31 / M: 14 Days post Aortic valve replacement + Stroke

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ibatt

New member
Joined
Feb 8, 2023
Messages
2
Location
UK
Hi guys.

Thought I'd share my experience on here and answer any questions if anyone had anything they wanted to ask.

I'm a 31 year old male, and had an aortic root replacement & replacement aortic valve (mechanical), in Bristol Royal Infirmary (UK) on Jan 25th. I am in a good state of fitness, cycle around 50 miles a week, generally active.

Background

I had history of aortic dissection in the family, both Uncle and Nan had ruptured aortic aneurysms so my aorta has been measured since the age of about 15. Last year it reached 50mm, and I was told it would be a good idea to get the aortic root replaced in order to prevent possible aortic dissection in the future, which was likely based on my family history.

I was also born with a bicuspid valve, and was told that whilst valve sparing surgery was possible as mine wasn’t causing me any problems, it was a better idea to undergo valve replacement as well in the same operation, rather than likely have a secondary valve replacement operation later on down the line.

At no point in my life so far had I had any symptoms or negative side effects of either my bicuspid valve or aorta, this was purely a preventative surgery to future proof myself.

The Operation

The last thing I remember was speak to the anesthetist. I don't remember waking up, I don't really remember the breathing tube. I do remember having blurred visuals post operation.

Burred visuals & stroke

It turns out that the blurred visuals post op were the result of a stroke, a CT scan shortly after the operation showed two small clots on the rear of my brain. It's not certain what caused the stroke, possibly a bleed due to the blood thinners used in the operation, possibly an air bubble that travelled into a brain blood vessel, possibly a piece of debris (calcium) that may have done the same. There is around a 3% chance of stroke in this operation which of course I was fully aware of, so unfortunately I did fall into that 3%.

My sight was very blurred for the first couple of days, and slowly got better. I was unable to type or read messages on my phone for the first 2-3 days after the operation, but this slowly got better. I am now 14 days post op, I have slightly blurry right peripheral vision, which is an annoyance more than anything, but all of the neurological and eye check ups I've had so far, the doctors seem to think that over time my brain will gradually rewire and it should disappear entirely. I find reading slightly more difficult now, but typing is mostly fine.

The 3-4 days post operation

I can't say I was in pain. However, it felt like I had been in hospital for about a week to 10 days. I slept terribly, I was sweating profusely which lead to severe dehydration several times. It seems like the wards in HDU and ICU were constantly busy, there was always noise, bright lighting, disturbances. I hallucinated a couple of times. Once, where a chap opposite me - early 20s - in the bed who had just arrived on the ward, was being told by the nurse about his leukaemia diagnosis, and when he can expect to lose his legs, arms, penis, etc. I found this devastating and recall crying for a period of time having to sit and listen this. It turns out a few days later this guy was actually in from a severe accident on a ski trip.

My second hallucination was a lady giving birth in the corridor next to me, and then the baby bleeding out and the mother having a failed blood transfusion on the floor. I can recall this clear as day, but alas, it didn't actually happen.

It was in this few days that I actually felt very very low. I think a combination of loss of vision, tramadol, post anaesthesia, hallucinations, dehydration and lack of sleep that really got to me. Despite having a very strong disposition and never having any thoughts along these lines, I felt suicidal in a couple of instances, and just wanted to be out of that situation. It felt like it was significantly longer dragging on, I felt trapped, and just felt like I wanted to get out of that immediate situation. I my mind I had reached the end of my tether and just wanted out.

From about day 2-3, my heart rate was very fast, around 120-130 resting, it felt like my heart was beating out of my chest. At this point I had convinced myself I would need to go on a pace maker (I already had one wired up to me that I think they had used a couple of times). I recall trying to Google all the things about pace makers etc, I had convinced myself I would need one. However one Beta Blocker tablet, and after half a day or so, my heart had slowed to around 90 or so resting, which was considered good. From then on, my heart rate controlled itself and has been fine since, of course I didn't end up having that pacemaker fitted.

One of the biggest surprises to me was how out of breath I'd get doing anything. Getting up and going for a wee, and going back to my bed, and I'd be knackered. Cleaning my teeth - surprisingly out of breath.

Coughing is painful, just need to ensure that you’ve got a pillow or curled up towel held tightly against your chest if you need to cough.

Day 4-7 Afterwards

This was when things started to improve dramatically. I had started sleeping better, my vision had started to clear up, I wasn't in any pain, I was off the tramadol, and was starting to feel a bit more human.

Having the drainage tubes removed on day 4 was a bizarre and slightly painful experience as many people have noted. If feels like a deep negative pressure, like someone is sucking heavily through a straw from your chest, and then they pop out with a nice sharp, stabbing feeling once they’re out. It wasn’t by any means agonising, just very weird and unpleasant.

