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

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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: Timika Va’linda Williams

Working in the school system, I was happy to see the school year end. Summertime, finally!! A weekend away with my best friend was a great start. We drove 3 and half hours; visited with her family, did a little shopping in the midst of me wobbling around on my left leg which was swollen. Man, I must have pulled a muscle in my leg packing up for the end of the school year. I pushed through the weekend, icing my leg every night and taking Aspirin or Tylenol to get rid of the pain.

Finally back home, Sunday night I rested and told my best friend I would go to a walk in clinic Monday morning if it didn’t get any better. Hey! I had more plans of traveling and I didn’t want a muscle strain to hold me back. On Monday, June 5, 2017, the pain and swelling was still there. I decided to go to the walk in clinic. The walk in clinic doctor saw me and the questions began. Finally some news, “I can treat you for a muscle strain, but it may not be that. I believe it may be blood clots. We don’t have the equipment here to test for that, but I urge you to go to the ER.” At that moment I said ok, not believing at all I had blood clots. This was something I didn’t know anything about and didn’t believe I would be dealing with.
My best friend drove me to the new ER that had recently been built. The walk in clinic doctor mentioned they probably would get me in quick with no wait. Immediately, I was taken back and my world changed. “You have a DVT in your left leg.” Ok, so what do we do? “I need to contact the attending doctor at the main branch, you may need to stay over night.” As my best friend contacted my family, I lay there not really conceptualizing what was going on with me.
That evening I was transferred to the main hospital by ambulance and I spent the night in observation. My family immediately showed up concerned. My sister-in-law (a nurse practitioner) offered suggestions of what medicines were best for less of a lifestyle change; Xarelto or Eliquis. Before going home the next day I was prescribed Xarelto, I spent the next two weeks healing, resting and limping around before walking would get better. I worked on canceling my Cancun, Mexico trip and enjoying a staycation in my home town for my summer break. I took my medicine diligently, ordered my medical bracelet, attended my follow up appointments and finally came up on the three month mark.
I was finished with my medicine, I waited a few weeks and had an appointment at my pulmonologist. He ordered various blood clotting tests, a D-dimer and an ultrasound of my legs. All blood clotting test came back negative, the D-dimer was in range and the ultrasound showed the DVT was gone. Yes! I’m free! I’m blood clot free!
Time passed and life went on! January 2018 began and I was excited about a New Year. I had recently convinced my pulmonologist to allow me to try to ween off of my inhaler I use for chronic bronchitis; I desired to live a drug free life; I’m young I thought. Tuesday, January 2, 2018 night came and I started to feel a little short winded, my heart would race when I moved around, I was dizzy and almost passed out twice. Wednesday, January 3, 2018 I had a pulmonologist check up appointment. I felt like maybe it’s my chronic bronchitis (I guess I shouldn’t have stopped the inhaler) and I need to go in for a breathing treatment since my nebulizer is broken.
As I woke that morning, I could barely move without feeling exhausted, my heart was racing and I was dizzy. I knew I needed to get in as soon as I could! Thankful, I called and they agreed; though the doctor wouldn’t be in yet so I could see the nurse practitioner. When I first went in I believed I was having an asthmatic attack due to my chronic bronchitis; I just wanted a breathing treatment.The nurse practitioner came in to see me after the nurse had set me up with a breathing treatment and given a shot to open up my lungs. She listened, to my past (Previous DVT, chronic bronchitis) and what my current symptoms were… requested I take a CT Scan and calmly had the medical assistant call the hospital outpatient center across the street to get me in the same day.
With my trusty best friend by my side, my mom and brother (they were on alert since I had been feeling sick that morning) near by, I went to get the CT Scan. I didn’t know that scan would be an admittance to the ER and a five day hospital stay. Upon hearing the news from the ER doctor, I broke down in tears. I wasn’t crying because I was scared. I cried out of confusion and frustration because I wanted to know why, I wanted to know why this was happening and what was causing it. Now my life was going to be altered because of the return of clots. I was diagnosed with a extensive upper, lower and central pulmonary embolism and right heart strain. That night I also had a leg ultrasound and we would find another DVT. My doctors, sister-in-law (nurse practitioner) and myself, after discussing all treatment plans agreed on the insertion of an IVC filter in my vena cava. The doctors stressed my heart and my lungs could not take any more clots; it would be more unneeded stress on them.
Now I live with all my doctors in agreement; blood thinners for life. As my hematologist says; “We may never find out what caused them, even if we do, it’s the same treatment. You will be on blood thinners for life.” Don’t get me wrong, I’m thankful for the blood thinners (Eliquis this time around) to correct the wrong in my body. Though I still want to know why. When I was first diagnosed in June 2017, I was on birth control. Though I was on birth control for over 18 years! I spent over 18 years of my life with not getting blood clots. Why now? So, I pushed for some tests, and my hematologist agreed, though states the blood work doesn’t suggest intensive testing for cancers or disorders. I also had been tested for cancer in the hospital and that came back negative. My life right now is about finding me the best team of doctors I can. The first time around I believed it was a fluke. I had my primary and pulmonologist who would would run the test we deemed necessary. I now have a primary doctor, pulmonologist,hematologist,
cardiologist and a periodontist (my gums have been swollen since the stop of the first blood thinners).
I push for answers, though I live my life thankful. Thankful I know God. I am also Thankful that I have family and friends right by my side to support me every step of the way. Thankful I could take off two weeks of work after my hospital stay, go back working half days when needed, or a day off and not be afraid my job is in jeopardy. Thankful I can say I survived, though even more thankful to say I live! I live to feel every ache and every pain. I live through every joy and every laugh! Tears may come at times and that is okay, I push through, I move on, thankful to be here to experience every emotion of living. These blood clots are not me, they are a detail about me. They will not consume me.

