Survivor Spotlight with Ashley Marconi

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In early May of 2014, my husband and I were still growing into our home, shuffling things from room to room after the arrival of our daughter one year earlier. While carrying a heavy antique dresser down the stairs, the back end landed on my right foot at the bottom of the stairwell. It left quite the mark, but I continued to work through the pain and by the end of the day it felt back to normal, or so I thought.
 
Life carried on as normal the following weeks. Being a working mom I had a pretty solid routine down that I stayed focused on. One day in late May 2014, I started experiencing some pretty intense back pain. I was struggling to make it through the work day and asked to be excused early so I could make a trip to the chiropractor. When I arrived, I was limping from the car to the door, but still thought nothing more than maybe a pinched nerve or strained muscle. I got the usual crack and adjustment done which usually brought instant relief. Instead I left feeling worse than when I had arrived. I drove home and immediately called my physician upon arriving. I described my symptoms and was told to get to the ER immediately. A little frazzled by the urgency in his voice, I hobbled into my house, kissed my daughter and mother-in-law goodbye, grabbed my phone charger and drove myself to the hospital.  By the time I arrived, I was in so much pain I had to call the ER and ask them to bring out a wheelchair to get me, I could not walk.
 
The nurses came running out, a look of concern on both their faces they weren’t hiding very well. They ran me through the entrance and bypassed any introductions at the front desk to a fast pass to ER testing. Everything was happening so fast they didn’t even have me get in a hospital gown. I didn’t know what to think, my mind was racing a million miles a minute. My back went from hurting that morning to not being able to walk that afternoon. Was I going to be paralyzed? Did I have permanent nerve damage? What was going on ?
 
I remember laying on the table for the first set of tests – the ultra sound. The technician ran the wand up and down my leg and I saw her face drop.  I looked at her and said “what, what is it?! Please tell me no one has told me anything, please.”. She took a deep breath and said “I’m not supposed to say anything officially until the doctor reviews this but…you have a blood clot. A big one. Its running from your ankle all the way up through your groin.”  I remember it felt like time stopped in that moment. My heart skipped a beat. A blood clot?! At 28 years old?! How?! How is that possible?!  As if she was reading my mind she said “I know you’re young but it does happen. We will figure out why but for now let’s focus on fixing this. Now I’m going to put some pressure on your leg, it is going to hurt so just breath.”  Hurt, didn’t even begin to explain it. The pressure and pain felt like a vice clamping my leg with each press of the wand. I screamed out in pain and tears. She started crying and apologizing. It was all so surreal. I was so frightened.
 
After the ultrasound I was sent straight to an MRI and then to a CT scan. By the time I got back to a room in the ER, my family and husband were there waiting for me. While I was telling them about everything that had happened, I heard the doctor’s outside whispering. “It’s a blood clot, a large one. I don’t know….no I don’t know…. we have to take precautions to prevent this from traveling…..she is so young……yes, I see she has two herniated discs in her back we can’t worry about that right now. If we don’t get this blood clot under control, she won’t have a back to worry about.” They then put on their best faces and walked in together to “officially” inform me of the monster blood clot that had formed in my right leg. They were going to get me started on IV blood thinners and admit me. They were throwing around terms like heparin, dvt and pe, all things I had never heard of before now.  This is my new normal.
 
I spent two days in the hospital before they sent me home for the weekend on lovenox injections. I still couldn’t walk so I relied on my family to assist with my daughter and around the house. My husband gave me my shots as I was in too much pain to do it myself. I spent those days terrified of what was to come. All I could think about was that I had just been blessed with my beautiful daughter and I couldn’t leave her. I had flashbacks of losing my father at a young age and flashes of a future without me in my daughter’s life. It was the most terrifying thing I have ever felt and that gave me the strength to fight.
 
I was admitted back to the hospital after the weekend for a planned procedure. I was going to undergo a procedure called thrombolysis where a catheter is inserted into the back of my leg and it vibrates and dispenses potent blood thinning medication directly into the clot. The risk of catastrophic bleeding was high with the procedure so I was informed a several day stay at the ICU would be to follow.
 
