Showing posts with label preeclampsia. Show all posts
Showing posts with label preeclampsia. Show all posts

Wednesday, March 26, 2014

34 weeks


                This past weekend I began casually packing my hospital bag. I was excited to do this because I never got to for my first pregnancy. I pulled out the list that I had eagerly grabbed from the doctor’s office- “What to Bring to the Hospital.” I first put into my bag a bottle of wine (okay, not on the list) that my husband and I chose together on a weekend getaway to Vermont not long after finding out about this pregnancy. I vow to have a fully functioning liver, as well as fully recovered insulin levels. What better way is there to celebrate the birth of a new baby than by sharing a long-anticipated bottle of wine with your husband and whoever else happens to be in the delivery room?

                Next I added a newborn outfit for our little man. He will arrive home sporting a “Little Brother” onesie, along with some teeny tiny pants and socks. Underwear, two nursing bras, chap-stick, slippers, flip-flops, some warm fuzzy socks, deodorant, and a mental note to myself to swing by Lululemon Athletica to finally (years of desire, but an unwillingness to commit to the price) purchase a pair of exercise pants as a going-home present to myself. Toothpaste. A toothbrush.

                Memories came flooding back. Just under nineteen months ago, after my husband and I spent a lazy Friday with dear friends, enjoying the end-of-summer sun and swimming in a beautiful New Hampshire lake, during the long car ride home I developed a strange, intense illness. Severe pain in my upper right abdomen, waves of nausea and desperation, uterine cramping, and eventually vomiting from the pain and general feeling of misery. What I thought was labor pain (I’d never experienced it before—all I knew was that labor was supposed to be awful!), my incompetent but well-meaning small-town doctors and nurses thought was food poisoning. A we’re-going-to-send-you-home-but-while-you’re-here-let’s-do-a BLOOD TEST revealed that I had suddenly developed Class I HELLP Syndrome, a pregnancy complication completely foreign to those same doctors and nurses. They had all at least heard of preeclampsia, but that was not the case for this more serious variant characterized by Hemolysis, Elevated Liver function, and Low Platelets (HELLP). So after six hours in the local hospital and twenty-four hours after my last shower, teeth-brushing, and getting dressed, I was rushed by ambulance to Tufts Medical Center in Boston.

                That Saturday morning I was told that if my condition hadn’t been discovered, I with the baby would have been dead in a matter of hours. My husband, however, was told that even in my current state, while the baby was expected to turn out just fine, my chances were not so great. He was told to prepare for the worst in regards to his wife. And so emergency inducement began. More than twelve hours after my last meal, despite my sickness, I was starving. I begged for a meal, a snack, a drink, a sip of water… anything. “Please…” I cried to each doctor and nurse as the shifts changed, always answered with the same regrettable “no.” Up until that point in my life, if I could have done anything differently, I would have bought and eaten that vending-machine Snickers bar at the rest stop the night before. In case of emergency C-section, I was not permitted to put anything into my stomach. I was put on an IV drip of fluids so that I wouldn’t become dehydrated, but my mouth was where I needed to taste something.

                That evening I was allowed to have my lips moistened by way of a tiny wet sponge on a stick. I licked my lips and cherished the half-drops of water that entered my dry, sticky, sour, putrid-tasting mouth. After about twenty hours of ineffective inducement, I was long past the point of starvation, and even my thirst began to dwindle a little. But my mouth, my throat, and my lips were dry, cracked, in agonizing want of something cold, something fresh. The taste of my own dying breath permeated my being.

And then, sometime around 4 AM—forty-six hours after my last shower and teeth-brushing, twenty-eight hours after first entering the local hospital, and sixteen hours after beginning vaginal induction—I came out with a new question. “Can I brush my teeth?”

“Let me check.” My nurse told me. She left to go ask the doctor. Several minutes later she returned with a hospital-issued toothbrush and tube of toothpaste, as well as one of those kidney-shaped buckets used for catching urine, vomit, or in this case, used toothpaste. I almost cried with joy.

My larger memories of that weekend are mostly blank: It is more the specifics like this that occasionally come back to me. This grand event of brushing my teeth was a group effort. Someone had to help me lean up and over a little, someone had to hold my hair, someone had to hold the spit bucket, and someone had to brush my teeth. My husband brushed my teeth for me—of that I am sure. The other roles are filled in with a fog in my memory.

