next month, but mostly, bed rest did the trick. My (repeat) c section was schedules for 39 weeks, but at 38w3days, my blood pressure spiked at 205/105, I had a migraine, and was seeing spots everywhere. I didn’t feel like myself at all, but like I was floating and watching these happenings from the ceiling. It wasn’t right. Although my bp remained that high for over an hour, it went down a bit (150/90) after a few hoursof monitoring, and my urine/blood tests came back normal. They started to tell me I could go home and that they’d see me at 39 weeks for delivery. I told them that I didn’t want to wait until then – it was only 4 days! When I asked if they would do an emergency c section that night, they told me no, because my c section would have to be scheduled for 11pm (because of when I had last eaten… But really, so what, if it was safest for me). The doctor said no, and I BEGGED him to schedule me for the morning, and he reluctantly agreed. Everything turned out fine (baby boy was born at 9lb5oz and nurses like a champ), and my bp returned to safer numbers immediately after birth, but I am scared/pissed to think about what might have happened if we had been forces to wait the extra few days.

    Reply this comment
  10. Andrea 29 March, 2013, 05:24

    *hugs* I’m so sorry you and your family had to go through this. I’ve always said we need to take our health care in our own hands, especially when we know something is wrong but aren’t getting the right answers or attention.

    You did the right things and pushed back where you could. That’s what counts. And you’ll never, ever have to go through it again. You’ve done the right thing by getting the information out there and sharing your story. <3

    Reply this comment
  11. Maytina 29 March, 2013, 10:45

    So so so glad your situation turned out well. I literally burst into tears when I read that excerpt. So tragic and avoidable! :(

    Reply this comment
  12. Chantal 29 March, 2013, 11:25

    Oh, Jamie! I’m so glad you made it! thank-you for sharing your story. It seems so odd to me that when women want a normal natural labor and they are healthy, the hospitals often over-treat them and provide maximum interventions. But when you were truly ill and in need of necessary medical care, they totally failed you!!! Shame on them!!! And yay for you for being persistent and finally getting the care you needed.

    Reply this comment
  13. Maryeah 29 March, 2013, 17:53

    Your story is not very different from mine– only the swelling came on sooner and events happened much faster. My son was born at 29 weeks. He’s done we’ll, but it’s been a rough road. No one gets the PTSD. Even my shrink blew me off. Still, I have a beautiful boy, and he will be two in a couple weeks.

    Reply this comment
  14. Megan 30 March, 2013, 02:04

    It shocks me how often these symptoms are overlooked. I was admitted at 34 weeks on a Friday, with a BP of 150/100, proteinuria, and headaches and spots. The perinatologist did a consult and said baby needed out ASAP, because I was showing signs of an impending stroke. My OB was if course headed out of town that (3 day holiday) weekend, and the OB on call from the practice was horrible. He came on, stopped my induction, and decided my BP was from anxiety. He discharged me on Monday morning after having given me Ambien all weekend to get slightly lower BPs.

    At this point, I was home on bedrest and 4 blood pressure medications. By Monday night my BP was getting even higher, and we headed back to the hospital after talking to the perinatologist. My entering BP was 170/110, and that same doctor gave me Ambien again, and told me I needed to get my “anxiety” in check. He refused to listen to the fact that my BP readings were even insanely high while I was asleep.

    The next day I had another ultrasound and consult with the perinatologist, who said baby needed out, just like they had advised the Friday before. We tried for an induction, but at some point my BP was just too high and I was rushed for an emergency csection. Thankfully my daughter was perfect and healthy, and my BP corrected itself quickly after birth. I was lucky that I didn’t get HELLP, but I empathize with feeling ignored by your doctor.

    Reply this comment
    • Jamie Lynne Author 2 April, 2013, 01:19

      HELLP is so odd because some people get it, others can have such severe preeclampsia they go straight into eclampsia without any issues with HELLP. It is scary no matter if it is PE or HELLP..or both.

      I can’t believe they didn’t listen to you.

