pellicle
Professional Dingbat, Guru and Merkintologist
wait, how old are you again?Been delayed again for surgery. Planned for on Thursday (Sydney time). Reason was that the surgeon wants a paediatric anesthetist because he
wait, how old are you again?Been delayed again for surgery. Planned for on Thursday (Sydney time). Reason was that the surgeon wants a paediatric anesthetist because he
31 years old..wait, how old are you again?
A kid at heart...31 years old...
Doing my breathing exercises each day and going for walks around the ward have been to important to my recovery.
happy to listen and insert my own experiences.
I know a few other New South Welshman whom I've discussed things with, and who've had surgery and are pretty much just living normal lives.
I live a "sort of" normal life as an elderly heart condition warfarin patient
send me a "message" (the little envelope icon) here and I'll call or you can call me (don't put your number in public)
nobody in Australia drinks Fosters, except tourists.giant cans of Foster's.....
i have an identical twin aswell who escaped having a heart complaintHello All,
Found this community the other day and have been reading many of the stories and advice that has been given regarding cardiac issues.
I want to share my story and where I am at currently.
Brief history:
I have congenital heart disease and was born a twin (identical). The best way to describe it is my brother was the Arnold Schwarzenegger and I - the Dani DeVito. I reside in Australia, live a pretty standard life, wife with two young kids and two dogs. Work full time as a Service manager for disability house and studying to be a Occupational Therapist (3 year).
I have a bicuspid aortic valve (current issue)
My fight for life started early with the following surgeries:
- 6 weeks of age - Coarctation repair of Aorta
- 2 years of age - resection of sub-aortic membrane
- 3 years of age - resection of sub-aortic membrane (redone)
- 3 years of age - laryngeal cleft - repaired
- 4 year of age - fundoplication and PEG feeding tube inserted. removed PEG at 6 years of age.
- 20 years of age - resection of sub-aortic membrane (guy kept coming back!)
Thankfully after removal of the PEG i was able to live a typical life with out any long term medication. I am currently 31 years old and have started to have symptoms daily such as SOB, fatigue, palpitations and then also had the one episode of chest pain and emergency rush to the hospital (1 year ago).
Currently the pressing issues:
- My bicuspid aortic valve has progressed from moderate to severe
- 4.3 m/s peak velocity
- 70 mmHg peak with mean of 40 mmHg
- Valve area 0.8 cm2
- I have left bundle branch block and sinus rhythm (
My cross road options 1:
Surgeon says best option is to have the mechanical heart valve and living on warfarin for life
Benefit: no symptoms any more, able to live typical life and normality.
Cons: living on warfarin and lifestyle changes, heightened risk due to 4 sternotomy, extra risk if there is a need to redo the subaortic membrane if it returns (hope not)
My crossroads option 2:
Another surgeon says he would like to do a valvuloplasty to buy time (typically lasts 3 - 5 years). Keep repeating the valvuloplasty procedure until I am around 50 - 55 years old and by then I would have a tissue valve or similar. Once the tissue valve breaks down I would have a TAVR inserted or small procedures to keep repairing as needed. '
Benefit: no warfarin, no lifestyle changes, less invasive
Cons: may lead to emergency surgery if balloon overstretches and causes perforation or excessive regurgitation. have to keep repeating, may alleviate symptoms periodically, still have to live moderated life once symptoms return.
That's briefly my story. I would like to get any feedback on what living on warfarin is life? Also, anyone had option number 2 presented to them? anyone who had a valvuloplasty and how long it last on a bicuspid aortic valve?
I know I am a complex case and not looking for you to make a decision but would like to hear peoples real life experiences, the good and the bad.
Many thanks in advance
Andy
mostly ... but
nobody in Australia drinks Fosters, except tourists.
*warning*: not suitable for people easily offended
mostly ... but
nobody in Australia drinks Fosters, except tourists.
*warning*: not suitable for people easily offended
sounds like it was "win win"Sitting on a deck having a beer in Martha's vineyard laughing at that video while the wife looks at me like , possibly,there's something askew with my mental faculties....
very interestingi have an identical twin aswell who escaped having a heart complaint
he's around an inch and half taller than me, and heavier built
quite a size difference for identical twins
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