Blood Clots are for Old, Sick people, right?

**This is a long one with no photos–sorry!**

On May 6^th (actually, early hours May 7^th) I was diagnosed with 4 Pulmonary Embolisms and a Pulmonary Infarction. My first inclination that something was wrong with me was March 31^st. The purpose of this blog is to chronicle how I went from running really well and training very hard for the Providence Marathon in February/March to my diagnosis in May.

Why should anyone care? I wonder that myself a lot, but here’s the thing. My guess is that anyone reading this blog or even this post specifically is some kind of athlete and possibly young enough to never have thought about blood clots before.  Are you a hiker, biker, runner, triathlete, swimmer, soccer player, etc.? Great! You are not at risk to develop blood clots or pulmonary embolisms…. Yet neither am I, and here I am. My intention isn’t to make anyone worry about them…much. I just want to share some of the signs that I experienced and show how easy it is to miss a diagnosis when you are otherwise young, active, and have no risk factors.

Most of the symptoms I’ll showcase are best viewed through the lens of my running progress (or lack there of). This is an example of why tracking your training through notes, Strava or some app, or whatever your preferred method can be helpful. I have a great record of my running and how each run felt thanks to my diligence with Strava, so I can easily look back and see my training deteriorate and line it up with how long I’ve had pulmonary embolisms. It’s a perfect matching.

I’m going to start by showing you a couple of weeks of my “healthy” training, so you can compare to what happened after that. These healthy weeks are during my Providence Marathon training.

Week 1 Healthy–

• Saturday March 17- 16 mile run @ “easy” feeling pace. 9:14min/miles
• Monday March 19- 2 mile warm up, 5k @ tempo, 2 mile cool down- 7:50min/mile tempo
• Tuesday March 20- 5 mile recovery with Sky- 9:30 min/miles
• Wednesday March 21- Easy Commute, 3.5 miles, 9min/miles
• Thursday March 22- Easy 5 miles with Sky- 9:20 min/miles
• Friday March 23- Morning 6.5 miles with Sky- 9:20min/miles

Week 2 Healthy-

• Saturday March 24- 18.25 miles @ “easy” feeling pace. 9:15 min/miles
• Monday March 26- Death by 8x1000m workout (60sec rest)- Intervals @ 7:05 min/mile pace
• Tuesday March 27^– Recovery 5k with Sky- 9:25 min/miles
• Wednesday March 28- Run Commute with Ruby and Sky- 5.5 miles @ 9:30 min/mile + 3.5 miles home with Sky @ 9:19 min/miles. + Evening Bangers Club Run 3.3 miles @ 8:50 min/miles. (big day)
• Friday March 30- Easy 4 with Sky- 9:50 min/miles

Week 3 Healthy but starting to feel bad—running less

• Saturday March 31- Cut back long run week- 10 miles @ 9:30, harder to keep pace.
• Monday April 2- 2 warm up, 2 x 2 mile, 2 cool down with Ryan- 7:45 min/mile pace- last run where I felt great.
• Tuesday April 3- 3.6 miles with Sky- 10:09 min/miles

Week 4 Serious Downturn

• Saturday April 7- 16.5 mile long run @ 10:51 min/mile pace. Walked a lot. Wanted to run 20 with some progression but could not. Met Ruby @ Janji and she helped me finish to 16. Strava title: “Morning Suck”
• Monday April 9- Planned workout: 2 mile w/u, 4×1 mile @ Threshold, 2 mile cooldown. I warmed up @ 9:40s and then couldn’t break 9s for 1 mile and then gave up. 3.5 miles @ 9:20 pace. Strava title: “balls”
• Wednesday April 11- 2.33 miles @ 9:51 min/mile. Strava title: “fuuuuuuu”
• Thursday April 12- 6.5 miles with Ruby @ 9:35 min/mile pace. Very difficult.
• Spent the rest of this week hiking the fells slowly with Sky.

