Note:  I wrote this May 13th and am just now publishing it. 

Its May 13^th 2014, three months since I was diagnosed with a pulmonary embolism.  Today I ran 5 miles at 11:26 pace, just a nice beautiful spring day jog.   Two weeks ago I ran a 4-mile race, an event I signed up for the event in January.  I did alright!  My pace was 10:43, which wasn't my 9:00 pace from last fall, but not bad for only training about 15 miles in the month leading up to it.

On the internet I found some support groups for PE survivors, but quickly realized they were full of people complaining and not accepting this and moving on.  They are not joyful to be alive.

I got in the pool 7 days after being released from the hospital.  I found safe haven in the pool.  It is a therapy for me.  Honestly I didn't feel any limitations in the pool when I started back.  A few times I got light headed so I stopped.  That went away fairly quickly, but I always listened to my body.  If my body was tired I didn't exercise.  If I was working out and something hurt or didn't feel right I stopped.  It’s as simple as that.  Life is how you accept what has been given to you and your reaction to it.

Biking took a little longer because of my leg.  Ruby (my road bike) has been out 3-4 times now and I've been on the stationary some.  I feel fine and while I am not in very good cardiovascular condition I feel I could get there with some work. 

Running took longer, 2 months.   My leg would feel heavy like I was swinging a weight, and after 30 seconds it would affect my gait and I’d have to stop.  Mid-April I started running again and while my leg felt a little different, it didn't hurt and I felt the running was helping the healing process.   This whole time I've felt that exercising has accelerated the healing process.  The more oxygen I pump through my lungs the quicker they fix themselves.   I still feel damage in my right lung.  My left lung feels normal but my right lung is different, and the more I tax it the more I feel it.  It doesn't hurt, just feels like I am stretching it or its heavy.

My body and blood stabilized after being on Coumadin after about a month.  I’m down to getting my blood tested monthly.  I take 63mg a week, unless I eat a lot of vitamin-K then I increase it.   I've heard a lot of negative side effects of Coumadin and I've chosen to just take the medicine and not think of about it.  One side effect is lack of energy or sleepiness.  I take it at night before bed so it doesn't matter.  I wake up refreshed.

I found a group on Facebook and a guy’s blog.  It’s called “Running after a PE”  That group has given me so much confidence.  After chatting with my triathlete friend who had a PE 7 years ago and also looking at this website, I've learned that this is common in endurance athletes.   Not “common” like every 1-of-10 athletes is going to get it, but a higher incidence of the general population.  There are a couple of theories about this, but the medical profession doesn't really know about this and that they need to watch endurance athletes for this.  Two thoughts are:  1) We get dehydrated so our blood is thicker, and 2) resting heart rates are lower so the blood doesn't moves as fast.

It’s amazing to hear people’s stories.   I’m not talking about one itty bitty insignificant blood clot getting to your lungs, I’m talking about multiple bilateral PE like I had. 

As I looked back over this, I never feared for my life.  Maybe I should have.  Sometimes I think it’s like recovering  from a cold and I don’t need to worry about it.  But I do need to worry about it.  Donny & Riley make sure I worry about it.  They are constantly watching my bruises, bumps, and anything that might show up on my skin. 

I feel healthy.  I've only seen my general practitioner.  I think about seeing a pulmonologist because I want to know how much damage there is and what my prognosis is?   But on the other hand I don’t want to know because that might tell my mind I can’t do something, and right now my mind thinks I can do anything.  And we are all alive to live life and not to worry about things.  I want to celebrate life. 

My doctor says I need to wait 6 months to see a hematologist but I want to go now.  I want someone to agree that they need to take this filter out of me.  It’s a risk.  I do risky things, not like tackle football, but things that put pressure on my abdomen.   The risks of having the filter are greater than not having it in.    If I take it out I risk of having another PE.    If I leave it in it could dislodge and travel to my heart and lungs.  Or it could break the vein and I have horrible internal bleeding.   I noticed on a FDA website it is recommended that you take it out as soon as possible.  Once the embolism risk is gone the filter should be removed, because  the body can start accepting it and growing over it and the longer it is in there the riskier it is to take it out. 

I’m still trying to figure out why I let them put it in.  They are for people who can’t take blood thinners and my body is responding nicely to thinners.   Or for people who are in immediate danger of death, and I don’t feel I was ever there, but apparently the medical staff did.

Celebrate life. 

