Survivor Spotlight with Mercy Soto

received_10155160175104022             I have had issues with my knees since I was very young and finally I had to have a total left knee replacement on November 3, 2014. Thankfully, I recovered from the knee replacement very well.

On July 10, 2016 I was home, getting ready for bed, in my pajamas, taking off my contact lenses, hanging out with my fur-kids then………….. COMPLETE BLACK OUT!!

It was very hard to be home, not understand what has just happened, open your eyes, and not be able to move. When I looked around, I was on the floor and the same leg of my knee replacement was facing behind my body. I tried to get up and couldn’t do it. 

My older son had recently moved back home with me and I was able to call out for him. He came and tried to get me up. The pain was unbearable. I asked him to call 911 and I blanked out again. 

When I opened my eyes once more, I had a team of rescue workers immobilizing my leg. I was in a daze and only remember dozing in and out of consciousness. I remember saying that I wanted to go to Baptist Hospital in my daze. 

The next time I was conscience, I was in a hospital bed with a doctor at my side. I had a severe femur fracture from my hip to my knee. 

I thank God for my sons, my mother, my family, my friends, my neighbors, Rescue paramedics, ambulance personnel, BAPTIST HOSPITAL, 😘 the Trauma Orthopedic doctors and staff, etc.  There are so many things that had to fall so perfectly in place that I know only GOD is capable of.

I had major reconstructive surgery to the Femur (plates and bolts) of the same leg I had my knee replacement done to. The knee replacement was salvaged. I had 2 Blood Transfusions and was placed on a possible 3rd Blood Transfusion “watch”. 

It wasn’t until a day after my surgery that I realized that I did not fall…. that I had fainted. 

I told my doctors at that point and they began an investigation on why I had fainted. All this time, everyone thought I had fallen.

Well, after all of the tests came back “positive”, they discovered that I had a bi-lateral acute Pulmonary Embolism. My PE was unprovoked so that made it even ‘scarier”.

The left side of my heart was enlarged. I was in intensive care on oxygen, and it was very tough. 

I had been diagnosed with Asthma a week before and I continued to have cough and not feel well. Never thinking what was really happening.

Needless to say that my life changed right then and there….. it hasn’t been easy and I will be on blood thinners for the rest of my life.

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Survivor Spotlight with Leslie Ponciano

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Like most young ladies, I was just spending my life working and trying to figure out my life. I was battling pain in my hips, lower back and knees.

Now. Just to give a little background , I was born with a congenital dislocation of my hip. So pain isn’t a new thing for me. When it started to get worse on my left hip and thigh I didn’t think anything of it. I was seeing an orthopedic doctor for this issue and he had this idea that I sshould see an arthritis doctor. Maybe seeing this doctor would pinpoint all of my issues and get a handle on it. During this time , I was having issues with my coworker due to being in pain. I know most of you will understand me when I say unless you have pain on a daily basis you don’t know what it’s like. The woman I worked with had no idea and so this pushed me to quit my job. I couldn’t take care of myself and deal with all of my pain and stress. I depended on my insurance from my job but thank goodness I have a great support system.

Now, let’s talk about the arthritis doctor. I noticed my legs were starting to swell a lot when I walked which never really happened before. I didn’t worry about it because I had an appointment with my arthritis doctor coming up soon.
I went to see him on November 18th, 2014. He ran all kinds of blood tests. He took my history which was long.(Reading the clinical notes from his visit… I can see why he didn’t catch what was happening in my body. He thought I was only in it for pain meds.) I got a call from his office the next day, they told me I had inflammatory arthritis and to set another appointment. The next day , I woke up in terrible pain. Mainly in my left thigh and hip. Since it was my “troubled” hip, I didn’t think too much of it. I took some Advil and laid back down with a heating pad.
Later on I got my “lazy” behind up and decided to take a shower. While in the shower I started to feel dizzy. I thought maybe the water was too hot so I cooled it down hurried up and got out. I went to lay down again. When I started to feel better I got myself a little something to eat. As soon as I did, I got really nauseous and barely made it to the bathroom. When I was done, I noticed it was getting harder to breathe. I looked down at my leg and my thigh was swollen and purple. Like really swollen. I needed help and fast. I called my best friend and had her drive me to the ER. They asked me if I was on birth control. I said I was and then they asked to see my leg. They pulled a vile of blood and had me show them my leg. As soon as they saw my leg they rushed me back. Before I knew it I was having a CT scan of my chest with dye then a Doppler of my thigh. That was the most painful thing I have ever experienced and I’ve had a hip replacement! Within minutes my mom arrived and then the doctor told us the news. As soon I got nauseous a part of the clot had broken off and headed straight for my right lung(That’s why I had trouble breathing). I had a pulmonary embolus which started from a blood clot in my left groin. All the pain I had been experiencing for months and swelling was caused by this blood clot. They told me it was caused by my birth control. I then asked them if this could have been caught with bloodwork. I had had all kinds of blood work done 2 days before. They said “yes”. I was floored. This could have been caught before a PE. Unbelievable! I was started on Warfarin in the ER and then moved upstairs. I was admitted to the hospital. Plans I had with my stepdad to see Mockingjay Part 1 were cancelled. While in the hospital they tried to pump some potassium into my body through IV. It felt like my body was pumping acid through my bloodstream. I wasn’t reacting to the medicine like I should have been. So this was a challenge. They tried other meds on me. Finally, they tried me on Xarelto and just gave me other things through IV. I had all kinds of genetic tests to make sure I didn’t have anything that could cause this again. Thank goodness I don’t. I was one of the few this happens to. I took Xarelto for a year then transitioned to Eliquis for 6 more months. Then my hematologist thought I would be ok. So I’ve been on a baby aspirin a day since. I haven’t taken birth control since or Advil/ibuprofen. I still have some shortness of breath but I’ve been told sometimes it just sticks. I have no long term damages and have been released from all of my blood clot team of doctors. It will be 3 years on November 20, 2017. I’m so happy I’m still here and lucky to be able to spread awareness.

