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

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GreenGiant91 said:
Hi all,

So my background is congenital heart disease I was born with a Bicuspid aortic heart valve, VSD and needed a Coarctation of the aorta repair to save my life at 11 days old. I'm 32 years old now. Living in the UK.

I became unwell this year around May time before finally being diagnosed with endocarditis in August, I spent 7 weeks in hospital getting IV antibiotics for this. The final scans of the heart at the end of September seemed okay allowing me to be discharged with close follow up appointments with my doctor. However at the end of October part of the dead vegetation came off the heart valve causing a small hole in the Aortic valve this caused me to have a TIA (lost sight in left eye for a few minutes) I went straight to hospital. After a few days of tests it was decided the best treatment for me would be a mechanical heart valve and they will close the VSD while they're at it.

I found out today the surgery will be next Thursday so it's starting to feel very real now and scary. I will be honest and say this is the most scared I have ever been in my life and still can't believe this is happening. I'm trying to be positive but I'm struggling with it all.
I have extreme anxiety about the surgery itself, as if it won't successful, dying and other complications that may disable me. I know these fears all come from the unknown and overthinking but its hard to relax. I also fear my life with the valve will be one that will hold me back from traveling, being active, enjoy food and having a long happy life. I start to worry about needing a new valve down the line too.

I have been reading this forum for the past few days and its been very helpful in easing some of my fears but now it's getting real with the date my anxiety has gone up. My hands started to shake uncontrollably when my doctor told me today.



I just hope I can have a normal healthy life after this. I guess I hope to hear everyone's experiences and maybe it can help me relax more and embrace this next chapter in life.
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I'm going onto year 19 with my prosthetic aortic valve. Just remember to get your INR done every month. I ignored that advise for too many months and ended up with a 10/10 life threatening brain hemorrhage. I miraculously recovered 100%. Just listen to your doctors and do what they say, and you will be ticking away for decades to come.
 
Hi and (should have said) welcome (in my other post)
scorpio0214 said:
Just remember to get your INR done every month.
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quite a few of us here are self testers and we usually advocate for weekly testing, a lot can happen in a month (a recent example)

https://www.valvereplacement.org/threads/natto-and-inr.889316/
not to mention good old grapefruit

https://www.valvereplacement.org/threads/my-monty-python-moment.42094/post-767998
which lead to her seeing the value of more frequent testing because you just never know
https://www.valvereplacement.org/threads/frequency-of-testing.42476/#post-774789

Have a fish through some of the older posts too

https://www.valvereplacement.org/forums/home-anticoagulation-monitoring.25/
https://www.valvereplacement.org/forums/anti-coagulation.18/
Best Wishes
 
Operation went well, in a lot of pain though. They found previously live infection on the heart valve so I now need to stay in 6 weeks for antibiotics again to play it safe. Not ideal at all. Christmas in hospital.
 
GreenGiant91 said:
found previously live infection on the heart valve so I now need to stay in 6 weeks for antibiotics again
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GreenGiant91 - I know this is painful both physically and mentally. I was in the University of Iowa hospital (middle part of the USA) on IVs for antibiotics last Christmas. You can do this!

FYI: after 2 weeks in the hospital, they released me with a peripherally inserted central catheter (PICC), which allowed me to self administer antibiotics at home for the next 5 weeks. A nurse came to my home once each week to clean and inspect the PICC line. Every 6 hours I attached a syringe filled with antibiotic to the PICC line and infused the antibiotics. Perhaps an option for you? Note: I was on IV antibiotics for some 7 weeks; after the 1st week, my blood test showed no live bacteria. So I had some 6 weeks of clean bloodwork when we stopped the IV antibiotics. I then went on antibiotic pills for another 4 months just to be sure everything was dead.

Also, are they using a PICC line in the hospital, or a regular IV line in your arm/hand? A PICC line can stay in for up to 1 year, so you don't need new IV lines inserted every few days. If I ever need IVs for more than, say, 1 week, I will insist the hospital use a PICC line instead of regular IV lines. Using a PICC line is much easier for both you and the nurses. Of course, I am not a medical person, just my opinion, etc.

