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Wednesday, May 03, 2017

May Athlete of the Month

As the months continue go by and I am lucky enough to share with you these blog posts about Blood Clot Survivors I am beginning to wonder if all of the States in the United States have been represented with the post...

I know that I've had a number of international Blood Clot Survivors featured but it would be interesting to see how many States have been actually represented...? 

One thing is for sure there is a big country (and world) out there with a lot to see and experience.  One of the states that I have not had the chance to visit yet is IOWA.  Perhaps some day I will find my way there and get the opportunity to ride around in our CLOT BUSTER #StopTheClot polka-dots with this month's CLOT BUSTER Athlete of the Month - TODD ROBERTSON.

Again the magic of the internet and social media has been able to connect me with Todd so that this month we can share his story that is sure to make you reflect and inspire you to overcome the challenges of blood clots.

Please read on and enjoy...    

What is you sport/activity of choice? Why do you enjoy it?
Normally, I would say that paddling and spending time on rivers whitewater canoeing, kayaking and paddle boarding is my greatest passion activity and it’s also my job as an instructor. That said, cycling is my main passion right now because that is the vehicle I use for spreading blood clot awareness!



How did you get started in that sport?
I discovered rivers 20 years ago when I was given a used canoe. Once I hit the river, I was hooked for life. It later turned my new passion into a job as Rivers Outreach Coordinator for the Iowa Department of Natural Resources and I also became a certified Level 3 instructor. Teaching people how to paddle efficiently and safely is an important job to me, especially teaching children. As for cycling, I bought my first road bike 2 years ago and ride as much as I can. I think riding RAGBRAI, the oldest and largest group ride in the world will be a great way to spread awareness as I wear and rotate the “polka dot” jersey and my own custom made Pulmonary Embolism Survivor jersey. I’d like to see some of the Team Stop the Clot on RAGBRAI 2018!! Let’s have our own little group of clot-busters riding together for a week.

What is the latest milestone you achieved or plan to achieve?(Long bike ride, some race coming up or that you did)
My most recent milestone reached was getting my certification to teach stand up paddle boarding. It was no easy task. At 53 years old, Lake Superior really put me through the meat grinder as the limits of my physical power was truly tested!  The waves and swells were huge! But, I made it. Other potential instructors in the brutal week long course were in their early 20’s or younger! I was the old man in the group!

 Tells about your clotting episode.  Are you on blood thinners now? How long were you out of commission?
Easter, a time of resurrection, was my 90 days out.  My 3 month PE clotiversary.  I made it to 50 years of age before having a clot and finding out I have Factor 5 Leiden, the homozygous variety. Both of my parents had the mutated gene and BOTH passed it on to me. How fun!  My first traumatic “bloodletting” injury came when I fell off of a canoe trailer, suspended in midair by a big hook in my leg. I now know what it feels like to be a hooked fish. After ER surgery, I developed a blood clot in my leg at the site of the injury. They attributed it to the injury itself. Then a few months later, another clot, this time a DVT. They then did a blood test and gave me the F5L news. Anticoagulants for life. They say homozygotes have an 80% increased chance of clotting abnormally over the non F5L person. Not sure why they bother with that 20%. I mean if the weather forecast calls for an 80% chance of rain, are you really thinking about that 20% chance you will stay dry? No, you’re too busy trying to find the umbrella because you know you’re going to get wet! I’m now on Xeralto, 20mg daily. So this year, my former “not so bright” doctor took me off Xeralto 4 full days prior to my colonoscopy. That was a mistake on his part. That long off Xerlato is not the way to bridge. For 3 full days I had no anticoagulant medication in my system.  But he wasn’t the only one at fault. I had a bad habit of missing doses here and there and taking X in the morning on an empty stomach. That entire combination gave me a Pulmonary Embolism on January 17th, 2017. It was the size of pregnant earthworm (makes you envision it, right?) and it slithered to the bottom of my right lung.  I went to work the next day. I was weak, and was told I looked like walking death, but I was very lucky. Now, 90+ days later, my lung has healed 80% and I am back to normal.  But being a F5L homozygite, I am constantly, in the back of my mind, on clot watch.  I do look at all of this as a blessing. Maybe best thing to ever happen to me. It has turned me into an “awareness raiser”.  A recent newspaper article and interview went nationwide and I heard from over 600 survivors. I have started an Iowa based support group and campaign with the support group being backed by two local hospitals, Mercy and Methodist.

