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Wednesday, October 14, 2020

October Athlete of the Month

Are you ready to participate in the #STOPTHECLOT Virtual 5k? 

My CLOT BUSTER #StopTheClot polka-dots have been ready and are INSPIRED all around because Blood Clot Survivor CAN DO ANYTHING!

Join us virtually to run, walk, jog or even cycle to support NBCA. Participate from any location at any level of athletic ability. Run your own race at your own pace and time it yourself. Register here: https://bit.ly/3io2qWg #stoptheclot

It has been a super busy and exciting month becuase of the preparations needed for the Virtual 5K.  The CLOT BUSTER #StopTheClot polka-dot goods are selling out and we are shipping ALL OVER THE COUNTRY.  Very excited to see all the places where the polka-dots will be out and about so that we can CELEBRATE all Blood Clot Survivors as well REMEMBER all those we lost along the way.  Blood Clots can indeed happen to anyone but being to reover in whatever way your body allows you too is what inspires me everyday.

Speaking of inspiration... October's Athlete of the month has a truly inspiting story.  I am very excited to be able to share this story with all of you.  Donna has been very gracious in sharing her story with us and I can't say anything else other than Read On!

"I was on top of the world. I just finished my third Leadville 100 mile race in August when my life was turned upside down. It started with a nagging pain in my forearm that just would not go away. I was in top shape, but the week after the race I still did not feel quite right. I had had some minimal swelling in my arms and hands during the race, which was nothing too abnormal for me; I thought it was due to hydration. I thought my continued labored breathing was just exhaustion from a hard season of ultra-running. It never dawned on me that I could be so active and have something be seriously wrong.

I have always been active and athletic. At 45, I am a dedicated long-distance runner. I have run more than thirty ultra-marathons and they have taught me to pay attention to my body. This time I could not put my finger on it, but I just didn’t feel well. I was exhausted, having trouble breathing, and struggling with pain and the use of my arms. I was having trouble breathing on my morning 7 mile runs and even when driving over mountain passes near my home in Colorado. I went to the doctor, explained my symptoms, and asked for blood work and a referral to an orthopedic specialist for my arm pain. She diagnosed my arm pain as tennis elbow. When the blood work came back normal, she thought I just needed a break from running.

However, things kept getting worse. I was now having trouble using my left hand at all, and my strength was going. I blew it off as tennis elbow and thought maybe I was just getting old. I kept saying it just needed time, so I headed off to another 100 mile run and then another. I never felt quite right and kept consulting with my doctors, but they could not identify a problem and just kept treating me for tennis elbow and exhaustion.

I finished the Across the Year 100-mile race in January and felt awful. During that race, my arms swelled to twice their normal size and could not fit into my gloves. My breathing was much more labored than usual. It was a hard race for me, but I thought, “Well, sometimes races are hard.” As the days went on after that race, though, I felt like a truck had hit me. This pushed me to once again to contact my doctor and insist on more tests. I explained that even though I was still running 50-70 miles a week, I did not feel right and it was getting worse. We discussed my arm swelling once again. They were stumped because I had it in both arms, and now the swelling was rearing its head on the shortest of runs. The trouble breathing was also catching up with me.

On an 8 mile walk, friends saw my hands and said that it was much worse than they had imagined. They insisted I go to the emergency room. I again called my doctor. Six months after the original appointment, and despite monthly appointments and contact, she had no new input.

I went to the emergency room. Both my d-dimer and chest x-ray came back normal, so they were just going to send me home. Luckily for me, however, I come from a family of physicians, and I called for their thoughts. My sister-in-law knew that I had not been doing my normal activities, even though I was doing more than 90% of the average person’s activity level. She said she thought I might have Thoracic Outlet Syndrome. She told me that it’s rare and often the blood clots are in your arms and chest.  She recommended that I demand an ultrasound to check for DVTs and a CT scan for other clots.

I brought my concern to the doctors in the emergency room. They thought it was extremely unlikely. They were not happy to be questioned and thought it was unnecessary, but I refused to leave until they did an ultrasound. They finally sent me back to get one.

