Wednesday, September 06, 2017
Every year this is a challenging time for me...
Unfortunately the summer is ending and my hard earned tan lines will soon fade away...
But VERY EXCITED because it is the season in which Blood Clot Survivors and Family/Friends of Blood Clot Patients get to inspire us all by participating in our various fundraising marathons...
That is right VARIOUS...!
TEAM STOPTHECLOT fundraising has expanded from the New York City Marathon to now also include the MARINE CORPS MARATHON. This is an Outstanding job by the fine folks at The National Blood Clot Alliance! I am so proud of what they have been able to accomplish.
Look Out! The STOPTHECLOT polka-dots could be running along side you...
Without a doubt you will get to see this fine individual at the Marine Corps Marathon coming up in October. Straight out of from her fundraising page (which you can access in the link below...) please read on to find a truly inspiring personal account of overcoming the surprise and challenges of coming doing with a blood clotting incident... Never Ever stop advocating or yourself... It could save your life!
"My name is Nancy and I'm a blood clot survivor.
In April of 2014 I joyfully learned I was pregnant with my 3rd child, after tragically loosing my daughter at birth that previous August. At the time I learned I was pregnant, I was training for a half marathon. The Dr's approved my continuing to run and in May I ran with a nagging calf pain. About a week after the half marathon, I visited my Dr to have my calf looked at, as it had not improved. My Dr asked me the basic questions I had been asked every single time I had gone in with a running injury- did I or my family have a history of blood clots? Had I travelled over 8 hours in the last two days? Satisfied with my "nos" my PCM declared it was just a sprain and to RICE. (Rest, ice, compression, elevation.) I followed his orders to a T, wearing compression socks and enjoying the break from running.
Two weeks later my calf was still not getting better. It was still a "nagging" pain that didn't ever seem to go away. My anxiety got the best of me, and I began to "DR GOOGLE" my symptoms. Every symptom I had pointed to a DVT, or a blood clot. I found www.stoptheclot.org and read story after story of people my age without a family history with similar symptoms being diagnosed. Armed with this information, I went back to my Dr. and insisted on an ultrasound. The Dr called me paranoid to my face, telling me I was over-reacting and my grief from my child-loss was getting the best of me. Still, he relented and ordered an ultrasound.
The first ultrasound was negative. I went home and rested. One week later, the pain still hadn't gone away. I went back in and they ordered another ultrasound. Again it was negative. (More "paranoia" the Dr told me.) They prescribed me Ativan to "help the baby" Another week later, the pain was still there and I was getting "hot spots". The third ultrasound was negative. My PCM, OB both told me to have a glass of wine and drink more water. The stories from stoptheclot.org stayed in my head. I asked the Dr's if it was possible for an ultrasound to miss a clot. "But you have nice veins" one ultrasound tech told me. "It was very VERY rare to miss one," they assured me.
The fourth ultrasound- Friday- this one was different. The tech stayed on one spot for a very long time. A supervisor was called in to double check, and assured me it was nothing.
Sunday- the pain was so bad I was in tears. I decided to go back to urgent care. The DR on call looked at my history and shrugged his shoulders "Why not?" I remember him saying as he ordered the ultrasound.
The fifth ultrasound- the clot was found. I cried openly I was told- vindicated that my gut was right, and scared. I immediately was put on lovenox for treatment. Drs were in such shock that a clot was found (and missed 4 times) that it was reviewed FOUR times within 24 hours by different Drs.
My new hematologist found a genetic mutation- MTHFR that (along with pregnancy and the calf sprain) amounted to the DVT. I safely navigated the rest of my pregnancy and gave birth to a health baby boy in December of 2014.
The road forward has not been easy since my DVT. Diagnosed with post-thrombotic syndrome (PTS) my calf will "ache" without rhyme or reason. My vein where the DVT was, is now damaged, perhaps permanently. The distance running that makes my soul soar is now hard to obtain. I have had many, many, false starts back into running- each time being sidelined by PTS and calf pain that lasts weeks.
I refuse to give up on what I love simply because of my DVT. I am finding ways to run distance- incorporating massage therapy, weight-training, and always, ALWAYS- wearing compression socks. My calf aches daily. Yet, I will not quit.