      Reply this comment
  15. Tracey 1 April, 2013, 08:09

    So very sad that a lot of doctors don’t know & misdiagnose pre eclampsia/hellp. My daughter was misdiagnosed & her ob ignored her symptoms saying she was fine & everything was normal. My granddaughter was born a month early by emergency c-section and my daughter was never released from the hospital until she passed away 47 days later from Severe HELLP syndrome (class 1 hellp).

    Reply this comment
  16. Lara (australia) 8 April, 2013, 21:34

    . wow Jamie what an experience no woman (or man) should ever have to experience, sorry this happened to you.
    . though from reading the other beautiful ladies comments about their experience, only proves to show that the modern day medical system that people seem to place so much trust into is extremely floored, and women need to TRUST & LISTEN to their own bodies, and Demand that their needs be taken seriously.
    . far too often women are belittled and ridiculed for being overly anxious and being hypochondriacs – utter rubbish. This attitude only demeans woman’s inbuilt ability to know and sense something is awry…
    . but what would a medical system do with an abundance of powerful woman KNOWING that care is needed and they (the dr’s) weren’t the one’s to advise this.
    1. it would seem that woman know their bodies better than doctors (yes they do),
    2. it would mean that people would have less faith in the medical system (the system then would begin to crumble & have less control over our lives – pharm co.’s will make less $ as they invest in us being sick),
    and 3. woman being powerful knowing beings that are revered and respected for their innate knowledge and knowingness (goodness, they’ll have to start burning us again!)
    Hooray for all you beautiful woman who won’t take “go away” as an answer.
    Trust yourself always.
    Know thyself.
    Know and trust your instincts, you are always right.
    xox
    (may these stories be folk-lore of the past someday very, very soon – much love to you all)

    Reply this comment
  17. Lindsay 8 May, 2013, 00:16

    Wow, crazy story. I can’t believe they didn’t believe you. It made me realize how lucky I was that my PE and HELLP were caught early by doctors who understood. My daughter was born at 26 weeks, also by emergency c-section. She finally learned how to breastfeed when she was 9 months old, then continued until age 2 1/2! I pumped so much milk I ended up donating 2 chest freezers full to an adopted baby. :)

    Reply this comment
  18. Kathleen 8 May, 2013, 05:53

    Golly, I’m in tears. I had several issues in the lead up to my daughters birth, but had LOW blood pressure. Despite that, I still had blood taken multiple times to check for pre-eclampsia. I’m not sure if its an Australian thing or due to my care being with midwives at a birth centre, but checking for the signs and symptoms were mentioned at every appointment. They were very thorough. I ended up with a very traumatic, prolonged labour that never made it to transition and an emergency c-section. My husband is the one with PTSD though, he believed that we were both going to die several times. Its incredible how something that is such a normal, often beautiful, part of life can be so utterly terrible and horrific. Much love.

    Reply this comment
  19. julie 24 May, 2013, 16:10

    your story brought back flashbacks to this terrifying time in my life, there are so many parallels. thank you for sharing. like you, my pre-e did not resolve itself after birth. i gave birth via c-section after induction, in a cloud of exhaustion, epidural haze and fogginess. it was not the natural birth i had envisioned. during recovery, my BP spiked and i was administered BP meds via IV and also managed with zombifying oral does of labatelol and methyldopa. meanwhile my baby was admitted to the NICU with sepsis/bacterial infection. it was a veritable nightmare. i had those crazy uncontrollable body jerks and nobody could tell me what they were caused by. they kept switching the BP meds thinking it was due to those… after release from the hospital, i was readmitted 2 days later with BP of 200/127. i was terrified i was going to die. then came that awful mag crap. i sat in the ER for damn near 4 hours while they tried to figure out what the hell to do with me. the ER doc, who had been in practice over 20 years, had never seen a case of post partum eclampsia. and i live in san diego – a major metropolitan area! they didn’t know whether to send me back to labor + delivery and tag me as an OB issue, or whether to send me to cardio. someone made the decision and sent me to cardio, where i was administered more crappy BP meds and then discharged 2 days later. baby girl was discharged after 10 days in the NICU. i was closely monitored by my OB from that point on and only took the BP meds if my pressures rose above 140/90. she successfully weaned me off them at 5.5 weeks post partum. worst nightmare of my life. all i wanted to do was be a mama to my new baby and instead had to deal with c section recovery as well as pre-e. i don’t know if i had true PTSD from the experience, but i will never carry another baby for fear this develops again. my husband was immediately snipped to ensure this. it saddens me as i’d love to have another babe, but we are open to adoption as well and love the notion of it.

