April Athlete of the Month

Wow... It has been an eventful couple of last weeks... I am glad those are behind me.

Something you may learn about me is that I HATE HOSPITALS... I've been very fortunate to stay away from them and only go when absolutely necessary... like the birth of my 3 boys or emergencies with my kids... But having 3 boys I am afraid that the emergency kind of visits maybe more frequent... I HOPE that they are not but I sense that because they are boys this is inevitable... Wish me luck down the road...Yikes!

But since WE ARE ALL VERY LUCKY to see the sunrise every morning we have arrived to April 2017...

And because it is a new month WE ARE AGAIN VERY LUCKY to have found a willing Blood Clot Survivor who has been kind enough to share her story of overcoming the challenges of blood clots with all of us.  

As we are heading into the beauty of spring please allow me introduce to you our April Athlete of the Month - ELIZABETH DiNOVIS.  Without a doubt her personal account of her clotting incident and her determination to overcome the challenges of clotting will inspire you to battle just like she is as she is getting ready to throw down with her first 5K Run since her diagnosis... It has been a long road to travel but Elizabeth is ready to take it on in her very own CLOT BUSTER #StopTheClot polka-dots...!

Read on...

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

I have always loved running because it feels so freeing and is such a great stress reliever.  The fact that you can really track your progress and are able to run just about anywhere is a great bonus! I also appreciate that it can be both an individual and team sport.

2) How did you get started in that sport?

 I ran cross country and track in high school. 

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

I am running my first 5k since my blood clot diagnosis in 2010 on April 15^th! 

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

In February 2010, while living abroad in Ecuador, I woke up to my left leg being so swollen that it was hard as a rock and felt like a dead limb.  I could not even lift my leg.  I was hospitalized that morning and diagnosed with deep vein thrombosis.  In retrospect, I began to have symptoms 3 or 4 days beforehand, and had even been given an anti-inflammatory shot earlier in the week as the doctor thought my symptoms were related to the sciatic nerve that had been bothering me for a few months. 

Initially manifesting as an ache in my groin and progressing to me having trouble walking up steps, my symptoms continued and the night before I was hospitalized my calf began to swell.  I was an active 23-year-old, so I also originally thought that it might be a pulled groin muscle or the effects of a running workout I had completed recently.  I was not familiar with the symptoms associated with a blood clot and that was not anywhere on my radar.  After a week in the hospital, I was sent home but I was not able to stand on my leg and it took almost 2 months for me to be able to regain my mobility.  I was taking coumadin, and about a month after my hospitalization noticed that my fingers were bruising.  The lab work initially came back incorrectly and it turned out that I was severely over anticoagulated.  I was immediately admitted to the hospital where I was given fresh frozen plasma in order to regulate my bloodwork and to avoid any risks of internal bleeding.  The entire experience was physically and mentally exhausting.  I stayed on coumadin for 8 months initially.

After moving back to the United States in 2011, I was diagnosed with May-Thurner syndrome, which is when the right iliac artery compresses the left iliac vein, and had two stents placed in my iliac vein to help keep it open.  While this was a step in the right direction and relieved some of the extreme swelling and discomfort I was still experiencing, it did not fully alleviate the issue by any means.  I wore full pantyhose compression stocking daily and was unable to run for more than a few minutes at a time.  After the stent placement, I took warfarin for 1 year and then was taken off the medication and switched to a daily aspirin. 

In 2013, my stents occluded due to new blood clots and I began taking warfarin again.  The vascular surgeon I saw after the occlusion did not want to touch the clot because he was afraid of causing a pulmonary embolism and we weren’t sure exactly at what point it had formed over the last year.  In 2015, I tried a procedure at another hospital where they placed a temporary IVC filter and attempted to open up the blocked stents.  They were unable to push through the clot and scar tissue.  I was SO disappointed.  A few months later I found an interventional radiologist who had access to a PowerWire which uses radiofrequency to recanalize vein occlusions.  So cool! AND IT WORKED!  He was also able to place 2 mores stents.  Before the procedure, he had also added Plavix and aspirin to my warfarin regimen.  However, at a follow up appointment it seemed that my body was resistant to the Plavix and there was already narrowing of the stents.  I was immediately switched to Effient, a different antiplatelet, and scheduled for another angioplasty and stent placement.  I now have 6 stents in my left leg and continue to have angioplasties due to restenosis.  I still take warfarin, aspirin and Effient daily.

To sum it up: Unfortunately, the blood clot in my groin has affected my entire left leg and did not resolve, leaving me not only with physical pain and discomfort such as swelling, heaviness and varicose veins, (a chronic condition known as post-thrombotic syndrome), but also emotionally exhausted as I tried to adjust to this new reality and reduced quality of life.  Since then I've been through 7 years of ultrasounds, CT scans, venograms and MRIs; more doctor appointments, blood draws, medications and tears than I can possibly count; 6 stents, 5 procedures, 1 temporary IVC filter; and a diagnosis of May-Thurner syndrome.  I'm still waiting for drug eluting balloons applicable to the femoral vein to hit the market which I'm hoping will continue to improve my condition.  There are definitely more procedures in my future, but I'm SO grateful to have progressed to this point!

5) When were you able to get back into your activity?  How did it feel that first time?   