I am honored to be running the MCM for the organization that helped save my life. Without the stories on stoptheclot.org, I probably wouldn't have pushed as hard for repeated ultrasounds. Regardless what is thrown at me during this training, I will not stop. If I get truly injured, I will find another way to continue to train."
Without a doubt Nancy is Tenacious and she is navigating this journey with the best attitude possible. She will not let blood clots stop her... not even slow her down.
Looking at an update from Nancy's Fundraising Page she is going the distance getting up to 18Miles with about 7 weeks to go before the race. Her confidence is soaring as she is working on her come back!
I can't wait to see her conquering the 26.2Miles in her STOPTHECLOT polka-dots!
Thank you for reading,
The Clot Buster
Monday, July 31, 2017
It does not matter who you are...
Young or old...
Male or Female...
Athletic or Normal...
Soccer Player or Triathlete...
Blood Clots can happen TO ANYONE AT ANYTIME...!!!
You MUST BE AWARE of the signs of symptoms as it can save your life...
Start learning by visiting STOPTHECLOT.org
You will be glad that you did.
You will also be glad to keep on reading... This month's featured blood clot survivor certainly has a story to tell...You don't want want to miss it... so READ ON...
"Eye on the Prize: Maddies Clotting Story
My name is Maddie, and I am a junior neuroscience major and varsity soccer player on the pre medical track at Stonehill College, a small DII school in Massachusetts. Soccer is a huge part of my life, it has always been my escape, my stress reliever and my happy place. I wouldn’t give it up for anything in the world. Soccer season is the time of year where I feel completely content with the sport that I love. However, during the 2016-2017 soccer season I found myself on a journey that changed my life.
The 2016 season was a special one. My team was the underdog of the Northeast 10 conference, and we had the intent to prove everyone wrong this season and to shock the nation. We fought our way through many tough games and constantly pushed ourselves to be the best we could can be; we had each other’s backs and gave it our all out there. We traveled on busses to different states to challenge tough opponents; we kept our eye on the prize, to strive to be champions of our league. I was a sophomore center midfielder at the time, my job involved a lot of running on both offense and defense in order to have my teammate’s back all over the field. Well, in October 2016 I learned how well my teammates had my back too, but this time off the field.
One day when I was walking back from class, I spontaneously developed this terrible pain in the left side of my head. It was easily the worst headache I had ever felt. With playoffs in mind I was a bit hesitant to go to my health center in fear of missing practice, but the pain was enough for me to get it checked out. I explained to my schools health center that I was a student athlete and had a history of migraines and this pain was atypical from any migraine I had ever experienced. They sent me to the local emergency room.
With my knowledge of how serious head injuries can be, I informed the doctors that I was a student athlete on a contact sport team and mentioned the possibility of a head injury and inquired about a concussion. I was surprised when the doctors dismissed my concerns saying I probably did not need a scan and it was probably just a bad migraine. However, I ended up returning back to that ER later that night when the pain, dizziness and vomiting severely worsened. Again I was extremely surprised when the doctors did not think I needed to be scanned, and was slightly insulted when they joked and insisted that my pain could have been alcohol induced. I explained that I was a serious student and dedicated athlete who would not want to miss playoffs for the world; so my coming into the ER twice meant that my pain was very real. They did a cognitive concussion test and asked me about my medical history. I was on oral contraceptives to treat another medical condition, but did not take any other drugs or drank alcohol. They again sent me back to school and said it was just a bad migraine.
The next few days were tough. I thought I was foolish and weak for going to the ER twice with nothing wrong. I tried going back to my normal life, including going to class and even trying to practice. I struggled. The dizziness and pain were bad and I felt extremely fatigued from not eating and drinking much because of nausea. Some of my teammates knew that I was not okay. These special ladies took extremely good care of me; they helped me finish my assignments, brought me food, and even held my hand during tough nights when the pain was particularly bad. A few days after my ER trip, my team had a game in Syracuse, about a four hour bus ride. I went with them. Although I wasn’t strong enough to play I wanted to be there to support them. My teammates continued to support me on this trip as they cared for me when I wasn’t feeling well at the hotel and comforted me when I had trouble on the bus. Two of my teammates agreed that the Monday after we got home from our trip they would drive me to a neurologist. When we got back from our trip that Saturday night, they put me to bed. However that night I woke in the middle of the night screaming with pain. I immediately texted my team and one of my teammates generously came and drove me to the ER. After they finally scanned me, the doctors were amazed to see the abnormality. They diagnosed me with Cerebral Venous Sinus Thrombosis, which was a blood clot extending through four major veins in my brain. They immediately rushed me to the stroke and neurosurgery center of Brigham and Women’s Hospital where I was monitored. My team of doctors were amazed that I did not have a major stroke and suffered no neurological injury.
