Friday, 10 August 2012

Almost off the rollercoaster!

Hi guys!  I have an exciting post tonight.  Well it's exciting for me anyway.  Hope you like it too :)  (I will explain the Willy Wonka pic in a sec).  Just quickly though, thanks so much for reading this - all who are reading it and for people who have been commenting and sending me messages.  I haven't had a chance to respond but I will do.  But I wanted to let you know how much they mean to me.  Loz and KD today, you made my day.  Loz I was listening to this song when I got your comment and I was dancing around (as much as I could in my seat at work ;)  It's such an upbeat song, I love it.  It's a bit random but I thought I'd share it with you.  And KD thanks for your encouragement, and feel free to stalk away baby! ;)  Will respond to you both soon. xx

But for my other you may have read on here, back in January I was diagnosed with 2 Pulmonary Embolisms (blood clots in the lung).  It was caused by being on the contraceptive Pill (Coco side note: GIRLS BE AWARE OF THIS!  It's one of those things the doctors probably mentioned when I first went on the Pill, and also one of those things that you ignore because you think it's one of those side effects that is so rare and could never happen to you.....hmmm.  It can, and it did to me).  Anyway :)  (If you don't want to read about blood clots I'd stop reading now, otherwise this post may bore you sorry). :)  I split this post up into headings, so if you want to just skip to the final headings which tells you the gist of this story, go ahead.  But if you are interested, then read on....

What it was like:
So for 6 months I've been living with them, having them monitored and trying to get rid of them.  A little babbling about what it's been like so you can understand why I'm excited today:

It's been both terrifying and annoying.  I've been in and out of hospital, I think I'm up to 6 times; pathology and doctor appointments almost weekly....have had to have regular blood tests to monitor my INR started with daily, then every couple of days, then in the last little while it's just been weekly.  I had lunch with the lady who collects my blood the other day - we've gotten to know each other that well!  I get SMS'd my blood results, new medication quantities, and next blood test date.  In the first week I also had to give myself  2 injections each morning.  I'd get to work at 8am and would have already had 3 or 4 needles :(  I have my own sharps container!  Something every girl wants!  Not! ;)  I used to have a phobia of injections called Trypanophobia - I'd (literally) run from nurses holding needles and needed to be sat on to be injected.  Man alive have I had to get over that phobia quickly!  I had a regular blood test today and watched it for the first time ever.  Kind of a symbolic thing to prove I could do it ;)  (I think it was my last blood test for this whole thing).

Because of my medication, I haven't been able to drink more than 1-2 alcoholic drinks at a time since January.  I am actually not a big drinker.  I used to be, but in the last 5 years or so I could easily go months without one drink.  But do you know how much you want to drink when you're not allowed to? haha!  It's been so annoying.  There's been a few times where I want a few drinks and have to stop myself.  One night I had 2 drinks but I was sneaky and made them very large my mind I was only having 2 drinks! :P   I ended up in hospital from that. :(  When this is over, to be honest I think I'll have one night of having a few drinks (ie more than 2) to celebrate and that will do me for a few months.  I don't need to drink, I just get frustrated that I can't, and I just want to be allowed to! :)

I've had to monitor how many green veges I eat.  That's been one of the most annoying things.  This is because green leafy vegetables contain a lot of Vitamin K, which is what I have to be careful with because it helps you to clot.  I remember one day I ordered a salad at a work lunch - practically a plate full of spinach, without thinking.  I rang a friend who is on the same medication as me, almost in tears to check if I should eat it.  One night I was in hospital right at the start of this whole thing and one of my beautiful brothers and his girlfriend brought me in a home cooked pasta and salad so I wouldn't have to eat hospital food.  The salad had spinach in it and I was panicking while eating it.  I've calmed down with the whole green veges thing since but I'll never take eating spinach for granted again!

