My Brokendown Heart

OK... OK, so I didn't get back to this yesterday as promised.... I was having a rest day

Anyhoo, by Fridayish (the days are already blurring together..!) my drip went from BLEEPING when I moved to also BLEEPING when I hit the button and started to withhold the drugs - arrrggghhh!!! They ended up taking me off it and putting me onto an oral pain killer which wasn't quite as effective (almost, but not quite) but at least it meant I didn't have to get a nurse to drag the damn machine around behind me whenever I needed to go to the loo (woo-hoo!). Somewhere around now was also when they pulled out the drainage tubes, which was very unpleasant, but since one of them in particular had been sittting at a really crappy angle and causing quite a bit of discomfort, it was a relief to have them gone.

By this stage the only thing I was still hooked up to was these nasty things in my neck (I felt like a Rastafarian!) which they were still using to inject stuff and take blood samples. At least I was able to shower and move around fairly freely, which was lovely - even if the cleanliness of said showers really wasn't what I would consider up to scratch for a hospital ward! Anyhoo, by this stage I was obviously feeling better since I was able to bitch ad infinitum about the absolutely appalling food!!! OMG - that stuff was nasty!!!

On Monday I got kicked out of the cardiac ward down to the renal failure ward because I was no longer hooked up to the monitors and they needed my space. They had told me that morning I would probably be discharged and had sent me down for a Doppler, but after waiting around most of the day, I figured it looked like I would be in for another night (would have been nice if someone had thought to get back to me!). Once I was in that ward I was pretty much forgotten about and there were 24hr nurses for a couple of the other patients, but as far as "heart" stuff, it really wasn't their responsibility. That night was one of the worst since the first! There was an old dear in the bed next to me who kept carrying on all night and keeping us all awake (even the ear plugs didn't help much... and sure didn't do much to stop the light blazing in my eyes everytime they turned her light on to attend to her). I think I got about 2 hours sleep and was not a very happy camper.

The next morning (Tues) the cardiac doctors came around to assure me I was definitely going home around lunchtime which I was MOST relieved to hear. By 11ish they had brought in a massive bag of drugs for me to sign for to take home and disappeared again. BF and I were sitting there wondering when/if they would be back to "discharge" me. After about an hour I got jack of waiting and decided to leave regardless. If I was supposed to have signed out, then perhaps they should have been a bit more vigilant about communicating with me!! I had been expecting to get a stack of information on how to look after myself and my incision once I got home, but nope.... nothing!

The trip home was pretty smooth and I can't tell you how wonderful it was to be back and eating REAL, TASTY, DELICIOUS, NUTRITIOUS food again!!!! The next day I went to my GP to fill in all my scripts and to have her check my wounds... all of which were fine. I also rang the cardiac clinic with some questions and told them how I never received any post-surgery information - which they were horrified to hear. Apparently because I had already had a sternotomy, they figured I didn't need any cardiac-rehab info.. despite the fact my last open-heart surgery was over 31 years ago when I was 5 years old!! Anyway, they put that in the post yesterday and I got it today.

SO - all up, things went well and I'm OK. Most of the staff were fantastic, but sadly there were some real oversights and things that I was not very happy about. Yes - things were a bit chaotic due to renovations and the new cardiac ward being established, but at the end of the day, the well-being of the patient is paramount and excuses aren't good enough (those who know me well enough will be delighted to know I am intending to write a "strongly worded letter" to the appropriate authorities).

I go back to Flinders on Monday for a check-up and then after that I see my cardio (Dr Disney) at Wakefield for a Doppler. It will be interesting to see how it compares to Monday's. Meanwhile I will probably be taking it a bit easy on the laptop until after Christmas since I don't have it set up very well to use in my current condition, but I'll still be checking emails and such at regular intervals.

Still feeling stiff and sore (all I could tell was that the truck had an SA number plate!!), but otherwise pretty good. The meds are keeping the pain under control and I've been sleeping fairly well, which is an enormous help. Looking forward to feeling better each day!

YAAAYYYY!!!!!!

