Stephen's Journal

Happy 4th July to everyone across the big blue Pacific pond :)

Got a call yesterday to say I have to come in today, surgery is for Wed now, I thought it was thurs .. have woken up with a little bit of a sore throat, I hope this isn't going to throw a spanner in the works. I guess will will see.

So many heartfelt thanks to everyone on here for their support, kind words and their own shared stories that help us all to get through such a dark time and know we are all not alone. I can do this, as you guys have done before me.

Hopefully I might be able to log in later once am down there and settled in. :)

Have been slack with keeping track in here for a little while, I had some head in sand time, I hope everyone is all good ..

Since meeting my surgeon I have been getting ready, but also trying to avoid the issue .. Had a fright at the pre-op clinic last Tues when my surgeons registrar tells me they have me booked for that afternoon! Thankfully they stuffed up a couple of tests and the next person was bumped up - phew!! So at this stage I am booked in for next Wednesday for the op on Thurs, will get a call on Tues as to what time to arrive .. though there is a chance I could get bumped for any emergencies.

I am riddled with a fear I have never known before, which is total foolishness I keep telling myself, am fully aware of the rational science of it all, yet it cannot overrule the irrational fear I feel. Its like a mouse in a science lab trying to solve the impossible puzzle so it can return to the safety of its cage.

So the waiting guillotine has been taken away, I even allowed myself a whole 30 seconds of having a little bone rattling sob after I got the call, which was like a much needed emotional release valve, before sucking it up and putting on my fake brave face.

Just got to prep a few more meals, worry about my fur babies at home alone in the middle of winter while I'm away .. and then show up I guess. Then game on and the battle to recovery with a better quality of life that is the dangling carrot to be achieved.

Sounds so simple in theory. lol

Thought I would do a nice copy of my OHS poem for my surgeon, maybe put it on a wall for others to read and know they are not alone in their feelings we all share. <3

Just a heads up to any Aussie people on here who have a surgery coming up, don't forget about the election. Polls open on the 16th for early voting up till election day on the 2nd July .. Those of us due for surgery can visit an AEC office and enroll for the postal vote roll and they send your ballot to you by post. My op time-frame is from the 13th June till the 4th July, basically the same time-frame for the election, so who knows what day just yet I'll actually go in .. This is much easier, less hassle and no chance of getting fined for not voting. :)

Feeling a little like a caged animal today, so many head miles I just had to stop and quiet my mind by writing a little poem .. Am no literary master by any means, but thought some may get it so I am sharing with everyone, hope it is not too dark for anyone. :)

I wanna run, I wanna hide,
leave it all in the dust, behind my stride ..
Get outta here, away from fear,
for certainty is suddenly not so clear.

Brave face we show, to those we know,
Or the fear we know, we would surely bestow.
Good cheer we share, to ease their air,
for those we love, for those we care.

So we go for the ride taken in another’s stride,
to get it done, we must not hide,
Its up to us alone, to fight the fear,
Leave a dark time behind, and back to our lives so dear.

So I mustn't run, I mustn't hide,
I must face up to what's inside.
Been here before, I know the score,
Just remember a positive mind, is not such a big chore.

Well I met my surgeon today, I liked him immediately, very easy to talk to and quite cheeky, I like cheeky, I'm cheeky .. we will get on well. Phew, thats a bonus. So am on the waiting list, it is usually 3-6 weeks he tells me, the admissions dept of the hospital will let me know when they have a date, just have to have a CT done locally and the pre admissions clinic for the surgical assessment prior to the actual admission date.
The big big bonus is I'm having a porcine valve, yay - insert happy dance .. John even said something about it being a larger one that can if need be replaced, can be done so by TAVR and not through the chest .. more happy dancing!
All in all I came away feeling pretty good about the fella who is going to put his hands inside my chest and hold my heart in them, then work and weave his magic to do what he does so well.
Am also quite a little terrified of what is to come, what can I do .. C'est la vie!

Bloods all done last week, had a TOE done this morning, angi next Wed and the surgeon the following Monday to be put on the surgical wait list .. Time is flying so fast but feels like its at a snails pace too.
TOE wasn't too bad, worst part was the cannula going in, after that I remember very little, other than being told at some point I have a low tolerance to drugs and some strange nonsensical txts on my mobile I made back on the ward .. Note to self, leave mobile phone with a trusted person for sedative procedures in future. Passed the sip test, had a nice cold meat salad and an OJ, plus the coffee I was dying for all morning.
Now the ball has started to roll the knot of anticipation has loosened some and am a little more relaxed and resigned for what is ahead, have done all the research I can and am pretty much prepared to just roll with it all now and just go with the flow.