Survivor Spotlight with Vicki Scoggins

My name is Vicki, I’m married & I have 3 children (21, 15, & 4). In 1994, my senior year of high school, I got my 1st blood clot & I was told it was due to my birth control. Doctors would no longer allow me to take birth control, but I then got subsequent DVT’s in the same spot on my left ankle in 2007, 2009, & then Feb 2012.

In Feb 2012, I found out I was pregnant with my 3rd child & I started giving myself Lovenox shots (throughout the years I have taken Heparin, Coumadin, Lovenox, & Xarelto). However, I was experiencing shortness of breath & spitting up blood. I had countless ER visits & doctors appointments until finally I learned in June 2012 that my clot from my ankle traveled to my groin & was breaking off going to my lungs.

I was rushed to Baylor in Dallas where a vascular surgeon inserted an IVC filter to prevent further clots from going to my lungs. During my hospitalization, I had a hematologist tell me I had prothrombin gene mutation, a hereditary blood clotting condition. (The women in my dad’s family also have had clotting issues)

I was placed on bed rest & spent the next 4 months in & out of the hospital due to complications with being pregnant, requiring an oxygen tank, severe nausea, & migraines. I delivered my baby boy September 28, 2012. He was rushed to the NICU for pneumothorax, but we finally went home a week later.

I had another blood clot in August 2015 in the same spot as always, while on Xarelto. After that clot I started having trouble walking on my left leg. It is so painful & I experience numbness, tingling, & swelling. I was diagnosed with Venous Insufficiency & Post-Thrombotic Syndrome in March 2016 due to the trauma these clots have caused my body. I also have trouble breathing at times, heaviness in my chest, palpitations, anxiety, & depression.

As if that wasn’t enough, I found out a few months ago that the IVC filter that’s suppose to protect me from clots going to my lungs has tilted & eroded through my vena cava wall. My Bard Meridian filter was recalled in 2014, but I was never notified. I was hospitalized last week with my 6th blood clot. It was found on top of my IVC filter so I had an emergency surgery at UTSW in Dallas to remove the clot & the filter. Despite anticoagulants & an IVC filter I continue to clot.

Nobody prepared me in 1994 for the crazy blood clot roller coaster that became my life. I’ve learned so much about my condition by educating myself through research & participating in support groups. It’s scary when most doctors don’t have answers for what you’re going through & medical technology is advancing faster than doctors are being educated.

I hope to help others by sharing my story. The best advice I can give is to seek out the best specialists available & advocate for yourself. Also make sure you have a good support system & someone to attend appointments with you if possible. There are many times doctors & family members have made me feel crazy because they can’t quite understand why I haven’t gotten better & why treatments have failed. Not all clotters are the same!! Only you know your body & being a Blood Clot Lifer can get lonely. Best Wishes to All Clotters!!