And I'm so sorry it's the first blog since the surgery... my dear BF posted a big update and for some reason it never loaded, so we're not too sure what went wrong there. Seems there's been a few gremlins around in the last week chucking a spanner or two in the works - but the good news is, while they've been expending energy on freaky little things, the surgery went well and again - I AM HOME and feeling SOOOOOOOOO much better for it!   (got back yesterday afternoon - Tuesday, 16th).

OK, where to start. Went in Wednesday morning and was in and sedated pretty quickly, so I never really had a chance to worry myself too much. As far as I know it was over and done by lunch time and I was in ICU fully sedated and ventillated at 2pm but I think I remember waking up sometime just after 4pm with the breathing tube still in, but that was removed fairly soon afterward (and I remember wanting to write something and they gave me one of those ekto-sketch things, which was so big and clumsy... but maybe it's easier to hold on to?). I rang BF around 8pm to let him know I was OK, breathing on my own and "with it".

The first night was pretty rough as the pain meds they gave me really weren't working very well and my nurse kept disappearing, so many times when I woke with pain there didn't appear to be anyone that close by (which got me pretty cranky!!! ). They came in to do an X-ray at 6am (Thursday) and sat me bolt upright to slide the plate behind me, then once they had finished and I was almost passing out with pain - begging for something to help, I was told the doctors wouldn't let me have anything else for another 2 hours!!!! (apparently I had already been given as much as they "could" give me). Of course, me being the fiesty little control-freak I am wasn't having any of that and demanded I be put on to a self-medicating drip - as I believed I was supposed to be. By this stage I had a new nurse on shift who got it arranged ASAP and within half an hour I was already feeling relief and doing much better. Perhaps not surprisingly, it was my back that was giving me the most pain.

By midday I was told I was being moved to the cardiac ward... until the bed disappeared, so then I was shuffled off into a corner with a few other people also waiting for beds and had to wait there for an hour or so until I had a bed again. Meanwhile the drip was working wonders and my pain had gone from a 8-9/10 to around a 2/10. Big improvement!!

Finally got to the cardiac ward and found out there was no aircon because of all the renovations (for a new cardiac ward), so was really suffering with the heat and humidity, but another lady there (she had needed an ablation) gave me her small pedestal fan and hunted down another for herself. In fact, she and her family were all very wonderful in the time we spent together and the remainder of Thursday was fairly uneventful and I managed to get a reasonable amount of rest... when they weren't waking me up every 5 minutes to check my stats and give me drugs!

Friday the drip started playing up and every time I moved it would bleep VERY loudly (annyoying the crap out of all of us) but at that stage it was still keeping me drugged, so that was OK.

Anyhoo.... am starting to feel a bit sore from the typing, so I'll have to update the rest of my stay later (don't want to be a goose and over do it). Suffice to say, I'm doing really well now I'm home and will get back to this tomorrow. For the moment I think I need to get up and move around to loosen things up a bit.

Stay tuned for the rest of the story - and again, sorry we weren't able to keep you all posted - but those gremlins have been playing merry hell.

A  : ) 

Am having a very fun day today.. have already had my pancakes for breakfast and am looking forward to my roast piggy lunch!

Just a very quick blog today... to busy enjoying myself and indulging on Tim-Tams and cookies & cream cheesecake!! :P

A  : )

Well enough of the doom and gloom... I'm still feeling very optimistic and calm and looking forward to life after surgery - which will hopefully be full of energy and promise!

Already I have a number of goals in mind, both big and small, across all spectrums of my life.

HEALTH - to begin with I can't wait to be able to get out walking again! As part of my recovery, I am hoping to build on this to the point where a good, hard, 30-45min walk becomes a part of my everyday life once more. From there, I can't wait until my sternum is healed enough to begin working with weights - I have really missed the strength I once had and long for the day I can be toned and strong once again. My main aim is to be fitter and stronger by my 40th birthday than I have ever been! I think 3 years should be more than enough to make this happen

WORK - my long term goal is to get a Bachelor of Nutrition and Dietetics with the aim of working as an accredited dietician in my own practice... however that is quite a few years down the track and it won't be until 2010 before I can even begin study. In the short term, I'm hoping to get some work doing whatever I can to get some cash in the bank (woo-hoo!) and help pay off some of the mortgage. For some reason, I'm feeling very drawn toward waitressing - I think I'd enjoy the social interaction after so many years of isolation, plus it's busy, which makes the hours go quickly and all that running around will help knock off some of the extra weight I've put on while waiting for surgery. Still, at this stage I think I'd be happy with anything I can get my hands on!