My first shower was on day 5 after surgery, and it was magical. It was very tiring, but felt amazing.

By day 7, I was easily walking about, walking out of the ward and down to the main hospital area, walking around M&S in the hospital, and generally feeling more normal.

Day 8-13

On day 8 my dressing was removed from my chest and stitches taken out from where my drainage tubes were, that was nice and straight forward and pain free.

The next few days were more frustrating than anything. Because of my stroke they wanted to be very careful of another bleed on the brain, so they were very slowly upping my INR. I was on a Heparin drip, with warfrin tablets on the side to ease it up. It took around 5 days to fully get to my target INR, which was so frustrating to wait because other than that, I was all good.

I then needed one final CT scan and angiogram (dye in the blood to test your heart function). Annoyingly there was a two day wait for this, and then two days of intense NHS strikes which slowed it down even further.

As soon as the CT scan results came back on day 13, they were all fine, and I was discharged.

Day 14-15 at home

In total I was in hospital for 13 days. I would say an extra 3-4 days added because of my stroke, and a further 3 days to get my INR up to the right level.

I came home yesterday, so been at home for two days. I feel like a different person vs what I felt 7 days ago. I mostly feel an incredible sense of appreciation for my sight and mobility, which I could have lost entirely from the Stroke. I was walking home from Lidl earlier (one of the most enjoyable trips I’ve ever had) today after picking up a few bits, and suddenly got very emotional – in a thankful way – just really appreciating the contrast of how I felt shorty after my op vs the little things getting back to normal I’d normally take for granted.

I am in virtually no pain, my chest is healing well. I take a couple of paracetamol before bed as my shoulder muscles still feel a bit tight, and sometimes my chest as well, so it just takes the edge off.

I can do normal daily thing perfectly without pain - washing up, making dinner, laundry, showering, cleaning etc. I’m lucky to have amazing friends and family around me but so far trying not to lean on them for anything, and so far haven’t needed to.

Today I've walked around 4 miles - into town for my blood tests, to the eye hospital, to the supermarket, to run a few errands etc. I feel like each day I am able to do more and more and my stamina is building very quickly.
 
Medication

I've been prescribed 6mg of warfrin daily to keep my INR at 2.5, 1 ramipril daily to lower blood pressure & help prevent future stroke, and 1 lansoprozole to take daily for a week (to prevent stomach ulcers).

Mechanical valve

The ticking I can mostly hear at night or if I’m lying on the sofa, but your brain gets used to it quickly and sort of phases it out. I have to say it doesn't really bother me at all so far - if anything at the moment it's a good indication of if I'm pushing myself a bit too hard as if I make a conscious effort I can hear how fast my heart is beating.

Post operative curiosities

I wouldn’t say so much concerns as I’m not concerned, but more curiosities moving forward:

- I am a very active person, I’m not sure how long it will take me to get back to my full active levels. Even at day 14 I’ve walking a good amount of miles, feeling like I can be more active each day, and really looking forward to getting back on my bike (although been told to wait around 6 weeks for the sternum to heal before I should do this)

- I have a fairly busy social life – I do like to go out and have a few beers or wines at the weekend! I know alcohol increases INR, but need to work out over time how alcohol affects my levels. Some people are affected far more than others, I believe it depends on your liver function, metabolism etc. I’m looking to get a self testing INR monitor, and look to test myself at half daily increments after consuming varying levels of alcohol. Everything I’ve been told is in moderation, but I’d like to know for sure from my own results that, for example, I can go to the pub on a Friday, and have 3 or 4 pints without worrying about my INR going through the roof.

- Vision – I’m hoping this will gradually improve as it seems to have done already. This will just be a waiting game.


Advice for those going in

- Take earplugs and an eye mask. I found the noise and lighting fairly unbearable in HDU and ICU.

- Don’t be afraid to use the tramadol button!

- Don’t go in expecting a quick recovery, because you will get frustrated if it’s not as straight forward as you expect. Assume you’ll be there at least a week, if quicker then that’s a real bonus, if longer it will likely be due to INR levelling.

- Expect to feel very broken shortly afterwards, but make sure you are getting up out of bed and walking to the toilet as soon as you can after your op, it will really help to speed up your recovery.

- Ask the nurses **anything**!

- Eat well, even if the hospital food isn’t particularly nice. Get your loved ones to bring in some nice fruit or something similar, I found it very refreshing.

- Be vocal about any side effects, pain, anything that doesn’t feel right.