I went on a few runs in 2015 after the 6^th stent was placed and it felt so good to get out there and sweat!  However, it really wasn’t until a few months ago that I seriously began considering running a 5k.  Now it feels amazing to build up endurance and gain a little (very little! haha) bit of speed.  I’m hoping to keep training and really improve following this first 5k next weekend.

6)  What is your favorite piece of gear for your favorite activity? 

I have always loved Asics running shoes 😊  I also wear compression stocking when I run which truly help!

7)  How much are you getting out doing your sport? 

Right now, I am in graduate school so I am trying to run 3 days a week.

8)   What is your favorite food?  Either generally or after a workout. 

I actually really love grilled vegetables or a roasted red pepper and garlic pizza!

9)  If you could go some place to visit and explore, where would you like to go? 

I would love to visit somewhere in Asia one day. 

10)  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? Tells about your concerns and what you look out after as you got back.

 I think it is incredibly important to be your own advocate and to keep searching until you find a doctor willing to work with you in your recovery.  I have been to many, many doctors and it has been a process to find the right fit.  Educating myself about my condition and staying up-to-date on the latest innovations in the field helped me to better understand my diagnosis and the possibilities for improving it.  I also found a great deal of comfort in reading about other people’s experiences via the National Blood Clot Alliance’s website and connecting with other people who have experienced blood clots at their Stop The Clot events or via online platforms and support groups for survivors of venous thromboembolism.  I had a lot of anxiety and panic attacks for quite a long time due to my fear of another blood clot diagnosis.  Once the second diagnosis happened I think it was my worst fear being realized, so from there it was about climbing out of that place and trying to take as much control over my situation as I could.  I’m also a big advocate of counseling to provide an outlet to express the emotional toll that a blood clot diagnosis takes on patients and their families.  Managing a chronic condition is difficult and it’s important to get yourself the support you need! I also LOVE using an aqua jogger which helped me to run in the pool while I was unable to run on land. (Shout out to my mom for that one!)

THANK YOU SO MUCH Elizabeth for sharing your story!

I can't wait to see pictures of you rocking and finishing that 5K this coming weekend while you wear the CLOT BUSTER #StopTheClot polka-dots... Wear them proudly because you have earned them!

Next Saturday ENJOY THE SWEET PAIN OF YOUR ACCOMPLISHMENT because it is just the beginning of your comeback!

Thank you for reading,

The Clot Buster

March Athlete of the Month

March is BLOOD CLOT AWARENESS MONTH

Don't miss the opportunity to learn and be educated about blood clots - Your Risks + The Signs & Symptoms + Preventive Measures.

You can start learning at STOPTHECLOT.org

But learning about this silent killer can also be done by reading personal experiences from Clot Survivors.  There is a great deal of inspiration that we can all draw from when learning how others managed or are currently managing the struggles of being told the blood clot diagnosis...

You have to admire the determination and dedication of survivors in order to overcome the challenges.

One of those people currently managing this very issue of being a Survivor is an individual that has some serious running speed and can take the CLOT BUSTER Team #StopTheClot polka-dots flying any given day... It is hard to imagine knowing some of his background but DAVID PINSONNEAULT (@dcpinsonn) has a story to share from which all of us can learn something... The text below David was willing to share with us is from his very own blog... http://dcpinsonn.blogspot.com/ 

THANK YOU David for sharing!

"the doctor said I have blood clots...

It's been a while since I have written a post. 2016 was supposed to be my year. For the first 10 months, it was. Work was going great. I was adjusting well to my new Oregon home. I was logging some of the best miles of my young life.

I closed out 2015 with a 1:17:50 PR in the half marathon in late November. I trained all winter and ran the NYC half marathon two seconds faster (1:17:48) in March, 2016. The result was solid but a little disappointing. Workouts were indicating that I was closer to 1:15-16 shape. I then set my sights on the Eugene Marathon. For whatever reason, this race did not go well. I ran 2:59 but my 2:47 PR from fall, 2013 is much faster and I was in much better shape heading into Eugene. I accepted this race and figured I would get my chance in the fall. I trained hard all summer and ran PRs in the 1500 (4:27 = 4:47 mile or so) and the 10k 35:32. The 10k was a little weak and was run on a warm day on a hilly course. I then started to attack marathon training for the Twin Cities Marathon. Here is a little sampling of the training:

8/17- 3.5 @ 5:54, 2.5 @ 5:42, 1.5 @ 5:30

8/21- 18 w./ 12 @ 6:01 pace

8/28- 19 @ 6:31 average w./ a 4 mile push from 13-17 in 5:55, 6:02, 6:05, 5:57

9/3- 21- 2 mile warmup, 4 mile tempo @ 5:55 pace, 9 miles easy, 4 mile tempo @ 6:05 pace, 2 mile cooldown

9/7- 4,3,2,1 x mile(s)- 4 miles 23:39- 5:56, 5:57, 5:55, 5:51 (4:00 rest), 3 miles 17:28- 5:48, 5:52, 5:47 (3:00 rest), 2 miles 11:29- 5:44, 5:45 (2:00 rest), 1 mile 5:36

9/11- 24 @ 6:44 average w./ a 4 mile push from 17-21 in 5:53, 5:57, 5:53, 5:45

9/18- 18.5 total miles w./ Albany Half Marathon as a marathon simulator run in 1:18:52 (6:01 pace)- rainy/muggy day, 1st AG

