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

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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: 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 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 Leslie Ponciano

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

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

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

Survivor Spotlight: Sarah Louise Carter

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My story

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

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

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

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

Survivor Spotlight: Jamie Kreger

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

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

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

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

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

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Survivor Spotlight: April Ikard

 

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

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

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

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

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

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

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

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

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

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

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

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

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

Thanks Lisa. Love you hun!!

 

Survivor Spotlight: Tanya Schwarz Turner (Moderator on our SaSk Weight Warriors Group)

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

Survivor Spotlight: Debra Lynn Kleid

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My blood clot was 05/21/2015 where it effected my entire left leg , my abdomen and my lungs.

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I woke up one morning with heaviness in my leg and shortness of breath. My heart rate was high in the 150’s but my oxygenation was ok. I went to the hospital where I was placed on Coumadin and Lovenox. After several days they contacted Vascular Surgery to do a Thrombolysis with angioplasty which would take 2 days to do. That was a painful procedure as my leg was completely clotted off or the veins collapsed and they didn’t do enough sedation. I spent 8 days in the hospital with 2 days in ICU. I survived and lived to tell the tale and want to spread awareness to others!

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I’ve been through hell and back and if I could help someone I would love to.