38/M - 5.5 weeks post AV/Root Replacment (Surgeon Selection, Recovery & Pericarditis)

[acki46]

Hi All,

(Posting in two parts due to character-count limit)

I’ve been lurking for the past six months, ever since I (/my cardiologist) made the decision to have my aortic valve and root replaced.

I have found tons of useful information and lived experiences on this forum, but the most valuable posts for me was reading about other member’s surgery experiences and their road to recovery. These posts helped me prepare for my upcoming surgery and went some way to reducing the anxiety I felt as I approached surgery date.

I am now five and a half weeks post-op and I would like to give back to the community and share my story for others who are facing open heart surgery.

Background
In my early teens, my family GP identified a heart murmur and recommended that I begin seeing a cardiologist once I reach 18. I was diagnosed with a bicuspid aortic valve and aortic root aneurysm. And so began 20 years of yearly echos/MRIs/check-ups with various cardiologists as I moved around. My aneurism was relatively stable at 45-47mm (depending on the sonographer) but approaching the critical limit for operation, which for me was determined to be 50mm.

I always thought that the aneurism would be the trigger for surgery, but ultimately my BAV began to get more leaky with my ejection fraction dropping to 50-55% and my left ventricle beginning to enlarge.

18 months ago, my cardiologist began discussing the need for surgical intervention and that I should begin talking to surgeons to evaluate my options.


Valve Choice and Surgeon Selection
I spent long nights agonising over my choice for mechanical valve, bioprosthetic valve or Ross procedure. I read everything I could, trawled through various forums and watched countless YouTube videos. Ultimately I spoke to four surgeons on the east coast of Australia who I would consider to be experts in their field.

I have decided to share their names and my experience as I found it difficult finding “reviews” of medical practitioners.

Dr Emily Granger (St Vincent’s Private Hospital) – Dr Granger strongly recommended a bioprosthetic valve with subsequent TAVI procedures when the original valve wore out. St Vincent’s Hospital is known for predominantly using bioprosthetic valves and Dr Granger indicated that 80-90% of her valve replacement procedures were bio valves.

We discussed the effective duration of the bioprosthetic valves and the longevity of subsequent TAVI replacements. Ultimately, I couldn’t reconcile my expected (hopeful) life expectancy of 80+ years with a valve life of 10-15 years. Assuming a best case scenario of a valve lasting 15 years, I would be having surgery at 38, 53, 68 and 83 years of age. While valve in valve is viable I just don’t think you can stack 3+ valves inside each other and I felt I would need another OHS at some point down the track. This would be further complicated by a need to replace my aortic root.

Dr Peter Skillington (Melbourne Victoria) – Dr Skillington is one of the few cardiothoracic surgeons in Australia that carries out the Ross procedure.
Given my relatively young age (for a heart patient), the Ross procedure was attractive given the lack of ongoing anti-coagulation therapy. I had a good discussion with Dr Skillington and ultimately was advised that due to the size of my aortic root, I would not be a viable candidate for a Ross procedure – decision made for me

I met one of Dr Skillington’s patients (we just happen to live equidistant from the same pub). He is about my age and had a Ross procedure carried out – he spoke highly of Dr Skillington and his team.

Dr Paul Bannon (Royal Prince Alfred Hospital) - Dr Bannon said the valve choice is ultimately up to me and he would work with me to achieve the best outcome. Asked what his choice would be in my position, Dr Bannon indicated he would select a bioprosthetic valve, as this would allow him to continue surfing in remote parts of the world without risk of a serious bleed if dragged across a coral reef (I don’t have the funds or skills to surf remote reef breaks, so this was not a real consideration for me).

We did also discuss a David procedure (valve sparing aortic root replacement) with an attempt to remodel my bicuspid aortic valve back into a tricuspid version of its former self. After further review of CT/MIR scans, he decided that the likelihood of this being successful longer term was unlikely and further surgical intervention would be required. Dr Bannon indicated that he had performed ~15 valve remodels with a reoperation rate of 25% - I know this is a small data set, but I didn’t like the odds.

@Wiles Darkwinter gives a good account of his experience with Dr Bannon here:

My Story - Valve Sparing Aortic Root Replacement – David Procedure, 16 Feb 2021.

