Survivor Spotlight: Amber Davis

received_421226078477084I have PCOS, so I don’t get a normal period. This particular time, I was bleeding for close to 6 months. The last two weeks were the worst. It was more than I had ever seen. I ended up going to the ER because I was starting to have fainting spells. When I got there and told them I was bleeding to death because of my period, they pretty much laughed me off.  The doctors ended up doing labs and my Hemoglobin was at 6. They did apologize for not taking me seriously when I first arrived and ended up doing a blood transfusion. I spent two nights in the hospital. My OB prescribed an excessive amount birth control pills to stop the bleeding for which I was instructed to take 3 pills a day for 4 or 5 days. The doctor knew I was smoking and still prescribed these anyways. 

A few days later, I went to have a check up and asked him about a charley horse I kept getting in my right calf. He told me to take potassium. He didn’t even look at the leg. I am pretty sure I had a clot in my leg at this point.

A few days later, I couldn’t breathe. I went back to the ER. I was having an awful pain in the dead center of my chest. They took labs, x-ray and a CT. The CT was not clear. They said that they couldn’t see everything in the scan, but they didn’t see any big clots in the areas that they could see. They sent me home, gave me Ativan, told me that I needed to lose some weight and to follow up with my regular doctor for a good plan. 
I went to my doctor the next day and I was sobbing. I knew something wasn’t right. Just walking from my living room to my bathroom had me feeling like I ran a marathon. She believed me and because she is an amazing doctor she sent me to a pulmonologist. They put an oxygen monitor on me and had me walk very slowly down a short hallway. My heart rate went up to 130. This was even with me walking at a slow pace like an elderly woman. They sent me to have another CT scan the next day and I indeed had multiple bilateral pulmonary embolisms. I spent a few days in the hospital and was sent home with Xarelto. Unfortunately, I had a reaction to the medication and had to switch to Coumadin.

After six months, I had another CT and was approved to stop taking the blood thinners since I had been tested for all the clotting factors and was fine. I’m three years out, but the anxiety is still there.

Through this experience there were was postitive takeaways.  It forced me to quit smoking and lose 70 pounds. I can no longer take any hormonal birth control. I’m happy that I’m still alive and that I had a doctor who believed me.

Survivor Spotlight: Julie Cinders Hewitt

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The only illness or condition I have ever really had in my life was eczema. I did not realize bigger things were around the corner for me.

I had my DVT nearly 7 years ago. Just before New Years Day, I had the most horrendous pain and cramps in my leg.  It radiated down to my heel. Instead of paying attention to my pain and cramps, I carried on until January 2nd.  I then went to the doctor who sent me straight to the hospital where I was diagnosed with a DVT.  I was sent home with Fragmin injections and Warfarin. I was to take them for 6 weeks. I was never educated or told about DVT’s so I had no real concerns. 

On February 21st,  I was told I was highly unlikely to have anymore clots. I was never educated or told about PE’s at this time either.

Four weeks later,on March 22nd, I had a bad backache.  I went to my doctor who told me to take Ibuprofen and rest. It seemed to get worse. 

On March 24th, I went for a meal.  On my way home, after walking 15 meters, I couldn’t breathe. I couldn’t walk and my legs felt like lead. An ambulance was called and I was taken to A & E (UK Emergency room) where I was waiting for a doctor. I was sent for an x-ray but all the porters were busy so off I walked. I ended up clinging to a post, crying, as I felt so ill. Breathing and moving were so hard. I was moved to a ward where I was given my results of multiple bilateral pulmonary embolisms. I was told that I was being moved to ICU.  They did not have a bed for me there.  I was very sick and they didn’t want to send me to another hospital. At that point, I still didn’t know how lucky I was. I was wired up to machines and a nurse sat with me all night. The following day, a doctor told me I was lucky to be alive. I was sent for scans and heart scans. I spent 2 weeks in the hospital on Fragmin and Warfarin. I struggled to keep my INR in range without the Fragmin and was later changed to Apixaban. 