I've been on Warfarin, which is a very effective yet very dangerous medication.  It's dubbed a 'blood thinner' - it's been trying to dissolve my clots.  It's basically saved my life so I am very thankful for it.  But it has to be monitored very closely (therefore all of the blood tests).  I carry around a pink Post-It note in my wallet, explaining that I'm on Warfarin just in case I'm in an accident.  I've had to be really careful with any knocks or being hit in case of internal bleeding because my blood is very 'thin'.  I have to be careful it's not too thin also - just find a happy balance ;)  It's amazing how many people know someone who is on Warfarin.  Every person I speak to seems to have a parent/friend/grandparent/themselves who is on it.  It's a wonder drug and I am thankful to it.  It was kinda strange though when I was comparing medication with both of my grandmothers who are on it!

Random other things: I wasn't allowed to fly for a month and had to cancel a trip to Sydney to attend my sister-in-law's baby shower :(  I have to take kids multivitamins.  I really wanted to start taking multivitamins but there's a whole list of herbs and ingredients that I can't have while on this medication.  I saw a Naturopath and Chemist who determined the only ones I could go on were kiddie ones :(  I want to try a bit of protein powder and that Natures Own Rest and Restore vitamins (I think it's called) but I haven't been able to.  I can't eat cranberries and random foods like that because of what's in them.  Not a big deal, but it's just taken a lot of getting used to when you've grown up being able to eat anything you like.

I've had a few 'freak-out' moments...when you're on Warfarin you tend to bleed a bit more.  Let's just say I've had blood...where...I haven't seen blood before.  I've called my GP several times almost hyperventilating because of moments like this.  They're just side effects.  But it's scary when it happens.  It's probably because of this that my GP said I developed a bit of PTSD (Post Traumatic Stress Disorder) from this.  I accept that, but to be honest I don't know how avoidable it is.

That's pretty much what it's been like.  Apart from that it's just been extremely terrifying, moreso at the start.  The night: It all started when I had heart attack like symptoms.  I had a sore left arm and very slight discomfort in my chest and very slight shortness of breath.  The latter two were so minor that I thought I was making it up.  I had the sore arm for 5 days before I did anything about it.  I didn't think I had to worry as heart attacks symptoms are 'tingly' or pins and needles in the arm, right?

Ah, no.  Apparently not.  Any pain or tingling, associated with chest discomfort is a reason to call an ambulance apparently.  I didn't believe that so after 5 days I rang 13HEALTH for advice as it was about midnight.  They called an ambulance who did an ECG on me (for my heart).  It came back clear so I thought "great - I can go back to bed!"  One of the ambos said they should probably take me to hospital to get checked just in case.  I live life at a million miles an hour so this was quite inconvenient for me. ;)  I went along but I watched the clock all night as test after test was carried out.  Even at 3am, I thought I could still make it to work on time the next morning....if I could just have 1 hour sleep...

The next morning there were more tests, and finally at around midday they had a diagnosis: 2x PE's.  (Blood clots).  The first time I got really scared was when I was in the Nuclear Medicine department in the hospital (seriously, that name scared me enough!) to get a VQ scan.  More on that in a sec.  But this was the test that determined what I had.  An orderly wheeled me up in a wheelchair to get the scan.  After the scan the orderly was ready to take me back to my bed, but someone said we had to wait for the 'nurse escort'.  I thought: ok.  If an orderly, pushing me in a wheelchair, in a hospital, isn't safe enough and they need a nurse to stand next to me while doing this, then there's something seriously wrong.

It was just precautionary but, yeah, that's when the scare factor started :)  I have never been so petrified in my entire life.  I was fine now, I was being put on medication immediately (and being taken off the Pill immediately!) but I didn't understand what it all meant.  I kept thinking what if....what if I hadn't called 13HEALTH or what if the ambo hadn't said casually to get checked over.  What if the ER doctor hadn't ordered 1 more test in the early hours of that morning....  I was so lucky.  PE's are treatable but if I hadn't gotten treated, to put it simply, I could have died.

I feel fortunate as I had about 6 people at work who had the same thing (crazy, I know - it's so common).  Two people connected to work had died from this in the last year also and that really scared me.  But these people gave me advice and gave me some great tips and were so helpful.  I've had some good support and my family and friends have been fantastic.  But there's also the other side that I've never let anyone see.  No-one knows how I would (and still do to be honest) get so scared when I get a headache on the left side of my head.  I must have had a headache there in hospital once and now I associate that with it.  A few times when I've had a headache there, I get scared about there being a blood clot that's moved to my brain (it is possible).  And I get scared about dying.  I've had other pains and scares that have petrified me too.  And it's really upsetting when you just don't stop bleeding.  Most of it is emotional crap but at the same time it's hard to determine what to get checked out and what to ignore.