Dr Manu Mathur (North Shore Private) – Dr Mathur was recommended by my GP as Dr Mathur was the only surgeon who was prepared to operate on a patient with severely diseased valves and my GP indicated a favourable outcome.

Dr Mathur recommended I go with a mechanical valve option given my age and certainty for further surgical intervention if I selected a bioprosthetic valve. I found Dr Mathur to have a patient demeanour and he spent a significant amount of time discussing various options, risks and likely outcomes with me.


My takeaway from the various discussions I had with these surgeons is that there is no right/best option in my situation and ultimately it is my choice with consideration of:

- comfortability with further surgeries (bioprosthetic)
- ongoing anticoagulation (mechanical)

This is a somewhat daunting position to be in, as you are making a decision about your future life with somewhat limited information.

In the end, I decided on a mechanical valve with Dr Mathur and my surgery was scheduled for 11th November 2022.

 

[acki46]

First Attempt at Surgery (11/11/2022)
It felt a little surreal as I began to get closer to the day of surgery. A significant effort was spent on coordinating family members to look after our kids, squaring away work projects for my planned absence and mental preparation for the surgery/recovery process.

In the two week’s prior to surgery I had a head cold that I thought I just managed to shake before being admitted to hospital. On the day of admission, my wife and I travelled to Sydney and I had the usual pre-surgery work up (bloods, Xray etc.) and I was served an early dinner of beef stroganoff. Dr Mathur saw us around 6pm and advised that the surgery will be delayed due to an elevated white blood cell count and increased risk of infection that this poses. Fair call and I’m glad that he was looking out for my well-being – I packed up my bags and walked out of hospital stunned/dazed about what had just happened (at least I didn’t need to worry about dinner).

Surgery (17/2/2023)
We ended up rescheduling the surgery for 17th February 2023. In preparation for surgery, I was far more diligent with mask wearing and hand sanitisation (especially around my kids)– I didn’t want a repeat of what happened three months earlier.

I was admitted at 3pm the day prior to surgery with the usual pre-op tests. Hot tip – shave your chest the night before, it saves a dry shave with a cheap razor and nurses will love you for it.

The surgeon had planned an early start and I was picked up for surgery at 7am the following morning. My bed was wheeled into operating theatre reception area where I said goodbye to my wife and then I was moved to the preparation room. I remember talking to the anaesthetist and one of the theatre nurses – I don’t remember being put under

Waking up and ICU
Prior to the surgery, the nurses told me not to fight the breathing tube upon waking up. Definitely easier said than done when it feels like you can’t breathe. I only think that it was a couple of minutes between waking up and removal of the breathing tube but my memory is pretty fuzzy. If I had to summarise the breathing tube – it wasn’t as bad as I expected.

The nurse gave me some ice chips to suck on which was glorious – I was so thirsty. I also remember looking down at my feet and given them a good wiggle to make sure that I could still feel/move them (perhaps an irrational fear, but it felt reassuring that my limbs were all still working)

The day after surgery, the physios made sure to get me out of bed to spend some time sitting upright in a recliner chair. This required a significant amount or orchestration given the numerous attachments (drains, catheter, EKG etc.). It was also amazing how exhausting I found this.

My second night in ICU was quite unpleasant and I had a lot of discomfort, mostly caused by the drainage tubes. The surgeon saw me the following day and gave the go-ahead to remove the drains/catheter and move me to the ward. I wasn’t sure what to expect, but removing three drains and a catheter is not a nice experience albeit, a relatively quick one.

Ward (Days 3-6)
I had a really hard time getting comfortable on the ward in the first couple of days there. I was simply not able to find a comfortable position while resting/sleeping. I had very little pain around my chest/sternum but I found that my lower back/legs were really stiff and sore. At night I tended to alternate between the bed and the recliner to try and find some comfort.

I also had trouble fully emptying my bladder and at one point, there was discussion about having to reinsert a catheter (I have never tried to pee so hard in my life). In the end, they were happy with my efforts and let me be.

It was around day four that I had my first shower – it was absolutely glorious and I spent a good 20 minutes just sitting there, it’s amazing what a little bit of warm water will do for you.