The wet, cold toothpaste hit my teeth and began scrubbing away two days of grime, saliva, hospital air, and tears, all dried and crusted, caked inside my mouth. I closed my eyes and internally grinned as my mouth hung open. I spit. I rinsed. I cherished every moment. For the first time in what felt like a lifetime, I felt clean. Sure, I was still covered in sand and dried lake water, my armpits were stubbly, I was drenched in sweat from head to toe, my hair was greasy, and I had been urinating into a bucket in my hospital bed for over 24 hours, but despite all this… I was clean. I could open my mouth and speak without shame at my terrible breath. I could rest my head and get a little sleep knowing that something in my little collapsing world right now was right.

The drugs keeping me alive, the exhaustion, and the starvation probably all added together to create my hyper-emotional response. My husband doesn’t remember any of this happening when I ask him about it. For him, this was just a bump along the road amid a weekend of nearly losing his wife, and also witnessing the birth of his first child. In those moments, for me, having my teeth brushed was a life-changing and spiritual turning point. I could make it through this. Eight hours later, Margaret Grace Means entered the world.

Four days later, I took a shower.

And with that thought, I placed a nice, new, clean toothbrush into my hospital bag. This baby is due in five-and-a-half weeks. My eyes widened as another idea occurred to me and I leapt to my bureau. I located and added to the bag my Preeclampsia Survivor t-shirt. I am ready.

Sunday, November 17, 2013

one is a-walkin and... one's on the way!

I have embarked on what will be, and already is, the most challenging and nerve-wracking of my life experiences thus far.

Post-HELLP pregnancy.

All I know is what my doctor can tell me (which is helpful, but really isn't that much information), and what I've read on the internet. And the fact that my writing THIS is actually going to be a significant amount of internet information is proof that even the endless internet is sparse when it comes to post-HELLP information. (If you are clueless as to what HELLP Syndrome is, please check out my previous posts. Information galore, as well as my personal experience!)

We are set to welcome our new bundle of joy on May 4, 2014.

Alastair and I are completely ecstatic, while still nervous.

As of today, I am 16 weeks pregnant. I've had infrequent, but somewhat severe headaches, exhaustion from time-to-time, and blood sugar issues that have yet to be entirely sorted out. (I experienced gestational diabetes with my first pregnancy.) My OB has me on a low-dose aspirin regimen. As it's been explained to me, low-dose aspirin may sometimes possibly lower the severity of preeclampsia symptoms, though not enough research has been done to be sure.

Well, that's all I've got for now! I'll be posting my experiences as a high-risk pregnant woman who is concurrently a wife and mother of a toddler. It's sure to be an adventure, and I look forward to sharing it with you!

Tuesday, August 13, 2013

Boston Promise Walk for Preeclampsia

It was just under a year ago that many of you were praying hard for Maggie and me. Two weeks before she was due to be born, Maggie was taken by induction when I suddenly was discovered to be suffering from severe Preeclampsia and HELLP Syndrome. After a harrowing weekend, just when we thought things were about to get easier, Maggie started having fainting/ lapses in breathing spells, and my symptoms from HELLP started to get worse. We stayed in the hospital for about a week and a half. Alastair drove back and forth from his job in Burlington to Tufts Medical Center in Boston every night. We prayed, we cried, we welcomed visitors, we began to adjust to the idea of never getting a good night's sleep ever again (OH, the joys of parenthood!). Maggie got the hang of breathing regularly, and gradually my platelet and liver levels went back to normal.
I have spent the past year learning everything I possibly could about Preeclampsia and HELLP Syndrome. My doctor visits while pregnant had mentioned Preeclampsia, but never as something that was actually a legitimate cause for concern. I had never even heard of HELLP Syndrome. That first night that I felt so sick and ended up in the hospital, I almost just slept through the night. My husband insisted that we go to the hospital. Once there, my doctor and nurses almost sent me home. The pregnancy complications that almost killed me and Maggie almost got completely overlooked.
No one knows what causes Preeclampsia or HELLP Syndrome. Sure, there are some common risk factors-- being overweight, being over the age of 30, having a history of Preeclampsia in the family. I had none of these.
Preeclampsia and HELLP Syndrome affect such a small percentage of pregnancies that they're usually overlooked in educating pregnant women. Some research happens, but it's hard to research something if you don't even know it's there until you're already dead.
 