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Survivor Spotlight with Joni Rae Clayton Kalcow

I had foot surgery in the fall of 2013. I broke my foot again which meant a second surgery and complete immobility. With the OK of my doctor we took a 3 1/2 hour car trip to see my brother for Christmas. The day after we arrived I began having shortness of breath, lightheadedness and fatigue. Never suspecting how serious things were we continued with our visit for five days while my condition grew steadily worse. Then we began our return trek across the desert back home. After traveling 5 hours, I was feeling quite ill. Upon arriving home I collapsed into bed. The next morning I could only walk five feet. The afternoon of December 30th, once in the ER I was diagnosed with blood clots in my lungs and was admitted. The next afternoon I awoke from a nap feeling like I was suffocating. I called for help and 15 people were immediately there. They weren’t able to find a blood pressure for an hour. An EKG was done and blood clots were found in my heart. I was very close to death. A procedure called TPA was done. Lots of risks, but nothing to lose at that point. The procedure blasted the clots out of my heart within hours. After 11 days in the hospital I was able to go home … the most wonderful thing ever. It was a slow process, but I grew stronger each day. I am forever changed and I see things through new eyes. I am so grateful to God that I am alive, knowing things could have been so much different.

Six month update in June, 2014 … I’m turning 61 today. This past January I was fighting for my life with a 10% chance of survival. Many of my family and friends lifted me up in prayer and God heard and answered their prayers and healed my body. Today I am strong, healthy, grateful and loving life. I am feeling overwhelmed as I count my blessings ~ 1) my dear husband who meant it when he said “for better or worse, in sickness and in health” 42 years ago. He took care of me so well during my recuperation. What an amazing man he is. 2) my sweet children, Kris, Dani and Glo, who love me unconditionally and support me no matter what. I am blessed to be here to share in their lives. 3) and my precious grandbabies ~ God heard my request to remain here to love them, teach them and leave a legacy for them. Klayton has such a sweet, kind heart and I am so in love with him. Hazel is brand new, but has already captured my heart. I’m so grateful that God sent them to our family. 4) to all of my dear family and friends who cared for me and love me everyday ~ I thank God for you. You are each a treasure to me. I have been given so much and I have no doubt who the Giver is. I praise His name for His generosity and gift of grace and renewed health.

Three and a half year update in June, 2017 …It’s a wonderful life! I am now living in Arizona close to my son Kris, daughter Danielle, daughter-in-love Glo, grandson Klayton, granddaughter Hazel and yet another sweet grandson, Emerson, born in 2015! This extra time God has given to me is such a gift. I am enjoying every day. The joy that He blesses me with is unbelievable. NEVER GIVE UP!!!! Fight hard! Trust God! He knows best. He created you … He can certainly heal you. He can change your heart. He can change your mind. He can change your thoughts. He can change your life!There is life after blood clots! He has so much more for you to enjoy and do!

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Survivor Spotlight: Alissa Anne

I was 16 years old when my world was turned upside down.

I started experiencing excruciating headaches to the point where I had my mom take me to the ER (I am someone who toughs through any pain, so I knew something was wrong when I had to go the hospital).

After 18 hours of tests I got sent home with a clean bill of health.

Later that week I began experiencing terrible chest pains, which were so bad that I had to sit down in the hallways at school after walking only a few steps. I went to my pediatrician and was diagnosed with pneumonia and was sent home on some medication. A few days later, I woke up in the middle of the night in extraordinary pain and coughing up blood and ended back up in the ER. After a CT scan I was diagnosed with severe bilateral pulmonary embolisms; so bad that they warned my parents that I may not make it. After more imaging, multiple DVTs were found in my brain, internal jugular vein, arm, and leg. Genetic testing revealed that I was positive for Factor V Leiden, Prothrombin Gene Mutation, MTHFR, and lupus anticoagulant. I also have May Thurners Syndrome. I spent a week in a hospital and then was transferred to a Children’s Hospital for another 3 weeks. After leaving the hospital nothing was the same. I have been an athlete my entire life, and I could barely walk without getting short of breath. I had to watch what I ate because I was on Coumadin. I couldn’t go do “normal” things teenagers did because of the risk of bleeding. I no longer lived a carefree life that I saw everyone else around me living; however, slowly but surely I started to gain some normalcy to my life. While things improved, I continued to have severe chest pain from the clots in my lung and all the damage they had caused. Consultation after consultation, it became decided that having 2/3 of my left lung removed was the best course of action. The summer before my senior year in high school I underwent an excruciatingly painful surgery. Besides my lung collapsing a few times in the hospital, the surgery went well and I recovered quite quickly; 5 weeks after my surgery I was playing volleyball again. While everything that I went through at a young age did take a toll of my life in negative ways, I believe that it gave me back more than what it took from me. It allowed my family to be tested for genetic conditions so now they are aware or risks and symptoms of what comes along with blood clotting disorders. I have a much greater appreciation for life and all that it encompasses. Now I will be starting medical school in a month with the plan to pursue pediatric hematology, so I can hopefully make an impact on a child the way my hematologist saved my life. I am grateful to be healthy today and able to chase my dreams passionately, with not much holding me back anymore. I know that I am still at great risk for future episodes, but I live each day to the fullest and try to not let my condition hold me down.