 

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Survivor Spotlight with Lisa Marie Nielsen

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Today’s Survivor Spotlight is with Lisa Marie Nielsen. She actually wrote out her story herself in a blog.  I decided their was no use in me re-writing it and she has some videos and such added to hers that I wanted to keep intact with her story.  What an amazing lady with a great support system and reminders that the best medicine for some of us is those infectious little people in our lives that definitely keep us hopping, hoping, laughing, praying, loving, hiding and bringing much joy to our lives in so many different ways!

Click here to read and please share her story for Awareness!

https://lisamarienielsen.wordpress.com/2017/01/04/once-upon-a-december/?preview=true

 

Survivor Spotlight with Kim Halloran

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My clotting history dates back to 1994 with my first known risk being birth control.  At that time, no leg scans were done to confirm my diagnosis, but looking back, I know that is when I started clotting. 

A few years later, I had multiple superficial clots in my legs.  My doctor didn’t seem concerned and only instructed me to take Ibuprofen, heat and elevate. 

While training to run my first marathon (couch to marathon) in 2003, less than a month before the marathon, I developed multiple superficial clots and was told that I was to rest, take Ibuprofen, heat and elevate.  I was also told not to run the marathon that I had been training for 9 months to do.  They still ran no tests to determine root cause.

In 2006, I had a pain in my thigh and I told my doctor I believed it to be a clot.  They sent me home with a diagnosis of cellulitis and a script for Cipro.  That weekend, we drove 6 hours to attend my cousin’s wedding with no dancing for me due to the pain being unbearable at this time.  I returned to the doctor with no improvement after a week.  They finally performed the leg scan and confirmed a (very painful) superficial clot.  When I got pregnant a few months later, my doctor decided to have a full work up done to see why I was clotting. We learned that I am hetero for FVL & MTHFR.  Neither my hematologist nor my primary doctor believed that having either heterozygous genetic anomaly would increase my risk of clotting so they put me on 81mg aspirin for the duration of my pregnancy as a precaution. I joined a list serve born out of FVLEIDEN.org, created by Deb Smith – before the days of Facebook. This community begged to differ.  They provided support and advice much like SASK.

