Bung Lung

The Diagnosis

May 2012. One cold morning out on a run I felt a sudden stabbing pain all over my left chest and shoulder. Stubborn, I ignored it for 3 days, thinking it was the cold air making my breathing raspy.  But it got continually worse.  The pain was so bad I could hardly breath or walk and when I finally complained to Mum (who works in the health service), she immediately rushed me to emergency, alarm bells going off in her head.

Being in ED paralyzed by pain was really scary, as things like this just didn’t happen to me. I had tubes all over my body and several needles and scans, before the doctor found my lungs were littered with cloudy like spots and confirmed I had pulmonary emboli (PE).  I burst into tears.  I felt like my life was changing forever, it was terrifying.

Treatment and a Team of ‘Ists’

I was confined to bed rest and finally given some pain meds, which left me constipated and groggy. Mum took 3 weeks off work to care for me – turns out being broke and living on her couch was a blessing in disguise.

Treated as an outpatient, I had to return to the hospital each day for Clexane injections.  Now I hate needles.  Always have.  They terrify me as much as sharks.  And Clexane needles are the really fat ones that leave bruises on your body for weeks.  I looked like a pin cushion.

Mum being her worried self also pursued to take me to every specialist doctor we could find.  I saw every doctor ending in ‘ist’ under the sun! Immunologist, Hematologist, Vascular Physician.  I also went to the Pathologist for daily blood tests – even more needles.  They all said the same thing – I was a healthy young woman with no family history of clotting and it must have been the pill.

The Cause

My symptoms presented too late after a return flight from South America to be deep vein thrombosis (DVT), which is the most common cause of PE. The only other know risk factor relevant to me was the fact I was on the oral contraceptive pill. I had been on the pill for 7 years and this was the first time I had heard it could cause blood clots.

I later found out that I also have a Protein C deficiency.  Protein C is a genetically inherited blood factor which affects clotting. This deficiency, combined with being on the pill was the reason for my bung lungs.

The Meds

Typical treatment for blood disorders is a 6 month course of blood thinners – the dreaded Warfarin.  Your blood must always have a safe level of Warfarin in it, which is between 2 and 3.  Any lower, you could clot and any higher you could bleed out.  A typical dose of Warfarin is about 7mg/day. I was on 15mg and no matter how hard I tried, could not stabilise my levels.  One week it would be 1.4, the next week it would be 4.7!

Each week I had to get a blood test to find out what the Warfarin level was.  I made great friends with my Pathology nurse – her name was Lucy Liu (for real) and she was a life saver.

Warfarin is a terrible drug. It made me dizzy and drowsy.  Further, the level of Warfarin is affected by diet, meaning no leafy greens or alcohol.  I couldn’t run and I couldn’t drink – both my forms of stress release had been taken away. To make matters worse, I have to avoid all forms of hormonal contraception. So enter moody, emotional Zoe who got her period every 2 weeks. What a nightmare!

The Turning Point

To save me from getting down on myself, my two older brothers dared me to race them in a triathlon.  This was a hilarious thought because at the time I was severely un-coordinated, could hardly ride a bike and was a terrible swimmer. However my competitive self started to tick and the thought of not only racing, but beating my brothers had me motivated enough to get out of bed and I started training.

I am a very dedicated and committed person, if not slightly crazy, and when I set my sights on something, I become totally consumed by it. This is certainly the case with me and triathlon.  In under a year, I went from total novice, to sponsored athlete and Australian representative.  The sport of triathlon literally bought me back to life.

17 responses to “Bung Lung

  1. Yay for you Zoe! Being 24 has turned out great after all- and you’ve earned the best year possible. Enjoy that black line at the bottom of the pool-it’ll be your newest best friend

    • Hey, thanks for following me. Quick question – I’m interested to know how you found my blog? Good luck with your ironman training…I’ll get there one day!

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  4. So very inspiring Zoe. A club mate of mine who was due to race at Kona this year, has also just been diagnosed with blood clots in her lungs and her dream of racing there are over for the year. I have sent her this link, hoping she can find some inspiration in your story and hopefully, get her back to the top where she belongs.