(The reason I share this part of the story is that if you don’t feel right and you are in tune with your body, you may need to fight for the care you need. Be persistent. Don’t stop until you get answers. You know your body and what is right for it.)

As soon as the ultrasound tech started, I knew I was not going home that day.  It took a long time. She was measuring and taking photos of numerous clots. Some had fibrosed down and had caused permanent damage to my vascular system. They had obviously been there for a long time.

That day my life changed dramatically. I started treatment for the clots. I was diagnosed with Vascular and Neurogenic Thoracic Outlet Syndrome and referred to a vascular surgeon.

Vascular Thoracic outlet syndrome (VTOS) is categorized as disorders of the upper extremity, which are caused by compression of the brachial plexus and subclavian artery or vein by bony, soft tissue or muscular anomalies as they emerge from the thoracic outlet.  Vascular TOS usually occurs in young patients and athletes who are involved in repetitive overhead motion, such as swimming or baseball. 

Symptoms

Symptoms in the upper extremity are a result of thromboembolization (clot formation & dislodgement of the clot), and include arm fatigue, distal ischemia (lack of blood supply) of part of the hand in more than 50% of cases, Raynaud's phenomenon, or stroke. 

A bony abnormality causes trauma to the subclavian artery from compression that occurs with arm movement, especially repetitive overhead activities.” University of California San Francisco

 In the past year, I have had several procedures on my vascular system to break up the clots. I had major surgery to relieve the pressure on my vascular system to prevent further clots. For weeks I could not use my hands and needed my family and friends to do most everything for me. It was very hard for me to depend on other people for even the simplest things, since I have always been fiercely independent.

My journey is not over yet, and my arms are not fully recovered due to permanent fibrous scarring in the veins. I am an art teacher and artist, so the use of my arms and hands is a critical part of my every day life.  I am fighting to get back out there to run and enjoy the great outdoors. I need to reclaim all the parts of my life that bring me joy and peace.

I don’t know that if I had heard of other extreme athletes getting clots, I might have recognized my symptoms. After all, my doctors did not, and the emergency room was ready to send me home.  After all the appointments and research, though, I know now that what I was experiencing are classic VTOS symptoms. I am incredibly lucky that a clot never dislodged and caused further damage or even death. My biggest message here is to listen to your body and fight for your care. My road to recovery has been long and full of up and downs, just like a 100-mile race.  I just keep moving forward, listening to my body, so I can live the life I was meant to-- climbing mountains and running through the trails in Colorado.

To keep my spirits up after surgery and help my recovery, I recently power-walked 200 miles to complete the Destination Trail 200-mile challenge with my boyfriend. This summer, even in the midst of COVID, I was able to get back out and run a marathon that reaches 13,191 feet of elevation. To make it even more poignant, I summited the pass with a fellow blood clot survivor. I also completed the Leadville 100,000 vertical foot challenge in 8 weeks over the summer. I attempted a 50-miler, but my arm swelling is still an issue. I had to take frequent breaks, but even with that I completed 38 miles and 4,000 feet of gain that day with the help of some amazing friends.

Although my life has changed, I am now part of an amazing community of survivors. I know that my story may be able to help others. I am adapting to my new circumstances, and I will be back on the Leadville 100 trail and other ultra-races courses sharing the story that Blood Clot Survivors can and will do ANYTHING their hearts desire. So, get back out there and follow your dreams!"

Proud Mom with daugther on top of Mt. Belford @ 14,203 ft.

No question that Donna will indeed get out there again and conquer those ultra-marathon trails one step at the time.  It is so important that you advocate for yourself if things don't feel right.  In this case Donna's persistence saved her life and it can save yours as well.  The road to full recovery is unique for everyone and you must travel it with patience and determination.  NEVER STOP GOING FORWARD even if at times you have to take a step back.

Thanks you for reading.

The Clot Buster  

Friday, September 11, 2020

September Athlete of the Month

September...

Really September...?

How are we doing?

Are we still having all of the emotions below all at once...?

FEAR
ANGER
FRUSTRATION
ANXIETY
INSPIRATION
REFLECTION
CAUTION
AWARENESS
SADNESS
EMPATHY
LOVE
OPPORTUNITY

It has bee a rollercoaster of a journey day after day so far and for sure I am experience all of the emotions listed above.