I went into the procedure more scared than I have ever been in my life. They started with some “medicine to relax me” although I was very much awake and feeling everything that was being done. They placed the IVC filter down through my neck into my chest to prevent any clots from traveling up to my lungs. Immediately after I was flipped onto my stomach to have the catheter inserted. I was then brought back to the ICU for observation. I was not allowed to move. I spent that 24 hours in a daze. Being poked every 3 hours around the clock to check my INR. I was terrified. I was scared I wouldn’t make it through to see my husband, my daughter, my mother and my sister. I was depressed about all the memories and moments I would miss. I started thinking up my goodbyes. I tried to write them down but I just couldn’t muster up the energy.
 
My vascular surgeon was about one of the worst doctors I’ve ever encountered. He was uninformative, rude, rough and had terrible bedside manners. He came in after the first 24 hour round and took me back to the OR to check progress. He said my body wasn’t breaking down the clot and he wanted to try an angioplasty. I consented, just desperate to end this nightmare. I was given some pain medication and then he began. I remember him maneuvering the instrument through the vein and feeling like he was ramming bone. I almost fell off the table it was so painful. After several more attempts of this and scream and cries for him to stop, he stopped the procedure unsuccessful. He then stated we would do another 24 hour round of the thrombolysis and revisit the angioplasty if needed.
 
48 hour check – after 48 hours of not being able to move under threat of moving the catheter and more catastrophic bleeding. More bloodwork every three hours…..more nightmares….flashes of leaving my daughter without a mother. We checked the status and the clot still wasnt broken up. Too massive, the whole vein was blocked that carried blood back up to my heart. Second attempt at an angioplasty. More ramming and hitting nerves and bone to the point where I begged for them to stop and said I cannot handle the pain. Pain that made my 12 hour labor feel like a papercut in comparison. Every muscle in my body hurt and I was drenched and shaking in a cold sweat. I couldn’t do it.
 
I was wheeled into recovery prior to going back to ICU. I remember just breaking down sobbing. I felt defeated. The doctor came in shaking his head. I told him I couldn’t go through that again it was too painful. I asked through gasps and tears what would happen. He stated my right leg would always have swelling and wouldn’t go down. Blood flow would be poor. Pain would be worse long term than it would if he had been successful. I felt like I failed me family and myself.
 
I went through one more 24 hour thrombolysis, another day in the ICU. I later found out upon research how truly risky it was for me to go through 72 hours of this treatment. After the final round, I was anxious to get home to my daughter. My mother, sister and husband got me through my time there but I was ready to get out. The doctor yelled at me for not being able to put my right heel down when I walked and made that a requirement for me to meet prior to being discharged. My leg had not been used for over a week and was tightened up from the procedures. I pushed through pain I had only imagined, crying again to get through the task of walking to the end of the hallway with my heel down. My leg felt like it was being ripped apart but I did it so I could get out of that awful place and back home to my family.
 
The years to follow brought with it additional tests, procedures, etc..  to show that there is extensive permanent damage to my leg. The vein is all scar tissue with only calateral veins to assist with menial blood flow.  It was found that I have Factor V Leiden as well as MTHFR677t gene mutations, resulting in the need for life long anticoagulation therapy (I had smoked on birth control at the time of the clot, quit cold turkey the first day at the ER). I tried warfarin for the first year post dvt only to switch to eliquis after struggling to keep my INR in range. My right leg is still 3 inches larger than my left. I have constant pain, swelling, cramping, and spasm. The simple act of walking a flight of stairs causes burning and severe pain in my leg. I was diagnosed last year with post thrombotic syndrome and severe anxiety after the experience. I worry constantly about a recurrence.  Three years later and I am still learning,  recuperating, and trying to find my new normal. I returned to work full time a month after I returned home and I continue to work as an HR professional for a home care agency.
Some days are worse than others, some are better but all my days I am grateful to be here and to be given a second chance to be the best I can at this beautiful life I love. I am a mother, wife, sister, daughter. Equally as important, I am a Survivor.
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