Week 5- Worse

• Monday April 16- .94 miles @ 10:22 min/mile. Strava title: “everything sucks”
• Tuesday April 17- 5.5 miles with some hill repeats with Ruby @ 11min/mile. Strava title: “That’s something, right?”
• Wednesday April 18- 3.3 miles w/ Sky @11:49 min/miles. Strava Title: “Morning ‘Run’ w/ Sky”
• Thursday April 19- 3.77 miles w/Sky @ 9:24 min/miles. Strava Title: “This didn’t suck as bad!”

Week 6 Confusions

• Saturday April 21- 2.5@ 11:50min/miles. “I can’t breathe” + a stunning .3 mile @ 9:30 min/miles before ditching the Bangers run.
• Sunday April 22- Skyline Loop at the Fells- 7.44 1k+ feet gain, and actually felt okay!  + Fells double.. Res Loop (6.5) miles with Jeremy and Seero, still felt good.
• Monday April 23- 3 miles @ BU @ 9:30min/mile + 3 miles at the track later @ 8:50min/mile, inspired by my friends to push it
• Tuesday April 24- Skyline loop @ the Fells with Sky, felt good 7.3 miles.  + a semi-drunk 5k to celebrate LFC beating Roma in leg 1 5-2 @ 9min/miles
• Wednesday April 25- 5k with Sky @ 9:47 min/miles (this felt like shit)
• Friday April 27- 4 morning miles with morning crew—walked and cried at the end. @ 9:45min/mile pace. Agony.

Week 7 to the hospital- Lung pretty dead

• April 28/29 backpacking trip with Heather—SO exhausting.
• Monday April 30- 2.1 miles @ 9:40 min/mile. “nope” + 3.2 later with Sky @ 10:35 min/mile.
• Tuesday May 1- Commute, 3.3 miles @ 9:46 min/mile
• Saturday May 5- 1 mile with Sky @ 9:14 min/mile (but with a 10 min break half way to talk to Zurlo), 1 mile with Buck @ 9:50min/mile
• Sunday May 6- attempted trail run.. 1.14 miles @ 18 min/mile. “Can’t run no fun”
• And then Sunday evening I finally checked myself into the ER.

What did I do during those first few bad weeks up until hospitalization? 

I first went to visit my Primary Care Physician on 4/11/18. My largest complaints were fatigue and trouble breathing while running. From there we did a number of things over the next couple of weeks. The first thing we did was to take a blood test and test for:

• Blood composition
• Vitamin/Mineral deficiencies (anemia)
• Lyme’s disease
• Mono

All of that came back negative, so without answers. I had mentioned to the nurse that I was beginning to also feel depression. My primary and nurse thought maybe this fatigue was an artifact of depression and recommended I see a psychologist and maybe take some psycho-pharmaceuticals. I pushed back hard here, and I’m glad I did. If anything, my depression was an artifact of feeling like garbage all the time. I made a stink and forced my doctor to call me to talk. She totally understood, but I’m glad I made her listen. It’s important to advocate for yourself, you know your body best.

On April 18, she put me on a steroid as well as albuterol inhaler. We also did a blood test to rule out severe allergies. I tried the inhalers to see if they would help and they did not.

On April 23, the nurse called to tell me that my allergies are all very mild and are likely not the cause of my discomfort. This seemed like a real dead end. I had no more questions and they had no more ideas. They made an appointment for me to do pulmonary testing in a few weeks (an appointment I would never make it to).

On May 1-3, I developed a really important and horrible set of symptoms. I wear a Garmin watch all day and started noticing that I was exhausted walking from the bus stop to my house or from my house to the coffee shop. These are short walks. I noticed my heart rate spike up to 150­+ on these walks. I would stop and rest. I would just ask myself “what in the fuck is going on with me”. At night, when resting (either sitting or lying down), I started getting horrific pleurisy pain in my right side and shoulder. This pain was like nothing I had ever known before. My shoulder felt tingly and tired, a strange type of pain. Massage or changing positions did nothing for it. My side pain was sharp, like a stab. It happened when I would breath in, so I consequently would stop breathing in to give myself a small reprieve… which in turn made my next breath either super short and uncomfortable or very deep and painful.