In May 2008, a year after a successful pregnancy, I woke up and walked down the stairs with a “groin pull” sensation.  After arriving to work, one leg felt heavier and I immediately suspected a DVT (my first).  My FVL list serve community urged me to get to the ER as sson as possiblefor they believed I had a DVT.  With DVT confirmed, my FVL list serve community gave me the best advice.  they  told me I should seek out an interventional radiologist and get a consult for a catheter directed thrombolysis (CDT).  I found a vascular surgeon who would perform the procedure, knowing the best success happens when the procedure is performed within 7-10 days of DVT onset.  Time was of the essence to prevent post thrombotic syndrome (PTS).  I was asked to be in a study which was to help determine if DVTs were better treated by Warfarin+time or by the CDT.  I declined, knowing that the CDT was what I needed to do.  During the surgery, it was learned that I had May Thurner’s Syndrome (MTS), something that wouldn’t have been found without the CDT.  I had a stent put in to prevent future issues, believing that to be the cause of  my DVT. 

Looking back, I had the perfect storm which helped facilitate the DVT occurring – dehydration caused by food poisoning that resulted in bed rest & starting a new diet full of green veggies – all in a week or two span. I had felt the superficial clot the week before in my ankle on Monday, in my calf on Thursday and gone (no pain) by the weekend.  The DVT symptoms occurred the following Tuesday.  I was on Warfarin for 6 months & then cleared.  I never felt I had dodged a bullet so to speak.

In Feb 2016, I got home from work, elevated my legs to watch a little TV, and upon standing I felt one leg was heavier than the other.  Immediately, I thought I may have a DVT.  I went upstairs & packed an overnight bag while calling my doctor’s office to talk with the on call doctor.  He told me to drive (through a nasty snowstorm) to the regional hospital where I was sure they’d keep me for a night and send me home.  The ER whisked me in, confirmed the DVT and was afraid to touch me, preferring to transfer me to the hospital my vascular doctor was affiliated with.  Needless to say, I had my first chauffeured (ambulance) ride to the city for a lovely weekend at the B&B (was stuck there for 48 hours in observation).  A week later, my vascular doctor had me in to clear the clot and put in a 2nd stent to elongate the first one with 6 months of Xarelto which caused horrible bloating and a 30 lb weight gain in 6 weeks

About a month after stopping Xarleto, whistling as I worked in the garden all weekend (Nov 2016), never occurring that I could possibly have another DVT, I became dehydrated.  Within two days time , I knew I had a superficial clot.  I treated myself (NOT ADVISABLE!) with regular aspirin to “dissolve” the clot for a month.  The aspirin wasn’t working, so back to my vascular doctor for a check.  All went well, only a superficial clot was found, so back on Warfarin it was with the hope of preventing a DVT.  A few days later, I had a ‘”twinge” in my back, believing it to be a slightly dislocated rib, I saw my chiropractor for an adjustment.  That same afternoon, I saw my hematologist for a follow-up and Warfarin management.  Both were told of my pain which occurred only with deep breath and only one spot on my back, right side under the back of my bra.  My pulse O2 was 98% & heart rate was fine.  The pain level increased significantly over the evening.  After 2 painful nights, I googled rib pain and PE.  Two posts came up stating that PE was often misdiagnosed as rib pain. Given, I had suspected I had a superficial clot for a month which had been a confirmed diagnosis the week before, it made sense that it was a PE. When my husband brought me to the ER, I told them it was very likely I had a PE. They ushered me in quickly and performed a ultrasound that confirmed a DVT and the CT showed bi-lateral/saddle PEs. I got in quickly, so no residual issues for which I am very lucky.  I am on Warfarin for life now and I’ve been having (mostly superficial) clots for 25 yrs now.  The years of clotting and multiple DVTs weakened my valves.  Due to this damage, I’m now more prone to DVT’s. 

