The Power of HealtheVoices15

HealtheVoices 2015

HealtheVoices 2015, Photo Courtesy of Janssen

I started Blood Clot Recovery Network nearly three years ago after suffering from a DVT and subsequent PE that nearly ended my life. My doctors told me I was lucky to be alive. My family told me they loved me and most of my friends told me nothing except, “Get well soon.” I told myself that for all intents and purposes, my life might as well be over and it would never ever get any better than it was during those initial weeks and months of recovery. Everything hurt, everything was hard, I couldn’t do anything that I loved (like run) and to top it all off, no one understood what I was going through. No one understood me. As a result of my own frustration, fear, panic and isolation, I vowed to find a way to let others going through the same situation know they were not alone. And, I knew there had to be other people like me.

Little did I know, for all the success I had gained in helping others, I was becoming very isolated. It’s difficult to help others through recovery when I am still moving through it myself and managing a blog, a Facebook Page, Facebook Group, Twitter profile and countless messages (not to mention a full-time job and family) is time-consuming, often draining and sometimes heartbreaking. At times, it is like reliving the horror of what happened to me because I can relate to so many of you. I can’t move on completely, I won’t stop talking about it and it keeps me up at night sometimes. Still, I knew I didn’t want to give up, but I also felt like I had no tools to understand and process what I was feeling.

So, I stepped – uncomfortably at best and only with the encouragement of a waiter who was holding the most beautiful shrimp cocktail I have ever seen in my life – into a room full of other people I had never met, in a city I had never been to (naturally, right?!) and squeaked, “Hi, I’m Sara and I had a blood clot, what’s wrong with you?” Or, something like that. It was awkward, it was strange and it pushed me out of my shell, which is actually pretty prevailing in person. And, I never before had the chance to be Blood Clot Recovery Network in person. It was awkward, it was strange and it was uncomfortable, at best. What was I doing? I suddenly knew nothing about blood clots and was having trouble sharing my story out loud. What was I doing, again?

I was attending HealtheVoices15 Conference, hosted by Janssen and Everyday Health, which is an event that was created to bring together online health advocates – when did I become that in person – to discuss, share, learn and inspire one another to continue doing what we do every single day. And, when you think about it, what we do is pretty big, as Clare Martorana Executive Vice President at Everyday Health demonstrated in her opening speech during dinner. We bridge the gap between doctors visits, put health headlines into perspective, create patient advocates, help doctors give their patients better care, help caregivers as well as patients and connect with patients 24/7 – and we do it all with humor and for love, not money.

It hit me like a ton of bricks when Clare mentioned BCRN as an example of bridging the gap between doctors visits during her address. Maybe what I do really does matter. Actually, it hit me like 72 pairs of eyes around the room staring at me. I went to bed that night feeling grateful, content and excited for what was to come the rest of the weekend.

After breakfast Saturday morning, the event kicked off with an empowering and hysterical lecture (although one could hardly call it that) by ZDogg MD. Okay, if you have never heard of him (I hadn’t) you need to find out who he is now. In short, you will laugh – a lot. In length, Dr. Z (a.k.a ZDogg MD) is a doctor turned rapper who is changing the way we are thinking about medicine and patient care at Turntable Health in Las Vegas, Nevada, of which he is the founder. Turntable Health is knocking down barriers that make no sense by changing the way we treat patients by doing things for them, not to them. They’re scrapping traditional medicine to take care of the patients and make people say wow. You will, trust me. And, again, when ZDogg – diagnosed with a blood clotting disorder himself – recognized BCRN as an essential resource for patients recovering from blood clots or treatment (don’t worry, I tried to smile and waved uncomfortably back to him on stage this time), I suddenly knew I was making a difference. I was making a difference in the lives of people I didn’t even know about. Affirmation is a powerful thing. Community and strength in numbers are an even more powerful things. Putting people with aligned visions to make a difference in the lives of others in the exact same room is the most powerful thing.

I stopped being afraid after ZDogg’s session. I started talking to people. I started telling my story, for real, without barriers. I felt safe and among friends. People who got me, didn’t expect anything out of me and for once in my life, understood just what I meant when I said I needed a minute, needed to sit down, prop my leg up, stand up or take a walk around. In fact, maybe they didn’t even understand exactly why, but it didn’t matter. They were like me. They were hurting, they were broken and they were unimaginably unwavering in their battle to survive, prevail and make a difference in the lives of many. I met and shared an immediate connection with Jill of Get up and Get Moving; Beth of Invasive Duct Tales, Brian of A Marine and HIV as well as Debbe of Atrial Fibrillation Support and Melanie of StopAfib.org, who also represented the cardiovascular community with me.

Mellanie, Me, Debbie and Melissa

Mellanie, Me, Debbe and Mellisa

After I connected, I decided to learn as much as possible. My favorite small-group discussions were with Jenni of Chronic Babe (again, if you don’t know who she is, you need to) who has made a life and a business of surviving and thriving despite chronic illness and pain and is helping others understand how to do the same. She’s funny too and extremely empowering when she speaks. From there, I learned about compassion fatigue (emotional burnout of patient advocates, physicians and caregivers) with Dr. Brian Koffman and Six Until Me Blogger Kerri Sparling. I learned about the cost of caring (fatigue, depression and overworking to name just a few) and I learned that I am enough.

