I will have my aortic valve replaced with a mechanical valve next week

[GreenGiant91]

Welcome from another Brit! and I agree: open heart surgery is a big deal, so it would be surprising if anyone is not anxious before it happens! Anticipation is the worst thing, and difficult for many to deal with. Personally, having a mechanical valve doesn't affect what I do at all. Still drink (in moderation), eat what I always used to, and in random amounts, and go on holidays etc.

Focus on getting ready for it, and the recovery period afterwards. Top tips:

1. Take ear plugs and an eye mask! My valve was done as an emergency, and I discovered later that if it had been a planned procedure they would have issued some ear plugs by post to me. But no. I remain amazed at how little respect most medical staff have for sleep! From early morning cleaning to other patients being admitted or discharged, there is noise and bright light most of the time. You may already know this from previous time in hospital!
2. Don't bother taking much clothing. You'll mostly use hospital pyjamas and gowns, and their laundry processes are not really geared for private clothing - stuff will just get lost.
3. Remember phone charger, toothbrush charger if you use an electric one, and a book or kindle-type device for lots of time waiting around, though you probably won't feel like reading much after the op for a while. It's difficult to concentrate as the body heals.
4. Get a CoaguChek meter. Loads of threads about them on here. An easy way to test your INR at home or wherever you are, to manage your Warfarin. And it means you can test more frequently than most clinics end up doing. (Not unusual to be every 6 - 8 weeks once your INR settles down, but with a meter you can test weekly). Read this for more info and why it is so important. Not sure what it is like in Northern Ireland, but I had to buy my own meter (£300) and then the test strips etc are on prescription. (You don't need to pay VAT (sales tax) - we're exempt for medical reasons).
5. Prepare for coming home. Don't share towels to avoid risk of infection. Wash after only 2 or 3 uses, at a high temperature. Have you got a recliner, or big triangular pillow thingy, to help sleep on your back and make it easier to get in and out of bed? Again, lots of threads about these issues.
6. Don't overdo it! Give your body the time it needs to recover and get back to normal. Remember you won't be able to lift much weight whilst the chest heals.

Hi Andy,

Thanks for the reply! Always good to see someone who's been through the NHS talk about their experience. I have been in hospital a total of 9 1/2 weeks this year and COUNTING . (7 weeks in August and the last 2 1/2 weeks) Ear plugs have been the best thing I have taken into hospital and you're right about the lack of respect given to sleep here. I have asked a few times about them coming back later to change bed sheets and you would think I just insulted their whole family.

My consultant did mention that it may be possible for me to test myself at home once the INR levels are stable enough post hospital but not sure if I would need to buy the device or not. In Northern Ireland our prescriptions are free so I should be ok for the test strips in that case.

I was actually looking at getting a white noise machine for home to help with the ticking sound from the valve, I'm the type of person a ticking clock on the wall would drive me mad at night. Is this the pillow you're referring to? It was on my to buy list for getting home. If there is anything else you or anyone else thinks is worth buying for home recovery please suggest away!

Hope you have been doing good since your surgery and it sounds like your lifestyle more than normal

 

[pellicle]

I was actually looking at getting a white noise machine for home to help with the ticking sound from the valve, I'm the type of person a ticking clock on the wall would drive me mad at night.

thing is its different.

Clock on the wall is external ... over there

Hearbeat is part of you, a central part of you ... what others hear of it is not what you hear of it ... to me all this stuff is overblow by the obsessive compulsive (bordering on hysterical) types who haven't experienced it.

Sure, I can hear it and if I sit there and focus on it and focus on hating it and focus negative things I probably can make myself hate it ... doesn't sound like a good plan to me. So instead I just use it as a tool to monitor myself. I no longer need a "heart rate" watch for instance.