Almost 2 weeks till I see the surgeon, the wait is a pain in the bum its like living under a guillotine .. but alas life must continue, so in an attempt to do just that I took my sister on a Living Heritage Tour of the tank stream for her birthday, entry is by ballot only and funnily enough the day the cardiologist said "its time", I also got an email saying I had won the chance to purchase 2 tickets to see the tank stream 5-6000 entries this ballot and only a couple of hundred places, so woohoo! :)

I finally got to stand on the same sandstone creek bed that watered the fledgling colonial town of Sydney .. Though today you have to go 3 meters below the city to see it, in a humble sandstone covered storm water drain that belies the historical value and importance to the city above.

I love history, I love life and I love my sister .. all 3 on 1 day was a pretty damn good awesome day out .. here is a couple of pics of the day.

If only my surgery was a few more years away .. Our local district hospital is getting a massive nearly 400 million dollar upgrade. Who know's, they may even do OHS surgeries locally one day too. Quite fond of our local hospital, had all but 2 of my surgeries there, lost my tonsils as a child, my appendix as a teenager, both my nieces were born there and all my great nephews, mum had most of her treatment there and they saved my life when I had cancer. Have been seeing my immunologist there for 25yrs too. We also have family that have worked there for years,

Just thought I would share a couple of vids of the upgrade, it is pretty impressive .. https://www.youtube.com/watch?v=gpBEBtgWEAI ... https://www.youtube.com/watch?v=UgUyxtMykqw&feature=youtu.be

Well its been a while since I posted, thought I better update my journal. 11mnths ago after I saw my cardiologist and discussing options for AVR sometime as close to 50 as possible. Turns out that 42 is as close as possible. I love my cardiologist, straight to the point as always, after sending me my echo results to read over beforehand, he say's "so I guess, you have read between the lines?" .. I was thinking a year or two .. "It's time" he says. That was 4 days ago.

We had both agreed last year that a porcine valve was the way to go, as the mechanical had too many downsides re medication and lifestyle. Turns out that the surgeon may now actually want to do a mechanical one though being much younger than the 50 year mark we were aiming for due to future replacement issues. It was difficult to focus mentally, an instant subdued panic, cold sweat in an air conditioned office and a feeling like I had just walked away from a rather nasty motor vehicle accident, I was in shock basically the whole day. So many questions now that only a surgeon can answer. Guess that will have to wit till next month when I see him.

Now am booked for a TOE and an angi to take along to the surgeon at RNS in Sydney, feeling pretty confident in my cardiologists choice of surgeon for me, Dr John Brereton head of cardiology at RNS, started general surgery in 1983 and moved to cardio-thoracic's in the 90's where he has specialised ever since, particularly with aortic valves. That's plenty of experience for me.

Now the wait begins, with all the anticipation of a school child awaiting the holidays, but with all the dread of an adult awaiting a tax bill. I think I'll run with my inner child for a while, plenty of time to be an adult when I have to be and it all gets serious. So for the next month am not going to worry, finally won a place in the Tank Stream ballot (The tank stream for my international friends, is Old Sydney Town's first water supply with cisterns carved into sandstone during our colonial days, now buried deep under the city streets) which I have entered year after year as they only have tour twice yearly on a ballot system. I will take my sister for her birthday with me.

With so many inspirational stories on this site it truly gives me the encouragement and the strength to face what is coming, I may not comment very much but I do pop in from time to time to have a read of other peoples journey’s and experiences. Many blessings to you all.

Hi everyone .. just like to say hello and I am glad I found this site .. have just found out I have congenital heart disease, bicuspid aortic valve, aortic stenosis and regurgitation .. Its a bit of a bombshell at first, was a stunned mullet for the first day.

Have researched all I could into the pathophysiology of BAV and think I have my head wrapped around the issue. Having gone though a battle with cancer in '07 have been down this kind of road before so I'm no newby to surprises of this type. Just got to go with the flow and not fight it is all.

Another 4 weeks till my first appointment with a cardiologist and can get a clearer picture of where it all stands .. have been told the stenosis is moderate and the regurgitation is moderate to severe.

Anybody with a stenoic, regurgitative BAV that may have some advice to share at all, would be appreciated.

Thanks Guys. :)