Life, love and the challenges we face as the heart of home.

Wednesday, June 29, 2016

Our Story Part 12: It Is Well

I’ll never forget the feeling I had when I walked through my Ob/Gyn office a week after my hospitalization for the Pulmonary Embolisms. Of course, the ER doctor had been in contact with them about my condition so the staff was well aware of my fragile state and my extremely close call. When I arrived, the receptionist, Deanna*, took my name and looked at me like she was seeing a ghost! When I followed the nurse back to the exam room, I felt like all eyes were on me as I made my way through the halls. I can only imagine they were thinking “this woman escaped death by the skin of her teeth!”

During my appointment, Dr. Fields couldn’t stop shaking her head in disbelief. Pulmonary Embolisms are the leading cause of sudden maternal death in the developed world and yet, here we were! There were virtually no warnings signs that a clot was forming or even any suspicion that I was at a heightened risk for developing one. It wasn’t on our radar at all! All of my previous labs looked good and I was having a blissfully dreamy pregnancy prior to the PE onset. Now that the clots were being treated with the low molecular weight heparin injections, one of my biggest concerns was how we knew that the blood thinner therapy was working considering I wasn’t having any intermittent blood work. Dr. Fields sat down and said very matter of fact “You are alive! That’s how we know it is working!” She didn’t sugar coat anything. I should have died in that stairwell at work. One in three people die from having ONE pulmonary embolism. I had TWO!



I returned to work in a limited capacity just under three weeks later. Looking back I could have been out on short term disability for much longer but I went back for a few reasons. First, at the time, I thought going back helped me keep more of the time I had for my maternity leave using the Family Medical Leave Act (FMLA). If I used it all before I gave birth, I would ultimately lose time with my son which was entirely unacceptable to me. Second, I felt I could go back to do some tasks from my desk as long as my employer didn’t push me back into the madness of the laboratory. I knew without a doubt I would not be able to handle that. I also knew everyone at work was completely swamped after a rash of recent resignations in my group. Even in my limited scope, I figured I could take over a good amount of the paperwork to free up others for the lab work.

So yes, I trudged into work every day for the next seven weeks having just barely escaped death. It was kind of ridiculous. Even my doctors questioned this decision but they ultimately supported me if I felt up to it and made a long list of restrictions. I really wish I had an advocate at that time, be it from Human Resources or the Disability Company itself, to lay out my options. But far too often, employers and organizations are only concerned with costs than employee health, safety and wellbeing. And to a point I can understand why. No doubt they have been burned by people who have milked the system and gotten away with it but I was different.  Somehow I felt like that was lost on so many of the people who worked on my case. I was just another number to them.

Working those last seven weeks before my maternity leave was grueling. On my first day back, I met with my supervisor an hour after settling in to talk about my medical restrictions and what my new set of responsibilities would entail. This is when she looked at me and said “You know this is a lab job, right?” I knew what she was getting at. Management was not pleased I would be out of the lab. To her and everyone else on my team, I looked fine from the outside. I looked like a normal, healthy pregnant woman. Maybe she thought I was trying to get out of work. Maybe she wanted to see how much she could push me with the restrictions but that was when something called gumption kicked in for me. This Momma-Bear was having none of it! I looked her in the eye and said “If you don’t need my help with the paperwork, I’ll be happy to go back out on short term disability. That is not a problem at all.”

Sadly, this wouldn’t be the last time I was pushed around at work. I want to be clear that I don’t think my supervisor did this intentionally. I genuinely believe she is a compassionate person but maybe she was under too much stress herself to show it. I think she desperately needed me as a full-fledged resource because our group was incredibly shorthanded and I wasn’t able to provide that. I found out later that during those two and a half weeks I was out that someone actually said to my supervisor “She gets out of breath climbing the stairs and has to be out for three weeks?” Clearly, this person didn’t understand the gravity of what I was up against despite the fact that I was fairly open with my condition. (one of the consequences to being on display in the hallway for everyone to see!)  All of this reminded me of another comment a coworker once made. He said “This level of stress rarely brings out the best in people.” He was right. When people feel they are in a tightening vice grip, they are rarely at their best, at least from a personnel perspective. Physically, I was having a hard time keeping up with the piles of paperwork and reports but I pressed on. My goal was to get to September 4th, the beginning of my maternity leave, and then I would finally get the short break I needed before our little man arrived.