On Wednesday, February 12^nd I met some friends before work to swim.  My leg was swollen to the point I could barely walk but I still got in 2200 yards (never liked to kick anyway).  I went to the doctor later that day and an ultrasound showed extensive blood clots from my hip to knee.  A CT scan showed multiple bilateral blood clots in my lungs.  Shocked by a diagnosis of Pulmonary Embolus, I was told to go to the hospital immediately. 

My symptoms started 6 weeks earlier in late December when my left calf started hurting.  I’m one of the lucky ones, because the first symptom for 25% of people with pulmonary embolisms is death, yes DEATH.  In early January, I noticed limited lung capacity, began coughing up bloody phlegm and my ribs & back hurt badly.  After a chest xray (Jan 9^th), the diagnoses was bronchitis with raw bronchial tubes and strained rib muscles.  For the next week it felt like someone was stabbing my ribs and I barely slept.

 

Things seemed to improve, the pain subsided and my breathing got a little easier.  I ran a 5K on January 18^th and felt okay but held back because I was still healing.  A few days later I noticed a significant decrease in lung capacity.  I could no longer walk upstairs without getting winded, nor could I run 1- minute without spiking my heart rate to 180.

Many people told me to go to the doctor.  My January trip cost me $450 and he said it would several weeks to recover.  Few doctors in my lifetime have actually helped me heal from sickness so my biggest faith lies in letting the body heal itself over time.  I continued to swim and cycle and taking Symbicort inhaler.

In early February my lung capacity increased.  I was back to swimming at a decent pace without gasping for air.  I had my first real cycle workout in a month and was thrilled.  The next day my left leg hurt in the quad and calf.  Damn, can I get a break here?  Within a few days it had swelled and people were noticing my limp.  We’re back to February 12^th. 

At the hospital they put me on a heparin IV drip.  On Thursday morning a vascular radiologist wanted to put filter in my vena cava vein to stop any more blood clots that try and travel north.   After a few hours of research and seeking advice from a few outside doctors I agreed.   Under only a local anesthetic they put a catheter in my jugular (neck) vein.  They traveled to my leg to look at the clots and decided not to risk giving me medicine to dissolve the clots right away, let my thinned blood take care of it over time.  They placed the filter near my spine between my hips.  This all took less than 5 minutes.  I now look like I’ve taken on a one-toothed vampire.

For most of Thursday and Friday they wanted me on bed rest.  The staff was amazed that I didn't need oxygen.  Really, I felt okay, and my breathing was a lot better than a few weeks ago.  I refused to use a bed pan and insisted they let me shower. 

I slept a lot in the hospital.  I really didn't get much medical care after Thursday.  I was basically there for monitoring while my blood and clots stabilized.   On Sunday (day 5) the doctor said I could probably go home on Tuesday.  I requested outpatient and they agreed but I would have to visit daily and give myself two shots of Lovenox each day.   DEAL!!   The “daily” requirement turned into twice the first week and then once a week.  And, after 6 shots, I was able to stop.  SWEET!

So now the why’s ….. I tested positive for a condition named Lupus Anticoagulant.  The name is misleading because it has nothing to do with Lupus and it is a PROcoagulant.   It is most likely inherited from my mother, but there is a chance that this was a temporary spontaneous episode.   The symptoms of L.A. are:  leg blood clots, stroke, heart attack, and miscarriage.  My mother died of a stroke at the age 46, younger than me now, and she had 2 miscarriages before I was born.

What’s next:  I’ve got my strength back and my leg is almost healed.  It will take a while for my lungs to heal themselves, and we’re hopefully that there is no irreversible damage.  I’m taking warfarin for the next 6 months and will slowly ease back into my active lifestyle of run, bike & swim.  In 6 months I will see a hematologist and test again for any blood disorders.  If I am positive again for L.A. then the diagnosis will be confirmed and my daughter and sisters will also need to be tested.  I’ve quit taking estrogen and can never be on estrogen therapy again.   Other general advice to someone with pulmonary embolisms does not apply to me -- quit smoking and start exercising, lol.

I’m very grateful for my friends and family who got me through this scare.   Riley stepped up and was strong for me taking care of the house and Buster.  Donny was my rock, I always feel safe around him.  Leo & Bobi were also rocks for me & Riley.  I always know I can count on them in a time of need.   Amy, my bestest swim bud for providing meals and helping in so many other ways that you don’t even realize.  And my sisters, Mary & Terri, for talking me through this sharing the kind of love that only sisters can.  And for my job that provides great benefits in times of need and financial freedom.