I had no symptoms really. On the same night I was admitted, a young pregnant lady came in with the same as me.  Sadly, they didn’t make it. I had bouts of guilt as to why I should have survived when two lives were taken. Thats when I realized how serious blood clots are. My anticoagulant nurse was no help at all.  I was told to not eat any vegetables, etc. I sat crying and all she said was here’s your appointment for tomorrow.

I found your group on facebook and a UK one too.  It’s the members who helped me on my journey.  Without you, I would be a bit of a mess. Silent killer is the right name for it for sure .

Here’s a BIG THANK YOU to you for all the help you have given me. It has been amazing xx

Survivor Spotlight: Amanda Nicholson

On November 2018, I was 31 weeks pregnant. I have had hypertension for a decade and was warned by my midwife that I was at high risk of developing preeclampsia but this was my second pregnancy so I wasn’t too concerned. I had a normal delivery without any complications with my first child.

On the morning of Monday, November 19th, I went to a routine midwife appointment which showed my blood pressure was very high. My midwife suggested I go to hospital. I arrived at the prenatal clinic and my blood pressure had risen further; I was starting to feel very ill. My body started to fit and the decision was made to be transferred by ambulance to another local hospital which could better support having a preterm baby in the event that he needed to be delivered early. The next couple of days I was monitored and given blood pressure medication around the clock.

On Wednesday, November 21st, I was informed that I had developed preeclampsia and my baby had stopped growing as my placenta was failing. The only option was to have an emergency caesarean section which was performed later that day bringing our healthy son, Theodore, weighing 3lb 4oz into the world.

By the end of the week, I had made a full recovery and with Theodore cared for in the Special Care Baby Unit (SCBU) I was discharged from hospital.

A week later, I started to get searing pain across my abdomen which I put down to the after effects of the caesarean section.  Within a day, the pain was so unbearable I could hardly move and couldn’t sleep. The pain had also started to radiate down to my legs. I went to A&E thinking it may be a kidney infection. When I reached the hospital to book myself in, I was in so much pain I could hardly say my name. Bloods were taken and I was told I would need to stay overnight whilst they investigated what was happening to me. The pain continued to increase and overnight my right leg completely swelled and turned purple. The doctor told me this looked like a blood clot and took some bloods to do a D-dimer test which came back positive for Deep Vein Thrombosis (DVT).

The following morning, I was given an ultrasound on my right leg which showed a clot which started in my calf and went up my thigh. A further CT scan showed that the clot had continued to travel and was in my main vein the vena cava stopping just before my lungs. I was visited by various specialists.  Each specialist told me that due to the extent of the clot it would almost certainly travel to my lungs or heart and that they would do all they can for me. I couldn’t quite comprehend the gravity of the situation and was in so much pain I think I blocked out the severity of what was happening to me. I had already had a traumatic ordeal developing preeclampsia and having to deliver our son early, only to be told that my life was still in danger.

I spent 11 days in hospital in the worst pain I have ever experienced. By this point both my legs had swollen due to the restriction of the blood flow and my liver and kidneys were showing signs of distress as the clot was blocking the blood flow to them. I could barely stand up let alone walk. I had to get around the hospital including visiting my baby in SCBU by wheelchair.

After discharge, I was at home for eight days but the pain and swelling increased in my legs rendering me completely immobile.  I was taken back to hospital by ambulance. This time I had a new consultant who fortunately had a vast knowledge of thrombosis. A CT scan was repeated and showed no change in the size of the clot. The rivaroxaban was not working for me. I was put back on the enoxaparin injections, my legs were also wrapped in compression bandages and I was still wheelchair bound.

I felt completely helpless, it was three days before Christmas and I knew I wouldn’t be spending it at home with my family, the thought of which was unbearable. I pushed through the intense pain I was in. I was determined I wasn’t going to die in this hospital bed at the age of 30 when I have a husband, a six year old and a new-born baby (who was thriving in SCBU). I set myself a goal to learn to walk again and take an extra step each day.

I spent 12 days in hospital this time, missing Christmas and New Years. There was a glimmer of hope starting to emerge, my blood work slowly started to show progress. My kidneys and liver were no longer blocked. My D-Dimer reading was going down showing the clot was starting to dissolve. The swelling in my legs subsided enough that the pain decreased and I was able to be more active. I was able to achieve my goal of being able to walk along the hospital corridor unaided.