Each day I managed to walk a little bit further and I could feel myself getting stronger and recovering. It was also around this time that the majority of my remaining ‘connections’ were removed (cannulas/pacing wires etc.) – removing each of these felt like I was getting one-step closer to going home.

Ward (Days 6-10)
I was quietly hoping for a day 7 discharge, but this didn’t eventuate. At this point I was pretty well over the daily blood tests and three heparin shots, but my INR was very slow to increase so I was kept in hospital for an extra couple of days. This time in the hospital was pretty uneventful and I was in a fairly solid routine of walks/naps/tv. I was able to get myself outside to the hospital café and it was nice to get some fresh air.

Around day 7 I also managed to sleep on my side for the first time (I’m a side-sleeper) – I found this made a big improvement to my sleep patterns

Ultimately I was discharged on day 10 and I have never been happier to leave hospital!

Home (Weeks 2-5)
It felt great to get home and be back in comfortable surrounds with my family. I began walking regularly and it was amazing how quickly my fitness began to improve. By 3.5 weeks I was able to comfortably walk 5km

The biggest challenge I faced was an INR that was refusing to move much from my hospital discharge value of 1.9, despite ever increasing doses of warfarin. A week after discharge, I was on 10mg warfarin and my INR dropped to 1.6 – I got to reacquaint myself with daily double Clexane injections for half a week.

Other than that, I felt great and my recover was progressing significantly better than I had expected. At week four I was able to drive again which gave me additional freedoms and I had signed up for cardio rehabilitation at the local health clinic.

Pericarditis (Week 5 onwards)
Wednesday last week, two days shy of my 5 week anniversary, I woke up with a really sore upper back (trapezius muscle). I initially discounted this as a musko-skeletal pain as I had niggling shoulder pain earlier that week which was relieved through massage. The pain was worse on Thursday morning and by Thursday night I had developed a low grade fever (37.6 deg C). I woke up Friday morning with severe sweating and decided that a trip to ED was in order. I underwent a battery of tests including:
- EKG
- Xray
- Echo
- CT Scan

A major emergency (i.e. suture leak) was ruled out and I was diagnosed with mild pleural/pericardial effusion and likely pericarditis. I was sent home that afternoon and advised to rest.

My surgeon advised that ~5% of people developed pericarditis post-op. This is an unfortunate speed-bump in my recovery and while the pain has almost resolved, I have noticed a significant drop in my energy/fitness levels, what I found easy last week has become difficult again and it almost feels like I have regressed 2-3 weeks. I get that this is small in the grand scheme of things, but still frustrating when it felt like the end was clearly in-sight.

Other Comments
I wanted to touch on a couple of other things that seem to come up regularly

Valve Ticking – My wife kept this to herself until post-surgery, but she was actually worried that my mechanical valve would keep her awake at night . It does not!

I can definitely hear it tick, but at times I have a hard time distinguishing between an aural tick or just a ticking sensation in my chest. While it doesn’t bother me, I can certainly see why some people would be concerned by this.

Warfarin – I’m still working with my surgeon to get my INR levels steady. It took me almost four weeks to get within therapeutic range and at today’s test it shot high to 4.6 (perhaps impacted by pericarditis/paracetamol).

The valve manufacturer will supply me with a CoaguCheck machine, so I will move to home testing shortly.

While I haven’t cut myself since being on Warfarin, I haven’t noticed increased bleeding during the multiple blood tests I have had since surgery.


Thanks
I think I underestimated the effect that this surgery would have on my loved ones. You tend to get caught up in your own mental/physical struggles and I forgot what it is like for people who are waiting for you to wake up after surgery and who have to see you hooked up to all the various monitors and machines in ICU. A huge thanks to my wife for the support she continues to provide throughout my recovery period.

A big thanks to all those people who have shared their story on here or other forums and helped put my mind at ease.

A special thanks to @DJ-Rae09 , as a fellow patient of Dr Mathur’s, Tim has gone to great lengths to answer my questions, act as a sounding board and provide support throughout what is arguably the most challenging period in most people’s lives.


I’m more than happy to answer any questions anyone may have.

Alex

 

[pellicle]

Hi All,

sorry to read of the rough ride.