So.  This has been a really long story about PE's, hasn't it?  This wasn't even what I came here to talk about would you believe?  Well it is, but I just meant to talk about the last 2 days, not the last 6 months! :)   If you're still reading, I am impressed :)

Yesterday's scan: The standard time frame to be on Warfarin when you have a blood clot in your lungs is 6 months.  Apparently it's just standard, and the clots should be dissolved by then.  I got an appointment letter from the hospital to come and get checked over last week.  Unfortunately I was so busy, I didn't read the letter properly and didn't realise that I had to confirm this appointment.  They then sent me a letter a week later saying that they had cancelled the appointment as they hadn't heard back from me.  I rang up to see if I could make another time but the earliest they can get me in is October.  I was so upset at this.  I was so mad at myself for not reading the letter properly, and then just upset at having to wait 3 more months.  I've waited 6 already, I know 3 months isn't much, but it is.  

I went to see my GP and asked if he could take me off the medication - he can!  He sent me for a VQ scan which I had yesterday - this would determine whether the clots had gone.  This is my 3rd VQ scan so I knew what to expect but I was a bit nervous.  The 2nd one I had, I panicked and almost started to scramble out of the machine.

I'm sure Google can offer you a more technical way to describe what it is, but in my words, it's like this: it's a test that measures the amount of blood vs oxygen in your lungs (this can determine if you have a clot in your lungs).  The first part of the test involves breathing in 'radioactive stuff'.  I don't know the technical name.  But you have to breathe it in and breathe out, until you get the right amount of radioactive stuff in your lungs.  I found it really scary, as you have to breathe in this gas through a tube, and breathe out into the same tube, without taking your mouth off the mouth piece WHILE wearing a peg on your nose.  And you have to do this continually for 3-4 times.  It's kind of like being breathalysed over and over with your lips glued to the police straw, with a synchronised swimmer peg over your nose.  

You feel like you don't get any oxygen for 3-4 breaths, but I'm sure there's oxygen in the tank.  I'm a bit claustrophobic - and I found this quite scary.  The issue is, you can't just take the mouth piece out and breathe normally if you panic.  Noooo.  You have to tap the radiologist on the shoulder with wild, crazy, panicked eyes, and she has to make you breathe out into the machine and then turn the machine off before you can catch a breathe.  Apparently this stuff you're breathing into your lungs is too dangerous to breathe out into the room, but it's safe enough to breathe directly into your lungs??

So that's Part 1.  Then you go into a machine that looks like an MRI machine.  I had an MRI last year and due to the claustrophobia thing, I was so scared beforehand that I got put on Valium.  I survived ;)  Anyway the VQ scan is similar, but you don't get completely submerged into the 'tunnel' - the machine 'goes' around you but you're partially out in the open.

When I had my 2nd VQ scan in hospital, for some reason I panicked and felt like I couldn't breathe and almost started to (involuntarily) madly scramble out of the machine.  It was really scary.  I calmed myself down and stayed in there but I'll never forget that feeling.

So when I had the one yesterday I was prepared.  The place where I had it done has a really hot radiographer who I was hoping to get as I'm sure he would have made the experience more pleasurable....but no, I had a middle aged lady...she was nice :)  but she wasn't my hot doc I was hoping for.  Oh well ;)

Anyway I told her how I was the last time; we took it slowly and even though I panicked during the breathing thing, in the machine I was fine.  I even thought "wow, what was I worrying about" when I suddenly remembered.  The machine went 'around me' and then I forgot, and the lady forgot to tell me, that the machine pulls you into the 'tunnel' after it goes around you for 20 minutes.  It was like that scene from Willy Wonka where Augustus gets pulled up into the tight pipe.  I felt like I was being swallowed into a tight tunnel and wouldn't be able to breathe.  I panicked and turned my head to see the radiographer, but she wasn't there!  And before I knew it, I was in a panic, and almost scrambled out of the machine.  It sounds weird but basically you are lying down outside of a 'tunnel'.  And the bed then moves you into the 'tunnel' - the 'tunnel' is really quite small so for any claustrophobic person it would be tough.  But when you're also very overweight?  I was terrified I'd very truthfully, get stuck!  I started to scramble again but the reason I couldn't see the lady was that she was on her way inside to me to tell me it was fine.  That's all it took and once the machine stopped and I was in the tunnel and still able to breathe, I was fine. :)