After further blood tests,  I was discharged with compression stockings and a daily dose of enoxaparin which I needed to self-inject.

This was six months ago and whilst I am still at the early stages of my DVT journey, I have made a vast improvement. My legs still occasionally swell but I can walk unaided. I no longer take painkillers and my blood works are improving with each consultation. My consultant calls me his ‘walking miracle’ as neither he or the other consultants can believe that the clot did not travel to my heart or lungs.

I have seen a hematologist who tested my blood for clotting disorders, these came back negative showing that my clot was provoked by a combination of pregnancy, preeclampsia and my caesarean.

I continue to take daily enoxaparin injections and wear my compression stockings.  I am hopeful that the clot will have dissolved enough to continue a normal life, though if it has not then surgery may be an option. I know that there are still challenges along the way but regardless of the physical and emotional impact of blood clots I feel lucky enough to say I am a survivor with a healthy four month old baby. I am grateful for every day that I am alive and can’t stress enough that if you have any symptoms of a blood clot to please go and get checked out.  Catching a clot before it travels could save your life.

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Survivor Spotlight with Tina Cuva

My name is Tina Cuva. I am 51 years old and I live in NJ. I am a wife and mother of 2 who is very lucky to say, “I am a survivor”. I never knew anyone who experienced DVT’s or PE’s and there is no family history, so when I was diagnosed, I had no idea the impact it would have on my life.

On January 3, 2017 I had a total hip replacement. I followed all of my doctor’s instructions precisely, trying to make sure my healing would be perfect. I was cleared for surgery and as mentioned, with no family history of blood clots, I was sent home with a regimen of 650mg of aspirin a day. I started physical therapy in the hospital and then upon returning home my Bayada Physical Therapist starting coming 3 days a week for an hour. My therapist, Jeff, gave me my instructions to continue exercising throughout each day and to walk every hour for at least 10-20 minutes.

On January 23rd, I had just finished a short 10-minute walk around the house and sat down on the couch. As I settled back down to rest, I found myself short of breath. I brushed it off at first thinking I am out of shape and maybe did a bit too much walking but 15 minutes later I still found it hard to breathe. My husband came into the den and said, “you probably did too much today, take a deep breath”. He has been an athlete and a coach the majority of his life so I did as he said but still I wasn’t any better. Luckily Jeff was scheduled that day and when he came in he immediately noticed my breathing and jumped into action. A local Bayada nurse was also called in and within 15 minutes after she arrived, an ambulance was at my door. I was told by Jeff, my nurse and the EMT’s that I possibly had a DVT or a PE… a what? What are you talking about? I had no symptoms prior to the onset shortness of breath. No swelling, redness, leg pain, leg cramps, NOTHING.

Upon arriving at the hospital, the ER team quickly took my blood and off to a CT Scan I went. My adrenaline had kicked in so my breathing felt a bit better and I was telling everyone “I am fine”. I was still restricted on my movement with my new hip, so I had asked the nurse to help me as I needed to use the restroom. As the nurse was about to accommodate my request, out of the corner of my eye I see the ER doctor running towards my room, shouting, “MRS. CUVA DO NOT MOVE”. The next words out of his mouth made my head spin and I literally watched my husband slide down the wall…. “Mrs. Cuva you have over 20 blood clots that are hanging on the tops off both of your lungs, please do not move”. Scared, petrified, and overwhelmed barely cover how I emotionally felt. Knowing that if Jeff was not scheduled that day, I probably would not be here to tell my story.

The next three days in the hospital I tried my best to stay positive but the thoughts, for which I’m sure you all feel, kept creeping up: What if I move and a clot comes off and travels to my brain? Am I going to die? How did this happen to me? My hand constantly holding the button in case I needed the nurse and I was scared to be left alone.

They found the DVT in my femoral vein in my thigh. My team of doctors continually met with me and discussed my options of medical treatment to move forward. After leaving the hospital, I was put on 20 mg of Xarelto daily until May.

Testing was done and showed clots and DVT were gone. Now I’m on a daily dose of 325 mg of aspirin and an inhaler for the rest of my life. If I travel (plane, train or long car ride), I will be given Xarelto again for the duration of my trip and then back onto aspirin 2 days after I return home. The 20 tubes of my blood that were sent to the Mayo Clinic and showed no markers or indicators as to why this happened to me.