    • Hi Brett, I’m sorry to hear about your friend. It is a really scary experience and I am hearing it happen more and more often. I hope she is doing ok. If she has any questions, feel free to write to me because I absolutely understand what she is going through and would be happy to help in any way. Zoe

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  6. Hi Zoe,
    Just reading your story after doing some research into PE after I had a terrible bout with it too. I had a hiatus hernia operation a couple of years ago. I was discharged 8 days after the operation but that same night noticed I had trouble breathing and increasing chest pain. So at about 11pm I called an ambulance. When the paramedics arrived then said they couldn’t find anything wrong but took me to hospital as it was a quiet night for them. Lucky they did!

    I was re-admitted then spend the next 4 days getting sicker and sicker.
    They said there was an infection and wanted to monitor it, and had put me back on heparin/glaxane to prevent a DVT from forming. On the 4th night, whilst I was talking to my little brother, my speech became garbled and I had a seizure. I had had a small stroke! They raced me to the CT scanner and saw Bilateral PE’s and DVT’s all over me (including my brain).

    It was HITS, Heparin Induced Thrombocytopenia. I was allergic to the Heparin!
    I was placed in an induced coma and put into ICU and was not expected to make it through the night. My family were called in to say goodbye. But I was still hanging on the next morning. They kept me in the induced come for a few days.

    When I woke up I had tube everywhere, 3 drainage tubes under my right lung,
    inter-costal drains in my lungs, various lines in my arms and neck and a pej tube into my stomach to feed me (as the surgery I had whilst in the coma had caused a tear in my osophegus). A few days later I had 2 drainage tubes with collection bags attached inserted to drain the infection as well. All that plus drips for antibiotics, blood thinners and morphine. (The drip pole looked more like a mobile phone tower! With infusion computers and even handle bars to steer it.)

    My pancrius was damaged so I needed to have daily insulin injections as well as Cortisol steriods as my adrenal glands were damaged as well. But after a few months my insulin levels improved so I could stop the insulin. (The cortisol/hydrocortisone is still continuing though)

    I was in hospital for 2 months, and then had to begin the warfarin treatment once I was able to swallow again. I was on warfarin for the next 14 months. Which was terrible, as I’m sure you would know.

    After coming home, I still had the drainage bags attached and the pej tube and daily blood tests to monitor the warfarin / INR levels. After a feww weeks all the tubes were able to be removed and I was able to lay on my side again! (Can you Imagine not being able to roll over during the night for nearly 3 months?!)

    Now, over 2 years later, I am still severely fatigued, still have shortness of breath and pain in the lungs. I Every breath hurts and its difficult to sleep or concentrate for very long times. I am still only working part time and slowly increasing my hours.

    I used to run also, around 5 km’s about three times each week, including some sprints. As well as gym and swimming. But now, Its difficult to do a light jog as I just can’t inflate my lungs as much as I used to be able to. But I keep pushing in the hope that I will regain my previous fitness level, although the doctors said thats unlikely. (But they also said I wouldn’t survive and called my family to come and say goodbye, so I’m not taking that as gospel!)

    But to hear that you have had a similar experience and now are competing in triathlons (as well as being a sponsored athlete!) is just amazing and inspires me to keep pushing.

    I have a photo of all the tubes and machines plugged into my in ICU, but I don’t think I can attach it here. (Its a bit scary too so I won’t just put it up for everyone to see as some of my friends could not handle it when I showed them)

    I would never have thought of sharing my experience with PE’s and DVT’s with anyone, but seeing your blog was in a way good for me to read to feel that someone else out there knows exactly what I’m feeling and experiencing every day still. So thank you for that. I hope you continue to improve.

    Kind Regards

    Matt

    • Hi Matt, thanks for reaching out. Gosh it sounds like you have been to hell and back several times over! What a terrifying ordeal. I’m glad my blog has given you a bit of an uplift. It’s been very therapeutic for me to write about things, so if I can help other people that’s a big bonus. I’ve been really lucky with everything that has happened with triathlon the last 18 months. It doesn’t matter what it is, I hope you too can find something that makes you happy and just focus on the little improvements each day. Its so important to find the positive. Hang in there! Zoe

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