Survivor Spotlight: Sarah Louise Carter

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My story

I was diagnosed with a PE at 28 weeks pregnant. However, I had been fighting for months prior to being pregnant about symptoms I had.  It just seemed that pregnancy made my symptoms worse.

One night, I was admitted into A&E with a heart rate of 230bpm and severe chest pain. I was sent home with the doctor telling me it was simply anxiety. Luckily my mum took me back the next day and demanded I got taken seriously. I was extremly poorly when I was pregnant and I’m so glad she took me back because I wouldn’t have gone myself.
They finally gave me a VQ scan and they found 2 clots in my left lung. They said one was the size of a mans fist. It was so terrifying but at the same time I didn’t fully understand because it wasn’t explained to me properly! I got put on clexane injections until I was 8 weeks post partum then put on Warfrin tablets.

I’ve been medication, and clot free for almost a year now in June 2017.

I’m also very thankful I found this Survivor page. It made me feel as though I wasn’t the only person! I wasn’t alone♡

Survivor Spotlight: Jamie Kreger

My story begins with a knee injury.  On October 2015, I went to Urgent Care. I was told I probably had a torn ACL and meniscus or something very similar. The doctor said I needed an immobilizer brace to walk until I could get into an orthopedic surgeon. I got the knee brace and could hobble around quite well with it. After three weeks in the knee brace, I was finally able to see a surgeon. The surgeon took me out of work so the swelling would go down and scheduled surgery for the following Tuesday. Neither, the urgent care or the surgeon thought to tell me to stop my birth control prescription. So, on November 6, 2015, I got out of bed to get ready for a follow up with the surgeon. (More or less it was a pre-op appointment for surgery on Tuesday.) I collapsed in the bathroom. Woke up 20 minutes later to my dog licking my face. Struggled to get out of the floor but every time I would try to stand, I’d collapse again. Finally, I crawled back to the bed. I then called my husband, who was at work, told him I had fallen and I needed him to come take me to the doctor. By this time, an hour and half already passed by. I had no idea how sick I was. He rushed home (45 minute drive…). Together, we wasted another 2 hours with him trying to get me to stand up without collapsing. We both thought it was my blood sugar or blood pressure. (My dad is diabetic. I have high blood pressure.) Finally, he becomes tired of me telling him not to call 911, that if he would only give me five more minutes, I can stand and walk to the car. Paramedics arrive, do the typical stuff.  They ask him some questions like, if we fight a lot… They ask me questions like, if he hit me….. The usual what are we dealing with here stuff…. Then, all of a sudden, a paramedic in training asked what prescriptions I was taking. My husband gathered them and began naming them to her. The first one he read off was birth control pills. All of a sudden, I was in the ambulance. They were talking of blood clots. No typical signs of DVT in my leg though. The medics were in communication with the ER physician. I then arrived. He wasted no time and within 30 minutes, I had CT scan, diagnosed with massive bi-lateral saddle pulmonary emboli. We had waited long enough (20 minutes) to have an echocardiogram, then on to surgery I went. I had caths ran to both lungs. I spent the night in ICU. I then had heart failure.  I had a massive DVT from just above knee to arch of foot. Had 10 bags of IV’s hanging in ICU. I had one night in ICU, plus three more nights in hospital and then I went home Thursday, November 10th.

I am now on Xarelto until November 30, 2016. (Lovenox before knee surgery.)  They waited for blood clots in leg to dissolve, had successful ACL reconstruction on April 19, 2016. Had IVC placed November 7, 2015, then removed May 17, 2016. During the time between blood clots and knee surgery, I had to wear a brace to walk (ACL stabilizer).

 The good part of this, the knee surgeon group has completely changed how they deal with the risk of blood clots. To this day, I elevate and ice. I ice to keep inflammation down at knee which helps with circulation. I’m very active again. I was training for a half marathon at the time of my injury. I had been told recovery would take 2-3yrs. They told me don’t count on walking a half marathon or hiking for at least 2 years. I walked my first post- blood clot/ACL surgery half marathon on November 12, 2016. (Took me only six minutes longer than my best ½ marathon time…..) One year and six days after my clots, less than seven months post ACL reconstruction.