When were you able to get back into your activity?  How did it feel that first time? 
I was able to start running and exercising within a month. I just did my first 20 mile bike ride last week to test my lung out. It felt awesome, although at the end of a 28mph sprint, that spot where the clot had come to rest, showed signs of soreness, reminding me that I still have some healing to do or could be damaged permanently. I plan on riding all 400+ miles of RAGBRAI this July. I will also be back to instructing in just a few weeks.


What is your favorite piece of gear for your favorite activity? (Bike brand, running shoes, perhaps a running singlet or the Clot Buster's Running Polka-Dot Technical Shirt...)
My favorite gear is my “no brainer” item: my rescue lifejacket when on water. I also have my Scott Speedster road bike, my Boardworks touring and racing SUP and I love my clot-busting running shirt, bike jersey and tri jersey! I wear the dots every chance I get and when I rotate out on the bike, I wear my PE Survivor jersey! I need a polka-dot clot-busting lifejacket!

How much are you getting out doing your sport?  (Every day you do some training, 2, 3, 4 times per week)
I stay active. I paddle about 1000 miles a year and will bike as much as possible, including commuting to work on many days. I also have signed up for quite a few 5 and 10ks. Next up: The Drake Relays Road Races!

What is your favorite food?  Either generally or after a workout.  For me there is nothing better than a Chipotle Burrito...
I am addicted to multi meat pizza and chocolate milk. Also love my ribeye’s on the grill. I’m an Iowa native…and that means I’m a homegrown corn, meat and potatoes boy.

If you could go some place to visit and explore, where would like to go?
Our many National Parks. I love the NPS. I want to go to Yosemite and Yellowstone and bike and paddle in both locations!

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.
The NUMBER ONE thing to remember is: You need to be your own advocate. Not all doctors finished at the top of their class and not all have a grasp on blood clots. Find a good team if possible, especially if you have suffered a PE. The team should include at least one visit with a cardiologist, a pulmonologist and a hematologist.  Having a good GP/MD for regular visits is a plus. Remember, you can “fire” any doctor you wish if you are not getting your questions answered or if you feel you are being “blown off”. We all suffer post traumatic shock and we need emotional support. Also, give yourself time to heal. We as people are like snowflakes….no two people are the same. Recovery time can range from weeks to years and everyone is going through something different. It does not have to be a death sentence and clots and clotting conditions can be managed.  Make raising awareness a goal. Blood clots are NOT talked about like they should be. We need to spread the word. By doing this, we can help ourselves and help others. We got this!

And if you have not been tested for a genetic clotting disorder and have suffered clots previously, do so, especially if there is no reason known of why you clotted abnormally.  Again, be your own advocate, get educated and spread the word!

Also while you are reading this check out this video Todd had the opportunity to participate to discuss the dangers of blood clots and the awareness needed to be alert in combating this potentially silent killer...

Sounds like Todd and I could hang out for sure!

For many years now I've been wondering about riding RAGBRAI as one of the most epic and famous state crossing routes in the United States.  I am not sure I can keep up with Todd during this challenge but for sure I think that getting a team of people in CLOT BUSTER #StopTheClot polka-dots would be FANTASTIC!!! Perhaps in 2018 we will have to make this happen.

Also, I will need to get some pointers from Todd to improve my Kayaking skills... not to mention how I would love to get into doing more Stand Up Paddling... For sure sounds like Iowa will be on my short list of states to visit next... Specially now that I know I have tour guide in #StopTheClot polka-dots.

THANK YOU TODD for your willingness to share your story.  YOU ARE MAKING A DIFFERENCE!

Thank you for reading,

The Clot Buster

Monday, April 10, 2017

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 15th

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 6th 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

Saturday, March 04, 2017

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


My 60th Triathlon Finish !!!

My 60th Triathlon Finish !!!
First Time ever My Son got to cross the finish line with me. Without a doubt a Wonderful Experience