I'm a 31 yo survivor of open-heart surgery to replace my failing aortic valve and a 5.2 cm aneurysm. I am the proud new owner of a mechanical heart valve, a pacemaker and an 8 inch incision. AMA

Latinamerica, Scandinavia, UK, France, USA... WHO ARE YOU HIDING FROM?

My son is also in the chest zip club (a different case from yours) and we can only hope the best for you.

hahaha, no one. Just the life of the child of an anthropologist.

Your son is a very brave person!

Having had a brush with your mortality at such a young age & with the perspective you have, what sort of life or philosophical advice would you give to people in your peer age group?

Thank you, I think it's hard to say. I would say discovering a serious heart disease in 2015 really changed my perspective on life. I measure my life pre-2015 and post-2015. I think back to my very naïve uni days, and how I took that time for granted. The notion I was carrying around a dangerous aneurysm has very much impacted many aspects of my life, I gradually stopped exercising, even biking that I could do very well in 2014/15. I slowly started walking 2-4 hours a day to compensate for my inability to lift anything heavy, or run/swim. This summer, I swam a single lap slowly, to give you an idea of how severe stenosis can impact your life. I also had several scares in airports where having to run for a flight resulted in the taste of blood in my mouth. The constant fear of my aorta tearing up/dissecting is something I learned to live with.

I think post-surgery, I see how frail the human body is, and think healthy people are extremely lucky and maybe do not know how lucky they are. My sister just ran a half-marathon in Shanghai for Nike. .. . .

Congrats on pulling through!

thank you!

Have a long history of family heart disease, my father was an extremely athletic and fit individual who had a heart attack because of our family history. Do you think something like this is a thing I should be wary of/keep an eye out for?

Hello! I'm so sorry to hear. The good news is, if you were to have any connective tissue disorders resulting in a thoracic aortic aneurysm, your doctor would be able to hear it (a murmur sound) with his/her stethoscope.

As for heart attach, that can be caused by many different problems: electrical, rhythm, congenital heart disease, etc. If heart attach runs in the family, I would definitely go to your doctor and mention this. They might be able to prescribe something.

Congrats on the new valve. Which flavour of rat poison did you choose to take for the rest of your life Coumadin or Marevan?

I'm on 3 mcg (rest of week) / 6 mcg Coumadin (Tuesday and Thursday). I have the teal 6 mcg Coumadin pills and break them into two for the days my dose is 3 mcg. This dose might change though.

How long do you need to be on medication for, and how long before you can resume regular physical activity ?

I'm on Coumadin for life. Mechanical heart valves can cause clots. That's why my blood needs to be thinned. But I've got the newest mechanical valve so my blood thinning regime is the lowest approved. It can be as low as 1.5 a normal person, that is nothing

I'm hoping this doesn't get buried.

Your situation and mine are really similar. Seven years ago, I went to my cardiologist just before my 18th birthday for a check-up, and he found my aortic valve failing and a massive aortic aneurysm growing in my ascending region. I had the surgery a month or so later and had the valve and root replaced, BUT I ended up having complications (blood pressure issues, cardiac tamponade, an induced coma) that led to me staying in the hospital for a couple months.

My question is, after all that's happened, where is your emotional state? Do you feel any new sense of priorities or focus, or is life pretty much continuing as usual?

Yes, I have been off work for a month and talking to my colleagues it's kinda hard to relate to their issues about promotion or similar. I feel a bit excluded/unable to relate.

Can you heavily workout? If not, will you ever be able to?

Not currently, they told me even 1 year out never again to lift weights / do bench presses. I'll live with that though. The sternum never fully heals in some cases, so some people never return to sleeping on their stomach for instance.

Hey man, I'm 26 and had my aortic valve replaced with an on-x valve in Feb 18. I go to the gym regularly and have no issues lifting weights and doing bench presses. Just take it easy! Happy to talk through my experience more if you want, it can be rough not knowing what to expect

Wow man, that's amazing!!!

What happened with regards to the cost to the NHS for your treatment? I can imagine it being multiple tens of thousands of pounds.

Did you have medical insurance to cover it? Did the European health card the E111 come in to effect?

Do you know the overall cost of your treatment in the UK?

I had my surgery done in the USA. The care was brilliant, the bill is $150K. I'm waiting to see what my insurance covers.

For those doubting the risks of OHS, I invite you to read survivor stories from people who lost their jobs after OHS from brain inflammation: https://www.nytimes.com/2000/09/19/science/saving-the-heart-can-sometimes-mean-losing-the-memory.html

Well this is terrifying. Im in the bicuspid club as well, with an added dose of stenosis and regurgitation. I'm due for a replacement in a few years. Hope for the same outcome as you! Stay well.

