Sunday, 27 April 2014

Butterflies and nuclear medicine


Gosh, where to start.  This is a bit of an eclectic post, a little bit of everything.  And apologies first up for the lengthy rant at the end.

So, #operationhomerun is going pretty well.  I did up my rewards chart as that is what was a
My new sticker chart
major part of how I kept on track for #operationbirthday.  To be honest, there could be a few more star stickers on there...the first week / week and a half I was pretty good overall.  This past week I have slackened off somewhat.  My weighs ins so far have been good: 3.1kg loss, and then a 1.5kg loss.  Unless I pull myself together in the next few days though, I am not going to be as lucky on the scales on Wednesday.

The reason (not excuse, reason), is I've been on holidays this past week and I'm a little out
Chart and jars are back
of routine.  I have been slack with food for a few days now and have not been training every day :(  I truly have to kick my own backside though as if I want the end goal, I simply have to do the work to make it happen!  

My holidays have been pretty good...I was so excited for them.  My Christmas holidays weren't everything I dreamed of, so my main aim was to make up for it this week.  I planned 10 days of doing exactly what I wanted to do: it was a really balanced mix of family Easter celebrations, going to the beach a few times, fish and chips by the water, girly DVD night, a few breaky's and lunches with friends, I went to
Cairns and Port Douglas for the day (I just went for lunch!  I had free flights so it was like I was getting away without getting away!), a couple of boot camps, a couple of Kokoda / bushwalk treks, getting heaps of appointments done that I always put off: car clean, a skin cancer check, a massage, eye test, hair cut, all those type of things.  A couple of birthdays, some down time at home and a bit of shopping.  I was sooo excited about these 10 days off and I really needed it.

When I was in Cairns on Wednesday, I GOT TO GO TO THE BUTTERFLY SANCTUARY!  This, as you may have read, was one of my goals for this round - a mini milestone.  "Coco
In Cathy & Sarah's gym
Butter" was derived from the words 'cocoon' and 'butterfly' so it was really meaningful.  I am scared of all animals except for butterflies :)  I was going to Cairns / Port Douglas to visit a friend I haven't seen in 4 years, not to see the butterflies - it was just coincidental that we managed to fit it in and she took me there!  Otherwise I was going to try to go to the Melbourne Zoo butterfly enclosure when I'm there later in the year. It was incredible and the absolute highlight of my day.  I saw real cocoons and caterpillars and so many butterflies; and they landed on me and it was just magical!

So the week has been great - I'm feeling re-energised for work and even though I didn't get too much done at home, I've loved the week.

There has been one bit of down part of it though, that I just need to talk about, to get off my
My butterfly dream coming true!

I don't talk too much about my personal life on my blog, and vice versa.  But this is to do with my health and it's not something I'd share for example on my personal Facebook - everyone I've ever known don't need to know my medical situation.  But it's easier to 'talk to' strangers and I need to debrief, so here goes. 

I've talked a few times about the Pulmonary Embolisms (PE's) / blood clots in my lung that I had in 2012.  I'm so passionate about people being aware of the risks and have only recently started being a little bit open about this, as well finally starting to
recover emotionally.  More on that another day...

I've mentioned the recovery every now and then, but the one thing I don't really talk about, is the anxiety that is associated post having PE's.

When you have PE's, or a DVT (blood clot in your leg), you have a physical recovery period.  Generally, with a DVT it is 3 months, and for a PE it's 6 months.  Mine was 7-8 months.  Some people even have it for a life time - they have medication and constant monitoring for life.

But what you're not usually prepared for, is the anxiety of recurring clots. It's actually a 'thing'. For over 2 years now, every twinge, every ache, every mild symptom that's similar to when I first got diagnosed, makes me turn into an internally skittish worrywart.  I rarely let on
Cathy's Easter boot camp
to people.  I'll be in a meeting at work, at breakfast with friends, lying in bed, driving, anything normal, and have a potential symptom, and the anxiety starts up.  No-one would eyes might glaze over and I'll lose focus for a brief moment perhaps, but that's it.  I've never really told anyone what it's like.  