 I’m very lucky. All my surgeons worked together to help me achieve my goal of walking that half marathon a year post blood clot. My knee surgeon created a training schedule for me – for my “fresh” ACL. I walk daily. I find it helps with my left leg. I do have permanent valve damage in my left leg. I wear compression stockings and elevate.

Live each day. Don’t wait for retirement or when you have time to do things that make you happy. Take each day as the precious gift it is. So, there is hope. Just take it a day at a time. Listen to your body. I have good days and bad days. Some days I walk slower than others. Also, I’m back to hiking now.

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Survivor Spotlight: April Ikard

 

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I’m going to start with a little on myself. I’m April and I’ve been married to my wonderful husband for 12 years (13 years in July). He was in the Army until he medically retired just short of 12 years. We have 2 little girls who are ages 4 and 7. I just started homeschooling them last year. I was born and raised in Texas, but lived in nearly every state in the South. Somehow we ended up in Alaska. I never knew I liked going camping, hiking, whale watching or sledding until we moved here 3 years ago. We live in a lovely little town that is surrounded by mountains.

I have to go back nearly 6 years to explain how my life changed. May 28th, 2011 I knew something was wrong with me. My husband, my daughter and I planned a trip home to Texas. I searched for the cheapest airline tickets. The cheapest flight I could find would fly out of Jacksonville, FL, have a layover in Charlotte, NC and then continue to Houston, Texas. It was an hour and a half drive to the Jacksonville airport from where we lived at the time, which was Savannah, Georgia. Total travel time from Savannah to our destination north of Houston was about 6 hours. I purchased one way tickets because we would be driving the truck I bought for my husband back to Georgia.

While in Texas I had a great lack of energy. I would drink a Frappuccino and fall asleep. I was even taking diet pills with caffeine. We had time to visit with all of our family and friends. The last few days of our visit we headed up to the Dallas area to relax by the lake with my in-laws. I couldn’t relax. The whole time I was there I couldn’t breathe. I blamed it on allergies since I was in an unfamiliar area. One night I woke up to go to the bathroom and I felt light headed, nauseous, and went into a cold sweat and I just laid down on the bathroom floor. I’ve had similar issues when I was losing weight and I blamed it on blood sugar fluctuations. The next day I was walking up the stairs and I felt like I was going to pass out. I made it to the bed and I just stayed in the bed. At that point my heart was racing and I couldn’t breathe. I blamed it on some weird allergy/asthma attack. I have not been diagnosed with asthma, but I always scored very low on breathing tests and I have a rescue inhaler. I was taking advice and trying to treat it like it was asthma. I took a hot shower and I started coughing and I couldn’t stop. I wanted to go to the emergency room, but we were in the middle of nowhere and it was quite a drive to a hospital. We were leaving for home the next day so I waited. The only time I had ever gone to the ER before was when my chest hurt while pregnant with my daughter. That ended up being heartburn. If I’m not pregnant I never go to the ER. I stayed in the bed until we left for home. We made the terrible decision to drive the whole 1000 miles without staying in a hotel. We drove all night. I don’t even know how many hours in the car that was, maybe 16 hours, or more.

Once we got home I ignored any symptoms I had. I tried walking, swimming, biking. I would always get out of breath. Before moving to Savannah in mid March I was incredibly active. I had just lost 20 pounds and I went on frequent bike rides. My bike rides would be up to 14 miles. I thought I was terribly out of shape because I couldn’t even go a mile without huffing and puffing and stopping to take a breath.

I finally decided to make an appointment with my doctor. He did an EKG because my heart rate was 120 bpm. The oxygen rate in my blood was 98%. He said nothing was wrong with me and it was just the caffeine in the diet pills I was taking, even though I had already been taking them for 6 weeks. He declared it was “caffeine overdose” and I had to wait until it was out of my system. So I spent the next day in the bed. My heart was racing up to 140 bpm and was not slowing down. I couldn’t walk the few feet to my bathroom without my heart rate going even higher and completely running out of breath. I couldn’t even stand up long enough to get dressed so I could go to the store. I called the doctor’s office and the doctor on call said I should go to urgent care or the emergency room. I decided to go to urgent care. I didn’t rush. I sat down and ate my dinner and then my husband drove me down there. The urgent care doctor came out quickly and said my symptoms were so severe and they didn’t have the equipment to treat me. He said I needed to go to the ER. They checked my blood pressure sitting and standing. While standing my heart rate was up to 150 bpm.

I heard the sirens pull up. They had called an ambulance to take me to the hospital. They got me on a stretcher and I will never forget seeing my little girl’s face when she was crying about Mommy being wheeled away. She was only a little over a year and a half at that time. I was taken to the ambulance not knowing what was going on. I’ve had rapid heart rate problems before, but that was only one incident after I had my appendix removed during emergency surgery 10 years prior. I thought maybe they would give me medicine to slow my heart rate. I had been on Propanolol before.