I literally can't even feel it when out on my motor bike

 

[GreenGiant91]

but if you do:

(I swear in the slow mo you can hear someone say "you should be dead" amid the repetition of "I love helmets" )

I will play it safe and get this for any shenanigans

 

[pellicle]

I will play it safe and get this for any shenanigans

LOL
I'm not there yet

 

[Bionic Orange]

Have you got a recliner, or big triangular pillow thingy, to help sleep on your back and make it easier to get in and out of bed? Again, lots of threads about these issues.

GreenGiant91, this entire post from LondonAndy is excellent.

The thing that I have found most helpful for sleeping is a big comfortable recliner. Maybe you want to make sure you have one or borrow one and have it at home just in case you have an experience like me. Three months post-op and I still find it the most comfortable way to sleep. Others will have different experiences. With more time, I'll be back sleeping in the bed full time, but right now it's a game changer for better sleep for me.

 

[LondonAndy]

Hi Andy,

Thanks for the reply! Always good to see someone who's been through the NHS talk about their experience. I have been in hospital a total of 9 1/2 weeks this year and COUNTING . (7 weeks in August and the last 2 1/2 weeks)

My consultant did mention that it may be possible for me to test myself at home once the INR levels are stable enough post hospital but not sure if I would need to buy the device or not. In Northern Ireland our prescriptions are free so I should be ok for the test strips in that case.

I was actually looking at getting a white noise machine for home to help with the ticking sound from the valve, I'm the type of person a ticking clock on the wall would drive me mad at night. Is this the pillow you're referring to? It was on my to buy list for getting home. If there is anything else you or anyone else thinks is worth buying for home recovery please suggest away!

Hope you have been doing good since your surgery and it sounds like your lifestyle more than normal

Ah, I thought you might know about sleep problems in hospitals!

Yes, that's the sort of pillow I meant. I was lucky, we already had electric reclining sofas, and I found I mostly slept in one of those the first few weeks. (I think being electric is important, as the manual ones mean too much exertion to get in the right position). I also found I shifted position a lot, to get comfortable, though wonder if that was partly because I am normally a side-sleeper, and couldn't do that.

Wait and see if you want to get the white noise machine. I am not fit (I think the technical description is I'm fat!), and I honestly don't hear the valve at all. Not sure if my extra padding is why, but in any event, the noise is internal, and I wonder if a white noise machine would help?

Also, I am not surprised your docs are saying wait to get the CoaguChek machine. Your INR will be pretty unstable for the first few weeks at least, and they will monitor you more frequently. Having said that, if you can get a machine do: you'll end up needing one, and the earlier you get it the more you can monitor your own INR and report them to the docs.

My attitude to the surgery was very simple and pragmatic: I was struggling with shortness of breath, and once the diagnosis was conclusive I knew I would need the heart surgery and indeed was looking forward to a normal life after it. It perhaps helps that I like gadgets - when I had my angiogram done, where they thread a probe from either your arm or groin into the heart, I was fascinated as this robot zoomed around me and I saw the x-ray flashes on a huge plasma screen beside me. Afterwards, I said to the technician: "I enjoyed that - same time next week?".

I also ended up with a pacemaker through surgical complication (about a 3% risk, I think) and despite both the valve and pacemaker I genuinely don't think about either of them in my daily life. It's wonderful what they can do, and very surprising how little pain you will feel. Look forward to it!

 

[Bionic Orange]

How do you feel 3 months on?

I've progressed really well. 1 1/2 hour hikes walking up 1000 foot elevations are easy for me now and I do it at the pace I did when I was asymptomatic prior to surgery. My only annoyance is my resting heart rate at times is higher than I would like it to be, but everyone tells me my heart is remodelling and to be patient. Right after surgery, the majority of people are prescribed beta-blockers for the first 3 months to slow the heart down so it doesn't work so hard. In the hospital my heart didn't tolerate this drug so they took me off it after only 2 days. Most people can tolerate these drugs. I'm just unique. My resting heart rate is definitely coming down gradually, but I'd like it to constantly be in the 50 - 60 range rather than mostly in the 60 - 80 range.

