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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