    Reply this comment
  20. Laura 28 May, 2013, 01:17

    I had severe preeclampsia and almost died. Unfortunetly it ended up killing my son. It’s such a serious disease. The more we talk about it them more we can bring awareness so that others can know the symptoms and save themselves.
    It’s scary how little the medical community knows about this disease. It’s one of the oldest diseases on record! And still no clue how to prevent it!

    Reply this comment
  21. Jacy 2 June, 2013, 15:35

    Wow. I am an ICU nurse, and not a mom yet, but I have long been fascinated by childbirth and breastfeeding. In other words, I’ve tried to educate myself a good bit and I still couldn’t have told you the symptoms of PE/HELLP other than that BPs out of range are *not good*. I just want to apologize to you on behalf of the medical professionals who disgrace their professions by not listening to their patients. It doesn’t matter how much we think we know, people know their own bodies better than we do, and it’s always worth following up. I’m sorry for all of the women who have posted their stories, and especially the ones unable to post the stories themselves because they didn’t make it. Thank you for sharing your story, if only because it encouraged these other women and educated me. I’m so sorry for what you went through.

    Reply this comment
  22. CJ 11 June, 2013, 08:06

    Oh I so appreciate you writing this! At 37 weeks I woke up in the middle of the night sick to my stomach with a horrible upper back pain between my shoulder blades. No position made it better. After an hour I took Tylenol and the pain went away enough for me to sleep. I woke up feeling fine the next morning. Over the next 2 weeks this happened 3 more times. At my 39 week appointment I told the doctor I thought I was having gallbladder attacks because of course I had diagnosed myself. She said, let’s take some labs and we’ll figure it out. The lab tech said they would send the bloodwork to the hospital and if I didn’t hear anything, then that was good news. I didn’t hear anything, so two days later I called just because I wanted to make sure. The nurse said, let me call you back. I called her back 4 hours later and again, I got the run around. Turns out they had lost my bloodwork. They then called me back and said the doctor had reviewed the labs and wanted me to come into L&D right away. I took my sweet time because no one else seemed to be in a rush about it. I got there at 6:30pm, was hooked up to all sorts of stuff (one being mag) but I didn’t see a doc til 11pm when I was told they were going to induce immediately. It was my due date, so I was ok with this, but still didn’t see what the big deal was. I did not once show high protein in my urine, and the only time i had high blood pressure was when they admitted me that night. But apparently my liver enzymes and platelets were out of control, and they told me I had HELLP without preeclampsia. My lil guy spent 2 hours in NICU, but has been perfect ever since.

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  23. Jaime 18 June, 2013, 17:00

    Im so happy that you and baby are okay. I too suffered from HELLP syndrome abd delivered at 28 weeks. My son is now 10.5 months and doing extremely well as am I. I was sent home from urgent care with a blood pressure of 165/109 and a prescription of Vicodin and told pain was causing my high blood pressure. I never went into preterm labor but being pregnant twice before with wonderful pregnancies I knew from day 1 something was wrong. I had several blood tests sone even showing an increase in liver enzymes. Luckily my OB was very well versed in HELLP and I spent my last week of pregnancy in the hospital on bedrest. I delivered when my liver almost completely shut down and my kidneys stopped working. I immediately had my tubes tied after delivery. I received 3 blood transfusions and still fight my blood pressure which I never did before. Ive also been informed by my OB that I will forever be at a higher risk of heart disease. We were a success story. Praise the lord

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  24. Jaime 18 June, 2013, 17:02

    Oh and I will also say I never presented with normal symptoms. I never swelled and only had one really high blood pressure. I was diligent the only reason we aee still alive

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  25. Megan 19 June, 2013, 10:43

    I had preeclampsia with my son. He was born via emergency c-section at 27 weeks 3 days. His birth, life and my life are all a true miracle.
    So thankful that you and your son are well, as well as me and my son!

