My Brokendown Heart

Well gee... the days are slowly ticking by and I'm still feeling rather calm and at peace with the world. I had a little shop on the weekend with my advanced birthday pressie cash (thank you Aunty Pam & Uncle Trev, Carol & Don) and bought some rather large (size 18!) tops to wear post-surgery. Everyone I've spoken to who has "been there and done that already" suggested button up tops would be easier than T-shirts (no lifting arms above the head) - although I'm still at a bit of a loss at how one puts both arms through the sleeves of a button-up top and pulls them on without some kind of contortions  I guess I'll figure it out..! Maybe I can put them on backwards and just wear them open at the back like a hospital gown  ooh-la-la!

I had my dental appointment yesterday and that went pretty well. The sensitive teeth which I thought may have had cavities were actually a result of me being far to vigorous when brushing (I do like to be throrough with my cleaning!). Apparently a couple of them sit slightly forward, so when I brush they kind of get hammered. Anyway, the lovely dentist gave me some Tooth Mousse to apply regularly which helps rebuild the calcium and enamal of the tooth (and keeps them looking like I just stepped out of a salon ). Hopefully things will be much happier in a couple of weeks. There was one tooth she thought may have the beginnings of a cavity... there was a dark patch on the x-ray, but she also thought it could be my sinus. She took it down to a whatever-you-call-it-root-canal specialist today for him to have a look at, and while he also thought it was probably sinus, they want me to go in for a spanky full-face x-ray next week - just to be on the safe side. Oh for joy. No wonder I don't have any brain cells left!

I got a free toothbrush though! (woo-hoo!)

Otherwise I've been trying to take things fairly easy so I don't run myself down and leave myself susceptible to becoming sick.... although the weekend just gone was pretty full on! We had friends visiting from interstate and indulged in WAAAAYYYYYY too much good food, wine and frivolity. Perhaps not the most relaxing weekend - but heaps of fun!!.... and at least I know the trip to the chocolate/confectionary factory isn't to blame for my tetchy teeth  

Still - it's always a such pleasure to catch up with good friends  and I have another one coming to visit soon.....!

Well I've got it all in writing now! My letter from Flinders Medical Centre arrived this week and they haven't changed their minds... they're still determined to ruin my birthday

So, it looks like rather than being shipped off to Royal Adelaide, they'll be performing the surgery at Flinders Medical Centre... although given it's a teaching hospital, I'm crossing all my wiggly bits that I don't end up with the work experience kid!!!  I was also building my hopes up that I'd get a swanky private room with Foxtel, spa-bath, and a mini-bar, but it looks like they've got standard wards for the general unwashed - D'oh!! Mind you, with enough pain meds I probably won't know the difference anyway; hell - as far as I'll be concerned, I could be kicking back in the Carribean drinking fruity cocktails with Bradd Pitt and Johnny Depp (woo-hoo!)  ....or maybe not...!

In the meantime they've booked me in for a Pre-Admission Clinic (oh my!) on Friday, 5th Dec, where I'll spend an entire fun-filled morning having x-rays, blood and urine samples taken (hopefully not at the same time!), an ECG, and then a meet-and-greet with my "team": the anaesthetist, cardiac doctor, physio, cardiac nurse and ....oh dear.... a cardiac surgical research person..! Well that's just as bad as a work experience kid!! And it appears my surgeon is steering clear. Probably trying to avoid me after choosing such an auspicious date for my surgery.

Chicken!

Oh and after that I get to visit the ICU ward. Golly gee, doesn't that sound like fun?!  

Of course, prior to all this I can also look forward to a trip to the dentist. How lucky can a girl get? Not lucky enough to win a substantial amount on her lotto to pay for said dentist, that's for sure!... although hopefully there'll be nothing more required than a clean and check (that back tooth doesn't really hurt at all... especially when I'm not eating sweet treats and cold stuff..!).

<..sigh..> I definitely think it's time to have a good chat with the Karma Fairy.... I just don't think he's been paying much attention to his work lately - probably too busy downloading porn to concentrate on the important stuff  

Honestly. It's just so hard to find good help these days!

So who wouldv'e thought that being cleft in twain and torn asunder would be such an appealing prospect... but I guess it's all a matter of perspective now, isn't it?

Ever since getting my surgery date I've felt like a massive weight has been lifted from my shoulders (wish I could say the same for my chest ). I keep waiting for this high to end, but so far it just keeps on keeping on.  Kinda funny coming from the girl who has always loathed, detested and HATED hospitals  Anyway I guess after feeling so craptacular for so long, it is now just a massive relief to finally be seeing the light at the end of the tunnel. Finally I can start making plans for my life again, rather than living in eternal limbo... waiting for the next appointment... waiting for the next set of test results... waiting for things to get "bad enough" to justify surgery.