Happy to answer any questions anyone has, if I can help anyone out by sharing my experience then happy days :)
 
Great write up ibatt I can really relate to a lot of what you have said. I’m a lot older than you (72) and I like your remark of feeling really broken after the op, Me exactly.
I recovered quite quick after havin both my aortic and mitral valve replaced - drainage tubes taken out after 12 hours and stepped down from ICU after 18 hours.
I’m biking (mtb) most days although I realise I’ll never be as fit as before the op.
Good luck for the future, you have a great attitude.
 
Yes, great write-up, ibatt. It brings back memories of all the noise and disturbances I experienced too during hospital, and which i am sure are common. It seems to me that sleeping is an important part of the recovery process, and it amazes me how medical professionals seem oblivious to this. At my local hospital, a guy in the same AMU ward (a general assessment ward for people with different issues) as me who lived close by would go home during the day to sleep, as he knew he wouldn't get any at night!

I had gone in to my local hospital by ambulance, having had what I thought was a heart attack (but wasn't, fortunately), and was then transferred to a specialist heart centre. I learnt afterwards that for planned procedures they actually send out ear plugs and an eye mask as part of their normal procedures.
 
Last edited:
Medication

I've been prescribed 6mg of warfrin daily to keep my INR at 2.5, 1 ramipril daily to lower blood pressure & help prevent future stroke, and 1 lansoprozole to take daily for a week (to prevent stomach ulcers).

Mechanical valve

The ticking I can mostly hear at night or if I’m lying on the sofa, but your brain gets used to it quickly and sort of phases it out. I have to say it doesn't really bother me at all so far - if anything at the moment it's a good indication of if I'm pushing myself a bit too hard as if I make a conscious effort I can hear how fast my heart is beating.

Post operative curiosities

I wouldn’t say so much concerns as I’m not concerned, but more curiosities moving forward:

- I am a very active person, I’m not sure how long it will take me to get back to my full active levels. Even at day 14 I’ve walking a good amount of miles, feeling like I can be more active each day, and really looking forward to getting back on my bike (although been told to wait around 6 weeks for the sternum to heal before I should do this)

- I have a fairly busy social life – I do like to go out and have a few beers or wines at the weekend! I know alcohol increases INR, but need to work out over time how alcohol affects my levels. Some people are affected far more than others, I believe it depends on your liver function, metabolism etc. I’m looking to get a self testing INR monitor, and look to test myself at half daily increments after consuming varying levels of alcohol. Everything I’ve been told is in moderation, but I’d like to know for sure from my own results that, for example, I can go to the pub on a Friday, and have 3 or 4 pints without worrying about my INR going through the roof.

- Vision – I’m hoping this will gradually improve as it seems to have done already. This will just be a waiting game.


Advice for those going in

- Take earplugs and an eye mask. I found the noise and lighting fairly unbearable in HDU and ICU.

- Don’t be afraid to use the tramadol button!

- Don’t go in expecting a quick recovery, because you will get frustrated if it’s not as straight forward as you expect. Assume you’ll be there at least a week, if quicker then that’s a real bonus, if longer it will likely be due to INR levelling.

- Expect to feel very broken shortly afterwards, but make sure you are getting up out of bed and walking to the toilet as soon as you can after your op, it will really help to speed up your recovery.

- Ask the nurses **anything**!

- Eat well, even if the hospital food isn’t particularly nice. Get your loved ones to bring in some nice fruit or something similar, I found it very refreshing.

- Be vocal about any side effects, pain, anything that doesn’t feel right.

Happy to answer any questions anyone has, if I can help anyone out by sharing my experience then happy days :)
I can relate to stroke, but it was way different. I was without my warfarin for three months, no insurance and depressed. Got out of the fog, went to hospital to get back on the warfarin. I had experienced a blood clot that traveled to the back of my left eye. I had bypass and aortic valve replacement in 2001, the eye stroke was in 2018. Was in the hospital for almost a week to get heparin to get back on warfarin and get my head on straight again. Never stop taking warfarin. And be sure to take aspirin everyday as directed by doctor. And forget, the eye stroke was in my left eye, have permanent eye damage, blurred vision.
 
That was a very impressive, comprehensive write-up, probably very valuable for those who have a similar procedure in the future.

One of the hospitals that I went to (not for heart surgery) gave out ear plugs and a sleep mask as part of their new patient kit.

I learned the hard way that I could bring my phone and a charger cable, and earbuds, and watch movies or other things that I subscribe to, on my phone. I also learned that the computers they have in the rooms to take vitals and other data usually have a free USB port or two -- I was able to use a long cord to connect my phone or earbud charger to the computer. I had a battery pack (a Lithium Ion battery that held enough charge to keep phone charged a few times before it ran out of power) as a backup, and more convenient way to charge the phone.

