Tis a good day

Spudz27 · 24-02-2011, 08:24 PM

My day today is one of mixed feelings, but it is good because I have some answers regarding my health. Now most are aware of my cardiac condition so will not go into detail. 4 weeks ago I had a pulmonary stenting procedure, turns out when they went in they realised there was no point to the procedure as things were better in parts but worse in others that the MRI never showed, so I posted on here how I felt like it had been a waste of my time. I was told a 4th open heart surgery was needed, but it was risky.

Today a surgeon rings me, now he had good news and bad news. Bad news is he and his colleagues feel opening me up again with all the work I have already had done is an extreme risk to my life and as such they found another avenue to at least try first, it is a non invasive cathederisation procedure. Should I agree they want to try and insert a valve called a Melody valve wich was designed for people with congenital heart defects to prolong the amount of time before surgery is eventually needed. It seems this is used mainly in children, and I will be the first recipient of the Valve in W.A, it has been done a few times in the eastern states and as such should we wish to procede a surgeon from over east will come and perform the procedure. Now all my research thus far indicates it is not a permanent fix, but may prolong it enough for them to come up with a plan of attack. Really if it may just have a smidge of possibility I will take it as the other option is to risk my life, doctors said I wouldn't live past 11 and I beat them then, but this time the reality is I could die and the thought of that is scary, I am only 27 I have a 5yr old daughter and 2yr old son, the thought of not being there for them scares the **** out of me, although as my mother put it "you have to admit you have had a good life considering", but that was because we were talking worst case scenario. I have to have a conference with the 2 lead surgeons and my cardiologist in March.

Now you might be saying how is this a good day, but god damn I have been so stressed for the last 4 weeks not knowing what is going on, now I know and also know it will be done in the next 6months, the other great thing is I might not need 3 months off work anymore, which means I can breathe a bit easier financially. So at the moment things soound good. We will see how the meeting goes.

vibe_xr6 · 24-02-2011, 09:18 PM

im not sure what you have champ, but its not cardiomyopathy is it? sorry if i spelt it wrong

TheInterceptor · 24-02-2011, 09:19 PM

Wow looks like youve been going down a long road...i wish you all the best Spud

Spudz27 · 24-02-2011, 09:27 PM

Quote:

Originally Posted by hazxr6mk2

im not sure what you have champ, but its not cardiomyopathy is it? sorry if i spelt it wrong

Nah mate. I have many different issues with my heart. You could write a book on the things I have had done since birth. I scare most doctors and my med file is 3" thick.

gcg2503 · 24-02-2011, 09:28 PM

Not sure what to say mate.

Good luck with the next meeting

Sometimes posts like this put things into perspective

MO · 24-02-2011, 09:43 PM

Good luck with it all Spudz,I've got the big C and will try just about most things after researching and talking with the medics about it.
If it buys you more time mate I say go for it.
Stay positive mate will be thinking of you.

vibe_xr6 · 24-02-2011, 09:50 PM

oh ok, yeah well good luck champ, i no how you feel sort of, im going to get mine checked on the 8th of march for cardiomyopathy as my brother died from it, and dad almost died from it, so i better get it checked just in case, good luck champ

ST · 24-02-2011, 10:42 PM

Great to hear you are feeling secure and optimistic mate, you've completely defied the odds from the age of 11 so there is no reason to stop now. Look at Stephen Hawking; diagnosed to not live past 25 yet almost 50 years later he is still here with us.

Best of luck with any and all future procedures, you've got a hugely fulfilling family life ahead of you with those peaceful and lovely 'living with teenagers' years to come

.

rockhopper · 25-02-2011, 03:52 AM

Hey mate, best of luck hey. You know i live locally so if ya need a anything just pm me.

**Kingsley** · 25-02-2011, 10:25 AM

Best of luck and I hope all goes well.

Spudz27 · 25-02-2011, 08:42 PM

Cheers guys. Got my fingers crossed that's for sure.

MNM96 · 26-02-2011, 07:04 AM

Your story should be in the epic win thread!

nuthin' fancy · 26-02-2011, 09:26 AM

Good luck to you mate. It certainly puts a lot of the petty stuff people post here into perspective.

gtxb67 · 26-02-2011, 10:04 AM

good luck, hope it all goes successfully

Spudz27 · 25-03-2011, 09:02 AM

Well finally know what is going on. After weighing up pro's and cons I opted for the new technology option. Peocedure is to be done in the next 6wks but logistically it is a nightmare for them. They have to get a guy in from Sydney, have a heart surgeon on hand incase of emergency, need special permission to allow me into a hospital etc, but that is their problem. I think the government needs to send me a thankyou letter as I have private health cover the government has to pay nothing, which means they also do not have to pay $36,000 for the valve plus all the other costs. I must say it is good to finally know what is happening.

gcg2503 · 25-03-2011, 09:08 AM

Good luck Spudz!

Fled74 · 25-03-2011, 09:15 AM

Good luck mate!

SB076 · 25-03-2011, 11:24 AM

Good luck Spud, hope it all goes well, doctors can do some amazing things these days and the recovery times are getting less and less, so you will be back on your feet in no time.

So if my health insurance goes up next year I know who to blame (joke, this is why we have insurance, its good to know people are being looked after when they need it)

dave289 · 25-03-2011, 12:10 PM

Quote:

Originally Posted by Spudz27

Well finally know what is going on. After weighing up pro's and cons I opted for the new technology option. Peocedure is to be done in the next 6wks but logistically it is a nightmare for them. They have to get a guy in from Sydney, have a heart surgeon on hand incase of emergency, need special permission to allow me into a hospital etc, but that is their problem. I think the government needs to send me a thankyou letter as I have private health cover the government has to pay nothing, which means they also do not have to pay $36,000 for the valve plus all the other costs. I must say it is good to finally know what is happening.

Hello spudz, sounds like you have a lot on your mind. you should be fine , modern technology goes a long way these days and theres some mighty fine doctors out there. Does your private health cover pay for the full amount of $36,000 or only part of it? All the best mate, you'll be fine.

Spudz27 · 25-03-2011, 12:24 PM

Quote:

Originally Posted by SB076

Good luck Spud, hope it all goes well, doctors can do some amazing things these days and the recovery times are getting less and less, so you will be back on your feet in no time.

So if my health insurance goes up next year I know who to blame (joke, this is why we have insurance, its good to know people are being looked after when they need it)

Hahaha I was whinging last week that it had just gone up by $10 per fortnight, then I sat down and realised with this surgery and all my previous stays in hospital, surgeries etc I could never in my lifetime pay back what they have payed out.

MO · 25-03-2011, 01:34 PM

All the best spudz stay positive.

stang65 · 25-03-2011, 02:05 PM

Good luck mate be strong and go in with the belief that you wll come out a new man.

terra australis · 25-03-2011, 02:16 PM

Good luck spud. As a Mum of a child with CHD my heart goes out to you.