The Preeclampsia Foundation is one of the few organizations that is doing actual research and has a vested interest in educating pregnant women about the warning signs of complications like Preeclampsia and HELLP Syndrome. On September 15th, Alastair, Maggie, and I will be participating in the Preeclampsia Foundation's Boston Promise Walk for Preeclampsia. Our team is called "HELLP Awareness." The fundraising goal for our team is $2000. So far we've raised $890. I am so happy to have raised this much for a cause that is so important to our family... but we're not there yet!
Please take a moment to visit my page and consider making a donation-- big, small, doesn't matter! This cause is so unbelievably important to me that every penny counts.
 
Then:
 
Now:

 

Saturday, April 27, 2013

Let's Talk about HELLP

            In general, it’s true that you can’t spend your life wondering, “what if?” But… what if you could?
            My experience with Pre-Eclampsia and HELLP Syndrome was much similar to that of other women: completely uneducated. My experience was different than that of other women in that both my daughter and I survived, more or less without harm.

            HELLP is an extremely rare variance of Preeclampsia that can happen with or without previously occurring Preeclampsia symptoms. It stands for Hemolysis (the breakdown of red blood cells), Elevated Liver function, Low Platelets. Since it more often than not occurs in concurrence with Preeclampsia, doctors don’t generally do a blood test unless there are other non-HELLP preeclamptic symptoms occurring. There are no risk factors, no known causes, no known reason for this complication to occur. Of the women who develop HELLP, more have Preeclampsia than not. More have Gestational Diabetes than not. More are Caucasian than not. More are over the age of 30 than not. And yet within those categories, there is no increased risk of developing HELLP, since it is still so rare. And any link between those categories and the occurrence of HELLP is completely unknown.

            HELLP Syndrome can happen anytime during pregnancy up until 72 hours after delivery. The onset is generally sudden, and symptoms severe. HELLP Syndrome was identified by Dr. Louis Weinstein in 1982. Prior to 1982, HELLP was a silent killer. You know in all those old books and movies, when a character would ask about someone’s mother, and be told “oh, she died in childbirth…?” HELLP. Seizures, bleeding to death, a shut-down liver. Dead. Oftentimes both mother and baby, in a matter of hours. The warning signs often include “feeling kinda weird.” The only cure is delivery.

 

            What if my husband and I had been driving TO vacation instead of back home? I probably would have had a seizure in the middle of a lake in New Hampshire.

            What if I had just gone to sleep when we got home?

            What if I had continued arguing with my husband about going to the hospital?

            What if the nurses and doctor had trusted their instincts that I was suffering from “food poisoning?”

            What if my blood pressure hadn’t been SLIGHTLY elevated due to stress, encouraging my doctor to order a blood test?

            What if I didn’t live near Boston, which is home to many of the smartest doctors on EARTH? What if I had to stay with my hometown OB, who had never heard of HELLP and was still using the outdated term “toxemia?”

            What if I had developed HELLP when I was 22 weeks pregnant, instead of 38? What if my daughter hadn’t been ready?

           

            My husband, daughter, and I are beyond blessed to exist as an entire family. I thank God every day for my daughter’s life and mine. I spent the first several months post-partum adjusting to being a mother and trying to forget all the pain and horror and terror that I went through in the 36 hours before my daughter was born. But now, as life has settled down a bit (or I’ve just gotten used to the madness of having a small child!), I’m realizing that it would be irresponsible and potentially murderous for me to “forget” and remain silent. If I am capable of helping someone and fail to do so, I have failed as a mother and as a human being.

            I had never heard of HELLP syndrome throughout my entire pregnancy. I read all the pregnancy books, and I obsessively scoured all the pregnancy websites, yet saw nothing about this horrible killer. Even information about Preeclampsia was rare—it’s as if doctors don’t put the information out there so as not to scare the hypochondriacs. After all, it IS rare. But what about those of us who actually get the sickness? Don’t we deserve to have some knowledge before potential sudden death?

            I’m not going to forget, and I’m not going to stop talking about it. I’m going to bug my doctors, and remind them to educate themselves as well as their patients. I’m going to talk about HELLP syndrome to every single person I can, for as long as I can.