I had a great experience (short of needing the operation that is). I hope yours goes well too. See if you are a candidate for minimally invasive surgery. I only have a three inch horizontal cut between ribs on my right pec and another to the artery for bypass near my leg. It’s much quicker recovery and well worth it

As for that article...I had a job interview two weeks post surgery. Got the job and relocated a few weeks after that. Go with a positive attitude, technology and youth are on your side 👍🏻

Hear hear, my own brain was back to normal within 10 days. But the article was nevertheless an example of an extreme complication

You should be fine. I'm back to normal too within 10 days of surgery. Some people I know, complain pump head is still affecting them 4-6 months out. So it can happen and I see no reason to hush hush

What’s your favorite ice cream flavor?

Haha, strawberry? In America they have so many flavours, I've tried some very interesting ones.

Hate asking but do you ever considere suicide? Had a brother who lived with something like you have killed himself at 19. Just trying to see if i could better understand his mindset.

Sure, and they say post-op depression is very real/dangerous. There's speculation a fair few celebrities (won't name them out of respect) committed suicide after OHS. One of them was a wonderful man.

I'm so sorry to hear about your brother!

​

Pre-op: Well, I don't think the condition per se made me want to kill myself. I did feel it was unfair/ challenging / scary. Some people might find the diagnosis to be too much. It was very lonely living with it, especially seeing friends do amazing sport performances. It also affects your sex life and energy.

Why did they give you a mechanical valve vs. a pig / bio valve?

I have a heart problem and they shy away from giving mechanical valves because of the lifetime meds and complications. They typically do mechanical when youre older.

I will need a valve repair again but apparently that is reccomended over a mechanical for someone of my age (27). However mine is my pulmonary valve.

Thank you, it was the surgeon's recommendation. Mechanical is the default recommended choice for < 50 yo. The risk of reoperation is ≠ 0, and with my fast heart rate I feel I would wear out tissue valve quick. I have nothing against people choosing tissue valve, and the INSPIRIS RESILIA seems like an awesome choice. Also, 2019 is the year TAVR took off, so maybe there will be no mechanical valves in the future. On the other hand, anticoag therapy is improving and soon there might be FDA approved alternative to coumadin. I am so happy not to need another surgery though.

How much was your medical bill in the UK NHS system ?

Something like this in the US, even with insurance, would cost a fortune.

And congrats on your surgery. Glad everything went well

I had my surgery in the US (Johns Hopkins). Bill is so far 150K. I have insurance waiting to see how much it will cost me. In the UK it would have been free .

and an 8 inch incision

What's it like to finally have something longer than 3 inches?

Seriously though, well done and I'm happy you've been given another chance at life!

Hehe thanks

Can I ask what it feels like exactly afterwards? My son is 6 and he had OHS 3 times. The most recent only 6 weeks ago. He just says “it hurts a lot”

He also had an aneurysm, which was the reason for this most recent operation.

I'm so sorry to hear about your son. The first week I had very tough pleuritic pain from fluid around lung. I also had sharp back pain that improved with heat pads. I still use a heat pad 3-4 times a week. Amazingly, this surgery is done so well, most incision pain disappears within 8 days. Nerve pain, however, can linger for months. It is important to be aware. I still have nerve pain in my abdomen that I feel when I move out of bed.

I have this same condition. Only 4.8 now. Can you tell me what it felt like in the lead up to your surgery. Did you have any indications it was getting worse? Anything you wish you knew or had done ahead of time?

It's really dependent on the person, some are asymptomatic up until surgery. I personally just noticed I couldn't run anymore, but it was also the fear of dissection that made me not run, so hard to tell. However: good news for you, I felt great even at 4.9, it was until autumn of 2017 I started to *really* feel the decay, like wanting to go home and nap after work instead of going out with friends. I had to nap to get rid of palpitations. Increasingly, from 2017--> 2019 I started doing a daily nap/daily lay down. I also remember feeling breathless when walking into work (2017/18). I made sure I lived right next to my job. So yes, near the end I was a different person to who I was in 2015. When I moved to America in 2018 I had an irradiating pain in my left side, I had two options: go to hospital or board my plane. I boarded my plane, went to the airbnb and slept for 2 days. After that, summer of 2018 I had lots of palpitations and PVCs, but bear in mind the climate of Maryland is extremely humid and nothing like what I was used to in EU.

US News and World report rates Johns Hopkins as the best general hospital in America. What did you think of your experience there?