I had something similar (I think)

While I haven’t cut myself since being on Warfarin, I haven’t noticed increased bleeding during the multiple blood tests I have had since surgery.

what's your INR now? Are you managing it? Reach out if you want a hand

The biggest challenge I faced was an INR that was refusing to move much from my hospital discharge value of 1.9, despite ever increasing doses of warfarin. A week after discharge, I was on 10mg warfarin and my INR dropped to 1.6 – I got to reacquaint myself with daily double Clexane injections for half a week.

classic mismangement stuff there ... if it doesn't move up it means only one thing, the dose needs to increase. They all too often say stupid things like "but you're already on a big dose"

660 mg per day.

Picture this - you go to visit your in-laws for Christmas and you forget your warfarin. You go to the ER and try to convince the doc to write a prescription.

Now if you were successful you trundle down to the local Walgreens to see if they have 7 bottles of warfarin 10 mg tablets on hand.

Valve Ticking – My wife kept this to herself until post-surgery, but she was actually worried that my mechanical valve would keep her awake at night . It does not!

my wife didn't mind it, there's some amusing anecdotes around that and her identification of my mind changing about what was supposed to be a massage.

Best Wishes

 

[DJ-Rae09]

special thanks to @DJ-Rae09 , as a fellow patient of Dr Mathur’s, Tim has gone to great lengths to answer my questions, act as a sounding board and provide support throughout what is arguably the most challenging period in most people’s lives.

Hey no worries mate. I'm happy to have helped you out! @Timmay did the same for me during my OHS experience and he lives on the other side of the earth (US), it helped me a lot! Also @pellicle has greatly helped with my INR management and understanding of it.

I hope you get over the pericarditis ASAP! Pretty soon though this will ALL be in the rear vision mirror and you'll forget you had OHS (well maybe not all ).

And looking forward to that beer catch-up once you're able

Cheers

 

[Lucker]

acki46​

Thanks for your story. I'd like to ask you:
did you take any meds regularly before the surgery?
did you have any heart-related symptoms before the surgery?
I wish you all the best.

 

[Chuck C]

Welcome to the other side!

And thanks for sharing such details about your journey, before and after surgery. It will be of great benefit to others.

Hoping you quickly get through your episode of pericarditis.

 

[Chuck C]

And looking forward to that beer catch-up once you're able

Be careful. You're both on warfarin, so that beer could very well be the end of you

 

[acki46]

sorry to read of the rough ride.

I had something similar (I think)




what's your INR now? Are you managing it? Reach out if you want a hand



classic mismangement stuff there ... if it doesn't move up it means only one thing, the dose needs to increase. They all too often say stupid things like "but you're already on a big dose"








my wife didn't mind it, there's some amusing anecdotes around that and her identification of my mind changing about what was supposed to be a massage.

Best Wishes

Thanks for your offer @pellicle - I'll send you a PM re INR.

acki46​

Thanks for your story. I'd like to ask you:
did you take any meds regularly before the surgery?
did you have any heart-related symptoms before the surgery?
I wish you all the best.

Hi @Lucker,
I was asymptomatic prior to surgery - every now and then I would get mild chest pain, but everytime I had it checked out, the medical team advised that it was most likely referred musko-skeletal pain and a back massage eliminated any further pain (better safe than sorry though).

Pre-Op Medication
- Candesartan (Atacand) 16mg - I was on this for about 8 years prior to surgery and it was used to address hypertension and take some load off my heart. Given my age at the time (early thirties) I was not keen on beta-blockers. I had a very good cardiologist at the time who found research indicating that this drug had been successfully used to eliminate/delay size increases in aortic anneurisms. As far as I could tell, the only side effect of this drug was a reduction in my blood pressure to normal levels.
- Atenolol (25mg), my current cardiologist prescribed this beta blocker ~two years ago when the first signs of my left ventricle growth appeared. For the first two months, I definitely noticed a reduction in cardiac output and reduced heart rate. This seemed to settle down over time at which point I most likely just got used to the side effects. I was still able to carry out cardio intense activity I enjoyed (surfing/bike riding/touch footy).