PERSONAL - Sadly my social life and friendships have suffered enormously over the last few years, as my energy levels have constantly diminished to the point where even catching up for a cuppa has become an epic effort   Hopefully with both extra energy and cash flow, I will be able to get out and about to start building new friendships and get back into the things I miss so much - my dancing, art, walking, etc.. There's even a local archery group which I would love to check out! It will also been wonderful to be able to do all the things with my partner that we've been missing out on. Climbing mountains, taking long walks, going to social events together, cooking up a storm on the weekends... and just hanging out because we want to - not because I'm too exhausted to do anything else

Meanwhile I'm very excited about the new house we're building and can't wait until it's finished and we can move in!! And even more so, I'm SOOOOO looking forward to having room for entertaining and having family and friends stay. YAY!! It will also be nice to be able to put up our Christmas tree next year, since this will be the second year we've had insufficient room to do so. I've missed that - I LOVE Christmas!!!  

So, the future is looking bright and I can't wait to get this new lease on life to make the most of it. Hopefully by the time the next surgery is due, not only will they have much better technological advances to make it far easier, but we will be in a place that is much more settled and secure - both physically and financially.

To quote Big Kev... "I'm excited!!!"   

OK - I know it's highly unlikely, but unlikely doesn't = impossible. In the event that something goes horribly wrong, I'd much prefer everyone to know what I would want happen, rather than trying to guess (or worse still, enforce their own wishes).

And as far as "the worst" happening, for me that is not death. I'm actually pretty much at peace with that concept - and while it's certainly not something I wish to face for many, many years yet (there's still SO much stuff I want to do), it's not something that scares me. What DOES scare me, however, is ending up in a vegetative state - unable to move or communicate. Again, that's a highly unlikely outcome, but strokes do happen with this kind of surgery and that really is the very worst possible outcome I can think of.

So... let's put it out there. If the very worst does come to pass, what then? Well, I for one don't want to be left lingering indefinitely with all the social finesse of a carrot. I'm happy to be given sufficient time for my body/brain to recover, but if it becomes apparent that all the time in the world isn't going to help, that I'm never going to be more that a shell of a person in a hospital bed.... then I'd much rather be put out of my misery and depart this mortal coil. Why prolong both my suffering and the suffering of my loved ones? I would rather they be able to mourn my passing and move on, than have to live in limbo... waiting for the inevitable to happen... waiting to get their lives back... waiting... waiting...

Waiting sucks!

To be honest, should that most awful scenario ever happen - from this surgery, or indeed, anything else - then I wouldn't want things to go on for more than 2 years at the absolute most. Less if it's clear things will never improve (but give me at least 6 months!). And for all the do-gooders who want to start waving their religious beliefs in my face, please don't. While I respect your right to believe what you want, please also respect mine. I do not believe in religion. Your arguments hold no weight with me. If it comes down to a life not worth living, then I would rather no life at all.

Let's face it - death is inevitable for us all eventually, so why is everyone so determined to try and avoid it at all costs? You can't. I would rather accept it and be done, than to remain alive as a parody of all that I was. To me that is a greater tribute to life.

So there it is! Again.. probably much pontificating about something I'll probably never have to worry about - but like packing a suitcase for a weekend away; I'd rather have it and not need it, than to need it and not have it.

Meanwhile, cremation has always been my departure of choice (with my ashes buried beneath a tree... perhaps a birch, which is my favourite), however those very clever Swedes have come up with a fascinating new alternative (bless my viking rellies!); they have devised a method where they cryogenically freeze your remains, dip them in liquid nitrogen and then vibrate them until they crumble into a fine powder. I'm hoping that by the time I need to avail myself of such a service that it will be available to me.

Very cool - pardon the pun!

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  : )