But what matters most is what LondonAndy said. Focus on preparing for this life event that will be sure to prolong/save your life.

 

[Protimenow]

LondonAndy gave some great advice about what to take to the hospital.

Yes, definitely bring chargers, and a REALLY LONG USB cable that can usually be plugged into a port on the computer in your room. I did this during my last hospitalization, and it kept things going. On earlier hospitalizations, I kept a power device (battery) that held a LOT of juice, so I can charge or run my phone, and charge my earbuds (although wired headphones work well, too). If you have an Apple Watch, you'll want to bring the charger to charge it daily.

I now use an Amazon Fire Tablet - 8" of incredible engineering - long time between charges, WiFi (so you may be able to watch videos, log into whatever services you have, and entertain yourself - if you're feeling like doing this - the thing sells for about $50 U.S. -- I don't work for Amazon, but I really like this thing. You can even burn stuff you want to watch onto an SD card and watch (or read, or listen) using the device). Apple and others have similar things but they're much more expensive.

I knew about my impending surgery for about 20 years, and was prepared for it -- and this was before it became a relatively routine surgery.

Warfarin has been maligned for decades. "Rat poison." "You'll bleed to death" and other BS with very limited basis in fact.

I echo the advice of others -- get a meter (probably a Coaguchek - and they're not always expensive), and test weekly. You can get management guidance on this site - you'll see which source is best just by reading the posts.

I've been self testing and self managing since 2009, but there are others with more experience.

I'd wish you good luck, or 'have a good surgery' - but this is more in the hands of your surgeon, hospital, and surgical team.

I'm sure we'll all be waiting to hear from you on the other side - a side that a LOT of us are on.
, +

 

[Bionic Orange]

I was actually looking at getting a white noise machine for home to help with the ticking sound from the valve, I'm the type of person a ticking clock on the wall would drive me mad at night.

Everyone is so different. I still don't hear the ticking sound and neither does my wife. The only thing she hears is when she puts her ear on my chest, and instead of a Lub-Dub, Lub-Dub, she hears a Lub-Pop, Lub-Pop. She says it's a ton better sound than the scary ocean wave sound of my previous heart murmur.

You might end up having a loud ticker or a quiet imperceptible one. Time will tell.

 

[3mm]

How long were you unwell for before you got the endocarditis diagnosed? Would you be on antibiotics for going to the dentist? Did the doctor mention anything around getting endocarditis on the new valve?

It was about 6 weeks after my problems began, before we diagnosed the endocarditis. On dec 17, 2022 and again on Dec 18th several Drs specifically said that I did NOT have a heart murmur. A week later, Drs were saying that the murmur was obvious.

Regarding antibiotics and possible endocarditis on the new valve: I will always remember a conversation with my cardiologist on Oct 31st, 2023, just 6 weeks after my surgery. She moved her chair forward to just 3 feet from me, she leaned forward, and she locked her eyes on mine. In a firm voice she said "You must promise me - PROMISE ME - that you will always take your Amoxicillin before any dental procedure. This is very important. Now PROMISE ME." So I promised her, and I will always remember this. Endocarditis on the new valve is a concern. If I ever step on a nail, get a deep cut, etc, I will need to talk with my Dr about possible blood infection.

 

[DByrner]

Hi,

Thanks for the message! I see you're from Dublin? I'm up in Belfast so not too far away!

Glad to hear you're keeping good and chasing after your 2 year old! Interesting you still drink on warfarin? I was thought my drinking days were now behind me and was thanking the Guinness gods they now do 0% Guinness!! Do you test your INR at home or at your GPs?

Ah sure you're just up the road! Happy daze .