9/28- 4 x 3200m- 11:25- 5:44, 5:41 (2:11), 11:24- 5:44, 5:40 (2:10), 11:23- 5:45, 5:38 (2:09), 11:06- 5:39, 5:27

In short, I was in the best shape of my life and was ready to run under-2:40. I flew to Minneapolis and crashed with a good friend. On Saturday morning, the day before the race, I woke up with my calf cramping. This was not good but I had worked too hard to let something like this stop me from competing. On Sunday morning, it was cold (low-30s) but I like that for running. I had to, however, wait for a decently long time before starting my warmup. It could be that my body never got fully warmed up and that the lingering calf cramp played a role but the 6:00-flat pace I ran for 13.1 on tired legs 3 weeks ago felt much too fast. By 10k into the race, my legs felt like they were cramping. I tried to settle in with a group hitting 6:10/mile but I fell off it a little after 11 miles and went through the half in 1:22-mid. I was perplexed. I'm not a quitter so I just kept going even though my body was protesting with another half to go. At 22ish, my right calf cramped so bad I had to stop and walk for about 10:00. I started running once I could and crossed the line in 3:00:23. I didn't even break 3 when 6:00 pace was feeling pretty comfortable in training.

In the couple weeks after the race (which was on 10/9), I started to log some miles, determined to get in a good marathon in 2016. I signed up for the California International Marathon. It is always the first weekend in December and is a point to point, net downhill course. The drop a couple hundred feet so it is not as downhill as other courses can be. It still counts, for example, for US Olympic Marathon Qualifying. I got back into workouts and hit a particularly good long run (10/30 22.3 total miles 2:26:55 (6:35 pace overall): 5 x (2 miles easy, 2 miles @ MP)- 14:31/12:09- 6:09, 6:00, 14:10/12:00- 5:58, 6:02, 13:53/11:55- 5:58, 5:57, 14:07/11:57- 5:59, 5:58, 14:05/12:01- 6:02, 5:59, 2.3 mile cooldown 16:05 (10 miles easy 1:10:45 (7:04 pace), 10 miles @ MP 1:00:02 (6:00 pace), 2.3 mile cooldown 16:05)) but my legs were cramping during the whole thing which was very weird and made things significantly tougher. What was going on?

The next night I woke up in the middle of the night to some pretty intense chest pain/pain in my lung. I went for my run that morning and to work. There was pain when I took a deep breath during the day. I woke up again in the night for the second time. I repeated the process and went for a run and to work. I then woke up for the third straight night and was sensing something was wrong. I did a workout on 11/2- 3 x 4 miles in 24:35, 23:57, 23:39- and then went to the hospital. The doctors did not seem overly concerned. My vitals looked normal. They were just going to do a CT Scan of my lung/chest just to make sure that everything looked good. A new doctor came into the room after the scan and told me that I would be staying the night. I had a blood clot in my right lung.

I don't think I was able to process this news in the moment. I'm 24. My health has always been good. I had never taken any sort of medication. My routine for the last 6 years had been to go for a morning run and then take on the day. I was given a series of shots and told that I was to be on blood thinners for the next six months but possibly longer. I was told not to run and to take things easy. I was told that I would not be running a marathon next month. 

I started to run again after taking two weeks off. My PCP said a few miles a day would be fine. I was starting to feel more like myself after the first month since finding the clot. The doctor had told me that I had to be careful because the clot could, at any time, detach and move to my heart or brain which could cause some serious medical problems (heart attack, stroke, etc.). The day before Thanksgiving, I was picking up a pie at a local bakery and everything went from being good to not so good in a matter of seconds. I felt dizzy, my heart started to race, my body was shaking. I did not feel in control. My partner was with me and she immediately drove me to the ER. After being there for 6 hours or so, everything was just fine. Things were better than fine. All of the blood testing was normal and we did another scan to see if the clot was getting bigger but the clot had actually fully dissolved. The problem was that I just did not feel well. I stopped running for a month and went back to the hospital once more feeling the same way. I checked out again. It was starting to sink in that I was having panic attacks. I was feeling anxious 24/7. I was not running. It was difficult to work.

When the calendar year switched to 2017, I was relieved to leave 2016 behind. I started 2016 feeling like anything was possible and closed out the year scared to live my life. Over the last few weeks I have got back to running. Work has gotten much better. The anxiety is still there and that is the biggest thing holding me back right now. I am fearful of developing another clot. I am fearful that if I feel a twinge in my chest that the worst is about to happen. There are days where I am unsure if I will ever be happy again, days where I forgot what happiness feels like. Anxiety/depression are often stigmatized and they are hard to understand if one has never experienced them before. It takes an incredible amount of patience to help someone through this and I am beyond grateful to people in my support system who have been helping me. I do not know what the future holds but I am determined to keep fighting. I am going to run a spring half marathon. I signed up for the 2017 NYC Marathon and will raise money for Team Stop the Clot. The race will be almost exactly one year after my diagnosis. Right now, things are still very difficult. I go through good days and bad days. But I'm not done.

I am a survivor. I will keep moving forward.

(shout-out to the entire blood clot community that I have connected with online- the support/love I feel from this group has been huge over the last several weeks)"

David without a question the GOOD DAYS will outnumber and crush those bad days you mentioned in your piece.  You will overcome this challenge and enjoy the NYC Marathon from start to finish... with that speed you have worked so hard to obtain. Perhaps over the summer you can share some "Speed Tricks and Tips" that I could use so that I can become one of the faster runners in my household... right now as it stands I have some significant work to do...