I would be lying if I said I live a life without blood clots lingering in the back of my mind whenever a bruise swells, I have a dry cough or even if I am short of breath if only for a minute or two but it is getting better. I am thankful for this group and the continual support I receive whether I am having a good day or a day filled with anxiety. Each day I become stronger knowing what happened to me does not define me. It is a gift that I am able to share with others. I am alive and one very lucky woman. I constantly tell my story in hopes that it can save someone given they are in the same situation or have the awareness to help someone else. I will forever be grateful for my Physical Therapist, Nurse and local Emergency Response Team for saving my life.

Thank you for letting me share my experience with all of you.

In gratitude,

Tina

Survivor Spotlight: Larissa Jensen


In October 2014, I was 42 years old, married for close to 15 years, mother of two boys ages 8 and 10. My full time job is hectic and my schedule is always packed. Because of this, and my type-A personality, I am organized, I am efficient and I am a planner. What I don’t like are surprises.
Little did I know that I was about to have the surprise of my life.
I woke up the morning of October 25, 2014 with a strange shooting pain on my right side near the top of my rib cage. It came and went and worsened with a deep breath. I also had a strange pain in my neck. My younger son had crept into my bed in the middle of the night so I figured I slept on my side the wrong way. Having justified the cause, I ignored the pain for most of the day, going about my usual Saturday routine. My husband was at work so I called my sister in law, who is a nurse, to tell her what I was feeling. Because I also had an ache on the right side of my neck, she said it could be a muscle sprain and suggested that a muscle relaxer would help. Being too busy to head to the clinic, I continued to ignore my symptoms, which got progressively worse throughout the day. While I was a little concerned, I reasoned that I would just go to a clinic the next day for some muscle relaxer if the pain doesn’t go away by then.
I went out that night to meet my sister in law for a comedy show near her house about 20 minutes away. I drove myself. While I enjoyed the comedians, I had a hard time laughing because I couldn’t catch my breath. My sister in law was concerned at this point and my symptoms became so bad that I had to leave in the middle of the show, drive home, all the while unable to breathe in deeply. I was becoming worried and promised myself I would go to the clinic in the morning.
Thinking back, it was a miracle I made it home that night.
Around 3am I woke up with horrifying pain on my right side every time I took a breath, even a small one. I was in tears, practically gasping for air, and I couldn’t lay flat. My husband began to panic and suggested we head to the emergency room. But I said no and just had him prop me up with some pillows and give me about 4 Advil to get me through the night. You see, my eight year old son had his championship baseball game the next morning at 9 am and I was determined to be there to cheer him on. I am also a hard core baseball mom who rarely misses a game and there was no way I was missing a championship.
October 26th, I got up early. My husband had to work again so I drove both my boys to the championship baseball game which was super exciting and I was thrilled to be there. I got to cheer my son’s team on to a dramatic victory in the last inning of the game. I took pictures of my son, his teammates, their trophies and basked in the joy of the win before calling my husband from the baseball field to tell him he needed to leave work early to meet me at home because I wasn’t feeling great. I had to head to the clinic now.
After dropping my boys home to my husband, I drove myself to a Stat Health clinic near my house. I shared my symptoms with the front desk and they immediately ushered me in to a room because of my breathing issues. When the doctor came in, I gave him my diagnosis – I confidently explained that I have a muscle sprain, need a muscle relaxer and I’ll be on my way. He listened politely and said that I may be right, but he wanted to ask me some questions first. After discussing my symptoms with me, he sat thoughtfully while jotting some notes into the computer. He then explained that he was a former ER doctor, and given the symptoms I’m having he suspected a pulmonary embolism in my lungs. He recommended that I head to the hospital ER down the road to rule out the possibility. I had never heard of a PE and I asked when he thinks I should go. He said immediately, and handed me a note to give to the ER that indicated a possible PE. His sense of urgency made me nervous and a little scared. It also made me slightly annoyed because I had a full day planned. My older son had a big school project due the next day and my younger son (who had just won the championship) had a birthday party to go to at 5pm. I looked at my watch. It was noon. Ok, if I went now I could make it home for the birthday party. I called my husband to tell him the situation.
As I drove to the hospital, with my doctor’s note in hand, I began to doubt my plan. Did I really have time? Should I just go home and head to my primary doctor tomorrow? It was near my office so I could drop in during my lunch hour. I debated with myself for several minutes. Yes I should go. No it’s not worth the trouble. As I drove up to the hospital, I made the last minute decision to just go in to the ER. The deciding factor? I could not bear to go through another night of that horrifying pain again.