With these new symptoms I went back to my Primary Care, slightly concerned that I was having a heart attack (google for female heart attack symptoms, they are exactly what I was feeling except in my right side). She sent an order for me to have pulmonary testing done, she seemed unconcerned that I was having a heart attack but when I brought up concerns, she ordered an EKG which came back normal.

I walked away from the doctor’s office that Friday May 4^th really upset. I could not tell if my pain and heart spikes were some sort of panic attack or not. My EKG was normal and my doctor told me to come back on Monday if I were still in pain.

I sat that Friday night writhing in pain. Saturday morning I ran 2 slow miles –1 with each dog. Saturday night I went to a BBQ at Daniel’s and was just so uncomfortable sitting around the fire with friends that I left. I went home just to writhe in pain all night. Saturday I promised myself that if I felt the same pain another night, I would just go to the ER. Even getting treatment for a panic attack would be better than experiencing that again. Sunday, I tried to run and made it less than a mile only to be able to walk maybe a full mile more before succumbing to fatigue,  Sure enough, Sunday night I was in pain and my roommate Ruby came home to my crying and agony. Thankfully, she helped me take the steps I need and drove me to the ER.

In the ER, my path to diagnosis looked like this:

1. Chest X-Rays (showed nothing)
2. Ultrasound on gallbladder, where my side pain was, to check for gallstones (showed nothing)
3. EKG (irregular)—tipped the doctors off to check for d-dimer clotting enzyme in my blood
4. D-dimer—very high. Next step it to confirm clots.  **note d-dimer is a type 1 error prone test for PEs/DVTS. It can be elevated in tests as a false positive for blood clots. However, if d-dimer is normal, there are no clots.
5. Contrast Angio CT Scan—confirmed 4 pulmonary embolisms across both lungs and an infarction (dead lung section).

What now?

Since my hospitalization in oncology, I’ve been fortunate to talk with a number of talented doctors who make up my team at Beth Israel and have learned a number of things about Pulmonary Embolisms and DVT. This is some of the stuff I’ve learned about Pulmonary Embolisms generally, as well as about my specific treatment.

Estrogen Birth Control. Women, you should pay attention to this if you are on an estrogen (or perhaps even progesterone) birth control. This risk is real, but only usually a threat when there are other risk factors—such as genetics, family history, recent hospitalization, smoking, etc. Otherwise, taking an estrogen birth control generally raises your chance of clots from 0.04% to 0.18% (or 14 out of 10,000). Is it something to consider? Yes. Is it likely the cause of a blood clot when there are no other factors? Maybe not.

What did I do about birth control? My only known risk factor for blood clots was being on a Nuvaring birth control (estrogen). One of the first things I did after leaving hospital was talk to my Primary about my options. This presented the OBGs at BI a fun little dilemma. I scheduled a procedure date to switch birth controls to an IUD, but when I arrived at the hospital, the doctors could no longer decide what the best birth control method would be for me. They even had to get my hematologist on the phone for a 6 doctor discussion. The options are:

Estrogen IUD- kind of out of the picture for me since this is what I am avoiding.

Progestrone IUD (Mirena)- Mixed evidence about whether progesterone elevates risk, and even the studies that suggest it does elevate blood clot risk say it’s less elevated than estrogen.

Or a Copper IUD- no hormones at all, but can increase bleeding.

I went in for the copper but left with the Mirena. The end discussion was that I should try a copper IUD, but because I am on a lot of blood thinners for a long time, it might make me anemic. They said something to the effect of “try a copper IUD for a month and if you become anemic, come in and we’ll switch to Mirena.” I had been sitting there for 90 minutes already so I kind of said “fuck that, give me Mirena” and they did. So the estrogen problem is solved.

Drugs. I did 3 weeks of 30mg of Xarelto and then switched to 20mg. I will stay on this for 6 months, until November. Then I get to make a decision about how to treat my condition. I’ll explain why it’s a tough choice in just a minute. The blood thinners are great, I really have almost no side effects. I’m not having nose bleeds or any internal problems that I can tell. Sometimes I’m really tired and have a lot of trouble staying awake but that’s not so bad and also not so often.  I just have to be careful about falls and bleeding.

