Short version: On Oct 16th I came into hospital (Johns Hopkins) to have my aortic valve replaced with a mechanical On-X valve via open-heart surgery. As a consequence of the trauma my heart took, I went into total heart block (3rd degree AV block) and had a pacemaker fitted. I spent 15 days in hospital. Thanks to the pacing wires inserted into my chest during the surgery, I was kept safe from an otherwise dangerous complication (complete AV block) that could kill me. The truth is, none of the doctors could tell me what my true heart rate was after the surgery, as even turning off the pacing led to weird effects. Even the electrophysiologists couldn't tell me what my real heart rate was, but it was likely <40 or some other absurd number, and therefore dangerous. The pacing wires kept me alive until a pacemaker was fitted on day 5.
Outcome: I want to thank a wonderful team of surgeons, doctors and nurses for getting me through this ordeal. I am now at home recovering, am on blood thinners for life and will enrol in a new study to see if mechanical valve patients can take alternatives to Warfarin [can't disclose more].
My background of how I came to discover heart disease: I had no diagnosis from birth, except I was always out of breath as a kid and never did the sports other boys could do. In 2004, at age 15, I was living in Latin America due to parents work. I contracted typhoid fever (don't ask...) and was on antibiotics for weeks. One positive outcome of this was that I saw a doctor, who heard a heart murmur and advised me to get it checked. Fast forward to 2007, I was living back in Scandinavia as a senior high school student. A chance illness led me to a local hospital, a murmur was once again heard, and some imaging tests revealed a bicuspid aortic valve, as well as the suggestion of light aortic insufficiency. The bicuspid valve is a common type of congenital heart defect (2% of men, 1% of women), in which two of the three parts of the healthy (tricuspid) aortic valve are fused together. This type of CHD is usually associated with Marfan or other types of connective tissue disorders (BUT NOT ALWAYS). Bicuspid valves do not pump blood as efficiently, and so usually result in calcium build-up and restricted flow (stenosis) as well as regurgitation (blood falling back; source of murmur sound). I was advised to get my heart checked in the future...
I moved to England shortly after in the autumn of 2007 to study chemistry. In my supreme ignorance about heart disease, late teenage/ early 20s arrogance, and quite frankly fear, I didn't get anything checked in Oxford, and I carried heavy suitcases (25 kg) back and forth Scandinavia and the UK. A ticking time bomb was building up inside my heart...
Fast forward to 2015 (8 years without medical check ups), after uni and a stint in France, I was pursuing a PhD in London and in denial about my heart condition. I chose to join a gym hoping to finally get fit. Within weeks of a bit of lifting, I developed a dull but constant chest pain that would not go away. I eventually called the NHS number 111 and spoke to the operator. I had to strongly ask him not to send an ambulance, so I walked over at midnight from my home in Borough/London Bridge to the A&E at St Thomas Hospital (in front of houses of Parliament). My complaint of chest pain was taken very serious, and I was seen around 3-4 am. Lots of racket that night, all kinds of stab wounds etc.. Upon hearing a very loud murmur, the doctor alerted the consultants on call, and most of his colleagues also came by to listen to my murmur. They decided to do an echo on me in the entrance part of the A&E... I was sent home... At 6 am, I get a call from the same consultant, to come back to St Thomas and bring some essential items of clothing, cell phone etc. I was terrified. Upon return, I was fast-tracked to a CT scan at 6:30 am, because there was a fear I might have a small tear in my valve. I was kept in observation until the morning team arrived. Luckily, there wasn't a tear, but talk of emergency surgery persisted. ... Morning consultant arrived, gave me a full diagnosis but luckily told me I was not going to have surgery yet... Diagnosis: A 4.9 cm aneurysm was present in my aortic valve, and I had moderate/severe stenosis (restricted flow) from a moderately/severely calcified aortic valve. The aneurysm is a dilation in the heart valve from the extra work the heart has to do to pump with a bicuspid (sick) valve, and results in a narrowing of the valve and constricted blood flow.