Today, I would probably take an Amazon Fire HD8 tablet for checking things on the Internet and watching videos on some of the services I subscribe to (Sling, Prime, Netflix). The best thing about these tablets is that they work well, and they're not expensive ($40 or $50), so if they break or are stolen, it's not as big a deal as losing a more expensive tablet. It might be a bit bulky in a bed or on a tray table, and I would probably get a stand for it, but it's a good way to pass some time. These can also, of course, be used for reading eBooks.

So, again, this was a good, useful, well documented history of your surgery and recovery.

I'm hoping my suggestions of what to bring NEXT time would be helpful for others expecting to go to the hospital.
 
Great write up ibatt. I had AVR OHS on the same day as you. I concur....the worst part of the hospital was the total lack of sleep. I was kept in the ICU due to some initial complications and then lack of beds in the Step-down unit. Even with masks and ear plugs, sleep is near impossible. For me it was more of the overall trauma and then the being poked and proded every few hours.

Sounds like you are doing great. I am not nearly up to 4 miles of walking, but getting stronger every day. Best wishes for a total elimination of any of the stroke symptoms and a quick return to your full active lifestyle!
 
I've been prescribed 6mg of warfrin daily to keep my INR at 2.5,
just be aware that this is more like a guide, and I'll guarantee you that in the weeks after surgery it will change.

When it changes don't take the "don't want to increase your dose" from hand wringing hapless doctors who really are totally out of their depth with dosing this drug.

The "intention to treat" with warfarin is INR, not dose, INR.

Just keep that in mind and you'll be fine ;-)
 
...When it changes don't take the "don't want to increase your dose" from hand wringing hapless doctors who really are totally out of their depth with dosing this drug...
I've been on warfarin for >10 years. I self-dose now under a doctor's guidance but for about 8 years I was dosed by my cardiologist practice's clinic. I've had good care from nurses and doctors when it comes to warfarin and INR management. They set it up for me with my insurance company and their provider.

Personally, I've seen a lot of doctors in my life and never met one that was "hand wringing" or "hapless."
 
I've been on warfarin for >10 years. I self-dose now under a doctor's guidance but for about 8 years I was dosed by my cardiologist practice's clinic. I've had good care from nurses and doctors when it comes to warfarin and INR management. They set it up for me with my insurance company and their provider.

Personally, I've seen a lot of doctors in my life and never met one that was "hand wringing" or "hapless."
I’m glad you’ve had a good experience. I’ve had a few docs and NPs who don’t know **** about warfarin dosing cavalierly dispense braindead advice. And one time a pharmacist (new, i presume) wouldn’t dispense my refill script without calling and confirming it — I take about 15-17mg a day and she seemed to think I was going to bleed out right in front of her 😂
 
I’m glad you’ve had a good experience. I’ve had a few docs and NPs who don’t know **** about warfarin dosing cavalierly dispense braindead advice. And one time a pharmacist (new, i presume) wouldn’t dispense my refill script without calling and confirming it — I take about 15-17mg a day and she seemed to think I was going to bleed out right in front of her 😂

Warfarin at 15mg a day is a pretty high dose. I had an experienced pharmacist ask me why I was getting so much warfarin (the computer kept auto-refilling my 3-month 5mg dose prescription). My cumulative monthly order for 3 months was too high (270 pills). I told her it was CVS computer glitch and she fixed it. She was just making sure I was testing to be in range and not dosing due to ignorance or that I wasn't stockpiling warfarin to do away with my spouse :)

My mom was on warfarin. My mother in law too. They all got good care even with testing monthly as was done in the old days.
 
I’ve had a few docs and NPs who don’t know **** about warfarin dosing cavalierly dispense braindead advice.
me too, which is why I advocate self testing and self administration. I have done self testing and administration for many years (as do a number of other members here). I'd be happy to discuss with you my method and show you the ropes as it were. I've been doing it for over 12 years now and have taught quite a many to be independent (something like 40 people I know of).

Or you can wait till my book comes out. Professional proof reading is slated for late April.

Best Wishes
 
me too, which is why I advocate self testing and self administration. I have done self testing and administration for many years (as do a number of other members here). I'd be happy to discuss with you my method and show you the ropes as it were. I've been doing it for over 12 years now and have taught quite a many to be independent (something like 40 people I know of).

Or you can wait till my book comes out. Professional proof reading is slated for late April.

Best Wishes
I'd recommend two fact checkers that are experts in warfarin chemistry and dosing plus an editor. Then send it to ~4 technical reviewers. For books that I contributed to or edited/wrote under contract to the US EPA, that was standard practice for their scientific literature. You first make sure it reads well, second make sure the people you trust think you are correct and then third give it the scientific community to make sure you are truly correct and didn't miss anything.
 

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