Then she injected me with some radioactive dye thingy and then I had to go into the machine again.  This time I was prepared for my Willy Wonka tunnel moment :)

The results: Anyway.  So today I picked up my results.  They should be sent straight to my GP but he is on holidays (another thing that almost made me cry - another wait!) so they allowed me to pick the results up.  And this is the very exciting thing that I read this afternoon:

I am SO excited, relieved, happy, thankful.  There's still 2 more steps to go through, I have to see my GP to get taken off the medication, and I have to go to hospital one more time, but this time just as an outpatient.  And then it'll be over!  So even though I'm not there yet, I feel like I am THIS close, because my lungs are clear and I no longer have the clots. :)

So 2 more steps in this journey and I will be back to normal.  It's been the scariest thing I've ever experienced, but it's also made me realise how strong I am.  I think of Kelly Clarkson often: "what doesn't kill you makes you stronger" :)  I think of other people going through much, much worse than this - and my heart just spills out for them.  I am so lucky - this was treatable, it got discovered early enough, and I am ok.  As much as I'm excited, I am actually quite scared to come off Warfarin.  It terrifies me that I was walking around with these clots and had no idea.  I'm scared, what if I get another one?  It makes me wonder how many other people have them.  So my little Coco advice for the night is: aware if you are on the Pill..........if you are concerned about any pains, call someone - if you're in Australia call 13HEALTH - they are amazing......don't ever ignore the left arm / chest thing.  I've read about it and been trained in it before, but when it happens to you, it's easy to think you're imagining it.  All of my doctors and ambos since have told me since to never worry about being asked to be checked.  You just never know.

The Pill isn't the only cause of PE's.  I believe that Serena Williams (tennis player) got PE' many people do each day.  Friends of mine have had them from: a genetic condition, a long plane trip, an operation and an accident.  It's more common than I realised. Of course, please know that this is just my story and has no medical basis other than what I have been told.  If you are interested from a professional point of view than please speak to a doctor or at least Google a medical website! :)

But I just wanted to share with you my exciting news for the day.  I'll let you know on Thursday after I see my GP whether I am off the medication, but for now let me tell you I am so relieved that my lungs are clear.  A weight on my shoulder has been lifted :)
To celebrate I bought Mish's One Active red jacket (see photo).  Who am I kidding, I've been wanting it and would have bought it anyway! ;)  It was just an excuse but it's a kind of nice excuse.  Clear lungs + Mish jacket + Friday night + hope = a happy Coco :)   Hope you all have a great weekend xoxoxoo


  1. Wow Coco how exciting for you to finally get the all clear! As you said, it is surprisingly common to know of someone with PE's. My dad has had one in his leg since 1990 from an operation. He didn't realise until it had made its way up through his body into his lung. He ended up in hospital for a few months. He has been on warfarin ever since and has to wear a compression stocking on his leg. He unfortunately will never be rid of his clot as it's too big. My sisters and I have all been tested since it is likely that we have the same deficiencies as my dad. Protein S & C. Thankfully I got the all clear but my younger sister wasn't so lucky. She isnt allowed to go on the Pill however she has a different kind of contraceptive. A progesterone based one. All has been good so far.
    You have gone through a great deal these past 6mths but look at you now on the other side of the table with NO PE's in your lungs. Congratulations!

  2. OMG what an intense story! So glad you finally got the good news, hope everything is looking brighter for your future :) PS I have the Mish jacket too, how good is it, love it! Daisy xx

  3. phew, just a jacket as a reward? if that's all it takes, you are going to blitz this challenge.
    Now I want an oompa loompa, I mean, a red mishy jacket, too!!!!