I was monitored closely in the UK after that until 2018 when I left to America for research position. I found a cardiologist here and within 4 months, I was speaking to a surgeon. I received the email on a Friday night, I was told to see a surgeon as my aneurysm now measured 5.1/5.2 cm, and I had severe stenosis. From the surgeon's perspective, I was a problem. I was told in the US surgery in a small-framed person is recommended for aneurysms of 4.5 cm. I was given 2 months to sort out my affairs (I lived alone in the US, my family all in Europe), and get dental clearance for surgery.
Life lessons: For me, surgery was the worst/most painful 15 days of my life and I would not want to go through this again. Maybe I'm a weak person [excuse the language] but I got about every kind of complication possible. Violent temperature swings (chills then fever), lost my voice completely (it has taken 4 weeks to sort of return), complete heart block, and 2 blood transfusions. Some people have a very easy time with OHS, but I really struggled. Age is on my side, so recovery has been quick, nevertheless. By week 3 I was walking 1 hour stretches outside, by week 4 I was seeing friends and going grocery shopping.
The blood thinners have been an added complication that required being on heparin drip and have my blood checked some days up to every 4 hours in hospital. While in hospital, I had a lovely line in my neck that was connected straight the vein that goes to the heart, which allowed them to extract blood easily, but once that was removed out of infection fears, I was being poked every 4-6 hours for 7 days. It was very painful. Outside of hospital: The diet for warfarin has been easier than expected, I avoid 6 kinds of greens completely and life goes on. Warfarin is no big deal, and I love the ticking sound of my On-X valve. I recently bought a wrist watch, to complement it.
The surgery has given me a second chance at life, and I feel supremely grateful for this chance. It's made me worry less about petty things, and helped me see the big picture. I hope it helps me be a better person than before, or at least to not take things for granted. If you have a murmur, get tested. If heart disease runs in the family, get tested please. Aortic dissection is a scary, but real prospect with high mortality rate. Having a sizeable aneurysm and not getting it treated surgically can lead to aortic dissection.
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. .. . .
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.
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.
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.
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.
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.
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.
What’s your favorite ice cream flavor?
Haha, strawberry? In America they have so many flavours, I've tried some very interesting ones.
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.
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.
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
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.
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.
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).
Similar story here! I was healthy and in college (was 21yr old) very active... Although I knew something was wrong and was being told I was perfectly fine for years... After my GP prescribed me Xanax for my "anxiety" for a couple years, I finally went and saw a cardiologist. I had normal rythm/ECG but a small murmur. To be sure the cardiologist scheduled an echo. The echo revealed enlargement in one of my lower atriums, but no reason why. At this point I was terrified and didn't understand what was wrong (neither did the cardiologist).
After 2 months of the worst anxiety I got a full MRI with contrast. Two days after that I was told I had a massive Atrial Septal Defect (ASD) in my upper atrium. And my left lungs oxygenated blood was returning to the wrong side. This caused one side of my heart to be extremely dialated (stretched) I need open heart surgery to close the hole in-between the Chambers, and re-route the incorrect flow.
After a few opinions with different hospitals/surgeons I chose Yale in CT. And I will say I had the best experience there!
I was in ICU for a day, and in step down unit for 4 days after. Took about 3 months to be 80% recovered. And a good year to get my full confidence back.
I'm 29 now, have a great job as a big data developer, and have a house and beautiful golden retriever :). I still have some anxiety issues related to my heart flare up occasionally, and I feel like it will always haunt me in that aspect. But I do what I can to deal with it. I take nothing for granted!
Heart disease is a terrifying road to go down, I would never wish it on my worst enemy, the anxiety alone can read you apart. The best thing you can do is stay focused and stay healthy, and live each day as it's a blessing!
Also I've always been a Reddit lurker, finally made an account for this post! If people want I can share proof
I'm so happy to read your story! You're a survivor. Best of luck in your future. You have lived to tell the tale.