The CLOT BUSTER Team #StopTheClot polka-dots will be speeding away with you not only in 2017 but for a long time in the future.

Thank Your for reading,

The Clot Buster

MARCH is BLOOD CLOT AWARENESS MONTH

#STOPTHECLOT

STOPTHECLOT.org

February Athlete of the Month

Come on winter!

Time for you to go.

Can't help it but without having snow to play in I really do not like the cold... I can deal with it when the sun is out and I can be teased that wearing my sun glasses somehow makes me feel warmer inside...

However, now that we know that we will have 6 additional weeks of winter I just have to accept the harsh reality and continue to sip my hot chocolate to achieve that coveted warmth inside...

Now, I can also reach that same warmth inside by reading blood clot survivor stories.  It is hard and uplifting at the same time to read about the surprise/shock, struggle, and eventual recovery that blood clot survivors can make after a clotting incident.

Of course every story is different and unique to each individual.

Our bodies will dictate the actual pace of the recovery and there is nothing we can do about that other being patient.  From my experience talking to blood clot survivors with many diverse backgrounds the "being patient" component is the most difficult to master as you listen to your body...

How do you explain to a teenage athlete to be patient...?

Well, personally I don't have the answer but I know someone who share her story about her clotting incident with STOPTHECLOT.org so you can find out from the source how to overcome the "being patient" component of the survival equation...

Please read on for JENNY's STORY...

https://www.stoptheclot.org/jennys-story.htm

I hope that you are able to get the same "warmth inside" as I did by reading this personal account.

No doubt that Jenny will not be going through the worst time of her life again and she will overcome this hurdle of the second knee surgery without any complications.  Their past experience gives her and her medical team the arsenal of knowledge they need to be successful.

Here is wishing Jenny the BEST OF LUCK on her recovery.  Looking forward to hear what else she will be able to accomplish!

Thank you for reading,

The Clot Buster

January Athlete of the Month

For 2017 I get to open up my series of blog posts with an athlete story that I am driven to share because it brings home the very reason as to why NBCA (www.STOPTHECLOT.org), myself, and many others do what we do.

In early December I saw in social media a post that I could not believe...

Through my readings of triathlon news I've heard of CRAIG PERCIVAL's and his accomplishments as a triathlete.  One of those had to do with being the first person to complete 8 Ironman-distance events in 8 consecutive days, in the 8 states and territories of Australia, which he achieved!!! 

During this monumental challenge he was able to raise over $80,000 for the John Maclean Foundation, a foundation that helps kids in wheelchairs achieve their dreams.  This is truly a testament as to the character of Mr. Percival. Nothing other than dedication, care, and support of everyone around him.

Unfortunately very tragically and suddenly Craig Percival was taken away from his family.  

"Craig passed away on December 4th 2016, following post surgery complications after undergoing knee surgery a few weeks earlier.  A clot passed through to his lung causing respitory issues, triggering a severe heart attack, starving the brain of oxygen.  7 days after the heart attack, Craig's life support was switched off and his organs donated to recipients."

I am not sure about you but this hit me like a ton of bricks would.

I was simply stunned.

Devastated that a World Class Athlete with a World Class Heart was taken away because of a blood clot...

It is hard to believe that a preventable blood clot caused this tragedy.

Even harder to believe is that Mr. Percival is just one of hundreds if not thousands with a similar faith that can in fact be prevented if the appropriate precautions are taken.  

So it is fitting that on this first blog post of 2017 we celebrate the life of Mr. Craig Percival and re-focus on our mission to spread awareness about blood clots and blood clotting disorders because that awareness can save lives.

As a result of this tragedy Mr. Percival's family is in need of some help... If you have it in you please consider donating via the following link...

https://www.gofundme.com/helpcraigpercivalsfamily

Every little bit can and will help!

Thank you for reading,

The Clot Buster

!!! HAPPY NEW YEAR !!!

!!! HAPPY NEW YEAR !!!

Here is hoping that 2017 it is full of CLOT BUSTER #STOPTHECLOT polka-dots

 Celebrate that Blood Clot Survivors can do anything and that they are spreading the word about blood clots and blood clotting disorders.

*** Get your very own polka-dot compression socks at www.PROCOMPRESSION.com

December Athlete of the Month

Do we often think about the "Gift of Being Alive"?

After doing these blog posts for so long I find myself very aware that being alive is a gift that I must enjoy each and every day regardless of what I am doing...

It is amazing the stories I am able read from clot survivors by simply asking about their clotting episode... I AM VERY THANKFUL that these stories are being shared as they are very powerful for the reader as well as for the writer...

ROBERT CASTRO is a clot survivor who purchased his CLOT BUSTER #StopTheClot polka-dots shirt and as a result he received my noisy questioner that he willingly shared with me and now I am sharing with you thanks to his willingness...

No doubt that Robert will put his polka-dots to good use while CELEBRATING that he is alive and spreading the word about blood clots and blood clotting disorders.

Read on and get inspired...!