That is not to say things with my health went swimmingly during those seven weeks. Far from it! One week after returning to work, I got the devastating news that I had Gestational Diabetes. This may not have been a big deal independently but it was a huge kick in the gut to me after my hospitalization. There are a number of risk factors for Gestational Diabetes but I didn’t have any of them. I was told some women have an intense surge of estrogen from the placenta around 25 weeks gestation which affects the efficiency of insulin to clear the sugar in the bloodstream fast enough. Lucky me, I was one of them! I was starting to feel like my body was betraying me and my baby. Not only was I sticking myself with the blood thinner injections twice per day that left rows of bruises on my hips that were starting to look like domino tiles, but now I had to prick my finger five times per day to take my blood sugar readings. I felt like a pin cushion! Thankfully, I was able to control my blood sugar with a strict diet and walking.

A few weeks later, I was admitted to the Labor and Delivery floor twice for observation after my heart rate spiked again in late August. My husband and I spent a number of hours in the triage room on two separate nights. I had more blood work, ultrasounds, another Doppler and IVs going. The conclusion was that my symptoms were due to dehydration but my cardiologist wired me up with a cellular cardiac monitor for a full week to gather data on my heart rate just to be sure. I had probes in three places on my chest with wires running to a monitor I had to wear under my shirt. I also had a little cell phone device with a button that I had to press every time I felt like my heart was racing. All of the data generated was sent remotely to a computer in my cardiologist’s office and if something looked off to them, they would call and tell me to go to the ER right away. Sometimes my heart rate got as high as 170 beats per minute which was concerning because I was on blood thinners. Was there another blood clot we didn’t catch? Were the blood thinners working? There were so many questions, yet based on my test results, my team of doctors felt confident sending me home while insisting I remain vigilant. If the smallest thing seemed off to me, I was instructed to go to the nearest ER immediately! Despite the occasionally high heart rate during my week of cardiac monitoring, the cardiologist didn’t see any concerning patterns. He was also pleased that the strain on my heart from the PEs in June showed signs of healing at my follow up echocardiogram. One thing was clear: this pregnancy was kicking my butt!



During those final weeks, no matter where I was, someone was always watching me: my doctors, my family, my friends and even some of my coworkers.  My husband bought me a heart rate monitor so we could keep tabs on my heart rate and oxygen saturations at home before determining if another ER visit was necessary.  My mom, sister and close friends were in constant communication about how I was feeling on any given day.   I had three or four doctor appointments each week with various specialists like pulmonology, cardiology, hematology, obstetrics and gynecology for tests and follow up.  It would have been easy to feel overwhelmed by anxiety, depression and all of the unwanted attention but even Dr. Fields commented “You came very close to dying and yet you are taking it all in stride.” 

The best way I can describe my mental and emotional state through the remainder of my very high-risk pregnancy: tenacious.  My medical path forward was clearly laid out and I knew what I had to do for us to live.  Come hell or high water, I would do what was needed to protect my baby even if it crushed me!  Sure, the possibility of another blood clot was heavy on my mind but what overshadowed all of the anxiety and fear was that a sweet little boy was on his way after hoping and praying for more than a decade!  The elation I felt from being pregnant and clearly seeing the hand of God at work had me convinced our story wasn't over yet.  I pulled on my proverbial hip boots (or maybe a Kevlar wetsuit; you’re call) and waded through the mud and mire of the medical gauntlet presented before me with a smile, armed with the knowledge that God was at work long before I ever got that beautiful pregnancy result.  God had given me this miracle boy.  He had saved us both from near certain death through a series of incredible interventions.  If God wanted to take me out, he would have done it by now.  There was an overwhelming peace that God was giving us an even greater miracle through all the waiting and suffering.  These thoughts made it so evident that he wasn’t going to abandon us because life suddenly got harder.  All eyes were on me, but most importantly, the eyes of my Lord were on me too.  And because of that, I could say come what may, it is well with my soul.

Psalm 33: 18-22

But the eyes of the Lord are on those who fear him, on those whose hope is in his unfailing love, to deliver them from death and keep them alive in famine. We wait in hope for the Lord; he is our help and our shield. In him our hearts rejoice, for we trust in his holy name. May your unfailing love be with us, Lord, even as we put our hope in you. 

  
 
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*Name was changed to protect privacy.

Stay Tuned for Part 12: The Final Stretch
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