I am finally writing this. I think I had to be emotionally ready.
In December of 2016, I had a discectomy. After an hour, I was up walking, in three hours I was home and moving around. I am a long time doula and have counseled countless women about the risk of blood clots, especially after cesarean surgery. One week after my surgery I woke from a nap feeling like I was drowning for air. I texted a friend and said I’m having trouble breathing. My husband was at work. She asked if I was ok and I said” yeah, I’ll monitor it”. My pulse was 130. I got up to put my dogs in their crate and almost passed out. At this point I knew something was serious but I thought maybe I had pneumonia. Against my better judgement, I waited until my husband got home from work, I had been texting him to hurry. His job does not permit phone calls and in my sick state it never occurred to me to call an ambulance! I had a sense of doom by the time he got home and I told him I was dying. Obviously this concerned him and we rushed to the nearest ER. He half carried me in saying she can’t breathe! Immediately they sprang to action. Soon we found out I had multiple massive bilateral pulmonary embolisms with right heart strain. I was in the ICU for five days. At first they debated about going in to get the main large clot but I responded well to Heparin. It was a long road to recovery but in Sept of 2019 I was able to hike the Grand Canyon Rim to Rim with my daughter and best friend. I read a hiking book in the ICU and vowed to go on an adventure when I was well.
I am finally writing this. I think I had to be emotionally ready.
I moved to Albuquerque,New Mexico from Phoenix,Arizona in July of 2015 and have had a hard time breathing since. I have allergies really bad and that makes breathing worse. I got worse when I had mildew growing under my carpet in Arizona. The complex was going to redo the apartment so they didn’t do anything while I was there. They have corporate health care here in New Mexico and I had to wait until December to get an appointment with a pulmonary docotr. I found a primary doctor but she was fresh out of school and didn’t help me much.
Now to take you back to my first clotting episode. My first clot was caused from a laser vein procedure that a nurse practioner did and she couldn’t access the vein so she entered from behind the knee which caused the clot. This was January 24th, 2012. I went back the next day and was in excruciating pain. I saw a sonograoher not a doctor or nurse practioner. She patted me on the arm, said for me to get some Arnicare and I woukd be ok. My leg was huge at this time. They gave me hydrocodone.
On February 14th, 2012, I saw the doctor and he gave me Gabapentin. Never even caring or giving a second thought that my left leg was huge and red. I was on my way to see another doctor when the nurse practioner’s office called and told me to come in. They did an ultrasound and told me “you have a blood clot”. I had to be put on blood thinners. Now I had a chronic blood clot in my left leg. The doctor took no responsibility for doing the damage. I had my INR done every week. It was a nightmare. I was put on blood thinners for six months.
At 10 months , I was still on them. I finally had the discussion of getting off of them and that is when they told me the clot was chronic and would never go away. They kept me on blood thinners for 10 months. Now this is where the allergies come in. I was told I had COPD and asthma. I was given medicine for the allergies,COPD and everything. As I mentiined above, I had mildew under my carpet and developed a horrible cough but no one did anything about it. My ribs were sore from coughing.
In September, I went to the doctor and had an ultra sound on my chronic blood clot but nothing was done about me being short of breath. They just figured it was my COPD or something else. I have muscle cramps regularly so I thought when my right leg was aching it was from a regular cramp. I was very short of breath. I sat in the ER for 9 hrs on November 17th, 2015 because I couldn’t breathe. The drew blood, took a chest x-ray. When I saw the doctor and he said I had bronchitis but didn’t understand why my O2 sats kept going up and down. They gave me a breathing treatment, antibotics and steriods. This is the standard treatment when they don’t know what is wrong. All I could do was sit and pray.
On December 25th, 2015, I got my Christmas present. It was bilateral pulmonary embolisms. I drove myself to the ER because I couldnt breathe. The EMT at the desk looked at me and said come with me. I didn’t go home until the next night. I eventually learned I have Factor V Leiden. I was 65 years when I was told this. I have 2 children and have had several surgeries without complications. My heart is ok but I plan on having it checked again. My O2 sats were 70 when I was at the ER. I am on oxygen and blood thinners for life. I’m on oxygen because of the high altitude in Albuquerque.
My sister that passed away had blood clots in her heart so I think she had the gene. My older sister was tested but doesn’t have it. Her daughters do.
This leg has chronic clot behind knee. My leg never looked like this before.
This is the leg that produced the PE. Yes,I scratch it all the time. I have to move or it swells bad.
I am 67 yrs old now and counting my blessings.
I have PCOS, so I don’t get a normal period. This particular time, I was bleeding for close to 6 months. The last two weeks were the worst. It was more than I had ever seen. I ended up going to the ER because I was starting to have fainting spells. When I got there and told them I was bleeding to death because of my period, they pretty much laughed me off. The doctors ended up doing labs and my Hemoglobin was at 6. They did apologize for not taking me seriously when I first arrived and ended up doing a blood transfusion. I spent two nights in the hospital. My OB prescribed an excessive amount birth control pills to stop the bleeding for which I was instructed to take 3 pills a day for 4 or 5 days. The doctor knew I was smoking and still prescribed these anyways.
A few days later, I went to have a check up and asked him about a charley horse I kept getting in my right calf. He told me to take potassium. He didn’t even look at the leg. I am pretty sure I had a clot in my leg at this point.
A few days later, I couldn’t breathe. I went back to the ER. I was having an awful pain in the dead center of my chest. They took labs, x-ray and a CT. The CT was not clear. They said that they couldn’t see everything in the scan, but they didn’t see any big clots in the areas that they could see. They sent me home, gave me Ativan, told me that I needed to lose some weight and to follow up with my regular doctor for a good plan.