"Yes, I am a survivor.  I was diagnosed with a DVT and multiple PEs August 12 of 2014.  The symptoms all started seven days earlier when I thought I had a pulled calf muscle from cycling.  I had just gone out for 35 mile bike ride I was stung by something in my left ankle and it was so painful I got off my bike and applied my frozen water bottle to my ankle.  After about 10 minutes, I started to ride back home in pain.  It had crossed my mind that this incident could have caused my blood clots but this has been dismissed by the doctors.  The next day, Sunday, I went out for a 27 mile bike ride and I still had some pain and discomfort from that sting.  

Bill Flaws - photos.run

I don't recall when exactly when my calf started to give me discomfort.  I think it was a couple of days later on a Tuesday.  As the week went along we pulled some long days at work do to an incident out of our control.  The discomfort got worse and my coworker suggest I see my PCP.  Unfortunately my PCP moved out of state.  He had just given me my last physical in mid-July.  I passed with flying colors.  Before he left he recommended two different Doctors.  They shared the same office and I went ahead called their office.  I asked who could get me in first.  It was Dr. Obermyer.  

The night before my visit I ended up burping a lot just before going to sleep.  Each burp caused a little bit of pain in my lungs.  I didn't think much of it.  The next day, August 12th, I decided to stay home and work before my appointment at 1 pm.  As the morning went along I knew something was wrong.  My lungs started to hurt.  In 2012, I was lucky enough to have experienced pneumonia but It wasn't at the time.  It was the worst pain I had experienced in my life.  Leaning on that experience I was now able to determine something was really wrong with me.  While on a conference call with the office I hardly spoke and my coworkers knew something was really wrong.  

The CEO, Mike, called me after wards and told me he was driving the 30 minutes to pick me up and bring me to doctor.  I was early to the appointment but when I finally saw the doctor I told him about the sting, the calf, and how my lungs felt.  He ordered the x-rays and saw nothing in my lungs.  He then sent me to the local hospital to do an ultrasound of my leg.  Mike drove me to the hospital and they performed an ultra sound.  When the tech came out he informed me that I had a blood clot in my leg and that I needed to be admitted to the ER.  At that moment I didn't know anything about blood clots except that people die from them.  I was entering my new world...  I was brought down to ER and they performed a CT scan of my lungs and that is when they found multiple PEs.  After wards I was admitted to the Hospital and as they pushed me into Hospital room a lady was sitting in the corner.  At first I thought she was with the Hospital and then I realized it was my mom's best friend.  My mom had told her I was at the hospital but my mom didn't know the state of my condition and with my parent's living out of state she showed up.  It was nice to see a familiar face.

I would remain in the hospital for next three days.  On the second day they were going to release me and an hour before my brother was supposed to pick me up my temperature rose unexpectedly.  I wasn't leaving and I felt relieved.  I stayed for another day. 

While at the hospital the doctors that I saw asked me several questions, family history, traveling, injury etc...  They performed several tests and could not determine why I developed clot.  All they could tell me was that it was an "unprovoked" episode.  The night before I was supposed to be released the nurse walked in and told me that I would need to learn how to give myself shots of Lovenox in my stomach.  I have always had to look away when I received shots and the thought of giving myself shots was terrifying.  She said if I didn't learn to do it that evening that the morning nurse would make sure that I did.  She then stepped out for several minutes.  I was terrified.  As I waited for her to return logic took over and I realized that I had to do it.  I live by myself who else would give my shots and if I didn't give myself shots I could die.  The thought of dying gave me the will to move forward.  When she returned I gave myself my first shot.  About a week later and a little bit more energy I started working from home again.

Once I came home I started trying to answer the question, "why".  It became my obsession to find the answer.  I had many theories and I passed them onto my Hematologist and even a family friend who is also a Hematologist.  In my research I found a cyclist who had a clot but my doctor explained to me based off the information I provided why this cyclist had his clot. It was not same.  I remembered that professional cyclist, Chris Horner, was sidelined several years ago because of blood clots. So I looked into his background checked his twitter account and website.   I was a big fan of his and eventually his name lead me to your blog.  It was refreshing to read the stories you shared.   

Researching as much as I could I never stopped asking my doctors and pharmacists questions.  About a year later I just ran out of questions to ask them. Now I ask them about the status of the antidotes for drugs like Eliqious. I was never able to find the answer to my "why" and I am now okay with that.  

About a month after my diagnosis I went walking with my father.  We didn't get very far probably less than a quarter of mile. I still remember turning around, it is was one of those moments that is etched in my head.  I wanted to keep walking but my body couldn't.  My thoughts were to walk again but also to go cycling again.  I wanted to get back on my bike and my Hematologist encouraged me to do so.  It wasn't until November that I was able to get back on my bike.  In my first ride I put my bike in the car and headed to the trail. I had always rode there but I knew I wouldn't make it and I wanted to take it really easy.  The constant pain in my lungs was still there but I went for about four or five miles.  Gone were the days of riding 35 to 40 miles.  I started increasing my distance when I felt I could.  I let my body tell me what I could do and I never tried to push it.  

That December I went to visit my parents for a month.  I was really excited to be able to ride in warm weather and on my first ride I crashed and fell hard on my hands.  The front tire got caught on even surface.  I saw a hand specialist and knew I wouldn't be riding for several weeks.  When I returned home in January I went to the Anticoagulant clinic the very next day.  My INR levels had dropped below 2.  That night I didn't sleep well. There was some discomfort in my leg again.  I went to the office and something told me I had to go back to the ER.  I cried not knowing what was next.  I had been looking forward for my six month evaluation and this put a damper into it.  They did another ultra sound and couldn't determine if I had a new clot or if it was the existing clot.  The doctors suggested that I should raise my target INR level between 2.5 and 3.0. 