Post Op Medication
- Cartia (100mg Aspirin): only prescribed for the first six months post op. Its function is to prevent clot formation in the dacron tube and I think to help the body with integrating the aortic root.
- Atenolog (25mg) as above - once the dust settles I will have a discussion with my medical team on wether I can be weaned off this drug but I suspect that is a conversation 6-12 months from now.
- Warfarin - dosage to be be finalised but will likely sit around 12mg I think

My surgeon took me off candesartan post-op and asked me to continue monitoring my blood pressure with a view to restarting the medication should my BP elevate. Interestingly enough, my BP post-op has never been better. I'm currently averaging 122/74 - hopefully it stays this way.

Be careful. You're both on warfarin, so that beer could very well be the end of you

@Chuck C - INR party


Cheers,

Alex

 

[Lucker]

@acki46​

As for symptoms, what about forceful (bounding) pulse? Did you feel it, or do you feel it now?

 

[acki46]

Hi @Lucker, as previously mentioned I was asymptomatic prior to surgery.

Post surgery it feels as though my heart has a much stronger beat, this is particularly exascerbated when I take a deep breath in and it feels as though my heart is 'thumping' within my chest cavity. This is not reflected in a stronger/bounding pulse. I asked my surgeon about this at the three week follow up and he said it was a normal side-effect of surgery. I have also seen other forum members describe a similar feeling post-op and my understanding is that this will settle over time.

Cheers,

Alex

 

[pellicle]

Post surgery it feels as though my heart has a much stronger beat, this is particularly exascerbated when I take a deep breath in and it feels as though my heart is 'thumping' within my chest cavity.

for what its worth I had that in the months following surgery. I put it down to inflammation.

I did also note that if I breathe in very deep (deep as I possibly can) and hold it that my HR drops to about half what it was after 3 or 4 beats. I used that to "stem" rapid HR that I had in the early months after surgery (think 100 for just sitting around).

HTH

 

[acki46]

4 Month Update

I had full intentions of giving everyone a three-month update, but then normal life got in the way and so here we are at the 4 month mark!

At three months I had follow up appointments with my cardiologist and surgeon. The echo results were very positive, the left ventricle size had reduced somewhat (back to almost within normal range). My ejection fraction was within normal range and mild leakage on the mitral/tricuspid valves had reverted back to trace leakage which my cardiologist put own to the size of my heart reducing. I will have follow up appointments at one and two years respectively.

I completed my cardiac rehabilitation program around the same time and I was glad that I dedicated some extra time to see this program out as it gave me the confidence to continue exercising by myself.

I returned to full time work 10 weeks post-surgery. I could probably have gone back earlier (8 weeks?) but I had enough sick leave built up and I didn’t see the point in rushing back any earlier than I needed to.

Thanks to @pellicle for his help with my INR/Warfarin management. My dose has slowly crept up to 18mg daily which is probably partly attributed to my fast metabolism and increase in exercise throughout my recovery. The high warfarin dosage is annoying given the current lack of 5mg tablet supply here in Australia – 9 x 2mg tablets daily means I’m back at the pharmacist weekly to refill my script. I’m hoping this resolves itself in a couple of months.

I test twice a week and am noticing that my INR is becoming more stable as time goes on. I did have one major excursion to 3.8 (from about 2.5) but I can put this down to 5 days of consecutive moderate drinking during a work trip. I’m getting better at testing and have stopped wasting test strips due to insufficient blood volume – like others on here have said, it’s a straightforward affair and only takes 5-10 minutes. I’m not quite there yet, but at some point I plan on transitioning to weekly testing.

One of my recovery ‘bucket list’ items was getting back into surfing. I went for my first surf at 3.5 months. I had a fair amount of discomfort at the base of my sternum and I was probably only in the water for about 30 minutes, however it was really good to get out. I have since gone for a longer session and it felt a little bit better. Generally speaking I still have some sensitivity around my sternum area i.e. rough and tumble play with the kids or trying to hang from monkey bars. I expect that this will continue to subside as time goes on. I have also been going for a bike ride several times a week (~20km) and the odd walk here and there. All things considered, I am more physically active now than before surgery. Not because I couldn’t, rather I am now more motivated to look after my health and well being.