    Reply this comment
  26. Marilynn Salgado 27 June, 2013, 23:16

    I appreciate hearing your story. I have many times wondered what it must have felt like from that perspective. Althought you were fortunate enough to survive, my mother was not. And I have searched for many many years to find a way to know what it was like… What it felt like…and what she went through. Thank you for sharing. Cherish your life love & family with all your might and give life your all because you’re one of the lucky ones.

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  27. Jaymie 28 July, 2013, 21:36

    Thank you for posting this. I was one of the six %. I went straight into HELLP without pre-e. My daughter was born at 30 w 4days. We are both fine, and I think that stems from me listening to myself, being able to call a 24 hr medical line who advised me to immediately go to the hospital and being 10 mins away from a great, large regional hospital. I am now pregnant with #2 and am being watched VERY carefully.

    In spite of all of my luck, I still had PTSD and am still freaked out.

    Reply this comment
    • Jamie Lynne Author 29 July, 2013, 17:36

      Hey Jayme. I am so sorry. I still have PTSD, too. It’s gotten so much better. I would recommend talking to a therapist and trying not to read too many birth stories while you’re pregnant. You know you’re high risk and the doctors are monitoring you. Your case is unique, so remember that. There is no need to compare yourself to others during this time…well, this is just my 2cents because I know I would go mad reading others horror stories if I were to become pregnant again.

      The fact that you are being watched so closely is really something to hold on to. You are going to be fine!

      Reply this comment
  28. Jennifer 23 August, 2013, 15:57

    My son Michael was born still at 32 weeks due to severe PreE and HELLP Syndrome. I received 3 days worth of transfusion and remained in ICU after his emergency delivery. I had started the shakes right before surgery which they believe is the start of a seizure. I thankfully made it, but unfortunately Michael was born with his wings. Have since went on to have my Rainbow baby who is now a 2.5 year old crazy toddler but I too, was tossed to teh side when I went to L&D, only to return at 5 a.m. the next morning after waking up covered in blood. I knew, at that moment he was gone. :(
    So happy to read you and Aram made it safely. I stil have PTSD, almost 5 years later and my anxiety is the most terrible feeling in teh world. Anxiety about EVERYTHING ALWAYS!
    Blessed are you to have a healthy fighting baby. God bless.
    Jenn

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    • Jamie Lynne Author 24 August, 2013, 07:20

      Jennifer,

      I cannot believe how mistreated you were. Even though I was mismanaged pretty significantly in L&D, everyone came home… I just…I have no words for the complete lack of care PE and HELLP Syndrome women seem to get, and it results in the most horrific outcomes possible. What they did to you was wrong. I am so sorry for the loss of your precious son.

      Yes! Anxiety is terrible and I’ve noticed during anxiety attacks people have no idea what to do. They don’t understand it. Have you felt yours has lessened over the years? Have you been talking with someone?

      If you want to talk about this privately, email my assistant Lauren, contact@iamnotthebabysitter.com. She will forward me your message and we can chat.

      <3 *hugs*

      Reply this comment
  29. Diana 27 August, 2013, 12:00

    It is horrible that you were treated like this. I hope you were able to file a complaint against them.