I finally saw my PCP in February of 2015.  We looked at my hands and we talked about my clots.  The hand pain eventually subsided in April.  That spring my coworkers noticed a change in my behavior.  I was no longer myself.  I just didn't care and I was hardly sleeping.  I knew something was really wrong again.  After speaking with my Doctor's office they said I should go back to the ER.  I arrived at the ER and they started evaluating me.  I was very lucky, it turned out that I had allergies.  They gave me an antihistamine and my life quickly changed.  I was able to sleep again.  I thought this whole time that the reason I felt the way I did was due to the clots and that it was my new normal.  Eventually I would find out that I'm allergic to all the grasses, some weeds, dust mites and cockroaches.  I believe that with my weakened immune symptoms I developed these allergies.  After nine months I knew there was finally hope and I couldn't believe how good I felt. 

I set my hope towards finishing a two mile run in July for the local Independence day festivities.  I had run the 5k back in 2012 with a different brother.  I used to be an avid runner.  I ran track and cross country in high school and continued to run through most of my twenties.  I stopped running because of some injuries and eventually took up cycling instead, I thought it would be easier on my body. I was already watching the Tour de France every year because of Lance Armstrong and in 2010. I bought a bike.  I started walking and jogging trying to prepare myself for the July race.  When the Race day came I told myself that I would not walk and that I would finish the race.  At mile 1.25 I felt some discomfort in my right knee.  I ignored the pain and slowed down a little and eventually finished the race.  I had done it!  To my surprise when they announced the winners I ended up finishing second in my age group with a time of 18+ minutes.   Turns out there were only three of us in the 30-39 age group but that didn't matter, I felt that I was the winner.  This year I ran the same race again and again without any real preparation, just my cycling conditioning, I knew I wasn't going to be able to do the 5K so I stuck with the 2 miles.  I finished in a time of 16:50.  I didn't get second but fifth this time.  Apparently there is more competition with the forty year olds.  So now I've decided that I would start seriously running again and I'm looking forward to next year's race.  That one will always be special to me.  I've already started training and now I'm targeting a 5K in September.  

Thanks for asking me about my story.  I've never really put it all done on paper but it was also therapeutic."

Robert here is wishing you ALL THE BEST in your upcoming races... YOU CAN DO IT!

NEVER EVER GIVE UP THE HOPE THAT DRIVES YOU... Anything is possible as long as you go at it one step at the time.

Get those polka-dots out there and CELEBRATE being ALIVE as it is truly a gift!!!

Thanks for reading,

The Clot Buster

CLOT BUSTER #StopTheClot polka-dot FUN in Cincinnati...

... during the 2016 version of the THANKSGIVINGDAY RACE...

18 years and counting doing a race during the day of Thanksgiving... and most of them in the company of the one who got me into running... 

... I am still trying to keep up with her...

(Note who was the cooler shirt on... 2016 Boston Marathon VS. CLOT BUSTER #StopTheClot polka-dots...)

October & November Athlete of the Month

I guess fall is in the air...

Well the weather is not exactly reflecting fall weather but I am NOT complaining about the extra and abundant sunshine with the more than comfortable temperatures...

Very hard to stay indoors with this sort of weather... Shhhhh...Don't tell my boss but I am taking some extra walks at work just trying to soak it a little more.

But with the arrival of October the final preparations are being done by the runners on TEAM STOPTHECLOT who will be tackling the 2016 NEW YORK CITY Marathon.  

Back in August we were introduced to Ang as one of the members of the 2016 team and during this post I wanted to introduce to you the rest of the team who are all a tremendous inspiration because of their diverse backgrounds, desire to overcome blood clots, and continue living!

Please read on and if you have it in you consider helping out their fundraising which is helping our message of STOP THE CLOT!!!

SANDY

I will be running my seventh marathon in November, the New York City Marathon! I am honored to be running for a charity near and dear to my heart and lungs...The National Blood Clot Alliance.  

As you may know, I survived a pulmonary embolism (PE), blood clots in both lungs, in October 2012 while traveling on business in Switzerland. 

I want to bring awareness to this life threatening condition as I was so surprised that as an active person in my fourth season of triathlons at the time, that this could happen to me. I had signs over several months that I ignored including a pain in my calf. I would put a heating pad on it every day after work and thought all of my training was given me these leg pains. I had just completed an 8 day, 525 mile bike ride two weeks prior to my PE so thought new cramps in my legs were from the ride. But the long flight to Switzerland likely contributed to pushing blood clots in my legs to my lungs. Luckily, my mom who was traveling with me, called a doctor to the hotel when I was completely out of breath and my heart was pounding so hard. I went to the ER and was diagnosed with PE and spent a week in the hospital in Switzerland, far away from home.

The cause was likely birth control pills. Please consider the side effects of any medicine you may take and weigh the pros and cons. 