I was so confused on how a young healthy athlete could have clotting, especially to the severity that I had. The doctors explained that venous clots are actually more common in athletes than people think. For me the clots formed by the combination of being dehydrated, constant blows to the head with a soccer ball, taking oral contraceptives, and being stationary for long periods of time when traveling on the team bus. They said the terrible headache I felt that first day could have been when the clot was just forming, and it grew all that week following when I continued to travel, play, take my medicine, and remained dehydrated. I was shocked that even the doctors at the ER never considered a blood clot, and I was thankful that I advocated for myself and went back that third time even when I was told I was fine.
At Brigham I was treated with blood thinners, to prevent the existing clot from growing, starting with IV Heparin. Then I was bridged to Lovanox shots and began taking Coumadin pills. I stayed at the hospital for a few days. When I was released, the first thing I did was go with my family to my school’s soccer field where I was able to watch my team win their first playoff game. My team’s playoff experience was an amazing distraction for all of the crazy health stuff that was going on in my life. Although I wanted to play, I learned to accept a new team role as someone on the sidelines who was there to cheer and motivate my teammates. My team reached our goal and won our conference as Northeast 10 Champions, advancing to the NCAA tournament. I was lucky to be healthy enough to go with my team to the NCAAs; even though I had to get my blood tested when I was traveling to monitor how my blood was clotting.
Being on blood thinners as a college student was difficult; I went from being a tough and active athlete, to wearing a medical alert bracelet and being extremely careful of even the smallest cuts or bruises in fear of internal bleeding. I felt as if I was a 19 year old trapped in a 95 year old’s body. The months followed included blood tests every few days, frequent doctor’s appointments and scans, and a lot of missed school work to make up. I had a lot going on at the time; I was trying to balance my new medical life with my life as a college student. I struggled with keeping up with the school while dealing with this head trauma. I am thankful however for the Academic Services team at my school for helping me through this time. I am also continually grateful some incredible teammates and friends who drove me around to these doctor appointments and who were there for me and supported me emotionally. By February my clots were almost gone and I was taken off Coumadin and switched to Aspirin as a blood thinner, meaning it was safe to start to do light play without contact. My eye remained on the prize; I wanted to do whatever I could to get back on the field. My neurologist had since also banned me from heavy lifting in fear of putting too much pressure on my blood. Despite these adjustments I was happy to be on the road to recovery and expected no more health surprises.
However, in early 2017, I noticed that I was still having bad throbbing headaches, dizziness and started to notice some hearing abnormalities. I heard a whooshing sound that I found was rhythmic with my heartbeat called pulsatile tinnitus. I thought it was nothing, maybe a side effect from the Aspirin therapy or something. This sound was loud and agonizing; it was the sound of my pulse in my ear all the time. I always relate the maddening feeling to the story “Tell Tale Heart.” When the symptoms worsened, I informed my neurologist and he advised me to get an MRI just to be safe.
A few days later I was taking an exam in my chemistry class at Stonehill when my phone buzzed on my desk and my neurologist’s number popped up. Generously, my professor allowed me to take my doctors call. He told me that my scan was again abnormal, and this time they found something called Dural Arteriovenous Fistulas. These are very rare lesions around the brain that are sometimes linked with blood clots. My neurologist explained that there is a lot about fistulas that are unknown; he said that fistulas are abnormal blood vessel connections between a vein and an artery. My clot was so large and clotted so many veins, that my brain tried to compensate for the loss of blood to those areas by forming channels from my arteries to the veins that needed blood flow. These can be very dangerous and can cause bleeding or stroke in the brain.
There are two possibilities for these lesions: that they could either dissipate or they could grow. Mine unfortunately grew around my brain, and became larger as more abnormal vessels were constantly being recruited. In Boston and New York I met with several of the best neurosurgeons in the country. On May 24,th2017 at NYU Langone Hospital, I had my first embolization, which is an endovascular neurosurgery to close off the abnormal vessels around the left side of my brain. Unfortunately, my surgeon said that my legion grew to be a “monster” and I had to have more treatments done. I had my second surgery on July 7th 2017 to close off more vessels on the left side and to stop the ones that were extending to my right side. There may be more treatments to come, but my neurosurgeon is very supportive on getting me back to my normal life, which also means being able to be active and to play soccer.