    Reply this comment
  30. Angie 6 October, 2013, 10:41

    I also have had an experience with a lack of knowledge about this horrible issue. I had elevated bp throughout my last few weeks of pregnancy, which my obgyn figured was just normal for me because it had been slightly elevated since my last pregnancy. I was working, and dealing with extreme fatigue and headaches, as well as swelling and weight gain for a few weeks, when I had been losing since I had gotten pregnant. All passed off as normal pregnancy symptoms. I went in for my obgyn appt at 28 weeks and told my doc that I had been having very painful stomach aches on and off for a couple weeks, and they reminded me of the pain I had with my gall bladder before it had been removed. She told me it was probably gastritis and there was a trace of protein in my urine but no big deal, and I got sent home. Two nights later, after working all day, I had another round of pain. So intense I couldn’t do anything but curl up in a ball and wait for it to pass. I woke up in the middle of the night with another round starting, and this time it wouldn’t go away. I was miserable and knew it couldn’t be normal. Drove myself to ER, and found out my bp was extremely high. Doc came, looking irritated at being called in for a stomachache, gave me a lecture about my bp and said she was going to get me a scrip for malox. Had blood work done as an afterthought, just in case. A little while later, she came in and told me an ambulance was on its way to take me an hour away to a hospital with a nicu because baby had to come out within a couple days. Got to hospital and hadn’t blood drawn a couple times then rushed for an emergency c section because my platelets were so low. Told I might need a transfusion and then I was knocked out. Kept at hospital for a week because they had problems controlling my bp, and was sent home on 5 different bp meds. Despite being born at 28 1/2 weeks, my daughter was a spirited little fighter and was sent home after a month and a half in the nicu. She is doing wonderful now. Just over a year and determined to catch up on everything. I still have issues with my bp, and my anxiety is much more of an issue now, I had problems with it before the pregnancy. Between those issues and the meds I’m on for them, I really feel as though I haven’t had many normal days since I started to feel my pregnancy, even though it’s been just over a year now. I found this site while looking for anything on dealing with hellp long term. I can’t help but wonder if there was more research and awareness, it would make a huge difference to prevent things that all these stories have talked about. I am so sorry for those of you that t have lost someone to hellp,and those that are still dealing with problems from having it. Despite its effect on my life I am grateful that my daughter and I are okay in general.

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  31. Melissa 14 October, 2013, 10:08

    I had a very similar story. I had PE and HELLP. Having a child fighting for his life in the NICU, while I’m in the ICU was AWFUL! I wanted to be with my baby so bad. PE and HELLP almost killed me and my Son. He is 8 now, but I am still haunted by the horrible experince. I want another child so very bad, but not willing to take the risk. I count my blessings every day.

    Reply this comment
  32. Jessica 6 November, 2013, 19:25

    It’s so great knowing that what I went thru, I am not alone. My heart breaks for those mothers and babies that did not make it. It has been almost two years since I had my Hellp baby and I still have a hard time talking about what I went thru. I remember being so relieved after she was born and hearing her cry, (she was 31 weeks and 5 days). I had emergency surgery and almost had a hysterectomy. I would love to have another baby, but feel torn and should really feel incredibly blessed for the two little girls I already have.

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  33. Heather W 27 November, 2013, 20:12

    Wow this story took me back. My situation was pretty similar. It was my second child, and I knew that something was wrong, but the doctors couldn’t figure out what it was. Having had a healthy pregnancy already, I just knew that things weren’t going right. At 32 weeks, the day I had my emergency C-section, the nurse got a new blood pressure machine because my blood pressure was so high, she thought the machine was broken. Once they sent me to the hospital and tested my blood, they started prepping the OR, however my platelets were so low that they had to put me out, so I was not awake during my C-section and my husband wasn’t with me. The nurses forgot to update my husband (I guess because the husband is usually with the wife) and he thought that I had died.

    Once my son was out of the NICU I also found myself very anxious, and because we struggled so much with nursing I felt like such a failure. I ended up seeing a therapist for a bit and all I needed was someone to validate my feelings.

    Thanks for sharing your story. I had never heard of HELLP before I was diagnosed with it.

    Reply this comment
    • Jamie Lynne Author 27 November, 2013, 20:29

      Oh, Heather…I am so sorry.

      I was able to stay awake during the c-section, but I remember the entire time thinking at any moment I was going to have a stroke.

      Breastfeeding really wasn’t on my mind until about two weeks later. My husband pumped for me while i was sedated the first three days of my son’s life and my milk did come in. If there was any sort of problem I don’t think I would have even bothered trying. It is an odd feeling having a new family member and being in personal survival mode. I still feel guilty about that. I couldn’t have those happy new feelings about being a mother and focusing all my attention my child for the first few weeks because my thoughts were on staying alive for that new little person. Anyway, don’t feel bad about the breastfeeding…not at all.

      I saw a therapist for my PTSD, too! He was great. I really feel like time is the most healing, though.