Aortic stenosis/bicuspid valve person here, too. I’m not sure if I’m encouraged by your post or more scared. Hah. I’m 27 years old. At birth, the doctors said I’d have to have valve replacement by age two. At age two, they said I was good but would need one by age 5. At age five, I was good but was told I’d need one by age ten. On and on and on it’s gone. Each year, the cardiologist has said “not now but eventually.” Still hasn’t happened yet but I know it one day will.
I’m married with a one year old daughter and I hate that I have this, as you said, “ticking time bomb” inside of me. But this is the hand I’ve been dealt so I’m going to try my best to handle it. Thanks for sharing! I really appreciate it!
What was the prognosis after the surgery? Have the doctors said the valve will only last for ___ number of years? Or do they expect it to be good for the rest of your life?
Thank you, and congratulations on your daughter!
I will meet surgeon next week to be discharged. Then I'll have follow up. Too early to talk about valve lifetime.
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 .
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)
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!
Does it feel any different? Have you heard your heartbeat, does it sound any different?
It's hard to say what's different. Early days. Ask me 12 months post op. Heart is still adjusting to all the changes
Why did the UK consultants not recommend surgery? What was their rationale?
You had aortic stenosis with post-stenotic aneurysmal dilatation of the ascending thoracic aorta to 4.9 cm. These are very significant findings. The aneurysm was guaranteed to grow significantly given the cause and age. Aortic stenosis is one of those things that can cause sudden death.
All I can say to your UK consultants is, “WTF”
UK guidelines say 5.5 cm aneurysm before surgery. Different views. Different priorities. I was in the midst of a PhD they wanted to have me finish before doing it. Surprisingly the deadline they gave me (2020) before risk grew too largd turned out to be very close to my actual surgery
Out of all the places you were treated, where do you think provided you with the best medical care? Obviously the US was probably the most expensive, but I mean best doctors, procedures, equipment, etc.
The care I received was expensive, yes, but also better than what I saw in Europe. Far more efficient, far quicker and on point. I still think the EU system is better overall, as no one is excluded.
I had the same surgery in August. How much did you hate sneezing while the sternum was healing. Did they give you a pillow to hug when you coughed? What was the worst thing you remember when you wake up from surgery.
Actually my first sneeze was 1 month post op. I just stopped all sneeze before. I was too scared to even contemplate sneezing
How much for the incision? I need it in my collection
Lol out of the crappy joke, congrats on making it alive
$150K and that's cheap
How long did it take you to get used to the clicking sound?
It's sort of a novelty the first day then it's just a noise you block out
Did you get a teddy bear or heart pillow for your recovery? Did you keep it or throw it away? My facility gives out teddy bears with the hospital logo on its little tshirt. Some patients get pretty attached to the little guy, others want nothing to do with it when it’s time to go home as it’s become associated with pain/stress. My mom still has her pillow from twenty years ago when she had a bovine valve implanted.
For what it may be worth, the ticking noise makes a great ice breaker with nursing staff if you end up in a hospital unrelated to your surgery. Every nurse and aid will be lined up, stethoscope in hand, because they want to listen to your ticker. They love that shit.
Source: Work in nursing. I love that shit.
Heart pillow only! I use it occasionally. As with most things, some work better than others on different people.
Thank you for sharing, My 12 year old son has a bicuspid valve with a 3.1 cm aneurysm that they are still monitoring, but he is about to undergo open heart surgery in the next few weeks for an anomalous coronary artery. I appreciated getting some idea of what to expect. Did they tell you to have the rest of your family members tested? Apparently bicuspid valve is genetic.
I'm so sorry to hear about your son. He is very young! The good thing is young patients ace through surgery. He will do brilliantly. I've heard stories of 15 yo being back in school within 2 weeks. The young body is amazing at healing. It could still be a challenge. I think the hardest was eating in hospital. Ask him what he wants to eat post surgery, and bring him things from home. I personally hated Ensure and other hospital food. I wanted fresh stuff.
I hope all is going well with the pacer. Did you get a home monitor? What company’s device did you score?
Medtronic MRI compatible. I'll get it checked in about 2 weeks. Then periodic follow ups. They came to see me in hospital twice. Great company
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?