The first time I needed OHS was when I was 34 and I choose a bovine because of warifin. Then the bovine didn't last and I had to get a mechnical and with it warifin. It realy annoyed me that this drug would affect how I live my life however in the end it wasen't worth the worry. I look after myself but live how I want to live, however having two small kids means that I don't really drink that much anyway. I am in the hospital for regular tests and bought a machine that I can use to check myself in case there is a buck in my trend (holidays etc). Works for me! Best of luck and please feel free to reach out.

 

[Midlo_dave]

Good luck GreenGiant91! I am about 11 months ahead of you. Had my aortic valve replaced in Jan 2023, at age 51. I also had previous OHS as child. Everything said above by others is true and good advice. It took me 6 months or so to get back to 100%. I've been "normal" for awhile now. Warfarin is not an issue at all. I take the same number of meds after surgery as I did before. Honestly, I am occasionally annoyed by the ticking/thumping in my chest, but it is not a huge concern. I am very thankful to be healthy and past my surgery. You will be too. It is something that you have to get through. You will feel better soon. Take care of yourself!

 

[GreenGiant91]

that you will always take your Amoxicillin before any dental procedure

When I rang my dentist to explain what had happened about the endocarditis and needing to take amoxicillin she pushed back and started to claim I didn't need to do that and it wasn't fair that dentist get the blame for infection. I honesty couldn't believe it, she quickly changed her mind when I told her the bacteria has in fact came from my mouth.

Glad you're doing well! I have some fears of getting endocarditis again due to the last one being so random. I didn't have any dental issues and somehow got it from the mouth. They believe I may have had bleeding gums for a short time that I don't remember.

 

[GreenGiant91]

Good luck GreenGiant91! I am about 11 months ahead of you. Had my aortic valve replaced in Jan 2023, at age 51. I also had previous OHS as child. Everything said above by others is true and good advice. It took me 6 months or so to get back to 100%. I've been "normal" for awhile now. Warfarin is not an issue at all. I take the same number of meds after surgery as I did before. Honestly, I am occasionally annoyed by the ticking/thumping in my chest, but it is not a huge concern. I am very thankful to be healthy and past my surgery. You will be too. It is something that you have to get through. You will feel better soon. Take care of yourself!

Thanks for the reply.

Glad to hear you're doing well now. I think its hard for me to picture myself in the first weeks depending on others to cook, clean and basically things I have taken for granted. I hope to make a quick recovery but won't push myself over my limits.

 

[Chuck C]

All good points Andy!

Take ear plugs and an eye mask!

Yes, absolutely!

I remain amazed at how little respect most medical staff have for sleep!

This was my experience for my 2018 eye surgery at UC Riverside, but I was pleasantly surprised to find after valve surgery at UCLA they appeared to prioritize sleep.

UC Riverside 2018: My room was across the hall from a supply room, the door to which closed automatically with a loud thud. It is easy enough to modify doors so that they don't make a sound when they close, but apparently, this was not something they bothered with. The banging could be heard all day and all night, every time someone went into the supply room. At 2am, the trash guy comes in, turns on my lights and empties the trash. It's like, really? This needs to happen at 2am?

UCLA 2021, valve surgery: Totally different experience. I did bring my eye mask and ear plugs, which I use nightly at home as well. It is common to not get much sleep after valve surgery, especially in the ICU, with so much going on. But, the nurses all seemed to encourage sleep and often went out of their way to facilitate it. In the step down, they come by and check vitals every 2 or 3 hours. The nurse came in at 8am one morning and told me that she had been there at 7am, but since I was sound asleep, a rare occurance for me at the hospital, she decided to let me sleep and came back and hour later. I really appreciated that.

 

[GreenGiant91]

Then the bovine didn't last

I wasn't even given the option for this but after reading into it I think mechanical is best option in order to avoid future OHS. I'm sure you're happy to have it now especially if warfarin isn't worth worrying about. I will need to invest in one of those testing machines, I know I will worry alot about my levels. It's just who I am a natural worrier hence my anxiety is abit crazy now.