I was in bad shape once I reached the hospital. My heart rate was higher than ever. I could hardly walk to the bathroom. I was in the ER alone. I had left my cell phone behind. I borrowed a nurse’s cell phone and told my husband to take our daughter to the pastor’s house. He had kids our daughter’s age. My husband was able to stay with me for a little while. I had blood work done and the results from that gave them an idea of what the problem was. I was sent to have a chest X-ray, and a CT scan. Once the CT scan came back they knew for sure what was wrong. I had multiple blood clots in both lungs. They were so massive they started going into the right side of my heart. The doctors were baffled and everyone kept saying “you’re so young”. Pulmonary Embolisms were not something they expected a 27 year old woman to have. 1 in 3 people will die from a Pulmonary Embolism. When one doctor said I could have died I just burst into tears. It truly hit me. I didn’t know how to deal with that. After several hours in the ER I was taken to a room sometime in the middle of the night. I was in a step up from ICU while they determined if I needed a “clot buster”. That is where they go in and break up the clots. The main Pulmonologist wanted to avoid that because he said I could have a stroke as a side effect.

They had me on a constant Heparin drip through my I.V. I was not allowed to get out of bed for days. I had migraines and I developed a painful cough while I was there. I was given morphine for pain and a breathing treatment to calm my cough. I was in the hospital from a Saturday until a Tuesday. They did an ultrasound on my legs the day I was released to make sure there were not any DVT’s. I had no sign of clotting in my legs. They are unsure where the clots originated. They think it was a combination of MTHFR, plus hormonal birth control, plus the long trip.

Once released from the hospital it was a long, slow, frustrating recovery. I had to take it day by day. I had to use the motorized cart at Walmart for a while since I would still get out of breath just walking. Even standing up to put a half gallon of milk in my cart would knock the wind out of me. My Mom had flown in immediately and stayed for a little while, and then my husband’s grandparents drove from Texas and stayed. I needed all the help I could get. I couldn’t do the dishes, or laundry, or anything I normally did on a regular basis. It took at least a month to start returning to my daily routines. Even then I was only slowly recovering. 3 months later I was beginning to walk again, but I couldn’t walk very far without losing my breath. I would eventually be able to walk 2 miles.

When I write my story I don’t think of myself. I’m thinking of the other survivors out there. I know how they feel. When it first happens you are in shock, you’re terrified, you’re anxious and a lot of times depressed. As you start healing you realize no one understands what you’re going through. It can be incredibly frustrating. I realized I wasn’t alone. We all struggle with different things and we all heal at our own pace. When you look back thank God you survived to breathe another breath, and you lived to celebrate another day.

When thinking about sharing my story I wanted to bring my story up to date. What has happened since 2011? I had my youngest daughter in 2012 and continued on Lovenox even after the pregnancy. I was on twice daily injections for 2 years until I finally discussed with a new Hematologist about Xarelto in 2013. I was scared about it not having an antidote and being new on the market for clotting at the time. I was so bruised up from the Lovenox I was willing to try anything besides Coumadin. I haven’t had a single problem or bad side effect with Xarelto. It’s been confirmed by several Hematologists in several states that I’m on blood thinners for life due to the severity of my clots.

I’ve had a lot of bumps in the road with my health. I was diagnosed with sleep apnea in 2014. It was right before then I had started getting recurrent bronchitis. It’s something I’ve been dealing with every winter. I get out my nebulizer and do at home breathing treatments. I finally saw a Neurologist in 2016 for migraines and constant headaches. I had suffered from them for at least 8 years prior. I’ve had wonderful success with my new medication. Sometimes it feels like a constant battle between insurance, seeing doctors and balancing medications. There’s ups and downs. I don’t let it get me down. In 2 days I’m celebrating the day I got a second chance. The day I got to live again. The day I got to keep breathing. The day I became a survivor.

“My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” – Psalm 73:26 NIV

Thanks Lisa. Love you hun!!

