HELLP syndrome didn't occur until I was delivering

[sandymd]

Hi, I have had three children and I didn't have HELLP syndrome until my third child. All three of my pregnancies were complicated by diabetes and nephrotic syndrome. So I was closely monitored due to already problematic blood pressure. My pregnancies were all managed through bed rest. The day my daughter was born I was feeling unwell and I was quite swollen and my protein counts were rising. The doctor was only concerned that I was going to suffer kidney failure and decided it was time to do the "preplanned c-section" There were many complications leading up to the birth. I was so swollen that they couldn't get the epidural in and by the time i was on the operating table it was no longer working but I was in shock and couldn't tell them anything. They put a hole through my spinal sac. So at some point I lost consciousness and vaguely recall waking up here and there over the next week. They had me on mag sulfate etc and i was in a coma.I felt these big "pops" in my head and suddenly my nose would bleed which I was told was some minor brain hemorrage. I had to have a spinal patch done to fix the hole they put in. I have had recurring headaches, I have breathing problems since. My blood pressure has actually dropped low over the years rather than running high. But i have been anemic since. I still get bad nosebleeds, which started that day. No one was willing to tell me at first what happened to me and I did not find out until later when I had to request my medical records from the hospital. Now no one will take me seriously that I am sure my long term symptoms of from HELLP and wonder if anyone else has had this? No one told me it was a risk. no one told me I had it and I had no clue what took place in the operating room. I just knew I was "going to die" that is all that was in my head. How was I not even diagnosed until I was in the operating room? Do you think it was just the way they worded it in my medical records? hmm... I often wonder.
Sandy
Vancouver, BC

[tree]

Hi Sandy,
It sounds like you had a really tough time. HELLP can develop very suddenly, and it may have come on quickly in your case. It sounds like it might be tough to tell with everything else that went on. When was your daughter born? I struggled with breathing problems and anemia for a little over two months after my daughter was born. Can you check back in with your doctor if you are still feeling poorly? I do not think that it is common to have brain hemorrhages with HELLP. HELLP can cause bleeding, but most of us just get petechiae and bruising or some extra bleeding after delivery.
I think that many of us can relate to the "I'm going to die" feeling and the mag blackout. I only lost a couple of days. It is likely that your medical records are a little confusing. You have several underlying complicating conditions, and it sounds like things went bad quickly. Do you think it would help if you could schedule an appointment with your doctor or another doctor to review them? Many of us have spent many hours reviewing our records as part of our recovery process. I needed to know exactly what happened in order to start coming to terms with the whole thing.

Welcome to the forums.

[mnickerson]

Hi Sandy,

I am sorry to hear how traumatic your experience was. My nurses told me that once your platelets hit below 25,000 your brain can bleed. I also had nose bleeding and would develop large blood clots on one side, which I know was from HELLP because I've never had nose bleeds before. I did not have anemia. The bleeding stopped by the time I left the hospital a week later. If yours is still occurring, you should certainly have it checked out. It's better to be a hypochondriac about this stuff than to try to tough it out. And if you don't feel like your doctors are being up front or thorough with you, switch! You deserve to know everything that is going on with your body.

I hope you are feeling better,
Mindy