The thought of playing again and getting back to the sport I love has definitely given me hope and motivated me. It has truly helped me stay focused on my recovery. This road to recovery has been very long and challenging but I am beyond thankful for my family and friends who have supported me through this entire experience. I am grateful for Stonehill College’s Athletic Department, Health Services and Academic Services, which have all helped me adjust to each new obstacle. A big thank you to those teammates and friends in particular who made this year so much easier for me; you’ve held my hand through pain and tough news, came to doctors appointments and emergency room visits, and comforted me after surgery; I don’t know where I would be without your love and support.
Although it has been beyond challenging to sit out and not be able to play the sport that I love, I am working hard to reach my goal of being able to play next season. My team of doctors at NYU are extremely supportive and understand that part of getting me back to my normal life includes being an athlete. I am so excited to say that my neurosurgeon has finally cleared me to play for the fall 2017 season. There is still a lot of recovering to do, and a lot of training adjustments to be made before next season. It is going to be challenging, with more obstacles to come, but I am determined to train hard and put in the work so I can step on that field as soon as I can.
I am grateful for Team Stop the Clot and the National Blood Clot Alliance for constantly sharing survivor stories of athletes and inspiring other athletes like me to work hard to get back to the sports we love. Blood clots can happen to anyone of any age and any activity level, it is important to ask your doctor about your own risks for dangerous clotting, and to be informed on the ways to maintain a healthy life style. For athletes, things that can make our blood more likely to clot are dehydration, remaining stationary on long bus rides, and hormonal medications like oral contraceptives. The most common places for Deep Vein Thrombosis (blood clots) are in the legs and in the lungs, but can also be found in the arms or in the brain. Time is a big factor in treating clots as larger clots can sometimes come with more dangerous and life threatening complications like mine did. Every clotting experience is different so it is important to be well informed.
I have faced many obstacles this year, but am extremely grateful for the blessings as well. Both Dural Fistulas and Blood Clots in the Brain can be extremely dangerous and they often result in stroke, bleeding, and neurological damage; I was very lucky not to have experienced these side effects. There have been a lot of questions by doctors in both Boston and New York about if I would ever be able to play collegiate soccer again, or any contact sport for that matter, but like my soccer team last season, I am determined to prove everyone wrong and to shock the nation. This experience has taught me a lot, but most importantly it has reminded me of the key lessons that we are all taught as young athletes; to always listen to your body and to self-advocate, to appreciate and reciprocate the support of your teammates, to work hard and stay positive, to always keep your eye on the prize, and to never ever give up."
You cannot help but to wish Maddie the best of luck in her recovery and return to the sport she loves...She will be back BETTER THAN EVER!
Blood Clot Survivors CAN DO ANYTHING!
Thank you for reading,
The Clot Buster
Friday, July 07, 2017
Since we are now in the middle of summer it is time to go big...
Big in Outdoor Fun...
Big in Training... Personally looking to improve on my result from Ironman 70.3 Wisconsin at the Ironman 70.3 Ohio...
Big in Playing with my boys...
Big in Spreading Awareness about Blood Clots and Blood Clotting Disorders by getting CLOT BUSTER #StopTheClot polka-dots shipped around the world...
Big in the feature of this month's athlete of the month...
It does not get any bigger than an Olympic Athlete...
Please read on and learn about KATIE HOFF's experience with blood clots as published on link below through STOPTHECLOT.org
Blood Clots can happen to anyone... even Olympic caliber athletes... It will always blow my mind...
Be on the lookout for CLOT BUSTER #StopTheClot polka-dots around you.. 2017 is shaping to be a record year for sales of polka-dot gear and I could not be more excited. People out there PROUDLY wearing their polka-dots to celebrate that THEY ARE SURVIVORS or perhaps simply wearing the polka-dots to celebrate someone they know who is a survivor which in turns helps us spread awareness.
If you want your very own please go ahead an order through this blog and I will personally will process your order but I will not lick your envelope closed... I have industrial tape for that.
Thank you for reading,
The Clot Buster