Stay in touch! I'm sure you would laugh at my American Midwestern accent, but it is a ... version of English.
 
Mark Miller said:
GreenGiant91 - I know this is painful both physically and mentally. I was in the University of Iowa hospital (middle part of the USA) on IVs for antibiotics last Christmas. You can do this!

FYI: after 2 weeks in the hospital, they released me with a peripherally inserted central catheter (PICC), which allowed me to self administer antibiotics at home for the next 5 weeks. A nurse came to my home once each week to clean and inspect the PICC line. Every 6 hours I attached a syringe filled with antibiotic to the PICC line and infused the antibiotics. Perhaps an option for you? Note: I was on IV antibiotics for some 7 weeks; after the 1st week, my blood test showed no live bacteria. So I had some 6 weeks of clean bloodwork when we stopped the IV antibiotics. I then went on antibiotic pills for another 4 months just to be sure everything was dead.

Also, are they using a PICC line in the hospital, or a regular IV line in your arm/hand? A PICC line can stay in for up to 1 year, so you don't need new IV lines inserted every few days. If I ever need IVs for more than, say, 1 week, I will insist the hospital use a PICC line instead of regular IV lines. Using a PICC line is much easier for both you and the nurses. Of course, I am not a medical person, just my opinion, etc.

Stay in touch! I'm sure you would laugh at my American Midwestern accent, but it is a ... version of English.
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Hey. It’s a kick in the balls to be told I’ll need to stay here 6 weeks. Today is day 3 after surgery and was able to walk about the ward today. Yesterday was tough, I had some delirium which felt crazy. I was convinced everyone wasn’t real including me. Nurses calmed me down and I was apologising over and over.

I was in hospital for 7 weeks in August with endocarditis but due to the antibiotics being every 4 hours I needed stay in. Towards the end I was able to go home for a few hours at a time. I don’t fully understand the new situation. They think it’s a different organism on the heart valve but blood tests are negative and they’re still deciding what antibiotics to use ie every 4 hours or something more spread out. I’ll hopefully know more soon. I should be on the ward tomorrow and getting a PICC line back in and the neck line out (thank god).

The clicking feeling I have from the valve is a strange one, feels like popping candy you had as a kid.
 
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Mister_James said:
Have they given you the devils contraption to breathe into?
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I believe that you have to suck it up ... which I believe is also a good metaphor for recovery.

Best Wishes
 
LondonAndy said:
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.
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Excellent suggestions. I am adding to this based on my son’s experience. He was 11 when he had his aortic cal he replaced (mechanical). It was his second OHS. For your phone/electronics, an extension cord if they will let you, charger for your wireless ear buds (the wired version gets all wrapped up with the oxygen nasal cannula). A throw pillow to “clutch” when you cough. It helps. Lozenges, lip balm, hand/baby wipes.
He is now 18 and has been working on managing his own warfarin the last year or so. I rediscovered this page and am sending it to him to join. Also sending pedicle’s blog on managing your own INR which I believe he is ready for. ❤️
 
pellicle said:
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
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Your partner may notice it while sleeping. My son who has it and I do not notice at all when sitting next to him in a quiet space.
 
trinitymcdermott said:
Is it a breathe into or out of thing? In the US it is a breathe in - suck hard enough to move the little ball to a certain level. My son did not enjoy that.
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Mine is the breathe in device and you watch the ball go up. I try to do it a few times throughout the day and it gets better each day but lots of room for improvement. My voice still hasn't fully came back so I find talking tiresome and lose my voice easily. I sound like someone who smoked 60 a day for 60 years at 32..
 
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GreenGiant91 said:
Mine is the breathe in device and you watch the ball go up. I try to do it a few times throughout the day and it gets better each day but lots of room for improvement. My voice still hasn't fully came back so I find talking tiresome and lose my voice easily. I sound like someone who smoked 60 a day for 60 years at 32..
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I think I know that lady. This is nothing to do with heart surgery, but some years ago I was on a telephone call at work and was quite taken aback when I asked him for his name, and he said it's Mrs ....

Subsequently I met her at an event, and she definitely wasn't Trans!
 
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