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
Have you gotten the bill yet? Because when you noted that you had been living in places with socialized medicine and didn’t get this taken care of then, I immediately thought about your bills.
Good luck to you in your recovery and life!
So far, the bill is $150K, but I don't know what the insurance will cover. I'll know soon. It's very stressful tbh, but as said, the care I received at JH hospital was world class.
You're 31 and they used a mechanical valve on you. Are you on blood thinners for the rest of your life?
@BigODetroit: thank you, yes I'm on coumadin for life. I am so happy I went with mechanical! The coumadin testing is a pain but it gets easier and testing less frequent over time, the coumadin itself is easy just a pill. The diet restrictions are much easier than what you read about online.
I'm sure this will get buried but I had a mechanical valve put in at age 26 due to a genetic defect. Hope you're doing well. Does the ticking still get to you?
Well done on surviving your ordeal! You're a strong person. The ticking is ok, it's not the ticking but my heart racing when I'm in bed that annoys me.
Did you have the option of a tissue valve? I’m wondering about pros and cons of both for a younger person... tissue has to be replaced versus blood thinners and risk of stroke for metal.
I would say repeat surgery would be a far worse outcome.
Why did you go with a mechanical valve over a valve from a pig heart?
Surgeon's recommendation. Surgeon did say lifetime mortality rates for either valve was the same long, but said that mechanical was standard choice for < 50 yo. I am so happy I went with mechanical! The coumadin testing is a pain but it gets easier and testing less frequent over time, the coumadin itself is easy just a pill. The diet restrictions are much easier than what you read about online.
What was your diet like?
I was a vegetarian growing up.. Diet has no effect on this. It's a congenital heart disease where the valve doesn't open properly from birth.
How is the food there if you’re eating?
Food was ok in hospital, it was really hard to eat in general as everything tasted off after general anesthesia.
How afraid were you before the surgery?
Pretty afraid, but eventually you just need to accept destiny.
Dude, I wanna ask you the one thing my boy couldn’t say after his heart surgeries.
Do you need to go to the bathroom?
That’s not it. He told me every 5 minutes between midnight and 6am.
Seriously, how’d you feel when your sternum was healing? That’s gotta be the worst bone braking feeling in the world.
Did it hurt to breathe?
Also, ready to go the the bathroom?
As for pain. The first few days were extremely painful, but with the painkillers they give you manageable. I even tried oxy but it made my temperature fluctuate so much once it wore off. I also felt I got a fever when it stopped working do I refused to try it again.
I’m assuming you’re back to work to pay off the massive debt your “insurance” didn’t cover as is the American way. /s
I'm off work, but yes, the bill is $150K so far.
Had the same surgery roughly four years ago at 21. Why did they recommend a mechanical over a different type of valve? Was it because of the other complications you had ? I was given a bovine valve. Pretty much very similar story to you, had aortic stenosis and a murmur at birth. Had yearly checkups and then one year my valve was too wide and I was in for surgery in the next 2 weeks. Its a rough surgery that I hope to never have to do again.
Surgeon's recommendation. US guidelines say mechanical for < 50 yo
In proud of you staying so strong through this.
Did you drink and smoke before?
Drink a bit, no smoking. The Aneurysm growth is not stoppable by changes to diet. Smoking definitely does not help.
Cardiac nurse here, with years spent working open- heart cases, in EP placing pacemakers, and in the Cath Lab placing stents in coronary arteries for both active heart attack patients and those in danger of having a heart attack, and doing valve replacements for high risk patients who couldn't survive open heart. Congratulations on your health, and thank you for the AMA!! Its always great to hear from patients, and see them educating others on their experience!
Besides a better quality of life, what are the biggest changes you face now? How will this affect your future? What are the biggest hurdles you have had to overcome?
Right now, Coumadin therapy will affect my travels. If I move anywhere, I need to find a Coumadin clinic ahead of time. Secondly, need to be very careful with accidents. I'm the first person to die in a car accident now. In general, I'm much more likely to have serious bleeding if I hurt myself.
Open heart is the only way as of 2019 to replace a diseased aortic valve. Soon, newer less invasive methods will be approved but it's early days.