It's a new way of life.  No longer can I dismiss something so minor anymore.  To be completely frank, if I ignore something, I could die.  It's that simple.  It is unlikely that I'll get them again - mine were caused from being on the Pill, and they stopped me on that immediately - so the main risk factor is gone.  But, it could still happen.

I've had scares since, and I usually go and get it checked out.  I hate having to do this.  It's so hard to assess that fine line.  I don't want to run to the doctor/hospital with every slight niggle I have, forevermore.  But if I don't, the risk is too huge.  It is awful.  And that's how it's been for
Cathy's cooking prowess - fish tacos on Good Friday
2 years now.

I haven't had a scare for a while, but since Monday, I've had symptoms again.  It started with having a bit of pain in my right calf.  I went to a GP on Tuesday - the receptionists for both the GP and the resulting ultrasound, both squeezed me into booked out diaries and told me to come straight in when they heard what it was for.  It's so lovely that they do this - but at the same time it's a dark little cloud of reminder that it's also sort of the importance that you would never wish for...

No clots showed up on that leg which was awesome.  But the symptoms continued for the next 3 days.  The frustrating thing is that the symptoms themselves aren't terrible in the sense of immense pain or discomfort.  They're slight, just hovering in the background.  Because they're so slight, I feel over the top each time I get it checked out.

But it all came to a head finally and on Friday (ANZAC Day) I ended up in an ambulance,
and back in emergency.

It's so procedural for me now...I always find someone I know or have some connection with. This time it was one of the ambos, he's the father of a girl who was in my brothers class at school.  There's always police apprehending or guarding someone in the halls of emergency.  I always hope for the beds that have good phone reception and then I always think it's sad that I know the mobile phone coverage layout of the emergency ward.  I always want to cuddle the radiographers and orderleys because they are, without exception, always so kind. 

Gown on, cannula in, blood out, chest X-ray taken, multiple ECG's done, blood pressure taken, it's like a checklist and on the outside, I'm always very calm and quiet.

The ECG's and chest X-ray were clear...relief, and they started talking about sending me home.  We just had to wait for the blood test to come back.  It's called a D-dimer.  I don't know the medical way to explain it but I know that it's the test that came back positive and
Sexy gown
signaled to them when I got diagnosed with clots, and it's the test they do each time I have a scare.

I started to plan going home, trying with difficulty to message the two friends who knew I was in there...(I had one of the bad phone reception beds).

The lovely intern who I had been dealing with came back, I assumed to tell me that it was of course negative and that I could go home.

"Hi, so unfortunately the test is positive."

I felt the blood immediately drain from my face, my entire body.  I knew exactly what this
Love this girl
 could mean.

They moved me to a ward as they rang through to organise a VQ scan for me.  I couldn't have picked a worse time to need it.  It was the night time, of a public holiday, leading into a weekend.  I thought that I'd have to stay in hospital till Monday when that department opened again, but they thought it important enough to call in the on call doctor and technician from their days off, to come in and warm up the machine
and test me.

It was now time to tell my family what was going on.  I don't like to worry them, and when this was like I think my 25th visit in 2 years, you tend to think they may be a little over receiving a text to tell them where I am.  But they each called me immediately and of those who were actually in Queensland at the time, offered to come in.  I said no, that I was ok, but one of my brothers and his girlfriend came in anyway :)  And my beautiful friend Courtney had already turned up to sit by my bed. <3

I got transferred from bed to wheelchair and wheeled up to the Nuclear Medicine department.  There's something that really scares me about that department.  It sounds so full on and it doesn't help being pushed into it, in a wheelchair.  I hate having to be in a wheelchair, I feel so helpless.
Part 1

I had the department to myself and the doctor and technician, dressed in shorts and a cap from being called in :) were just lovely.  I hate having this scan done.  There's 4 parts - firstly they get me to lie down and breathe in this radioactive gas.  They peg my nose to ensure I breathe in and out of the gas tank.  For someone who's slightly claustrophobic, this is not fun.  I managed to not panic and just got it done.  They then hover a little machine on top of my lungs to measure the gas reading inside me.  When there's enough gas inside me, I move to Part 2.  Part 2 is almost like an MRI but not as scary, but still, another machine that's not good for claustrophobia - I lie in it and it circles me and takes scans.  Part 3 they then inject me with the radioactive stuff and Part 4 is the MRI type machine again.