I am running for this charity to bring more awareness and education about blood clots that can strike anyone and is frequently fatal. 

https://www.crowdrise.com/NationalbloodclotNYC2016/fundraiser/sandynelson2

CINDY

I ran my first 5k in August, 2010.  Afterward, my husband Bob and our friends and family were all celebrating together in the local pub at the finish line.  It was a great day.  What we didn't know was Bob had a major blood clot (DVT) in his leg while we were celebrating.  We just thought he had an achy leg.  Six months later Bob suffered a second DVT and ensuing PE.  That’s when we learned that he suffers from Factor V Leiden clotting disorder. As a result we wanted to learn as much as possible about blood clots and his disorder.  We were referred to the National Blood Clot Alliance and Team Stop the Clot by Hackensack University Medical Center.  NBCA has been very helpful and we have been impressed with the Team Stop the Clot efforts to support all those with these illnesses.  

I will be running the NYC Marathon on November 6^th.  This will be my first marathon and probably my last - and by finishing it I will achieve a major life 'Bucket List' goal.  I'm beginning my adventure today, some 200 days from race day.  As I go on this adventure of highs, lows and long runs, along with my fellow Team Stop the Clot members, I'm asking you to make a donation to the National Blood Clot Alliance so they can further their work in raising awareness of blod clots and clotting disorders.  I would like to take advantage of this opportunity to fundraise on behalf of Team Stop the Clot as a way to give back to the organization that has provided us with great support.

https://www.crowdrise.com/NationalbloodclotNYC2016/fundraiser/cindyfeury

BARRY

https://www.crowdrise.com/NationalbloodclotNYC2016/fundraiser/barrywood1

COURTNEY

https://www.crowdrise.com/NationalbloodclotNYC2016/fundraiser/courtneyhale3

ADAM

https://www.crowdrise.com/NationalbloodclotNYC2016/fundraiser/adampennington

RICH

https://www.crowdrise.com/NationalbloodclotNYC2016/fundraiser/richhaggerty

Here is wishing our runners THE BEST OF LUCK in their upcoming adventure through New York City.  Without a question it will be an experience they will never forget.  

The TEAM STOP THE CLOT polka-dots will be well represented!

Thank you for reading,

The Clot Buster

September Athlete of the Month

Inspiration is all around us.

Sometimes you will find it where you least expect it.

I am very lucky to have a fountain of inspiration as I come across stories of survivors through social media... I am very lucky that those I approach are willing to share their story so that all of us can learn something... 

From my part I always appreciate the tenacity to overcome the challenges that blood clots can throw our way... It just does not get old and honestly it is energizing.

For the month of September I have a special personal account that you need to read... EMMA JANE has a story that will resonate with you not only because she is a clot survivor but also because she was able to overcome the challenges and come back to accomplish milestones she did not think she could do...!

Read on...

"As a kid I was always active . My swim teacher encouraged me to strengthen my core with running and sit ups and press ups  to help my swimming . Later I started running a bit further to keep fit and deal with stress. Only in 2013 did I start taking part in organised races. And within 9 months I ran my first marathon. I'm about to run my 35th marathon now. I thoroughly enjoy it all.

I also love a variety of sport activities. Mainly running, also cycling and swimming including working out at the gym.

My longest race was 37 miles . I have completed 2 half iron man triathlons and my fastest marathon is 4h 4 mins which I completed 3 & 1/2 weeks after my PE was diagnosed. I was astonished!  How did I do that??!  

I'm brick training more lately (2 or more disciplines back to back) as I want to take part in a full ironman (2.4 miles swim. 112 miles cycle. 26.2 miles run) totally bonkers but I'm so motivated to do it. 

I noticed a funny cramp in my left lower leg . Down the front of it last year (2015) in mid September. It went on for 3wks then disappeared when I had some osteopathy. Then in mid October I was bitten several times on the left calf by a cat ( I'm a vet nurse part time) it didn't go nasty. I bathed it in salt water and it healed quite well. A week later I felt what seemed like a knotty muscle in the back of my left calf just below the knee . It was quite painful. Massaging it seemed to help and I carried on running. It had almost disappeared when I noticed my left calf was swelling up . It was the 2nd of November. I couldn't get in to see a Doctor at my local office so a nurse at A and E examined me. By then it was so painful I felt very sick with it. The nurse thought it was an infection from the cat bite and referred me to my Doctor for an emergency appt that day. I didn't think it was a cat bite infection. It didn't look or feel like a typical infection . But I kept an open mind. The doctor also didn't think it was infected bite or a DVT as I didn't fit the profile. I am slim, fit, non smoker. So he told me to take pain killers and rest it thinking I had pulled a muscle. But it didn't improve . 3 days later my leg was so painful and swollen ( 6 cm bigger than the other leg!) I was crying in agony and being physically sick. I phoned my doctors office again . I was given an emergency appt but again it wasn't thought to be DVT. After I persisted the doctor agreed to test my d-dimer levels and put me on a short course of xarelto just as a precaution. By now I couldn't walk on my leg at all. Later that day my test results came back . D-dimers are supposed to be no more than 500. Mine were 4800!!! I was given an emergency hospital appt . I had two clots in my left leg extending above the knee. One blocking the vein . The other nearly blocking the vein. Each more than 6inches long!!! I was numb with shock. Why had this happened? More blood tests were booked and a mammogram as cancer can cause clots and both sides of my family have experienced cancer . Lucky for me no cancer was found. And the DVT s were attributed to the cat bite. I continued my running etc. Ran another Marathon 20days after my leg first swelled. I know . I'm mad  . But I had already booked it. Paid for it. It was a lapped course so I could stop at any time if I needed to. I struggled with it but finished in 4h 34. Felt very dizzy at the end but happy. Then 5  weeks later I ran a flat road 50k race . Felt super fit. No leg problems or breathing problems and achieved 5h 32. I was so happy  . Felt on top of the world. I could still run and run well at that. My hobby would continue to develop and I could enjoy it to the hilt.