But we are overcoming all of the challenges and that should make us proud.  Getting through each day is an accomplishement simple because there is a lot going on.

Not only we are overcoming but also blossoming.  NBCA (STOPTHECLOT.org) sure is on that trajectory as we begin preparation for our first VIRTUAL 5K to STOPTHECLOT.  

Very excited about being able to participate in this event while sporting the CLOT BUSTER #StopTheClot polka-dots.  

Join us virtually to run, walk, jog or even cycle to support NBCA. Participate from any location at any level of athletic ability. Run your own race at your own pace and time it yourself. Register here: https://bit.ly/3io2qWg #stoptheclot


BLOOD CLOT SURVIVORS CAN DO ANYTHING

And because blood clot survivors can do anything here is another story of a blood clots survivor that for sure will INSPIRE YOU.

Matt's story comes to us through NBCA's websiste... Please read on and learn from Matt's experience with blood clots as I am certain that you will find it very interesting.

https://www.stoptheclot.org/patient-stories/not-easy-matts-story/

It is definitely possible to get back to normal... or almost normal after your clotting incident.  Being aware of your body and giving it time is by far the best strategy for your body and mind to heal.

Keep it up and never give up.

Thanks for reading,

The Clot Buster

Monday, August 10, 2020

August Athlete of the Month

Let's take a trip out West.

Let's go to Colorado.

I miss the mountains.  I am a big fan of mountains and during my time in Colorado I enjoyed every second of the beauty of that place.  It is truly one of a kind and I am very lucky to have had the chance to be out there playing the mountains.  Someday I will be back for a long stretch to get back on the trails and head up.

We are also very lucky this month because get the opportunity to meet a blood clot survivor who lives and plays all around the mountains. 

Dan has been kind enough to share his story of survival with us and for that we are very thankful. Every single story is unique and provides a perspective that can make a difference for someone who is starting their very own survival story.

For sure read this story because it is well worth it!

Read on...

What is you sport/activity of choice? Why do you enjoy it? 

Bike riding is my preference.  I used to road ride and mountain bike, but doing less mountain biking and more gravel riding.  My doctor said maybe mountain biking is not a good choice at this time while being on blood thinners, anyway.  My wife and I like to hike and fish as well.


What is the latest milestone you achieved or plan to achieve?

I am just a weekend warrior, but every year I enjoyed riding charity events for different causes like 65 miles for Cystic Fibrosis and the only century I would do each year for Craig Hospital, which treats spinal and brain injuries.  My wife and I like to take vacations up in the mountains of Colorado and neighboring states 2 to 3 times a year, and each vacation I usually plan a bike ride that will take me up some mountain pass or across some gorgeous scenery, and that usually motivates me to ride a bit more before.


Tells about your clotting episode.  Are you on blood thinners now? How long were you out of commission? 

I had arthroscopic microfracture knee surgery in late December 2017, which meant no weight bearing for 8 weeks.  About 3 weeks after the surgery I had what felt like a cramp in my right calf.  I thought it was just the way I had been holding my leg while on crutches, and tried to massage out the cramp.  The next night the same thing, so my wife suggested contacting my brother, who is a PA for an orthopedic surgeon, and he said I need to get in asap for an ultrasound and said to “STOP rubbing it!”  I did an ultrasound at a lab in the hospital, and afterward, the tech that did it said to go take a seat I was not going anywhere.  I spoke with the doctor who did my knee surgery and he said it was rare to get a blood clot with the type of surgery I had.   Rare or not, I ended up walking the 100 feet to the ER and checked in.  The ER Dr asked what was up, and when I said a blood clot, she replied “I had not just a blood clot, but a good clot from below my calf to mid-thigh.”  They gave me a prescription for Eliquis and set me home.  I think it is a bit odd that you go to the ER, they worry about the clot and the implications, but in the end hand you a piece of paper and say go get the prescription filled.  Six weeks later I had another ultrasound and the clot was gone and I was off the Eliquis.  I couldn’t do much running on my knee, but biking was no problem. 