I’m one year out from dodging that PE bullet and hear the message loud and clear now!!  I am thankful I didn’t die, as my grandfather did from a PE. We only live once and I am so very blessed to not have PTS or chronic pain from all my years of clotting.  I am also equally blessed to have a wonderful husband that supports me.  As much as I resisted having to take Warfarin for life, it has given me a second chance to be with my family,  do things I love like scuba diving for which I did this summer and it was a blast! I don’t think I’ll be skydiving again and I don’t think I’ll be skiing black diamond trails on icy days, but on fresh powder? Sure! I’ll wear a helmet and take it slow. I’m probably more at risk of bleeding when I am quilting.  😉  Counting my blessings daily.  ❤

Survivor Spotlight with Heather Davidson

My Survivor Story…..By Heather Davidson

My nightmare began on December 27th, 2016 . At least, I felt like this is when it all began but actually it began on May of 2016.  I have dealt with a hormonal imbalance for many years.  After numerous naturopathic remedies, Endocrinologists, Primary doctors, support from friends and family, I decided to take my last option available to me, birth control pills. Marvelon was Marvelous! I felt myself again for the first time in many years and was living life to the fullest again.  Little did I know that this “magical pill” was doing more harm than good.

I had Sinus and Septoplasty surgery on November 1, 2016.  This was a simple Day Surgery and I was only off work for 2 weeks to recover.  The only reason I needed 2 weeks off is to catch up on all the lost sleep that I didn’t get from the week before. After returning to my teaching job I noticed a charley horse pain in my left calf that would come and go.  I found sitting caused more pain while moving and walking made it feel better.  I developed eczema around my neck and had major night sweats for a few weeks.  I kept telling myself it was from the surgery and that my leg must hurt from potassium deficiency.  The pain continued into December. I remember going Christmas shopping with my mother and I couldn’t wear my favorite heeled boots as the charley horse pain was becoming more painful.  I seemed to lose my energy more quickly and even climbing up 2 flights of stairs to get to my classroom seemed like a huge challenge.  I jokingly asked my administration to put in a chair lift as I was breathless upon getting to the top. Again, self diagnosing, I thought I just must be out of shape because I had not exercised since before my surgery.  I just felt I never bounced back from surgery the way I should have.

My family noticed over Christmas how I had a hard time walking.  After leaving my mother’s house to return home on December 27th ( a short 45 minute drive), I couldn’t walk thanks to my left leg pain.  I told my husband how I thought I needed physio and finally decided to go see my family doctor. The doctor listened to my heart beat, measured my left leg and checked my blood pressure.  Shortly after that, she told me to immediately go to Emergency Department as she feared I had a blood clot.  I remember laughing at her and saying I was too young for this.  After waiting hours at the hospital, the ultrasound technician called me in and told me that yes, I had an ankle to groin left leg DVT.  I was sent home with a prescription of Xarelto and told to follow up with my family doctor.

The next day I went back to my family doctor. Again my blood pressure was off and I had a lot of PVC’s when listening to my heart beat.  She was worried that these clots were also in my lungs.  She called the hospital and they rushed me in for a VQ lung scan.  I knew immediately after the test that the worst news was coming my way as they made me wait in a waiting room filled with Kleenex boxes.  I was told 2 clots were in my left lung and I was lucky to still be alive.  I was in shock when I heard the term 2 PE’s in your left lung. I remember crying for hours as I called my family to give them the news.  I was supposed to be going to a Buffalo Sabres game that evening with all of them.

I was hospitalized for 3 days in a hospital that had no beds.  I was placed in an emergency ward surrounded by patients with pneumonia and influenza.  A week after coming home, I had pneumonia which wasn’t easy on my poor lungs.