Waiting sucks!!!

I didn't realise just HOW much it was starting to get to me. I think while I was still waiting for them to actually decide when to go ahead with the surgery, I was able to hold it together pretty well - I didn't spend too much time thinking about it - but once they decided they were definitely going ahead, I just wanted to get it done. Up until September I was still doing OK - but when my Oct/Nov window started getting smaller and smaller (which was the original target - and I needed a minimum 5 weeks notice) that crazy little control freak in me started losing it. Each day that passed had me getting more and more depsondent and upset. I was breaking into tears at the drop of a hat - especially on the bad days  And of course, not being one to wallow in self-pity, feeling miserable made me feel even worse..!

It was funny though, talking to a friend going through some similar emotional issues... I knew that a "happy pill" wasn't going to be my panacea.  This wasn't a depression that was going to be fixed or alleviated by something out of a bottle. I needed a date. I needed certainty. And I was right.

I'm pleased to say I'm feeling SOOOOOOO much better than I have in quite a while. Sure - I'm still fighting fatigue and SOB and dizzy spells (and all the rest), but the little control freak is happy again because PLANS CAN BE MADE!! (That poor little control freak really does need a few long therapy sessions ).

Anyway, for now I'm just sitting back, happily thinking of all the fun things I'm going to be able to do again.

....I've already found a dance studio nearby.... 

So what better way to celebrate your birthday than getting so drugged up that you can't remember a thing and then waking up a day or so later in a strange bed with no recollection of what went on? Well that's exactly what I've got planned for my 37th... only it's probably not going to be nearly as much fun as it sounds! I'm actually scheduled to have my valve surgery!!!   Yep, 10th December!!

I don't think the poor lady who gave me the date really knew what to say when I told her it would be my b-day (heh heh). She had been so very lovely all those times I kept ringing, harassing them for a date, so I really felt for her - however when she offered to reschedule, I assured her that after waiting 5 years for this thing to happen and having been told it would be Oct/Nov this year, I was more than happy to take it and I really couldn't ask for a better birthday present (clearly I need help! ).

Personally I have a sneaking suspicion the surgeon was "getting his own back" for all those phone calls (!) and was thinking "how bad do you want it?.... really?.... how about for your birthday?... mwahahahahahaha.....!!!!" because I'm pretty sure we discussed my birthday at my appointment with him at the start of the year and how I'd be happy if it happened before then. Hmmmmmmmm.....!!!! 

Still, it's a date and it's set and I'm very happy. I'm sure at some point I'll start freaking out about it all, but then I've also had 5 years of living in limbo, feeling like crap, and working through all the "surgery anxiety" issues, so maybe it will only hit me on the day.

But the thought of all those impending "bad hair days"...... now that's scary!!!!

Oooh.... this is all a bit exciting and daunting.... my very first blog!!! (please forgive me if I am hopelessly out of my depth and have no idea what I'm doing).

The purpose of this blog is to track my progress over the next few months, as I face my first pulmonary valve replacement (PVR)   With family and friends scattered across the globe, and ever diminishing energy levels, I figured what better way to keep everyone in the loop! And who knows.... maybe someone else who is going through the same thing (or knows someone who is) might find something useful as well.

For those of you who have heard it all before, please feel free to snooze now...... 

For the uninitiated, I was born with Tetralogy of Fallot; a simple explanation can be found here: http://www.nhlbi.nih.gov/health/dci/Diseases/tof/tof_what.html  Over the years my pulmonary valve has gradually worn out and is now leaking quite severely, which is why it needs to be replaced. It has been 30 years since my last open-heart surgery, so the whole process is quite scary - although I am now at the stage where I am looking forward to getting it done and getting my life back on track.

Since finding out I would need a PVR (2003), my general health and fitness has declined to a point where I now struggle with most day-to-day tasks. The simplest things tend to leave me short of breath, standing up often triggers dizzy spells and I am having thousands of arrhythmic episodes each day which also add to my shortness of breath (SOB), dizziness, fatigue, and chest pains, making life difficult in general (and let's not forget the fluid retention! Ugh!!).

Fortunately there is a good chance that a new pulmonary valve will alleviate many of these symptoms and once again I will have the energy to go out with friends (woo-hoo!), get back in shape, and even return to work (something I have missed terribly - sad, but true!).

In the meantime, I will be tracking my progress here....  I can keep you all enthralled with how I am feeling as I travel through the highs and lows of this process, and updated on the latest news from my medical team (and how I will continue to stalk my surgeon until he gives me a date!!!!!!). Hopefully noone will be bored to death in the process..!

Oh, and I also hope to find my way through this whole blogging process and make it a whole less painful for all of us!! Please bear with me  : )

Cheers for now,

Anna  : )