Once in the ER, I handed my doctors note to the front desk. Once again I was whisked past the waiting room and directly into a bed. I was grateful for the note that got me special attention, but still didn’t fully realize the severity of what was going on. The next few hours were a blur of doctors, nurses, blood work, and questions, questions, and more questions. No, I had not been in a long car ride lately. No, I had no pain in my leg. No swelling either. No, I had not been on any international flights.
My husband joined me at the hospital around 1pm. He had reached out to his parents who drove out to our house to stay with the boys so he could be with me. He was now extremely nervous. I wasn’t. I was more annoyed than anything else, becoming more and more convinced that this was a waste of time. I’m young. I’m healthy. I answered no to every question they asked. This was a no brainer. Just give me my blood results, some pain meds (maybe a muscle relaxer) and my discharge papers and I’ll be on my way.
As the blood work results trickled in, everything came back normal. Just as I had expected. But everything was taking forever and time was ticking away. It was now almost 4:30. I told my husband he had to leave me, go home, and drive my son to the party. He refused as he didn’t want to leave my side. But I was adamant that my son (who did not know what was going on with me) not miss his party. My husband finally relented. I convinced him he could drop my son to the party then swing by to pick me up to go home, because really, everything was fine. Every result had come back fine. I had only one more test result waiting to come in, and a CT scan with contrast to rule out blood clots.
The one more test result I was waiting for was the D-Dimer.
In the 30 minutes while my husband was gone, they did the CT scan. As my husband walked back into my room, I was already getting ready to leave assuming I would be getting my discharge papers soon.
The doctor walked in minutes later to share the last of my results. My D-Dimer result, which should be in the range of under 300, was over 1800. And the CT scan showed a massive bi-lateral pulmonary embolism. He explained this meant I had massive multiple blood clots in both my lungs and I had to be admitted into intensive care immediately.
I felt as if I’d been hit by a truck. Looking at my husband’s face, he felt the same. Blood clots? Intensive care? I had to stay here overnight? This was impossible. Not me. Not now. I had a school project my son needed me to help him with. I had a client meeting in two days I needed to prep for. I am young I am healthy this can’t be happening. No way. Then I broke down with the realization yes, this is happening. I started to cry. I was terrified.
Nurses came rushing in to inject me with Lovenox and set me up for admission into the IC unit. I kicked into high efficiency mode. I had some phone calls to make and emails to send. My parents, my sisters, close friends, my boss, my direct reports, the middle school guidance counselor and elementary school teacher. I got an extension on my son’s project and coordinated someone to attend the client meeting for me.
The next several days in the hospital were enlightening. The head doctor on my case told me that the 4 Advil I took the night before probably saved my life that night and if I had waited even a few more hours the outcome of my story would have been very different. Thank God for my last minute decision to turn into the hospital parking lot.
Apparently I had been a ticking time bomb. And extremely lucky. Every single blood clot had traveled through my heart into my lungs. If any of them had been just a little larger they could have blocked an artery and stopped my heart. If any had strayed into my brain, I would have had a stroke. I had no DVT, and my only preexisting condition was a recessive MTHFR mutation gene, which was not enough to cause my massive PE. It was determined that the cause of my PE had been the birth control pill. I was released after 5 days and put on Xarelto for 6 months.
The next year was not easy. I had lost the wind under my sail. I came to realize just how close I was to death and began to develop PTSD-like symptoms, constantly worrying the clots would come back. It was paralyzing at times, causing me to be short of breath from the stress and anxiety, which led me to believe I had clots again. It was a vicious circle. I became depressed and unable to “pick myself up” again. My anxiety shot through the roof and I began taking anti-anxiety medications. After the 6 months on Xarelto, my depression worsened and my doctor put me on anti-depressants. I gained weight. And I had no energy to exercise.
Amazingly on the outside I did not miss a beat. I kept up with my hectic schedule and even managed to be promoted within my role at work. As the years went on I got better. I was able to wean off the anti-depressants, lose the weight I gained, and increased my ability to exercise, even managing to run a 5K race in the summer of 2017.
But there will always be setbacks. A few weeks ago I developed an upper respiratory infection that sent me to the ER again because doctors determined my difficulty breathing was not due to pneumonia or asthma, and given my history with PE, “the tolerance for error is zero”. And so, 4 years post PE, I remain chained to its effect on my life. And if I’m honest with myself it makes me frustrated and angry. I am only 46. If I live as long as I’d like to, that is many years of imprisonment to my PE history. I will never truly be free. But I can continue to forge ahead and be thankful for every day I have. I have always lived by the mantra of “whatever doesn’t kill you only makes you stronger”, but didn’t really understand it’s true meaning until October 2014 when I got the surprise of my life. Did I mention I hate surprises?