The next few weeks were a challenge.  I could hardly walk and was sleeping at least 16 hours a night.  I needed to rely on my husband and mother to pretty much do everything.  I was told no lifting anything over 5 pounds for at least a month.  It was very difficult emotionally to go from an active person to a dormant person.  The worst part was that I have a 6 year old boy who witnessed all this and wanted his mommy back.

My nightmare, as I refer to it, has taught me a lot over the past 10 months.  I am still learning who I am, who I want be and who my friends are and who supports me in my life. supports in my life.  I have learned to truly love myself.   I am lucky to be alive! I and thankful, appreciate am grateful for my second chance.  Recovery has not always been easy and I have been faced with many challenges along the way but I believe this experience has made me a stronger person.  I am beginning to work out again, build back my strength in my lungs and my muscles.  I am able to play with my son again and not always tell him that mommy is too tired.  I am able to go out in the world again and not panic that this experience will ever happen again even though some days this is a struggle more than others.  I am climbing a mountain, ready to reach the top and start my journey down. By sharing this story I hope to raise awareness to support those who are struggling.  I give huge thanks and gratitude to the 2 Facebook support groups I joined that have helped me tremendously in my recovery.  I hope my story will help others.

Survivor Spotlight with Vikki Mathews

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My story began February 1st 2017.  Eight days before turning 18, a horrid headache hit me very suddenly. It felt like a very bad migraine, in which usually pain killers, a nap and a dark room would cure. Three days later, I still had no relief.   I sought help and was told it was a classic migraine. I received migraine medicine, which I was happy to accept, as it wasn’t the first time I had a migraine that lasted days. Over the next week I tried a few more migraine medicines and days of rest to help.  I spent my 18th birthday in awful pain.
On February 20th, at 5 am, I woke up with a blinding headache. I rang in sick to work and immediately made another doctors appointment. On this day, I got sent to A&E. The right side of my body was numb and weak.  I was vomiting and had a massive headache which are the classic signs of a stroke right? Apparently not, the ambulance team and doctor at the hospital told me it was stress headaches.  I was sent home with more migraine tablets! I recovered from a mini stroke at home and spent over a week in bed. I was in and out of consciousness.  I was also having seizures (which I didn’t know were seizures until much later). After another complaint of head pain to my doctor, I finally got an MRI.
Finally, on March 13th, I got a phone call to get to hospital for immediate treatment. Here, they found a secondary bleed and 2 blood clots in my brain. They also told me that I had a mini stroke in February. I was diagnosed with Cerebral Venous Sinus Thrombosis and put straight on Clexane and Warfarin. After experiencing another seizure, I was told that I was experiencing partial seizures in my arms due to scarring on my brain from the clots.
I found out in June my clots and bleed had disappeared.  My brain looked much better! In September, after blood tests, it became apparent that I had a genetic mutation called Prothrombin Variant Heterozygous Mutation causing my blood to clot more than usual.
This mutation combined with the contraceptive pill, triggered clots to form in my brain. I still struggle every day with the effects the clots had on my brain, despite my brain “appearing” okay on scans. Before this, I never even thought someone my age could get blood clots anywhere, never mind in the brain and be at risk of a deadly stroke or sudden death. I am still coming to terms with what I have been through myself, but still try to raise awareness where I can of the rare side effects of the pill and the signs and symptoms of thrombosis and stroke. I would like to think I could prevent this from happening to someone else by raising awareness.
 