I went to my doctor the next day and I was sobbing. I knew something wasn’t right. Just walking from my living room to my bathroom had me feeling like I ran a marathon. She believed me and because she is an amazing doctor she sent me to a pulmonologist. They put an oxygen monitor on me and had me walk very slowly down a short hallway. My heart rate went up to 130. This was even with me walking at a slow pace like an elderly woman. They sent me to have another CT scan the next day and I indeed had multiple bilateral pulmonary embolisms. I spent a few days in the hospital and was sent home with Xarelto. Unfortunately, I had a reaction to the medication and had to switch to Coumadin.
After six months, I had another CT and was approved to stop taking the blood thinners since I had been tested for all the clotting factors and was fine. I’m three years out, but the anxiety is still there.
Through this experience there were was postitive takeaways. It forced me to quit smoking and lose 70 pounds. I can no longer take any hormonal birth control. I’m happy that I’m still alive and that I had a doctor who believed me.
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
On November 2018, I was 31 weeks pregnant. I have had hypertension for a decade and was warned by my midwife that I was at high risk of developing preeclampsia but this was my second pregnancy so I wasn’t too concerned. I had a normal delivery without any complications with my first child.
On the morning of Monday, November 19th, I went to a routine midwife appointment which showed my blood pressure was very high. My midwife suggested I go to hospital. I arrived at the prenatal clinic and my blood pressure had risen further; I was starting to feel very ill. My body started to fit and the decision was made to be transferred by ambulance to another local hospital which could better support having a preterm baby in the event that he needed to be delivered early. The next couple of days I was monitored and given blood pressure medication around the clock.
On Wednesday, November 21st, I was informed that I had developed preeclampsia and my baby had stopped growing as my placenta was failing. The only option was to have an emergency caesarean section which was performed later that day bringing our healthy son, Theodore, weighing 3lb 4oz into the world.
By the end of the week, I had made a full recovery and with Theodore cared for in the Special Care Baby Unit (SCBU) I was discharged from hospital.
A week later, I started to get searing pain across my abdomen which I put down to the after effects of the caesarean section. Within a day, the pain was so unbearable I could hardly move and couldn’t sleep. The pain had also started to radiate down to my legs. I went to A&E thinking it may be a kidney infection. When I reached the hospital to book myself in, I was in so much pain I could hardly say my name. Bloods were taken and I was told I would need to stay overnight whilst they investigated what was happening to me. The pain continued to increase and overnight my right leg completely swelled and turned purple. The doctor told me this looked like a blood clot and took some bloods to do a D-dimer test which came back positive for Deep Vein Thrombosis (DVT).
The following morning, I was given an ultrasound on my right leg which showed a clot which started in my calf and went up my thigh. A further CT scan showed that the clot had continued to travel and was in my main vein the vena cava stopping just before my lungs. I was visited by various specialists. Each specialist told me that due to the extent of the clot it would almost certainly travel to my lungs or heart and that they would do all they can for me. I couldn’t quite comprehend the gravity of the situation and was in so much pain I think I blocked out the severity of what was happening to me. I had already had a traumatic ordeal developing preeclampsia and having to deliver our son early, only to be told that my life was still in danger.
I spent 11 days in hospital in the worst pain I have ever experienced. By this point both my legs had swollen due to the restriction of the blood flow and my liver and kidneys were showing signs of distress as the clot was blocking the blood flow to them. I could barely stand up let alone walk. I had to get around the hospital including visiting my baby in SCBU by wheelchair.
After discharge, I was at home for eight days but the pain and swelling increased in my legs rendering me completely immobile. I was taken back to hospital by ambulance. This time I had a new consultant who fortunately had a vast knowledge of thrombosis. A CT scan was repeated and showed no change in the size of the clot. The rivaroxaban was not working for me. I was put back on the enoxaparin injections, my legs were also wrapped in compression bandages and I was still wheelchair bound.
I felt completely helpless, it was three days before Christmas and I knew I wouldn’t be spending it at home with my family, the thought of which was unbearable. I pushed through the intense pain I was in. I was determined I wasn’t going to die in this hospital bed at the age of 30 when I have a husband, a six year old and a new-born baby (who was thriving in SCBU). I set myself a goal to learn to walk again and take an extra step each day.
I spent 12 days in hospital this time, missing Christmas and New Years. There was a glimmer of hope starting to emerge, my blood work slowly started to show progress. My kidneys and liver were no longer blocked. My D-Dimer reading was going down showing the clot was starting to dissolve. The swelling in my legs subsided enough that the pain decreased and I was able to be more active. I was able to achieve my goal of being able to walk along the hospital corridor unaided.
After further blood tests, I was discharged with compression stockings and a daily dose of enoxaparin which I needed to self-inject.
This was six months ago and whilst I am still at the early stages of my DVT journey, I have made a vast improvement. My legs still occasionally swell but I can walk unaided. I no longer take painkillers and my blood works are improving with each consultation. My consultant calls me his ‘walking miracle’ as neither he or the other consultants can believe that the clot did not travel to my heart or lungs.
I have seen a hematologist who tested my blood for clotting disorders, these came back negative showing that my clot was provoked by a combination of pregnancy, preeclampsia and my caesarean.
I continue to take daily enoxaparin injections and wear my compression stockings. I am hopeful that the clot will have dissolved enough to continue a normal life, though if it has not then surgery may be an option. I know that there are still challenges along the way but regardless of the physical and emotional impact of blood clots I feel lucky enough to say I am a survivor with a healthy four month old baby. I am grateful for every day that I am alive and can’t stress enough that if you have any symptoms of a blood clot to please go and get checked out. Catching a clot before it travels could save your life.
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 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?
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.
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!
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.