Survivor Spotlight with Suzie White Korte

This journey for me all started in 2005 when my back went out. I was literally in bed for two and a half months before they could get me in for surgery. I could not walk and had to have my son, mother- in- law, sister and my husband assist me to the bathroom and back to bed.

My first back surgery was August of 2005. During this surgery they took the bottom two discs out and didn’t put anything in their place. Another surgery came in 2008 where they removed another disc above where the other two were. At this time, I was diagnosed with fibromyalgia, high blood pressure, high cholesterol, severe nerve damage in my left leg, irregular heartbeat, severe depression, anxiety, panic attacks and several other medical conditions.

In May 2011, I had a spinal cord stimulator put in. It is supposed to help with the chronic back pain.

In January 2014 ,I started swelling in my face, legs, hands, etc. The then put me on a water pill.   It worked for a little while.

Then in September of 2014, my legs swelled so bad they looked like tree trunks.  I couldn’t see my knees or ankles and my face swelled up enormously.  That evening I started having heart palpitations and really bad chest pain. I honestly thought it was a heart attack. I took my blood pressure and it was really high.  I told my husband that I needed to go to the ER.   He stated to me that he didn’t have the gas to take me there and still be able to go to work in the morning.  By this time, my chest hurt so bad I was crying.  I told him I was going to call 911 and he said “No don’t do that. What if someone has a life threatening situation?” At that point, I didn’t care. I called 911.  The paramedics came and took my BP.  It was 175/110, my pulse was 168 and my O2 was sitting at 87 .  I was then placed in the ambulance.  By this time, I was wheezing really bad and so they gave me a total of 3 Nitros in the ambulance.  It didn’t change anything.  I got to the hospital where they took me straight to a room.  They did the IV and several other things.  Then they rushed me for a CT scan.  When the results came back the doctor came in and said you have massive bilateral pulmonary embolisms and a DVT.   I had never heard of it before now.  He said to me that usually when he places this type of diagnosis on someone they are already deceased.  I spent 3 days in ICU. I don’t remember much. I do remember my husband came to see me in ICU.  He walked in crying.  He said he was so sorry and that he had no idea I was that sick.  After 3 days I was sent to a regular room. I spent a total of 6 days in the hospital.  They had me on Lovenox injections and Coumadin. I went home with a script for Xarelto for which I am still taking.  

A few weeks after all that,  I went back in and had another DVT. They kept me a few more days and sent me home.  I finally got in to see a hemotologist and asked him to run tests for blood clotting disorders.   He said there were too many to test for but he did test for a few it came back I had MTHFR.  I had to do some reading to find out what exactly it was.

After I came home from the hospital I was afraid to even move.  I had many panic attacks and I was scared to death.

Now, 2 years later, I got a second chance at life! I never take not a minute for granted because it can all be gone in the blink of an eye. I want to say I don’t know what I would have done without this group.  You ALL got me through the scariest time in my life ever and for that I can never EVER repay you all! I love each and everyone of you ❤

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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.

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: 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!!