 

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 Gary H. Steadman

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At 54 yrs of age, I was more healthy than I’d been in decades. or so I thought. What I didn’t know was my life was at greater risk than ever before. Four years earlier I’d made significant changes to improve my health and quality of life. I began exercising consistently, changed my diet, lost 50 pounds and transformed blood test results from ugly to spotless. It all worked fabulously and yet, my life was in grave danger with every breath and heartbeat. I had no idea what was happening, none.
The end of October marks my one year anniversary from the moment my world suddenly changed. I should say my awareness suddenly changed because what was happening in my body took time and developed slowly. It was late October of last year that I found myself desperately short of breath. I couldn’t climb stairs. I’d been fighting for what I thought was a cold for weeks, over eight weeks to be exact. The cough I told everyone would go away in time, was getting so severe I could barely breathe without having a coughing fit. I’d made three visits to the doctor, gone through every prescribed course of treatment and was only getting worse.
At the same time, I was limping along with knee pain. A pain I believed came from my running. I’d trained for weeks in preparation for an early September Half Marathon. With distance training, for me anyways, has always had some form of pain somewhere and the pain in my knee wasn’t new at all. This time it couldn’t be soothed in the usual ways with icing it down, stretching, foam rollers or even deep tissue massage. I completed that Half Marathon in early September. Knowing what I know now, I feel fortunate I made it to the finish line alive.
My wife had seen what was going on with my health but it wasn’t till late October, when I shared one more symptom with her, we decided I had to get to the hospital. The leg with knee pain was now swelling and the pain extended from my ankle up to mid-thigh. We were received at the hospital ER rather routinely, checked in and waited three hours till a room was available. The nurse ran us through the routine of questions and examined my leg and lungs for the coughing. From there, things got a little crazy.
This ER nurse was an angel. Although she wouldn’t say so directly, she knew what was going on right from the start. She pressed for quick action in getting specialists in to see me, tests ordered and processed. Over the course of the next few hours, I would see no less than five different specialists. They ran round after round of blood tests, x-rays, EKG, ultrasounds, CT scans, more CT scans. It was a long night and very much a blur.
My diagnosis was Deep Vein Thrombosis (DVT) in five separate major veins of my right leg extending from ankle through hip. On top of that, the CT scans confirmed extensive Pulmonary Embolisms (PE) in both my lungs and in all lobes. There’s not a lot of detail I recall from this blur of a night but a few things that I do recall clearly are numerous medical professionals reviewing my case and shared I was “very lucky to be here”. I don’t recall any doctor willing to state I’d be ok, just that they’ll do everything they can to help me. The Pulmonologist, reviewing my chest CT started to count the PE’s then stopped because there were too many to count. His comment was, “It looks like a snowstorm, this’s impressive!”. I really didn’t want to be, impressive.
For the next four days, I would be in Critical Care. I was administered Heparin by IV to stop further clotting. We reviewed numerous potential avenues to resolve the clots in my leg and my lungs. Ultimately, we were advised, my situation was so extensive any invasive action which could be taken would put me in even greater danger (of a terminal event).  We’ll use medication to stop the clotting and the rest is up to my body’s natural healing processes. In time, that’s exactly what has happened. My body has largely healed itself. My leg is still not what I would consider normal, but it’s 95% and that may be my new normal.
All that being said I have to be honest, this is where things actually got difficult for me. This was, and still is, an emotional roller coaster like I’ve never before experienced. For me, this was the first time I’ve been convinced I was truly facing my pending mortality. The challenge of this and the changes it brought on an emotional level have been something I simply didn’t see coming. This is very hard to share and something I’ve pondered countless times in the last few months. I don’t see many addressing this side of what’s happened to them, the emotional impact, and that’s part of the problem. You can feel very alone even though you’re not. So if you’ve been through this or something similar and that roller coaster is hitting you hard, know you’re not alone.
To survive a day you’re absolutely convinced was to be your last, profoundly changes your outlook on everything. EVERYTHING.
I can’t think of a better way to characterize the impact of this event. It can be a good thing. There are highs on the roller coaster I refer to above. You appreciate everything in new and more powerful ways. Your family, music, the spring air, fall colors, a baby’s cry (even if it’s in the airplane seat behind you). You have less time for things that waste your time and more time for things that don’t. There are countless cliche’s I could rattle off here but what I’ve come away with is this. At my one year anniversary of this life event, I can appreciate this year which might not have been. Better than that though, knowing my risks means I have a better shot at enjoying many more to come and I’ll be savoring every bit of it.
Learn the symptoms of thrombosis and your personal risks. One day it could save your life or the life of someone you love.
To Survive a Day...