After it had finished, I sat in the wheelchair, shivering under blankets because of how cold it is in there, waiting for the doctor to read my scans.  And I realised something amazing.  I don't know when it had happened - somewhere in
Doesn't compare to Cathy's cooking :)
between that fateful day two years ago and trying to lie still in the machine this night, but I suddenly realised I was ready for whatever they told me.

Two years ago my life changed forever - it fell apart and I've only in the last month been able to start putting it back together.  I guess I always imagined that if it happened again, that I would deal with it the same way as I did back then - in any way I could.  That everything would fall apart and I would scrape through using any ounce of strength and resilience I had left.

But on Friday, for some reason I had this quote going around and around my mind for a couple of hours: 

"At any given moment you have the power to say: this is not how the story is going to end."

I dealt with it as best I could two years ago.  That's all we can ever do.  But this time, IF I had more clots, I decided I was now older and a lot more wiser and I could cope with it better if I had to.  I knew what I would be in for.  I started making mental preparations of what I would do, and even started visualising myself dealing with it all in my stride.  I even started practically planning how I'd fit in almost daily blood tests around boot camp before work and silently congratulated myself on keeping the sharps container I got given two years ago as there was now a point to not throwing it out.  I promised myself that if I had them, that this time, I would deal with it a lot better.

I was calm and collected and ready.

The doctor came to see me and told me that the test was all clear.


Ok - I was not expecting that!  I was so ready for bad news!  I got wheeled back to my bed
Emily & I bushwalking earlier in the week
and told my family and Court that my lungs were clear, which meant no PE.  The VQ scan only tests lungs, so I wasn't necessarily out of the woods as I could have a clot elsewhere, but it was great news.

The ward doctor came to see me and told me I could go home.

I was thankful I didn't have a PE of course, and happy I could go home, but I was confused and asked the doctor to clarify something before I left. What I wanted to know was, is it dangerous if I have a clot elsewhere in my body? Meaning, the D-dimer was positive, I have a history and symptoms, but my lungs are clear, so should I be worried if they're elsewhere?

The doctor had the worst bedside manner. Before I got my question out, he talked over me, raising his voice condescendingly and immediately said he thought I was overreacting and did I need to talk to someone (counsellor). I was astounded. I said very calmly that I don't believe I'm overreacting, I said I have a history, I
Kokoda treking
have a week of symptoms and I had a positive test. I'm simply asking, before I go home, if it's dangerous if they're elsewhere?

He leant over me in the bed and got really close to my face and said that HE could have clots. My family and friends (he pointed) who were in the room could have clots. Anyone could, there comes a point where they have to stop testing. He said again that he could have clots but he doesn't have symptoms so he's not going to do unnecessary testing! All the while speaking down to me.

I said (still calm) that the thing is, I DO have symptoms. I said I wasn't even asking for more testing, I just wanted to clarify if I should be worried if they're somewhere else in my body.
Sarah and I at boot camp
The lungs are just one part of the body.

He said again that I was being very anxious and said he'd go and check my records and come back.

I was reeling. Apart from the fact that I felt humiliated in front of Court and my family, I was so angry. Of all the times to accuse me of being anxious. I've spent two years being internally anxious and barely telling anyone just how much, and this was probably the most calm I had been that entire time. I was calm in speech and had collected my thoughts, and
Second Kokoda for the week for Leisa's birthday / ANZAC Day
as I always am, had been so patient, hadn't cried or made a scene, not said a word or asked anything all day/night.  All I wanted was a little bit of medical info before I left, which is normal. 