Near the end of February I finished my tablets and had an appt with a specialist for more blood tests and a consultation . Again the DVT s were attributed to the cat bite. I felt happy with that and continued on with my life, work and hobbies . A fortnight after I had finished my blood thinners. I experienced flu like symptoms and quickly became exhausted but as the symptoms improved within a few days I dismissed it as an infection and carried on with my running. I did another marathon called The Larma Tree marathon. Held in a beautiful rural estate. Lots of my running buddies were there. I took it easy but enjoyed the event nonetheless for being recently sick. Then during my 28th marathon on 3rd April 2016. I experienced funny breathing and tight chest. 'Weird' I thought but I finished and  felt fine after I finished  so again I thought nothing of it (oh dear) but the next day I felt awful. Breathing was hard work. My chest felt tight and heavy. I thought it was another infection and just had to tough it out . The next night at about 3am a searing pain across my left shoulder woke me up. I was in agony.  My breathing was extremely difficult and my chest was tight and I also felt uncomfortable lying down.  Any pressure on my back hurt in my chest. I had had similar symptoms 8 years before and it had been dismissed as muscular (!!!)  I felt unsettled enough though to phone the NHS helpline who immediately called an ambulance out to me. I thought what a lot of fuss! No abnormalities showed up on their equipment. Oxygen fine. Temperature fine. ECG fine. Blood pressure all fine. I was advised to take some pain killer and see my doctor the next day on the 6th April 2016 . I managed to get a last minute appt to see a nurse practitioner. Who instantly panicked and sent me to Bath Ruh A &E. I didn't believe  I had PE . I didn't want any fuss. I refused the emergency clopidogarol injection saying 'don't waste it on me' (hahahaha) I spent 10hours in MIU being tested poked and prodded and scanned. My DDimers were high again. 1100 ! I broke down at that point. I was there all on my own and something awfull was happening to me . I had to go off and have a good walk. It helped and thank goodness for FaceBook!! The support I was getting from my friends was amazing. I will never forget and always be grateful. After a few minutes I pulled myself together thinking . I need to get on with this. I can do this/deal with this. I have been through tough times before and survived. I can do it again. 

      I was then booked in for a VQ lung scan. My body would lie in this huge doughnut shaped machine while I was sandwiched between two massive plates that take the images of the air ways and blood vessels in the lungs. I was pumped full of radioactive gas and iv fluid for contrast then lay there listening to Enyas soothing music in the background. I soon started snoring !! The machine attendant was very good, very caring and never once indicated what my scan results were . Once I was back in the MIU though the expressions on the nurses faces registering outright shock at my results completely gave the game away. I found myself laughing under my breath . When the doctor on duty in the MIU next spoke to me she tried to cover up just how bad my results were with her jolly voice and jargony words . I was not impressed and it was still a big mystery as to why these clots were occurring. Next thing I know I have an appt to be checked out for cancer!! Again!! Nooooo . Lucky for me its less than a week away. My results were clear but I still felt very uneasy and less than reassured. The very next day the specialist was due to call me and she had some great news! I have Factor V Leiden's . Yahooooo ! I hollered down the phone. I didn't have cancer!!! I felt such relief . I knew about Leiden's . Had researched it along with other causes of clotting and I knew I could deal with having it . Yes I'm on xarelto for life and all the gremlins that brings with it but I was in all other ways Healthy. I was very fit so my body dealt well with the symptoms of multiple PE very well . Yep multiple PE, five areas in my lungs were riddled with blood clots. Too many to count. I was stunned!!  And filled with anxiety which I then handled by going for a 3mile run just hours after my diagnosis . I was a bit breathless and slow but it felt great to offload the anxiety. I then tested myself physically over the next two weeks. I was happy with my body's performance and doing breathing exercises helped enormously so on the 1st May 2016 I ran a hilly road marathon . Very Carefully. I set a new personal best record !!!! My previous one set over a year ago was 4h 12. My new one this day was 4h 4m !! I could not believe it. I asked if the clock was accurate lol!! Then when it had sunk in I was ecstatic. My life would always have the shadow of PE and Leiden's and hence xarelto over it but it was good and going to get better  . I have since completed another 5 marathons including 3 ultras (30 + miles)  and a half iron man triathlon . Not without difficulties but I persisted and overcame and threw myself all into it and I'm succeeding. 

I only took time off work for hospital appointments. I kept going otherwise. It was hard but it helped an awful lot with the anxiety. I'm a self employed beautician and love my work. My favou
rite piece of gear has to be my garmin sports watch. Its a 910 forerunner and does my swimming and cycling too. And where would we sporties be without Strava ?! Lol Someday I would love to visit Club la Santa on lanzarote a sports persons paradise . All sorts of sports activities and socialising to do. As well as a cruise as I have many cocktail dresses and not much opportunity to wear them..."

 

Emma here is hoping that you get to wear those cocktail dresses while still running and eventually doing that elusive IRONMAN,  For sure you will have to do that race in the CLOT BUSTER #StopTheClot polka-dots..!!!

Thank You for reading,

The Clot Buster