Survivor Spotlight with Maria Buchan

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My Survivor Story

In 1996 ,at the age of 23, I was celebrating my 1st wedding anniversary and the news that we were expecting our first child.  Everything was going well with the pregnancy until 36 weeks. At this time, I developed pre-eclampsia and was admitted to hospital for rest. My body was swollen, I had high blood pressure, protein in my urine and the most excruciating pains in my legs so much so I couldn’t lie on them.

At 38 weeks, I went in to labor.  I had complications and had to have a C-section. I had a bad reaction to the anaesthetic and went into shock.  I was on a drip, antibiotics and pain meds. After 5 days, I left hospital with my gorgeous newborn son, but things just were not right. I was breathless, unable to walk very far and still had the pains in my legs. No one listened to my concerns. At my 7 week post-natal exam, I mentioned this to my doctor and she told me not to worry for the fact that I had just had a baby. She assured me things would be fine.
Three days later, I collapsed at home with only my baby boy with me. Luckily, I woke and phoned my mum. She ran over and phoned a doctor on a Sunday afternoon.  After the doctor saw me and examined me he told us that I had to go to hospital immediately.  I wasn’t in a good place.

In the hospital, I was placed in a critical bed near the nurses, I couldn’t even walk the 2 feet to the bed! I was placed on oxygen. I had chest scans, vq scans, more tests, bloods etc. Later, I found out how lucky I really was.  I had numerous blood clots including a sub massive clot in my left lung, and pneumonia.  They had medical students round me listening to my double heartbeat, they said they probably wouldn’t hear one again soon. I was on heparin, painkillers and antibiotics.  I went into shock again, my body was in trouble. Eventually, after 10 days in hospital, I was discharged and left to get on with life at home with only 6 months of warfarin, and no check-ups. What was meant to be the happiest and most wonderful time in any woman’s life was blighted and turned upside down, but that was only the beginning.
In 2003, after the sudden death of my only brother, my mum was rushed to hospital with blood clots in her lungs. She was released within 5 days and on blood thinners for 6 months. Less than a year later the same thing happened again and she was admitted with blood clots again.  The doctors then starting asking questions about our family history. When mum was discharged from hospital and a lifer on blood thinners we checked and found death certificates.  We found out that my maternal grandfather and his mother my great grandmother also had died of pulmonary embolisms! At the ages of 61 & 58.
We were sent for genetic testing in 2004 where it came back positive for antithrombin def III and unfortunately, I have passed this down to my son.
In 2009, I was having breathing problems.  By this time, I was diagnosed with asthma and after seeing my GP I was admitted to hospital with numerous blood clots in both lungs.  I had a stroke also.  Now, I was a lifer on blood thinners.
Since then my breathing and stamina has declined.  I have had various problems and recently had tests to see what’s happening.  Some of the clots in my lungs have never absorbed (pulmonary thromboembolic disease) and I have been left with scar tissue (fibrosis).  I have 2 holes in my heart, a irregular heartbeat and the start or pulmonary hypertension due to the strain on my heart due to the clots.
I have problems that probably in time will get progressively worse but I still get up every morning, swallow a handful of drugs and use inhalers. I live life to the fullest and I enjoy my life. I appreciate everything and everyone in it.  I have people that love me, help me, look out for me and most of all I appreciate being able to breathe. We all have problems.  Some of us must live with the consequences but don’t dwell on them. Life is to short and too precious.

I would like to add that in 1997, I was depressed and in a bad place.  By 2003, I withdrew from life and this continued right up to 2009. With the second blood clot, it gave me the wake up call I needed. Why was I playing around and wasting the best days of my life? I decided instead of wallowing in self pity… I now had another fight, rehab, speech therapy, physio and a whole lot of Staying Alive!