My brother had this exact same surgery a couple years back. He decided against a mechanical valve and went with biological one (cow/pig?) because of the Warfarin. He's since run many (more than 10) marathons and started some popular running clubs and was nominated for 'Unsung Sporting Hero' awards. When he finished recovery, he was and still is in the best state of fitness of his life.
I'm happy to hear your brother is doing so well. I hope his valve lasts a long time. I chose mechanical valve to hopefully not have a repeat surgery.
Hi! I am an cardiac ICU nurse. For someone like you who was hospitalized for so long...what were your personal efforts in reducing your chance of becoming delirious? Did you like when nurses struck up conversation with you? Did you watch movies or listen to books, etc?
Hey! I enjoyed watching movies, walking, even going downstairs with a wheelchair at first. At the end of my stay, I could walk downstairs and get a bit of sunshine. It was hardest at the midpoint (7 days) knowing I was staying there another 7 days or so.
Having open heart surgery in January to replace my aortic and mitral valves with mechanical valves. Congenital condition, so I knew I would have to have the procedure anyway, but i’m pretty nervous that it’s coming up.
Advice for recovery please? 😊
Best of luck !!!!!
Don't worry too much. Get plenty of exercise before. Drop caffeine, drop alcohol. Try to meditate a little. Learn to focus on your breath and not the pain.
I’m a CPR survivor and still, several years later, have recurrent debilitating sternum pain. What have they told you about the recovery for your sternum? I stopped going to docs about it because none could help and seemed to minimize the pain/issue.
I'm so sorry to hear. I heard a chiropractor might be able to help. Also some pain could be nerve pain in my case.
What type of diet are you on to need such a procedure at such a young age?
Are you for real? This is a genetic deformity from birth. . . Read a fucking book
How much did you pay? Our patients pay about 50 euros per day regardless of the procedure. With a limit of around 700, after which they pay a bit over 20 euros per day.
I also had OHS when I was 29 yrs old due to bicuspid aortic valve, 1.5 years ago. Severe Aortic regurgitation + aortic aneurysm. I was lucky, I was able to have valve sparing aortic root replacement and they were able to repair my valve. I looked at the on-x valve as an option. I will require OHS at least once more in my life and will likely get a mechanical valve then. My birth defect was not discovered until 6 months before my surgery and on my first check up they informed me I needed immediate surgery. I remember the 7 days I was in the hospital as the worst thing I have been through. I will never forget waking up with a breathing tube or how painful the drainage tubes in my chest were. I still get a high amount of anxiety every year at my check ups.
My question is, how has your life changed having a mechanical valve and what limitations do you have ,if any, being on blood thinners?
I looked into going to a heart surgery survivors group but all of the members were 70+ yrs old.it is nice to hear from someone in my age range
On mobile sorry for any errors
My question is, how has your life changed having a mechanical valve and what limitations do you have ,if any, being on blood thinners?
Early days! Good question. Blood thinners I think take a toll on patients long term. So far, it's routine check ups and minor dietary restrictions. if you can live with that, no reoperation is a big plus.
I had the same surgery 2 years ago at 31 also, aortic valve replacement and aortic stint. I went with a biologic valve, what made you choose mechanical?
Surgeon's recommendation. I guess biological is also good and TAVR is getting big now
Been there, can relate. Question: did you have any coronary artery disease, were bypasses done along with your valve replacement?
My dad got a mechanical valve as well! Does the ticking of the valve bother you or is it largely background noise now?
Not much bother, can hear it at night
As a patient, did the surgeon come across as an arrogant tosspot?
Source : work with cardiac surgeons.
No no, very nice very approachable
Where was the chest pain specifically? Left side? Right side? Did it radiate to the back?
It was musculoskeletal thankfully
What do you wish the nurses could do better for you during your hospitalization?