It was a wonderful experience, top care. Great team of nurses, surgeon super nice to me. I am so happy I did it there.

I’m glad you are alright! I’m quite surprised to see this pop up when I just received a letter today for another MRI. I have been diagnosed with an aortic aneurysm, which, along with my rare, unnamed heart condition I was born with, doesn’t enable me to do much. My last checkup, my valve was sitting at 5.4cm (I’m a big guy), and I can only presume it’s worse. I’m similar to you,

I’m only 25 and am really ignorant to the heart issues and as much as I try, it’s hard for me. I also got out of breath quickly and couldn’t do sports with the other kids...

The cardiologist is monitoring it closely and I’m always advised to lose weight and hope it gets better, which is another tough story that I won’t go into. And like yourself, I’m just scared about it all. Depression on top of that really makes life a struggle and sometimes I just feel like there’s no way forward...

Anyway... my question is: did you have a supportive group of family/friends around you to help overcome the arrogance and such, and to push yourself into getting things sorted related to your aneurysm?

Also, what advice could you give to someone in the same boat as yourself to help overcome the fear and enable them to actually better themselves before it’s too late? Thanks!

Hey! The good news for you is the bigger the frame, the larger the aneurysm is allowed to be before surgery. However, as le848dave said, I wouldn't delay. 5.4 cm is large enough for intervention even in Europe (where they're more conservative than in the US).

First, a question to make this all legit. Do you know why they requested that you get dental clearance for the surgery? My understanding was that the dental issues are only implicated with a tissue value, not a mechanical one.

Second, are you me? Not even kidding, I have a bicuspid valve and had surgery to repair a 5.1cm descending/aortic arch aneurysm at 31. I was lucky in a lot of ways, though. I didn't have severe stenosis, and so they left the valve intact. I might need surgery a couple of decades down the line to replace it, but that may be a minimally-invasive surgery by that time. I also got really lucky in terms of complications. I did get a-fib about two weeks after the surgery and ended up back in the hospital for a couple of days, had a trans-esophageal echocardiogram and cardioversion, but I felt a million times better after that. I really think that adding the valve to the surgery makes an enormous difference and is a huge added stress on the body, probably explains a lot of the differences in our experiences.

Finally, have you noticed anything else unusual about yourself health-wise? I've always wondered if any of my relatively minor health quirks have anything to do with my bicuspid value, and if I share them in common with any fellow bicuspid but non-Marfans/Ehlers-Danlos people. I've always been super prone to stretch marks, and even the lightest scratch inside my cheek will always turn into a canker sore, and these both seem to suggest some sort of connective tissue problem, though I've never found a defined disorder of this description.

I had my surgery in America. They're very worried about liability and being sued. If I contracted some infection from bacteria in my mouth the hospital could say the dentist did a bad job or without dental clearance it'd be hard to say why you didn't sort these issues out before surgery. Basically: the surgeon needs to know you are ready to go. No room for uncertainty.

Wow, that is an amazing journey you had! I am happy they were able to spare your valve. That is wonderful news. Complications seen to be so unique to each person. Some people have a really easy OHS.

I'm gonna do genetic testing in the future. Because of the size of my aneurysm, it was not deemed important before surgery. Now I might go look

Part man, part machine, all chemist.

Hell of a thing to be going through.

Have fun with the clinical trials for the warfarin alternatives.

What would you be missing out on as far as your dietary restrictions going foward?

The dietary restrictions are not too bad. No grapefruit juice *at all*. It interferes with coumadin.

Other than that: consistency in diet, high Vitamin K foods need to be eaten consistently. This is kale, broccoli, spinach, collard greens, parsley, as well as cabbage (I'm missing one or two). I am told those must be eaten in very small portion unless I adjust my dose and decide to eat them consistently (daily; rest of life). I currently do not eat these foods, or avoid them if they're in a take out. If I move country, and the green is more present in the local diet, I might need to adjust my medication. I currently eat what I want really. No kale salads, but I'm not missing those. Need to be careful with takeout green smoothies too, which I used to love (Pret)

Hi, thanks for sharing your story, do you happen to know why they wait till the aneurysm is a certain size?

Like why isn't something smaller than 4.5cm large enough to operate on?

What type of symptoms do you look for, or did you notice really early, and do you know if healthier eating and exercise affect this type of issue over time?

You mentioned shortness of breath growing up, but were you heavier at that age? Or just had trouble breathing?

Thanks.

It's a risk curve. Operating too early you have more risk from the surgery than from the problem. Until recently I had zero complications from the aneurysm. I only started to feel tired jn 2017, so that was 10 years prior to knowing