 

Survivor Spotlight: Tanya Schwarz Turner

My story started in January of this year. I went to my primary physician complaining of hip pain that has bothered me on and off over the years.
Sometimes I was treated and sometimes I was not. This particular tine he sent me home with Prednisone and a follow up appointment in 2 weeks. Between the 2nd and 3rd days on the steroid, I started noticing pain in my left thigh with some slight redness. By Day 5, I could barely walk because the pain was so bad. I went to the doctor 5 times in the next 2 weeks complaining about this pain. An ultrasound was ordered on week 2 post steroid and I was told it wasn’t a blood clot but that it was superficial thrombosis. I Googled the term and found out it was in fact a blood clot!  
I didn’t know how serious it was at the time but I was going to find out soon enough. The pain, redness and incredible amount of swelling in the affected leg was almost more than I could bear. I could see the affected vein in my leg getting bigger and more red by the day. I was told to rest and elevate with heat. I listened to what the doctor told me to do. After all he is the professional, right?!
At this point, I had already missed 2 full weeks of work. The following week I went back to work for 2 days even though my leg wasn’t any better. They placed me on light duty for which I was very grateful! The evening of my second day back to work I had fallen just outside my door.  I slipped on the snow.  I struggled hard to get back up because the pain in my leg had become unbearable at that time. I got inside and couldn’t catch my breath, I was able to tell my husband I fell but I couldn’t catch my breath. I started to feel dizzy and remember telling him I needed to sit down, I never made it to sit. The next thing I remember is waking up on the floor with my husband over me asking if I was ok. I couldn’t get up for 45 minutes, I literally thought I was dying right there on my kitchen floor that night. I was admitted to the hospital with multiple bilateral pulmonary embolisms. I was sent in for a procedure to catheterize both lungs. I was so scared! I was in icu for 2 days, the cardiac unit for 2 days and then a regular room for another 4 days before I was therapeutic enough to go home. I also had a heparin drip the entire stay. While I was in the hospital I formed another clot in my calf.  I was so happy when they told me I could go home. Two weeks later, I was readmitted for another 2 days, new clots in the left lung. I switched primary doctor’s and so far I am happy with my new one. He is scheduling a follow up MRI due to my continued pain and discomfort.  I also made appointments with pulmonary and hematology this month. I’m looking forward to some real answers.

Survivor Spotlight: Cordellia Amethyste Rose

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May name is Cordellia Amethyste Rose.

On September of 2013, I remember being extremely tired and hearing a knock on the door. It was my friend, Michael and my apartment manager. They took one look at me and immediately called the hospital. A few days prior, or perhaps more than a few days, for even now the memories are foggy, I’d just had my first surgery to correct GERD. At this point, I had no idea what was going on. I was in a state of complete confusion as I listened to my apartment manager talk to the nurse at my clinic. I vaguely remember getting dressed and getting into a cab with Michael. I remember the lady asking me what I was there for and Michael trying to say something, but she wouldn’t let him; she just kept asking me, but I had no answer. It was like I was in a trance. They couldn’t help me at the first hospital, so they called an ambulance and took me to another hospital. I remember the nurse telling me that he couldn’t get a vein. He then asked me if he could use a vein in one of my feet, so I let him. I remember being in the ER and seeing my surgeon smiling and waving at me. At this point, they knew what was going on obviously, but I didn’t. I was just in a state of horrible confusion. My only symptom over those past few days was only extreme tiredness. People kept asking me over and over if I’d taken Tylenol. They asked me what I’d taken, and I didn’t remember. My brain was in a complete fog. I remembered taking my liquid Oxycodone and I made it a habit of measuring it out meticulously. I remembered having been prescribed some Tylenol, but it wasn’t until a few days later that I remembered not having filled it because it never worked for me. They kept insinuating that I’d overdosed on something, though I swore I hadn’t. I didn’t know much, but I knew I hadn’t tried to kill myself. I didn’t know at that time that Poison Control was on the phone with Michael and already verifying this.
I don’t remember at which point they told me what was going on, but I eventually learned that I was suffering from Acute Liver Failure, and that when Michael had brought me in, I’d been on the brink of death.