Why is my case hard? Okay, this is the more interesting part of this whole story. I’m a young, athletic person with no risk factors (other than Estrogen birth control) and no family history. I now experience an episode of Pulmonary Embolisms that can’t be tied to a specific event. In my esteemed team of doctors, my hematologist and cardiologist explained this to me the best.

There are 2 categories of DVT/PE diagnosis: provoked and unprovoked. A provoked blood clot comes with some known higher risk factor or combination of risk factors. This means family history, genetic factors (Factor V Leiden mutation), long traveling, bed rest, surgery, or hospitalization. These are easily treated, you give a course of 3 or 6 months of blood thinners and then you can easily know what to do. For genetic reasons, blood thinners for life or observation. For hospitalization/bed rest/ etc., stop blood thinners after 6 months and return to normal. For unprovoked clots, there is really no known cause likely because there are potentially hundreds of factors that are not yet discovered. Typically, unprovoked clots are treated with a small dose of thinner for the rest of life.

So my case could be treated either way—as an estrogen provoked clot or an unprovoked clot. But recall estrogen has such a small risk associated. I still could be that 0.18%, but it’s unlikely. I was tested for Factor V and it came back negative so this puts me in a pickle. Here are my options:

• Treat this like a provoked PE and stop blood thinners at 6 months.
• Treat this like an unprovoked PE and take a small dose of blood thinners forever.
• Treat this like I have no idea and take 6 months of full dose of blood thinners and then 6 months of half dose (because risk for reoccurring clots is highest in the first year) and then stop.

Things I am considering:

• I am 28 years old and the rest of my life is a long time.
• Blood thinners, even a half dose, come with a risk of bleeding. This does not sit well with my remote mountain adventuring life. (Should I fall and start bleeding internally from my spleen on Mt. Adams, I am pretty fucked.)
• A study of 500 unprovoked PE patients in Italy showed that those individuals who took a half dose of blood thinner did not have another PE in a 10 year follow up. Those who did NOT take any blood thinners after the initial 6 months had a 50% chance of another blood clot (or more) by 10 years later.

My cardiologist told me outright that my hematologist was the smartest doctor he’s ever worked with, so if I didn’t have strong opinions, I should just listen to him. I believe he wants to treat this like a provoked PE and let me go without blood thinners after November, but that 50% stat scares me. I see him again in October, so we’ll see what he says then.

Oh, and as for my dead lung—did you know that lungs regenerate??? My dead lung will scar over, break down, and then I’ll eventually pee it out over time. My healthy lung tissue will grow and expand and I will have my full capacity back eventually! How freaking cool is that?!

How am I now, after almost 2 months?

I feel great. My internal specialist in the ER told me I wouldn’t be able to run for 6 months. He was wrong and my smart hematologist told me I could run so long as I stopped if I were uncomfortable. While I had to drop from my 3 goal races this summer (The Finger Lakes 50 Miler, Vermont 100k, and IMTUF 100 Miler), I have been able to enjoy myself with other pursuits. I have been kayaking and paddleboarding with Sky out on the Charles, something I wouldn’t be doing if this hadn’t happened. I also have been running just for me, without the pressure of needing to put big training efforts in for the long distances. I’m sad that I haven’t been able to get to the mountains much, but they will always be there for me.

I’ve been starting to hit the track again. My first few runs back were so oddly satisfying but also painful. My dead lung doesn’t like it when I work hard. After a few miles or after some faster miles, I’ll get a stabbing pain in my side. It hurts, I’m not going to lie. I often buckle, sometimes I yell, but it goes away quickly when I stop. I also get tired and out of breath quickly, but I have to remember that I have half a lung missing. I think of it as altitude training.

October 13^th is a Saturday. It’s also World Thrombosis Day. Again, prior to May 5^th, I knew what blood clots were but I also knew them as something that happened to old, unhealthy people. I hope those of you that read this consider researching signs and symptoms, because worldwide, 1 in 4 people die from causes related to thrombosis.

Personally, I plan on racing on World Thrombosis Day. I was considering running a marathon, but marathons are boring. I run marathons all the time. I’m going to train for a half marathon, and I will hopefully set a personal best.

Sorry for the long post. I had a lot to say.