 

[GreenGiant91]

I have my surgery on the 23rd I will make sure to post an update when I'm not too high on pain relief. This time next week it will be over and recover starts.

Thank you to everyone who have messaged me! It has helped me relax and I'm sure I will be reading this forum non stop for the next 6 days.

 

[Chuck C]

When I rang my dentist to explain what had happened about the endocarditis and needing to take amoxicillin she pushed back and started to claim I didn't need to do that and it wasn't fair that dentist get the blame for infection.

Wow! Unfortunate that she would have that attitude and feel the need to push back. All dentists should know about the link between dental work and endocarditis. It is not about blaming dentists. It is a reality that a significant % of endocarditis comes from bacteria in the mouth, and often follows dental cleaning or dental work.

This brings up a question. It was known that you had BAV since you were a small child. It is routine in Norther Ireland to take antibiotics as a prophylactic prior to dental cleanings and dental work?

Prior to 2007, the official dental guidelines called for all BAV patients to receive 2,000mg of amoxicillin prior to dental visits, as BAV patients are more susceptible to endocarditis infections. In 2007 or 2008, although the guidelines do still call for those with prosthetic valves to have antibiotics as a prophylactic, they no longer call for it for those who are BAV and still have their native valves, citing a lack of evidence that it helps. This move was meant to curb what is believed to be an overuse of antibiotics and was controversial. My dentist still has a policy of administering 2,000mg of amoxicillin an hour before appointments with BAV patients and had me do so once my condition was discovered in 2019. Also, UCLA gave me a handout with instructions for BAV patients to take amoxicillin prior to dental work for BAV patients, even pre-surgery.

 

[GreenGiant91]

It is routine in Norther Ireland to take antibiotics as a prophylactic prior to dental cleanings and dental work?

It's not routinely used here it seems. I believe some people will be advised to have antibiotics for me it was only after I had endocarditis which seems odd. My infection didn't come from the dentist as I didn't see them or have any issues around the time I was unwell and before I become unwell. As my doctor said 'I can't believe this has happened to you, you're so unlucky', I had my last cardiology review this time last year where he said he wasn't worried about me and I was his least sick patient he had as I was fit and active. Fast forward a year and look how that has changed.

My dentist did finally agree for me to take amoxicillin 1 hour before any treatment. I actually had a clean booked for January which I pushed back to March. I will make sure to take the antibiotic and use a Chlorhexidine mouthwash before and after going.

She did mention how over using antibiotics isn't good and can cause bacteria to become resistant which I fully get but until you're unwell with endocarditis not fit to even do a 10 minute walk I will take my chances with antibiotics!

 

[Gail in Ca]

I was correctly diagnosed a week after my symptoms of endocarditis. The ER I went to in SoCal diagnosed me with the flu! I drove home to NorCal and was tested for so many things including blood cultures. So I was started on 3 antibiotics in the hospital and then sent home with a picc line to give them to myself at home. I ended up with a fever the day after I got home, was sent back to the hospital and given a different antibiotic to do at home. This time 23 hours a day on it and one oral. I’m surprised they kept you in the hospital for sooo long. I can’t imagine that. Anyway, you might have needed your surgery no matter how soon you were diagnosed.
I needed a 3rd surgery to replace what had been done in my previous surgeries due to the endocarditis.
I wanted to add that once I was on the cardiac care ward, I just couldn’t sleep much at night. I’d be the only patient walking around the halls. So during the day, I mostly dozed while having the remote by my bed on classical music.
You really can’t sleep much. And then you’re too tired to use any stuff you bring from home! I walked a lot day and night. The bed was uncomfortable on my back. But I was only there for 6 days total.
I commented to my infectious disease doc how I wasn’t able to eat before a test at 3pm. He said that things hadn’t changed much since the dark ages. They starve you, bleed you and keep you from sleeping!! He was a funny guy.
All the best for you!