Friday, September 19, 2014

HELLP Syndrome-My Story (Part One)

 HELLP Syndrome-My Story||Family, Love, & Fairy Tales Blog
In my first blog post, I mentioned that I had a complicated pregnancy. One of the main reasons for starting this blog is to tell my story.  I think it is so important to raise awareness about HELLP syndrome.  Although ultimately my outcome and prognosis is good, things could have been very different for me had I been aware.

HELLP stands for Hemolysis, ELevated liver enzymes, and Low Platelets.  Most women have heard of pre-eclampsia.  The way HELLP has been described to me is that it is a much-worse version of pre-eclampsia.

From the very beginning of my pregnancy, I could tell it was different.  I thought perhaps my mother-in-law was right and I was having a girl.  I also know that no two pregnancies are alike, so I didn't think much of it at first.  Almost immediately, my migraines had flared up.  I've had migraines since I was a young child, and I have always been able to manage them well.  I guess you could say that I was used to them (about as used to a migraine as you can get!)  These pregnancy migraines were some of the worst headaches I've ever had.  Nothing would take them away.  I talked with my doctor, and she prescribed me fioricet, which is basically a caffeine pill.  She told me to take that with a Coke whenever a migraine was triggered.  This didn't touch the migraines.  Eventually, from about 20 weeks on, I started to get a massage every two weeks.  This definitely helped.

In March I randomly decided to check my blood pressure.  I developed pre-eclampsia the day I delivered my son, and though my doctor assured me that pre-eclampsia does not happen in second pregnancies, something told me to start monitoring my blood pressure.  My blood pressure was high when I started monitoring it.  When I say high, I'm talking in the 140s/90s.  My doctor told me to lay on my left side and check again. It always went back down when laying on my left side.  One weekend in March, I was feeling particularly sick to my stomach and I checked my blood pressure again.  This time it was in the 150s/90s.  Knowing what my doctor would say, I stayed in bed on my left side as much as I could that weekend.  On Monday morning, I brought my monitor to school with me and checked it at lunch.  This time it was 155/93.  I called the office and they told me to come in.  When I arrived at the office, they took my blood pressure (manually) and I was told it was normal.  They did not ask to see my blood pressure readings from over the weekend and told me my 25-minute drive to the office must have lowered my blood pressure.

On Sunday, March 30, I woke up with very bad stomach pains.  I thought I had a stomach virus, because I had everything that accompanied a stomach virus.  On Thursday, I still was not feeling well and my stomach cramps were so bad I was worried something was wrong with the baby.  My doctor's office instructed me to go to Labor & Delivery.  When I arrived, my blood pressure was elevated.  Once again, they had me lay on my left side.  They L&D doctor on call determined I was dehydrated and instructed me to drink Gatorade.  This is when I truly believe the HELLP symptoms had begun.  No blood tests were done that day, and since I showed no protein in my urine, they were not concerned about pre-eclampsia.

All throughout the month of April, my blood pressure continued to stay elevated.  Yet, every time I was in the office, the technician told me it was great.  When I arrived home from school on April 11, I was not feeling well and my blood pressure was 146/100.  I laid on my left side for an hour and took it again and it was still very high.  At this point, my doctor's office had made me feel like I was crazy.   I think even my husband was beginning to question my sanity because the doctor continually told me there was nothing wrong.  I recall saying to him at one point, "Well, if I stroke out and die, make sure you sue the hell out of that doctor."  Even though I knew my blood pressure was dangerously high, I didn't know whether I should be seen or not.  I called my insurance company's nurse line and she told me that I needed to be seen immediately.  Once again, we trekked to Labor & Delivery.  My blood pressure was 162/100 when I arrived.  This time, they did do blood work which showed high uric acid.  My urine was once again showing no protein.  They sent me home to do a 24-hour urine collection, and told me to stay in bed the rest of the weekend.  When I went back on Sunday, they tested the 24-hour collection and it once again showed no protein.  The blood work did continue to show high uric acid.  My doctor's office doctor-on-call in the L&D triage told me to continue bed rest and follow-up with my doctor the next morning.  She said she would make sure to let my doctor know first thing in the morning.

My blood pressure was so high (152/97) the following morning that I did not feel comfortable driving myself to my doctor appointment. My mom accompanied me to my appointment.  Once again, when I arrived to my doctor's office, my blood pressure was taken (manually) and I was told it was normal.  This didn't make sense and once again I felt like I was crazy.  I used two different monitors, so I knew it wasn't my monitor!   My doctor was not aware that I was seen in the hospital the previous weekend.  She said that since I was not spilling protein, I was not at risk for pre-eclampsia.  I requested for her to check my blood pressure again and she told me that her technician usually takes blood pressure readings on the high side, so she was not concerned.  Hindsight is 20/20, but my mom says she wishes she would've marched out to the car right then and taken my blood pressure with her monitor to show the doctor.  I truly believe my doctor thought I was just wanting off of work.  I admit, it was a very rough school year, but I was planning on starting my maternity leave in four days anyways.  She told me that I did not need to be on bed rest, but wrote me a note to start my maternity leave immediately.

Little did I know that this was just the beginning of my problems.  After months of feeling like nobody was taking me seriously, and honestly feeling like I was a crazy person (my entire family and many friends had heard me saying this numerous times), I started to believe that I was.  The biggest lesson that I have learned throughout all of this is to listen to your body.  Trust yourself.  If you believe something is not right, and you're not getting the answers that you want, find a new doctor.

Stay tuned tomorrow for part two, and please share my story with anyone who could benefit from hearing it.

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