At a CROSSROADS. (31 years of age)

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Meanjellybean

Aortic Mechanical valve - Carbomedics 23mm
VR.org Supporter
Joined
Mar 7, 2021
Messages
95
Location
Australia, NSW
Had my surgery on the 3rd of June.
Carbomedics valve 23mm was what my surgeon went with in the end.
On the bypass for 2hours and 25mins but took over 7 hours in total due to the scar tissue and how "stuck" the heart was with surrounding structures.

On day of surgery I was sedated the whole day as in post OP ICU my levels were not stabilising and lactate was 7.9 mmol/L The drs unable to get a clear picture of why and the medications being pumped in were being passed by the body to help rectify this. The Doctors immediately rushed in for a exploratory TOE were they found air in the pericardium and had notified the surgery team that there was a chance to have to reopen due to some bleeding (haemothorax was the words my wife heard as they were ushered out of ICU).. thankfully I stabilised after several hours and the second op was not required.

I was extubated on the following morning but was showing consistent ectopic and low blood pressure with heart rate of over 110 persistent. But very glad to be out of the critical zone.

Been a steady uphill climb with 5 days in ICU and each day having it's own challenges and successes. The main thing that stills gets me, is my extreme nausea (no matter how many anti sickness meds I take) from the pain meds or even just from magnesium tablets as the back of my throat is so raw from the post op Toe.
I had a laryngeal cleft repair when I was 2 years old and it did not take to the rush of the second TOE. Hopefully the barium swallow tomorrow will show it is just sensitive and raw with no perforation but I am managing mushed diet currently, so most likely ok..

The win I am getting is able to open back my lungs by simple standing and sitting in the chair, to small laps around the Unit and persistent breathing exercises. It means I dont need the oxygen support day or night.
Today I was transferred back to the ward and will let you know how I go the as I feel fit.

Thanks for the ongoing support heart warriors.
 

tom in MO

Well-known member
Joined
Jan 17, 2012
Messages
1,623
Location
MO USA
Good to hear you finally got the surgery you needed. Even better news is that it's over and you are on the mend. You've got a great attitude, things should go well.
 

Superman

Well-known member
Joined
Oct 3, 2009
Messages
1,201
Location
Grand Rapids, MI, USA
Repeats are tough, no doubt. Glad to read you’re coming around and avoided being RE-opened!

Have them do blood work checking for pancreatitis. I had severe nausea after my last OHS. Pancreas did not respond well. Settled down eventually, but I lost a lot of weight in the process. Anything sweet tasted awful.
 

Meanjellybean

Aortic Mechanical valve - Carbomedics 23mm
VR.org Supporter
Joined
Mar 7, 2021
Messages
95
Location
Australia, NSW
1 week update post surgery

To sum up the week with one word would be: progress!

I am still amazed at the way the body can heal, recovery and adapt to such difficult surgeries. I am so thankful to my surgical team and the care I received in ICU to the ward.

I am still in hospital as my INR is sitting at 1.7 and a few more checks but if all looks good then hopefully Saturday I will be going home! Currently on a 4mg dose of Coumadin.

Doing my breathing exercises each day and going for walks around the ward have been to important to my recovery. I remember over hearing a Dr quiz his resident students about the levels of lung care and made the comment that: those in the lung ward who where smokers would do better at opening their lungs back up because they would walk outside the hospital for their smokes in comparison to the patients who didn't smoke and chose to stay in their beds and not walk. Next time I visit a hospital I will take a mental note that the distance from the lung care wards and parking lots is possibly calculated.

One of my highlights was staying up with some of my family and the nursing staff and watching the NSW Blues smash the QLD Maroons in the origin (Aussie football) ! I was able to put it all on hold and just enjoy the moment. The cheeky nurse asked if I needed endone to help with the pain (on top of my normal pain relief) incase I cheered and made a big motion which I gladly accepted 🙂🙂

My wound has not really started to heal and is being checked daily but I have a dry dressing on it and it's looking promising. They prescribed my antibiotics as a prophylactic.

Spoken to the pharmacist today who explained warfarin and its interactions. I must say that the information and details pails in comparison to this site and the wealth of experience on here.

Thanks if you tuned in to read.
 

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
612
Great news! So glad to hear that you are on the other side and well on your way to recovery. There are always a few bumps in the road and it sounds like you certainly had some bumps in your early recovery.


Doing my breathing exercises each day and going for walks around the ward have been to important to my recovery.
Excellent! Those breathing exercises are so important. And so important to move and move often.

Hopefully you get your INR in range soon so that you can go home. :)
 
Last edited:

cldlhd

Well-known member
Joined
Apr 9, 2014
Messages
1,397
Location
Levittown ,Pa 19054
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)
Elderly? You're only like what 5 years older than me? Then again you Aussies live tough lives - boxing Roo's , wrestling Crocs and guzzling those giant cans of Foster's.....
 

pekster11

Well-known member
Joined
Apr 20, 2011
Messages
177
Location
Chester, UK
Hello 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
i 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
 

cldlhd

Well-known member
Joined
Apr 9, 2014
Messages
1,397
Location
Levittown ,Pa 19054
mostly ... but

nobody in Australia drinks Fosters, except tourists.


*warning*: not suitable for people easily offended
That was very entertaining. 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....a bit off topic but it was a good day- first thing we were out in a charter boat catching some striped bass, bluefish, sea bass etc. Then a trip to the beach. Never been here before but enjoying it.
 
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