Over the next 4 miserable days, they’d run test after test, trying to figure it out. They’d come in 3 times a day to check my levels, as I begged to go home.
In the meantime, I kept complaining of pain in my right calf. I remember them looking at it and shrugging it off. This continued over and over. It wasn’t horrible pain, but it was enough to bother me. After 4 days or so, they finally released me, deeming me cured, back from the brink of death, saved by my friend. As I sat in the wheelchair waiting for my cab, I told the nurse, “my right calf still hurts,” and she replied, “Yeah, we still don’t know why” matter-of-factly. I didn’t take it seriously.
About 10 minutes later, the cab pulled up in front of my apartment building, I paid, and as soon as I reached the building entrance, I suddenly started gasping for air. I felt out of breath, like I’d just run half a mile, and I was obese back then, so that meant something. I made my way upstairs, thinking I should just sit down, and I would be fine. I sat and waited. I kept waiting, just thinking it would get better. I petted my cats and hoped that the gasping would end, but it didn’t. Finally, after 2 full hours, I called my on-call doctor for my clinic, and she told me to go right back to the ER. Deflated at going back after just being released, I called a cab and went back, but I felt foolish as the moment I arrived the gasping stopped. I thought surely it had all been nothing. Time would prove me wrong. They checked me out, and a doctor who was loudly chomping on gum stood with a nurse comparing my calves and trying to see if one looked more swollen. I wished he and his gum would just vanish. Over the next few hours people’s tones would change. Gone would be the garish voices, and in their place would be soothing whispers, as if at any moment I might burst. They wheeled me into a room to scan my legs for clots, and as I asked what was going on, the lady calmly said she’d found some clots in the deep veins…mostly of my right calf, the exact place where I’d been complaining of pain. There were a few in my left leg as well.
Next, they wheeled me into the CT scan, and I was wheeled back to my room without any further knowledge. I just remember that everyone was really quiet until a short, plump, and smiling Indian doctor came into the room to talk to me. She explained to me in a calm and sweet voice that I had a Pulmonary Embolism, which was a clot in my lung as well as Deep Vein Thrombosis, which were clots in my legs. She probably explained a lot more, but most of it eludes me at this day and time.
I remember lying there and asking how serious it was to all the quiet nurses and being told that it’s potentially fatal. I remember having to call Michael to tell him that I’d be in the hospital for a few more days and to watch my cats. Of course, he was obliging. I remember one nurse telling me she also happened to have worked for Poison Control upon my arrival, calling Michael an angel for running around my apartment looking for Tylenol (there WASN’T any), and being peeved that the docs were still accusing me of overdosing after she’d put that in my chart.
After being in the hospital for 4 days, I was stuck in the ICU again, being told I had something potentially fatal, being afraid of getting too upset because they told me it could travel to my brain or elsewhere, being overloaded with information about medications, shots, feeling lonely and overwhelmed to boot. I remember Facebook messenging one of my friends who happens to be a nurse and asking her to explain the medications they were talking about in the middle of the night because she was up. It helped.
I forget how many more days I was in the hospital, but I think it was only a few. I was horrified at the prospect of having to give myself shots. I was one of those people who said, “I could never do that,” but when they tell you that if you don’t, you’ll have to stay in the hospital for another 10 days, you certainly give it a try. It really wasn’t that hard.
I had to take Lovenox shots twice a day until my Warfarin levels were high enough, which took a lot longer than they’d predicted. Fortunately, with my insurance, the shots were inexpensive. I was extremely weak and needed a lot of help for the first month. My lungs felt tight, and I had a lot of pain in my chest. I remember thinking that I’d just ordered a 40-pound box of cat litter to be delivered to a store that was three quarters of a mile away and thinking it may as well have been on the moon. How was I going to get it? How was I going to do anything?
Over the next month, I learned a lot about kindness. After all, my life had already been saved by kind people in my building (Michael lives right upstairs.) My apartment manager sent her husband to get my cat litter and Michael often shopped for me because I could scarcely walk half a block without getting winded. It took about a month for me to be able to shop for myself.
I attended my doctor appointments carefully and asked everyone I could think of what they thought caused my liver failure, as this was still unknown. Nobody knew. Finally, my Gastroenterologist said his best theory, though this could never be proven, was that a blood clot had gone from my leg to my liver, causing the Acute Liver Failure. To this day, that is the only reasonable theory.
It took about 6 months for the clots to dissolve, but I was so freaked out about them that I elected to stay on the drug longer. Over the course of the next year, I went faithfully to get my Warfarin levels tested, pondered, mused, discussed, researched, etc… why they were rarely what they ought to be. I at first was overly cautious about what I ate, attributing my high or low levels to that, but then as time went on, the doctors and nurses and I agreed that unless I’d been experiencing drastic changes (i.e. drinking a gallon of juice one day and having a huge salad the next, then it really wasn’t likely to make a difference. I stopped being so paranoid and just went with the flow. The pain eventually eased over time, though it was Hell for the first few months, and nothing worked, no drug, no ointment, nothing. I just had to suffer and wait it out. I researched excessively whether to get tattoos, but anyone who knows me should know I always get what I want when I’m determined enough, so I got the tattoos, and it was all fine.
Now, it’s been roughly 3.5 years, and everything’s fine. Well, a couple of annoying things transpired: I’m no longer eligible to donate a kidney, and I also had to be removed from the marrow donation registry, both of which aggravate me to this day.
I’ve also had numerous other medical issues, and I even had another surgery to correct GERD, but that’s a whole other story. Life goes on. I’m fine. I’m glad to be alive.