Into the darkness

Read the first part of my story to get caught up.

Into the darkness cover photo 600 by 600

 

They say we are only given what we can handle in this life. But, lying alone (except for the nurse who was appointed to stand guard over me every second of the night, monitoring me for even the slightest change) in the cardiac intensive care unit after being admitted with a deep vein thrombosis (DVT) in my left calf and a pulmonary embolism (PE) that traveled through my heart and lodged in my left lung, I wasn’t convinced I could handle any of it. I had unexpectedly lost my mother just this time the year before and I was pretty sure I had quickly reached my lifetime limit of “things that can go wrong, will go wrong” as I plunged into the darkness. Turns out, I was wrong about that too – I should have known.

I missed my mom terribly, but was unable to focus on anything except the extreme pain I had felt that day and still now. In the ER, I was given morphine and then a cocktail of other pain pills, which took the edge off, but I couldn’t breathe without it hurting. I was given oxygen immediately and when I asked my guardian if I could get up to pee, he instructed I could not – in any way – move and that he would help me go to the bathroom. My choices were a catheter or a bedpan. I chose the later, he lifted me carefully, sliding the pan under me and turned his back. I waited for him to leave and he finally stepped outside of the curtain, but was back within seconds after the silence returned to the room, signaling my finish. It was dark, very dark, and I couldn’t see his face, but I asked him why he never left and he said it was his sole job to keep me company. I asked him if I would make it and he said I had good doctors to take care of me. Not exactly the answer I was looking for.

I remember being there, with him, for a few days and my family coming to see me. Everyone was speaking in hushed tones and I could barely feed myself. I wasn’t hungry anyway, though. I don’t remember seeing a doctor at all and I would later find out, my whole hospital stay was a blur of memories because of all the pain drugs I remained on.

From there, I was moved to a larger ICU room, sparsely furnished except for me – smack dab in the middle – and nothing else. It didn’t sink in until later, after conversing with a friend who faithfully visited in spite of her own fears, that the room wasn’t meant for comfort, it was meant to save my life in the even that I crashed. I get chills to this day recalling just how close to death I had come.

The hospital provided a battery of tests to diagnose my conditions – chest x-rays and imaging scans to look at my lungs and heart; Doppler imaging scans to check every organ in my body for damage; more Dopplers and scans to check my legs every other day and even an MRI to check my brain.

The DVT in my leg was severe and extended from my groin area down to my ankle. There was nearly no blood flow in my lower leg, as the veins were blocked from the clot just behind my knee. The vice feeling I had. About an eighth of my lung tissue was destroyed in the ordeal and was now dead, causing my lung to collapse. Yes, it did feel like a knife stabbing.

My thoughts – and then mostly incoherent sentences – consisted of “but I’m a runner” and “I am starting a new job on Monday so I have to go.” Neither would be happening anytime soon and one would not last through the summer, much to my devastation. I couldn’t believe this was happening, to me, nonetheless.

The medical staff, once they discovered I had been on oral contraceptives for several years, concluded that was the problem and once I stopped taking it (which I already had) all of my other problems would be solved. It wasn’t until a specialist got called in – to this day no one, not even him, recalls how – and discovered that I actually had antiphospholipid syndrome (APS), an autoimmune condition that causes the blood to clot when it shouldn’t. That specialist is now my Hematologist and I am convinced between him and my primary care physician who instructed me to go to the hospital after losing his own brother to a PE, are the reasons I am still here today. I didn’t understand what was happening and the Hematologist assured me the few times I remember speaking to him that there would be plenty of time to understand once I was no longer in such a volatile state. He told me I was very sick, lucky to be alive and not going anywhere anytime soon. I spent the better part of six days in the ICU and then another four on the cardiac care unit. At 29 years old, I was the youngest one there.

My husband, Dad, sister and three girl friends that visited kept me hanging on when I was sure I was about to lose it all. I remember being scared, lonely, irritated, angry, sad and in constant, unrelenting, at times unbearable pain. I saw bugs that weren’t there, had conversations that only I remember, others that only I don’t, and sent text messages that make no sense even to this day. I was not aloud to get up except for two days before I left the hospital and when I finally did, my legs turned to Jell-O beneath my body weight. It took one of my friends and my husband to help me shuffle to the toilet only four feet away from my bed. It took my friend holding me up while I used it and a nurse helping me wipe because I couldn’t move my arm behind me. I remember being mortified, angry, scared and in terrible pain. If this was how my life was going to be, I started to have serious second thoughts about being thankful that I was still alive.

“What happened to my life?” seemed like the understatement of the year. I couldn’t remember anything, at all. I continually asked the same questions over and over and over again. “What happened?” “Why am I here?” “Why can’t I go home?” “Did somebody call my job?” “Can I run?” “Why do I need that?” “What do I have?” “Did I die?” And, except for a select few of the ones who were convinced it was birth control and nothing else, everyone answered me again and again and again, no matter how many times I asked.

The hematologist told me very little in the hospital and looking back, I am thankful because I wouldn’t, couldn’t and didn’t understand any of it at the time – and there’s been nothing but time to start to figure it out since then.

One thing I was certain of, though, I was given a second chance at life and was determined, committed, adamant that I would not waste what I had been given. On the ride home from the hospital with my husband – toting and oxygen tank and bag of pills – I wailed about how life was meant to be lived and I was given a new lease to do so starting now. It wasn’t until weeks later that I discovered I survived something one in three people do not and that, to me, is proof that I was left to live here for a reason – and maybe part of that reason is telling all of you about what happened to me.

In healing there is hope and you are not alone,