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I'm Freaking Out!!

Kristin - posted on 02/11/2009 ( 3 moms have responded )

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9

So, my first pregnancy was anything but uneventful. My story is long but until a few hours ago I thought there was just a lot of crazy things that happened to me last time. I’m breathing a sigh of relief because everything I went through 16 months ago now makes sense but I’m also starting to freak out because I’m pregnant again…



After making my way past several infertility issues I was finally able to conceive. My pregnancy started off normal. I started swelling up quite a bit around 6 months. At 7 months my blood pressure started to increase and I was put on bed rest at home. Month 8 rolled around and after a 24 hour urine test I was diagnosed with preeclampsia. Two weeks later I went into the hospital to return another 24 hour urine test and I couldn’t feel the baby moving as much so they put me on monitors to watch him. My blood pressure went sky high and after several rounds of meds, they weren’t able to get it down. I was sent in an ambulance to another hospital that had a NICU and was told I would deliver there.



When I arrived at the new hospital it was a Friday night. I saw a number of doctors over the course of the weekend and each time received a different response on my condition and the plan for when they were going to deliver. On Tuesday they started another 24 hour urine test. Wednesday they came in around noon and told me that my protein levels were dangerously high and they need to deliver my baby as soon as possible. He was breech so a c-section was planned for a few hours later. My son was born at 35 ½ weeks weighing 3 pounds 15 ounces. He was taken to the NICU and I went to recovery to let the spinal wear off. He was born at 6:30pm and I finally got to see him around 11:30pm. By then I was so tired I could barely sit up anymore. I went back to my room to go to bed and things went out of control from there…



I woke up the next day and couldn’t see. Everything was blurry. They tried feeding me toast and I would fall asleep while chewing. I was complaining about pain on my right side, especially when I would take a deep breath. They rushed me off for a CT Scan and said that I had a pulmonary embolism in my left lung. I was sent to ICU. After being in ICU for 24 hours (and not dying from the embolism) they decided to re-do the CT Scan. The next person said that I didn’t have a pulmonary embolism, the first person made a mistake. After continuing to complain about pain on my right side they finally did an ultrasound and said the pain was due to my gallbladder being irritated. After not seeing my baby for 2 days I was finally able to go to the NICU. They discharged me on Saturday and my son remained in the hospital to grow over the next two weeks.



No one ever told me I had HELLP. I’m now 15 ½ weeks pregnant with my second baby. This whole time I’ve thought that my bout with preeclampsia was just a one time thing that usually doesn’t happen on second pregnancies and that I was fine. I’ve been to two appointments over the last few week (1st OB with the nurse, 1st ultrasound with the perinatologist) – each time when reviewing my chart they say I delivered early due to HELLP – I tell them I had preeclampsia and no one has said anything else.



Today was my first real appointment with my OBGYN (he did not do my last c-section because I was sent to a different hospital). At the end of the exam today he make a quick comment about me having HELLPs last time and they would be watching me very closely this time. I stopped him and said – “what are you talking about – this is the 3rd time I’ve heard this and I have no idea what it is.” He briefly explained it and said not to worry, he’d take care of me.



I sat there thinking, something must be wrong with my chart. What he described didn’t match my issues after birth. I didn’t have hemorrhaging or issues with my blood clotting. No one diagnosed me with this in the hospital. No one followed up with me afterward. No one said there’s some things I should know and consider before I get pregnant again. I have an appointment with my perinatologist on Monday (the one that did do my c-section) and thought I’d just take up my questions with her. She made a mistake on my chart.



My guess is afterward all the doctors sat around and finally put the pieces together.



When I got home I started researching on the internet immediately. All of a sudden it hit me and everything made sense. It only took 16 months to figure it out. All of the signs and symptoms I had are associated with HELLP. All of the misdiagnosis’s I received are associated with HELLP.



I’m happy to finally be able to tie all the loose ends together and concerned that I’m pregnant again. Before embarking upon my 2nd pregnancy I would have at least asked some questions. This sounds really scary. Now I have to wait until Monday to learn more.



I’m new to this – just found out 5 hours ago. Any advise or suggestions you have would be great. I don’t see a lot out on the internet about this.



Thank You!



I’m so glad I found this group today!!!



Kristin

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3 Comments

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Amy - posted on 02/18/2009

5

30

My pregnancy was "textbook" perfect until my third trimester....



It began with a couple of mild headaches, and a pain in my chest (what they kept diagnosing as heart burn) that would gradually make its way to my back right between my shoulder blades. Sometimes I could not tell if my chest hurt or my back or both! The only way to take the edge off of the pain was to soak in a hot tub or use a heating pad. Then the pain would move to my stomach right below my rib cage on my right side (epigastric pain). The worst pain ever...enough to cause vomiting and labor-like symptoms. These episodes (weird..even in the exact order of symptoms every time) would occur about once every 4-5 days and last about 24 hours. Oh yeah...and the swelling that started first really now that I think about it!