In terms of daily life, it is really no different than pre-surgery. I don’t watch what I eat, I have no real activity restrictions and I continue to drink in moderation. I have cut myself and it does take longer to stop bleeding. While chopping firewood I flung a bit of timber into my shin, it hurt, swelled up but I can’t say I noticed a massive increase in bruising.

Looking back at this lifechanging event now, it feels like it was an age ago. It is hard to reconcile my next comment with how I felt about surgery beforehand, but while it wasn’t a pleasant experience, it wasn’t as bad as I had imagined.

Thanks to all who have offered support along the way.

Oh, @DJ-Rae09 and I did catch up for that celebatory drink!

Alex

 

[Superman]

Well, late to the party. Nice work overall. I have to admit I skimmed it as it’s a very busy time of year around here. Glad to see you’re back to work and seemingly doing well.

Regarding the pericarditis-I’m convinced surgical teams are excessive in pushing IV fluids during procedures these days. I don’t recall being all swollen up after my first heart surgery in 1990. But I was a balloon and had post operative challenges with fluid after my second surgery in 2009. It would be nice if they explained why and warned people about the amount of fluids they push. But I digress.

Glad you’re on the mend and are finding the help you need here!

 

[pellicle]

While chopping firewood I flung a bit of timber into my shin, it hurt, swelled up but I can’t say I noticed a massive increase in bruising.

Ouch

I feel that

 

[Chuck C]

Thank you for such a complete update!

Glad to hear that things are almost completely back to normal.

In terms of daily life, it is really no different than pre-surgery. I don’t watch what I eat, I have no real activity restrictions and I continue to drink in moderation. I have cut myself and it does take longer to stop bleeding. While chopping firewood I flung a bit of timber into my shin, it hurt, swelled up but I can’t say I noticed a massive increase in bruising.

This is almost the exact same as my experience on warfarin. Daily life is really no different, we can be physically active and eat what we want, with only a couple of exceptions- grapefruit, for example.

It is hard to reconcile my next comment with how I felt about surgery beforehand, but while it wasn’t a pleasant experience, it wasn’t as bad as I had imagined.

Also, this was my experience.

The thorough report is appreciated and will help others. Thank you!

 

[DJ-Rae09]

Oh, @DJ-Rae09 and I did catch up for that celebatory drink!

Yep, two new Cyborg's catching up over a few beers

Thanks for the beers mate, should do it again soon! Maybe when you hit your 1 year mark?! Any excuse for a beer right?

Speak soon!

 

[jeffreycaulfield]

Hey @acki46, thanks for sharing this. Im currently evaluating a Ross with Peter Skillington or a mechanical. How are you going since your mechanical?

 

[acki46]

Hi @jeffreycaulfield,

Thanks for reaching out - generally speaking, I am doing well post op. I'm at the 15 month mark now and back to full health (in fact, I climbed Yosemite's half dome just last week; 28km with 1,500m vertical in 8.5hrs).

At this point I have no regrets choosing a mechanical valve, I particularly like that my yearly echos aren't marked with a "what-if" the function of an alternate valve has deteriorated. While nothing is certain, the likelhood of requiring a reoperation is low. In my current position, I would absolutely hate the thought of potentially needing another surgery within the next 10 years - I feel like this time would just fly by.

Having said that - it appears that I may be in the midst of another pericarditis episode. Today's echo didn't show any fluid around the heart, however I suspect that the blood test results may have inflammation markers. While it is likely that the pericaridits is related to the OHS, I do not think valve selection is playing a part in its presentation.

Happy to chat furhter if you'd like.

Alex

 

[jeffreycaulfield]

Hey @acki46 ,

Thanks for sharing! Great to hear you climbed half dome! I did it about 10 years ago and loved it. How were your energy levels? I get so tired after even a 3 hour hike now.

Surfing is a big concern for me with OHS. Also great to hear you're back in the water! You mentioned above you done some short sessions but had some discomfort. Has this eased?

This may sound stupid, but I just assumed a mechanical valve would be done via TAVI. Was this an option? Perhaps the results are better for younger patients with OHS and mechanical Vs TAVI?

I'm so appreciative of your posts. Thanks again!

 

[Chuck C]

This may sound stupid, but I just assumed a mechanical valve would be done via TAVI.

A mechanical valve cannot be done via TAVI. Only tissue.