I was so proud of myself at how I was dealing with this but ironically he just made me feel like I was a screaming drama queen. I was so calm and had just one question. At one point I had to say to him "this could be a matter of life or death so of course I am wanting to find out more" because he was making me out to be someone I wasn't.

He took so long to come back that a nurse came in and asked why I hadn't gone home and I said I was waiting for the doctor to answer a question. She said he was doing a shift change and wouldn't be back so what was the question? I explained, but she too was like him and put words in my mouth! She said "so basically you're telling me that you want a full guarantee that you don't have clots, you don't have Cancer, you don't have anything at all,

anywhere in your entire body and won't forevermore."

I was so shocked, I was saying nothing like that and where did Cancer come from?? I explained again that no, that's not what I was asking, I just wanted to know is it possible to have a clot elsewhere and if so, should I be concerned? She went on and said that I could die tomorrow of a heart attack! That any of us young people in the room could have Cancer! She brought up all these other conditions that were off topic. And not a great thing to tell someone who's lying in a hospital bed.  

It was so strange and upsetting. She eventually answered me but didn't really if that makes sense? She said that the D-dimer can apparently be positive from other causes eg. if I have any inflammation. That's all I was asking. I guess it has me a bit skittish because that's the test that was positive last time. I just wanted a bit of medical information and I left just feeling confused instead of relieved. All of the other medical professionals were amazing - doctors/nurses/paramedics/radiographers etc. Just a shame the last two were the ones I
Weight loss rewards!  3 magazines and a new nail polish!
really needed to help explain it to me.

I left the hospital and for the past two days have been just confused and feeling down and blah.  To be honest, superficially I've been more upset about the conversations at the end rather than the potential clots!  I am so thankful that I don't have clots in my lungs, and thanks to the Tuesday ultrasound, I don't have one in my right leg.  But the positive test and symptoms have me a little concerned that I have one elsewhere.  Clots can travel - so it's a bit scary.  I'm seeing my GP as early as I can get in to see him so I'll see if he can shed any light. I'm sure I'm fine and having clear lungs is awesome news but I still need to find out more.

Anyway! So that hasn't been very fun and I'm sad to say I've let my eating be affected by it

all. You do not want to know what I've been eating... :(

But, tomorrow is back to routine and it's a new day, and I'll pick myself up and get myself back on track. The rewards chart is active and it's gonna happen - I won't let a little set back affect that. I may not have had many stickers last week but I'll pull myself together and make sure that changes.



  1. Oh. Wow. That must have been so horrible. I think you are coping remarkably well. I hope your GP gives you a better answer and those last two professionals were probably just exhausted from a long day and wrongly took it out on you. So glad we got to hang out during out 10 day break and that you got to play with butterflies!!!

  2. So glad you got your break and hanging out with butterflies is so much fun. :) And I completely understand about your experiences at the hospital. I've had several of those over the years both directed at me and also at my Mum. I've got into verbal battles for my Mum a few times and I've come to the conclusion that these professionals see this stuff so much that they forget that we don't have it as part of our daily lives as they do. They become disassociated to the fact that we are not the same person who was in yesterday or the day before or the day before that who was asking the same types of questions or who was concerned. You have every right to ask those questions and when it comes to your health you should never feel that any question or concern you have is not valid. Don't give it another thought about being off track a little either you are living your life and life is full of ups and downs. You are living it awesomely!

  3. Glad you had an awesome break. Sorry to hear 2 medic's were insensitive gits. Hope your own DR gives you the information you need to proceed without the added stress of not having the information you need.

    So glad you don't have another PE!!!!!

  4. love reading your blog Kate, find it very inspirational and then at the bottom of your second last blog you posted a pic of your rewards. There on the front cover of the running mag is a girl in my class doing cert 3 and 4 of fitness, such a cool thing she had no idea she was on the cover either until I showed her my screen shot of your photo. :-)

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  6. Kate,

    I have just found your blog and what can I say, you are amazing. So inspirational and motivating. Have shed a few tears watching one of your video's. How horrible having to deal with those people! You did well to keep calm. Happy to hear you don't have another PE XXX