Mine began at about 30 weeks and was misdiagnosed as "heartburn"...I was so frustrated they would not trust my instincts that something was wrong. Finally, while my husband was on a temporary duty assignment with the Air Force, I had the worst episode of them all at 36 weeks and I had just left the doc's office...my vision was getting blurry and my right side of my face was kind of twitching...that was enough! I called the Doc's office and had them page the "high risk" doctor on call to meet me in the ER. There was no "asking" involved at this point. I did not ask...I demanded! Called my husband's commander to get him home fast...thank goodness for a fighter jet's speed! Sorry if he "boomed" anyone that day!



When I was admitted I was on the verge of a stroke and seizures. Thankfully I had a great Doctor (Dr. Betcher, Columbus, MS) who ran one simple test, immediately began a plethora of meds/ivs, induced me (yep...no epidural and labor for 13 hours), and then finally I had to have an emergency c-section because I was "fading" pretty fast and not getting better. I almost had to have a blood transfusion too. He saved my life and Baby Kellen's too that day, and I had never even met him...I cannot thank him enough for saving my life and Kellen's that day.



Kellen was born 4 weeks early weighing 4.5 lbs and so tiny! The HELLPS had cause intrauterine growth restriction because my liver was so large and something else with my placenta (maybe detachment?)... and Kellen was not getting enough food. But now at almost 10 months, he is 29 inches and 21lbs!



I was diagnosed with Stage 1 HELLPS and have been advised to wait about a year to conceive, I will only be seeing a "high risk doctor" and be monitored closely, blood test about every week to test platelets,etc...I am also going to purchase some of those strips that test protein in your urine to have at home...just for piece of mind. The good thing is that once you have it, know your body and the symptoms well and are educated about it, and be very diligent about your care...you are good to go!

Kristi - posted on 02/12/2009

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Hi Kristin. I can imagine the fear you have right now. I just delivered my 35 weeker in November due to help (but he was 7 pounds already!). I too had HELLP. I have had no symptoms after the fact, just back to my normal self. My OB/Gyn has told me that I can get pregnant again, but should wait 15 months at least after the birth of my son, sounds like that's your timing too. One thing my OB/Gyn said was that the worse your HELLP was, the more chance you had of it happening again. There are 3 classes of HELLP, 3, 2, and 1, with 1 being the worse. You didn't know you had HELLP until now, so you likely don't know the class you had. If you knew your platelet count, that would help.



Even though the doc said there is an increased chance of it happening again, depending on the severity of your HELLP, the chance is still relatively low.



Keep in contact with your doctor, but as you know, stress is definitely not going to help you right now. Don't do too much research either, that just brings on more fear ( at least it did for me). Come on here and chat whenever you want to.



Just out of curiousity, why did the doc now decide you had HELLP, what symptoms did they decide distinguished your experience from pre eclampsia?  The two are sort of related, but not necessarily :)

Kathryn - posted on 02/12/2009

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I had a similar thing happen with my first. I remember my OBGYN telling me that I had a very serious form of preeclampsia, but I was really loopy because off the magnesium sulfate I couldn't remember what he called it. He didn't explain what it was or why they were taking blood samples 3 times a day. I remember complaining that my chest hurt, right under my ribs, but they told me I had just pulled a muscle during labor. Then a few years later, I had my daughter. I had terrible pain on my right side just below my ribs. I remembered that it was similar to the first time, but I could find any information on the Mom web sites and when I called the dr on call and later had an appt with my own dr, they had no idea it was related to HELLP syndrome. I think part of the problem was I had a differen dr than I had with my first pregancy. Long story short, they were very close to taking out my gallbladder when they got a blood test back and realized I had HELLP. I was sent immediately to another hospital and had labor induced at 33 weeks. When I explained the pain that had brought me to the hospital to the nurse as I was being admitted, she said, "oh, you have HELLP." That was the first time I remember hearing that term. It wasn't until later that I put all the pieces together and realized that I had HELLP with both pregancies. I think being at the hospital with the level 3 NICU and high risk ward was helpful. They see HELLP all the time and I'm not sure my PCP had ever seen it before.



 



I would recommend visiting preeclampsia.org and http://www.hellpsyndrome.org if you haven't already. They have more information about the syndrome and symptoms you should be aware of. I'm avaliable as a friend and sounding board if you need it. I've been through it twice and have reseached it quite a bit since my experiences. Knowledge is definitely power when it comes to this.

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