      *hugs*

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      • Heather W 29 November, 2013, 19:36

        The breastfeeding was a major struggle, but I did manage to nurse him – I was totally committed, but I still felt like a real failure for some time. It ended up that I actually had a low milk supply and I supplemented for ten long months before my body actually made enough milk that I could ditch the formula. It was a real rough time for me, but having HELLP and knowing he would end up being my last, I was so desperate to nurse. (You actually featured my story over the summer on your site.) He weaned a few months ago at 18 months and I really miss the nursing, but I am so happy I stuck with it.

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  34. Alisha 11 December, 2013, 10:48

    What a frightening experience for you! My sister died of HELLP just this past August; none of us had ever heard of it before! Thanks for your post

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  35. Denise 13 December, 2013, 21:56

    So very sorry for the issues you had. I also had hello but my story is very different. It was a Thursday and I didn’t feel good not terrible . I went on with the day. That night I still wasn’t feeling good and was going to call the hospital but I was at my obgyns the week before and everything was perfect even had an ultrasound where I saw my baby girls face. I will add I was there the week before that as well because of an uti. So I just thought the uti had come back, I figured in the morning if I still didn’t feel well I would call the doctor. The next morning I called but I had a sinking feeling because I hadn’t felt her move yet. They told me to go to l&d when I go it there they tried to find a heartbeat but no luck so the did an ultrasound. I knew as soon as I saw the screen I had lost my baby. I had a placental abruption it had completely torn away from me.
    The Dr said he would induce me because being almost 34 weeks there was no other choice. I was waiting on blood work when my doc came in and said they needed to give me platelets because mine were low. After that all hell broke loose. They came back in to tell me they had to fly me out, my kidneys had shutdown, liver was starting to fail and I was bleeding internally. I was told I had hellp and dic which keeps your blood from clotting and Is very serious. They said they didn’t know if I would make the flight.
    I went downhill from there going in and out, I made the flight but was told I couldn’t deliver until I was stable enough. On Saturday they had to deliver I was getting worse and said things should get better after I deliver. That was the worst thing in the world, it seemed to take forever . after delivery I became somewhat stable but my kidneys and lkiver weren’t very good. I remained In the hospital for a few more days until I begged to go home . I just wanted to see my boys which were at home 4 hours away. I had to promise to see a kidney doc and do blood work as well as have my bp taken every day.
    That was the end of April of this year. My kidneys are much better although it took a few months everything else has gone back. They said I was very lucky my kidneys are OK but I stllk have to go back and have them checked again in a few months.
    I had never heard of HELLP or DIC until that day where I lost my baby and fought for my life. I can’t understand why something so critical isn’t talked about more

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  36. Emma 24 January, 2014, 14:23

    Thank you so much for finding the strength to write this! I had a similar experience and maybe one day I’ll have the strength to write it down at least so my daughter is aware when she’s older but for now its still a subject that I really struggle with. I’m am so glad that everything turned out for you in the end though although I know that doesn’t ease the pain and anger of what happened to you x

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  37. Hanna 12 March, 2014, 19:15

    I had my daughter at 43 years of age. Always had low-ish blood pressure. At 35 weeks, I was swollen like a balloon and had pitted edema. Still my stupid OB said I was okay to hang on. I felt awful. Sick, sick, sick. I just knew it couldn’t be right to feel so physically unwell. I gained 18 lbs over 2 days and lost 25 2 days later – yo-yo weight. At 36 weeks my protein was about 350 and I said, “Please, let’s deliver me already – you guys are going to kill me!” Finally he agreed to call the High Risk OB at the hospital and have him see me. I’d been drinking over a gallon of water/day for weeks and when I was asked to pee into a white styrofoam cup, it looked like dark tea. I was so alarmed. The High Risk OB said “I don’t like how you look” and literally walked me down the hallway to L&D. My OB walked into my room and said “welp…I guess you talked him into it,” as if I could talk a specialist into having me deliver when he was the one who examined me and was concerned about my labs and pitted edema. I hate that OB to this day!!! My daughter was born via C-section a few hours later, 2 days shy of 37 weeks – perfectly healthy; straight to nursery. My kidneys then shut down for nearly 24 hours – no urine output and I was drinking a ton, as prescribed. I was so damned angry. I kept thinking I was going to punch my OB in the mouth if my kidneys were destroyed all because he refused to deliver me 2 weeks prior. Finally, they began to work again – whew! 4 days later I went home and within hours my BP shot up to 190/105. Went to ER where it was even higher. Obviously diagnosed with post partum pre-eclampsia. Was placed on Magnesium IV for 24 hours with various BP meds and went home 2 days later. I will never understand why they took such chances with my life, needlessly. If I’d only been 25 weeks pregnant, I understand wanting to eek another week or two or more out of the pregnancy and walking the delicate line for the sake of a healthy baby. But at 35 weeks? Come on! At that point, baby is likely to be absolutely fine and now you’re just risking mother’s health!