They were perfect. I think it was more the patient learning to get used to the hospital routine. And outside food was a godsend
I will review your answers, but wanted to get a question out there if you are still responding. Just today, I had a conversation with my 74 year old Mom who is scheduling a surgery soon to replace a valve. She talked a lot about the mechanical valve versus what she called pig skin...:-) . She said she does not know which way to go because the mechanical would last a lifetime and require a monthly Dr visit versus the alternative lasting ten years and not needing a monthly Dr visit. She is currently taking blood thinners. Did you face a similar decision?
Yep, but the monthly visits aren't too bad. They remind me of why I am alive now. The medicine is also doable. The repeat surgery, imo, is far worse outcome.
Why do you mix imperial and metric measurements in the one statement?
I'm European living in America.
So can you talk money? Here in the US.... how did you pay for this?
Insurance is paying, hopefully
Do you have any idea what kind of antibiotics you were on all those years ago? I've been reading lately about a class of antibiotics known as fluoroquinolones, which seems to be many of the drugs ending in -acin, and there seems to be evidence that it causes a type of mitochondrial disease which affects connective tissue. This apparently sometimes manifests as aortic problems. That may be something to explore...
Absolutely, and even a childhood infection could have caused the aneurysm. But in my case, the BAV goes hand in hand with aneurysm so they were not too surprised.. They were surprised my aneurysm had grown so much. They asked me about drug use, smoking etc. Before surgery a nurse wrote a whole file about me, in case I didn't survive the surgery. They wanted my whole medical history.
I took amoxicillin for the fever as a child. Fluoroquinolone sounds nasty, avoiding those since I knew about my heart problems. I think they're falling out of favor in general.
Reading this being 33, 34 in February, and have just found a similar-sized aneurysm on my aorta, your post grabbed me in a way this morning I wasn't expecting. Talking to local specialist in my upstate New York area. A trip to John Hopkins is definitely in my near future. I hope the best for your recovery. Still trying to wrap my head around the idea of heart surgery under the age of 35. How did you deal with it?
Thank you, I am so sorry to hear about your heart problem. I can certainly recommend a second opinion. I had +6 doctors look at my aneurysm before deciding to get the surgery. The consensus opinion (across 3 countries) was very reassuring. I felt in good hands knowing they all agreed it needed fixing.
It took time to get used to idea. I was very scared and then I would forget for a few months (no symptoms during winter, more symptoms during summer).
I haven’t read all the comments so I am sorry if this is a duplicate question. Did you get a dual chambered or biventricular pacemaker? Several studies have shown that RV only long term pacing can lead to increased Atrial Fibrillation and heart failure. We are putting in biventricular devices in most of our young heart block patients. (Source: am pacemaker rep).
It's a Medtronic Surescan MRI compatible device. I can give you specific codes over PM. I would imagine the people at Johns Hopkins knew what they were doing, I hope?
4xCABG this past April. I hear you about the pain although I had almost no complications. What you've gone through is exceptional but an open heart aspect itself is I guess about as routine as it gets now from what I understand. What was your pain management routine like, especially when you were transitioning from heavy duty stuff to an over the counter stuff?
Good question! I was very lucky, pain was very low after day 5. I stopped taking any pain meds at day 7/8. I have taken none since. I have some nerve pain at the moment, but I try to use a heatpad. Disclaimer: take your pain meds when needed, don't feel guilty for taking them. A painful incision will prevent you from breathing fully, which can lead to fluid accumulation and even pneumonia.
My son has a bicuspid aortic valve.. we were told that when the time comes it can be replaced with a pig valve. They use a catheter and go in through the leg. Then they drop the new valve in so it pushes the old one all the way open and holds the new valve in place. They made it sound like a very simple procedure. Was this not an option?
TAVR until recently was not approved for BAV, only normal valves. This might change in the future...
did you see the news about drugs for heart disease?
what do you think about drugs vs surgery
In my case, the valve is diseased, calcified and genetically altered at birth from a connective tissue disorder. Only way is to surgically cut it off and replace it with a healthy valve or substitute
I just wanted to say that I’m glad you’re okay. My brother had a very similar surgery (valve replacement and a 4.5cm aneurysm) two weeks ago.
My question- how does it feel to have such a major surgery at a young age? Did you do anything as a “bucket list” item in case of the worst case scenario?