Things were fine until around Memorial Day this year, which was just over 2 years since my first blood clot.  March and April I was getting out with my wife and trying to do a lot of walking , and then in April and May I was riding a lot, 3 to 4 times per week.  In the between those bouts of exercise I do sit at a desk for my work, and am not sure if that is the problem, but around Memorial Day I noticed my right leg seemed a bit bigger than the left. I wasn’t too concerned, at the time, thinking maybe the heat and biking had just caused some swelling.  In hind sight I might have had some minor calf aches and pain behind the knee, but chalked them up to running or something else. I just didn’t imagine another blood clot.  If I was going to get a clot it should have been back in January and February when I wasn’t doing anything.  After a couple weeks I spoke with my brother again, and the same scenario took place.  Went for an ultrasound in the lab at the hospital, this time the tech said she couldn’t collapse the vein, and then I did the 100 foot walk down to the same ER as before where they gave me another prescription for Eliquis.  When I saw my PCP the following week he referred me to a hematologist and said maybe I would be on blood thinners the rest of my life.  I thought he was crazy and that the hematologist would surely not recommend something like that.  My dad was on blood thinners starting around age 89 until he passed away 4 years later, but he was 89 and basically in a wheel chair when he started them.  I was 58 and somewhat active.  The hematologist did every test imaginable, and in the end said there was no genetic link, or any other reason I should have blood clots, AND he said I would be on blood thinners the rest of my life.  In baseball you get 3 strikes, but he said with blood clots you only get two, especially when one is unprovoked as my second one was.  I was shocked, and while there can be side effects from blood thinners, they don’t seem to be on the same par as some of those on tv commercials that have a huge list of side effects.  My doctor basically said to be careful, especially with anything that might cause head trauma.  If I were to mountain bike it would be on non technical trails, but other than that, nothing has really changed as far as my activities go.  My potential MMA cage fighting career probably wasn’t going to happen anyway!

How much are you getting out doing your sport?  

I try and ride my bike 3-4 times per week.  I do try and take some walk breaks during the day as well, and maybe can get back to doing some running, which has been on hiatus due to some chronic calf strains, not blood clots.

What is your favorite food?  

After a hot ride there is nothing I like more than eating some cold watermelon or cantaloupe.  The melons grown in southeast Colorado are especially flavorful due to the hot days and cool nights and when they come to market in August they are hard to beat.

What would like to say to someone who is going through a clotting episode, perhaps very similar to yours?  How can people return to do what they enjoy ?

I read others stories and mine is pretty mundane in comparison.  My clots were limited basically to leg swelling and cramps, nothing that prevented me from getting out and exercising.  Sometimes it’s difficult for me to understand why I got the clots as I didn’t do anything that millions of people every day don’t do.  I sat at my desk, maybe sometimes for too long, but it wasn’t like I was on an 8 hour plane ride.  Maybe if I had set the timer to go off every 2 hours and got up and walked things would be different, but for whatever reason I just think I was prone to get them.  Fortunately, as I said earlier, the drugs seem so much safer with fewer side effects than a lot of others on the market.  My doctor’s main concern is the head and taking a hit on it. He said we can replace other parts, but not the head.  I have not ridden a bike in 30 years without a helmet, and I wouldn’t ride across the street without one even before this.  My helmets have MIPS, but if they didn’t I would buy new ones that did just for my own piece of mind.  I figure every bit helps.  When I do the Cystic Fibrosis ride and the ride to help patients at Craig Hospital with their brain or spinal injury, I realize what I have gone through is not nearly as debilitating as what others endure every day. 

Unfortunately I have to agree with Dan that his MMA career will have to take a back seat... but his career in adventures is far from over.  I very much enjoy the resolution that I feel on this write up where this incident will not be stopping him.

If you are out West in Colorado be on the lookout for the CLOT BUSTER #StopTheClot polka-dots since it could be Dan who is out there representing for all of us.

Thank you reading and be safe out there!

The Clot Buster

My 100th Triathlon Finish !!!

My 100th Triathlon Finish !!!
#100 TRIATHLONS