    I would never have described it as PTSD but when I think about it, I get anxious. Even if I weren’t too old to have another, I would NEVER carry another child. No way. That was a nightmare.

    When I think of how I felt the last month of my pregnancy….how ill I felt, how badly my feet ached to the point that I couldn’t walk more than a few feet and had to sit down, how swollen I was everywhere.

    The hardest part was being blown off, ignored, being made to feel like I wasn’t concerned with a premature birth, or that I was being too dramatic or that I was a weakling. I felt so alone and I had this sense that they’d all just let me die and there wasn’t really anything I could do about it anymore.

    Ugh….what painful memories!

    Reply this comment
    • Jamie Lynne Author 12 March, 2014, 19:21

      Wow Hanna! I was getting angry for you when I was reading this. It made me tear up. I completely understand. “The hardest part was being blown off, ignored, being made to feel like I wasn’t concerned with a premature birth, or that I was being too dramatic or that I was a weakling. I felt so alone and I had this sense that they’d all just let me die and there wasn’t really anything I could do about it anymore.” <— I could have written that! Sending you a lot of love right now! I get how hard it is. Let me know if you ever want to talk privately. Time truly healths a lot of the emotional issues, but I don’t think it goes away completely. It’s nice to be able to talk to other people who *get* what you experienced.

      Reply this comment
  38. Ashley 13 March, 2014, 23:45

    Let me start by saying, I am bawling like a baby right now. I can relate to your story more than I’d like too. I didn’t have HELLP, but I did have many experiences with pre-term labor. I have encountered one nurse who lied to me and said my urine was normal when it was positive for blood and I had a raging UTI. she could have killed my baby. She also told me to “stop whining” because my contractions weren’t even palpable. The resident let her check my cervix and just slept (I assume) the nurse said I was dilated to a “1″ when in fact I was a “3″ at my OB that same day. My point being, she was dishonest and made me feel stupid… Like I didn’t know my own body. I believe it was because I was only 17/18 at the time. There are so many other instances, but I still have a hard time talking about them. I just can’t understand why doctors and nurses do this to women. If we just listened to one another, life would be so much nicer. I am so happy you and Aram made it and I thank you for being brave enough to share your story. It was very inspiring.

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  39. The Teachers Wife (@TheTeachersWife) 8 April, 2014, 08:17

    WOW your story could almost exactly mirror mine!! I went to the hospital triage twice in 2 weeks….was gaining 10-20 pounds PER week and was so swollen just touching me made me cry. Yep, kept getting sent home even though my blood pressure was 175/110 – I now look back on it and realize what a hellish experience it was! For me it was my first pregnancy and I just figured everyone felt horrible in the end of pregnancy! What an understatement! I’m glad you and Aram made it out healthy in the long run just as we did. 7 years ago when I had HELLP there was almost no information on it!! I’m so thankful to see a little bit of awareness starting to sprout up online!

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  40. RCB 30 April, 2014, 07:42

    I can’t thank you enough for sharing your experience. It has been two years from when I went through this and my son and I are alive; however I now struggle with severe anxiety. I was lucky to have an amazing team of doctors who saved my life but the experience has left me with fear and sadness. The what ifs are horrible and being separated from my baby due to the monitoring and mag was the worst. My husband took care of our son for two weeks while I remained in the hospital. Thanks again for bringing attention to this important issue and serious disease.