I'm sorry to hear about your brother.
As for bucket list, sure, I ticked off a lot of experiences over time, such that I didn't feel the need at 31. Partly because such a large aneurysm prevented me from doing sky diving etc. I did worry about life on blood thinners, yes I ate whatever I wanted before surgery, in particular green tea.
But yes, if you find out at an early age, you should live your life to the fullest. Part of the reason I was in denial about medical check ups for 8 years was because I felt in great health and wanted to enjoy my uni days. While the irresponsible choice, so glad i did.
Serious question , can you walk through metal detectors? Also when you say get murmurs and get tested, how do they test for that? I have a family history of heart disease and been trying to see if there's something I need to look for. I know getting test for high blood etc and preventing is diet.
Nope. With a pacemaker I have a list of things I need to be careful with.
As someone who has had 2 open heart surgeries by the age 14 due to congenital aortic valve stenosis I relate to this a lot. What are some things you could do before your surgery that you cant do now that you wish you could?
Your journey is amazing! Sorry for the delay in responding.
I now have a mechanical valve with anticoagulation therapy. This will restrict physical activity like rock climbing etc. I also can't disappear to Tibet for 6 months, as I need my blood checked regularly. However, pre-surgery I was always out of breath when climbing hills etc. So life post-surgery hopefully promises more energy.
You mentioned always being out of breath and were unable to do the sports other boys could do, is that a scientific side effect of a bicuspic aorta valve? I have the same heart condition but have never heard that
I think it varies a lot. It could be other medical issues. But that was certainly my experience growing up.
I,as a fellow patient who suffered from brain aneurysm,i am glad you are okay. My question is,were you in big pain or u were constantly under painkillers? i ask because the pain in my case was unbearable
I'm so sorry to hear, I think everyone's journey is different. As you read from my post, my complications were pretty unusual to other's. I have had 0 pain for 2 weeks now, not taking Tylenol even. I have had very bad nerve pain at times, even in my teeth. It seems some nerves were hurt. I had intense pleuritic pain /back pain in hospital, it's all gone now.
St Thomas is a fantastic hospital, assuming you spent at least a night there, did you get a room facing the Houses of Parliament ? I was there for a week
it is a beautiful hospital. I only spent 2 days there.
How much did it cost? I’m curious as I’m pretty sure you said you were in America and I’m an Aussie so yeah how much were the medical fees?
What was your body fat %, height, weight, diet, and exercise / activity level leading up to this? Thanks for the post, good wake up call.
Low, 5"8, 125 pounds. Exercise: walk 2-3 hours daily
How long were you told your Mechanical Heart Valve Will last? As you are young I assume you will need to replace it again in the future.
Early days still. No concrete timeline. It also depends how I wear out my valve. I'll know in 10-20 years
You can't take Xarelto pills instead of warfarin? I got that for my repaired mitral valve (need to take it for 6 months).
Nope, but in 2 countries (Germany and South Africa) they do trials to see if baby aspirin is enough. I am enrolling in a US trial to look at Eliquis (at 3 month post op mark)
Did all the painkillers make your first post-surgery poop horrific? I had quite the, erm, experience after a c section.
level 1caffekona1 point · 26 minutes agoDid all the painkillers make your first post-surgery poop horrific? I had quite the, erm, experience after a c section.ReplyGive AwardshareReportSav
yeah it was a challenge
Do you have any tattoos or plan on getting one?
I take warfarin every day for the same reasons as you and want to get one. But I don't know whether the tattoo will get blurry because of thin blood?.. Do you know by any chance?
Good question, I would consult your Coumadin clinic before trying any tattoo. See what they think.
Why did you have to get dental clearance for a heart surgery?
Because the surgeon needs to know they're not working with adverse variables. Bacteria from mouth infection can travel to new mechanical valve and eat up parts of the remaining aortic valve (endocarditis) which can kill you. Surgeon needs to know that my teeth were fine and not going to cause a problem. It's pretty standard afaik. I was happy to get a full accounting of my teeth before surgery.