And, at the end of it all, I jumped on a [subway] train from NJ to NYC and made my way to Central Park, somewhere I have always wanted to go. Three years ago, I didn’t want to leave my house. Three years ago, I would have never of navigated the subway system by myself. Two weeks ago, I did. It was terrifying, it was beautiful, it was real and it was absolutely invigorating.

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South Central Park, NYC

There’s so much more to come about #HealththeVoices15. So much more. What I really want to say is I am extremely grateful for the opportunity to attend this conference. Janssen paid for all of my expenses, including travel, and took care of everything I needed while I was there. I was nervous about attending a conference hosted by a pharmaceutical company, mostly because I did not know what to expect or what was expected of me. This conference had absolutely nothing to do with medication or with pharmaceuticals at all. This conference had to do with a progressive and utterly compassionate company that chose to bring health advocates together, in the same room, to discuss health topics and diseases that are effecting lives on a broad scale. This conference was about recognizing and then addressing the need to provide online patients advocates with support, resources and connections needed to continue making a difference in the lives of patients. I always knew I wasn’t alone. What I didn’t know was that I was empowered to continue making a difference. I left HealtheVoices completely energized to keep doing what I do everyday – make a difference in the lives of those suffering from DVT and PE. I left HealtheVoices with a purpose, validation and the realization that I do matter and my work here matters – a lot.

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There is hope for healing and you are not alone,

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A Survivor Speaks: You’re Stronger than You Think You Are by Sidney Penner

The day I suffered from my P.E (November 15,2012) was a day I never thought I’d get through. The night before my P.E, I was walking from my college class to my car when I realized I was getting short of breath. That was not normal for me at the time because I was exercising every day and always out running and walking.  The next day I woke up and had terrible side pain. I thought maybe I had pulled something while exercising. As the day went on, the pain progressed more severely.

By the time my mom got home I was in my bed and couldn’t sit and couldn’t lay flat and then I remember a huge rush of pain. I went to the living room in tears, and that’s when my mom told me to get my coat on because we’re going to the E.R. I had never been to the E.R and had never even been to the doctor that much since I was always a healthy girl. After tons of blood work and a chest x-ray, the doctor came back into the room and said they saw something but wanted a better look. They took me in for a CAT scan and then came running back into my room saying, “this girl has an Acute Pulmonary Embolism in her lungs and we need to admit her now!” I remember the doctor telling my mom that if I hadn’t of came in that night, I wouldn’t have been alive. That was very scary to hear when I was only 20 years old. I was scared, because even daily tasks I wasn’t capable of doing. My mom had to help feed me, had to help me with showering, and had to help me get dressed. The pain was so bad I couldn’t do anything for myself.

If I could tell anyone about what happened I would say: I was a healthy and active 20 year old girl who never smoked, never drank, never had sex, had never been on birth control, never had injuries, never took long trips and never had family history of such an illness. This is something that can happen to skinny or big people; old or young people. I feel like there needs to be a lot more awareness for such an illness; it is the 3rd leading cause of death in America.

The one image I can clearly capture from my experience, it was when they sent me to get admitted and they were hooking up IVs and EKG’s and oxygen to me. I remember all the doctors and nurses working and then I remember my mom sitting by me; and I remember yelling at the nurses that I would rather die, just kill me. Then one nurse, who tried to make light of the situation, said “Oh sweetie we have a whole other level for patients who are thinking that way!” He was super funny and made me feel a little better.

Looking back, I think my main emotion was fear that I was going to die. I remembered always waking up to the intercoms of the hospital saying “code blue” and I was thought “Oh my God, is that me? Am I alive? Am I breathing?” It was a scary moment for both me and my family.

The biggest challenge I have overcome with since my P.E. is the fear of doctors, hospitals and needles. I was terrified of all three before my P.E. Every time I’d get sick I’d wait it out. I wouldn’t dare step near a doctor’s office. But since my P.E, everything has changed. I realized that the doctors and nurses are there to help me and keep me calm during such a difficult time. I overcame that fear and this experience has made me fall in love with the healthcare field. Now, I am trying to get into nursing school and become a nurse. I’m not scared of needles anymore, and I’m definitely not scared of doctors.  I was very lucky to be blessed with such an awesome medical team, my doctor and nurses who have helped me so much during this scary time.  I will forever be blessed this has happened to me, and I wouldn’t want it any other way. Because of this I now have my dream career and I’m stronger than ever.

Reading other survivors stories make me feel like I’m not alone with such a scary illness. It also makes me wonder why so many people have this life threatening illness and still no awareness is made. 

I would say to another survivor, to NEVER give up. It looks like a long road right now, but you will get better and back to normal! I was on blood thinners for five months. I was getting my INR checked all the time, and I was always tired and weak. But now, I’m off the blood thinners, I’m getting active again and I’m feeling more like me as time goes by. It’s not impossible and if I was able to make it through, then we all can! Awareness is key.

Connect with Sidney in the comments below or through theese links:
  • Facebook 
  • Twitter
  • Pinterest (PEsurvivor20) 

Thank you, Sidney, for sharing your story and message of hope with BCRN!

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,