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  41. Tammy 15 May, 2014, 07:21

    My SIL is in ICU right now following the delivery of her son due to HELLP. Her son is a 31 weeker and is doing well in ICU, but she is on dialysis and has had platelet transfusions. She was being closely monitored from about 29 weeks pregnant after she started swelling up and gaining weight, was admitted to hospital at 30.3 weeks with protein in her urine and high blood pressure. They delivered when she started vomiting and had abdominal pain 3 days after being admitted. She has been very closely monitored and correctly treated (for kidney and liver failure, high blood pressure and lowered platelets and haemorraging) and yet she is still extremely ill. HELLP is a very difficult syndrome to deal with for the entire family and I hope and pray that my sister-in-law will make it and finally get to hold the baby she has worked so hard for.

    Reply this comment
  42. eileen 5 June, 2014, 19:55

    went in to hospital with blood pressure of 190/120I had my daughter 36 weeks. I had 12 blood transfusions due to blood loss. doctor ruined my ovariaes and bladder dring surgey causing me to have a hysterectomy and bladder surgery 2 months later///help syndrome is crazy but I thank god me and my daughter are alive

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  43. mandy 10 June, 2014, 05:42

    In September 2012 I gave birth to my son at 28weeks and 5 days he was born asleep. I went to hospital cause I hadn’t felt movement they told me my baby was dead. On a number occasions my blood pressure was high at my appointments but nothing was said. After my son was born I was told I had preeclamsia….too little to late. I am now 24 weeks pregnant with my daughter and praying for different outcome.

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  44. Tara 11 June, 2014, 14:22

    Just wanted to share that I, too, am a pre-e and HELLP survivor. My little one did develop IUGR because of it and was delivered at 33w4d. She is now 7 weeks old actual and 4 days old adjusted and it’s a miracle she and I are both here. Not many people know or understand how serious this disease can be. I was on bedrest for months prior to delivery and then for several weeks after, as my BPs stayed high after delivery and were not responding to medicine. It was a scary, scary time. And that magnesium–just wow. That’s a horrific drug and I wouldn’t wish that on anyone. Glad to hear you and your family survived as well.

    Reply this comment
  45. DianaGee 15 June, 2014, 10:51

    Thank you very much for sharing. I just had first hand experience with Precampsia a month ago. My baby boy was born at 33 weeks due to Precamsia, and he had growth restriction due to a fibroid that was located between the placenta and my uterus. He was born at 3 pounds 9 ounces and was able to breath on his own because my doctor started giving me steroid shots weekly starting in week 24. However this was my second doctor because the first obgyn I went to didn’t take any of my concerns seriously (I had started bleeding at 3 months). I believe that if I had not switched doctors me and my baby’s story would have been different.

    One symptom I did have besides the high bp was epigastric pain that I did not know was related to preeclampsia. After having my baby, the bp started spiking again and I had to take 2 medications which prevented me from lactating my baby. He was in the NICU for 2 weeks and we both are doing great. The bp med are working and the cardiologist is reducing the dosage every week; hopefully I will be able to nurse my baby after they take me off the meds.

    God was watching over you and Aram and also over my baby and me!! Hugs!

    Reply this comment
  46. Sal 2 August, 2014, 08:33

    My HELLP syndrome story is almost identical to yours and like u I developed post traumatic stress disorder. I also had something called posterior reversable encephalopathy syndrome (swelling on the brain) and was unresponsive for 15 mins 4 days after the birth of my daughter with the crash team called in. Luckily I survived and my daughter was born a healthy weight. My recovery has taken about a year and still on blood pressure tablets now :-(
    The scary thing is that my case was also misdiagnosed for many weeks and I was a healthy athlete before my pregnancy. I now would love another child but terrified to have to go through another pregnancy. Does anyone else have these feelings?

    Reply this comment
    • Jamie Lynne Author 2 August, 2014, 09:30

      Hi Sal,
      Yes! You are SO normal. What you experienced was extremely traumatic. Sometimes preeclampsia unmasks chronic hypertension. People live totally normal (and extremely long) lives when the condition is treated. If you were to have a baby again you would be monitored extremely closely. A lot of us have those fears. Have you visited the preeclampsia foundation forums? https://www.preeclampsia.org/forum/ <– These women are such a wealth of knowledge!

      Xoxox keep in touch and let us know how you are doing. You are not alone!

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