Mental state before and after surgery

[DrCooper]

Hi everyone,
First of all I wanted to say I've been watching and admiring the amazing community in this forum for almost a decade, but this is my first post. It is comforting to see so many people here living normal lives after the surgery and offering their experiences. Thanks for being such great company on this journey! <3

I'm 33 years old and have been aware of my BAV since my childhood years and monitoring it regularly. It was stable for a long time, but since 7 years it has been worsening quite fast. Long story short in 2016 all values were on the mild range while since a couple of years I'm on the severe / critical range.

I have been mostly asymptomatic even though currently I don't do very high intensity sports anymore and limiting myself only to brisk walks and moderate cycling. I stopped being active as every period of my life I was getting more into shape and fit my next echo was coming progressive. So to my mind I associated exercise with my progression.

The reason my cardiologist did not refer me earlier for surgery is due to the fact that my LVEF has been quite solid (~60%) so he was like as long as the heart function is stable we keep monitoring. But last year he suggested me to start preparing for it as he sees a big change in pressure gradient, LV mass and ascending aorta diameters.

Both the cardiologist and the surgeon he referred me to, think that a mechanical valve and aorta replacement is the way to go. After researching a lot of the medical literature and the posts here and on the reddit sub, I came to the same conclusion as well. They suggested the On-X and I think this better suits my risk appetite, assuming it's quite newer and less tested in the long-term compared to St. Jude, but has gotten FDA approval for lower INR.

Rationally, I know that the odds are on my side and I will likely live a normal life.

But despite this... in the last years I have been filled with huge anxiety about the future. As a person I always think of the worse and fear that I will get sick e.g. get a stroke and become a "burden" to my family. Struggling to enjoy nice moments such as holidays or breaks. Not sure if this will improve after surgery (it might even get worse), but it's affecting the relationship with my family and work, as I'm quite often irritable and not nice, and want to be more and more on my own thoughts.

Did any of you experience a similar situation?

 

[Zoltania]

Hi "DrCooper,"

It sounds as though you have done your research and have a good medical/surgical team supporting you, and you know rationally that you are likely to do well with surgery and your future life.

It's normal to be anxious about the unknown, and if you've been reading this forum for years you will have seen many scared people joining, getting through their surgeries, and reporting back from "the other side" with positive news.

Being as anxious as you describe about not only the surgery but also your post-surgery future sounds like a very difficult way to go through life. If we all spent our time worrying about possible future strokes and heart attacks and cancers and all the other ills that plague humanity, we would never be able to enjoy sunsets and fresh-baked cookies and purring cats and all the other things that make life wonderful. That would be no way to live.

To me anxiety seems similar to depression, in that both conditions involve your brain lying to you and telling you that things are worse than they are and will never get better. It's easy to get caught up in rumination and miss out on the beauty of the sunsets.

If you are in the habit of feeling anxious, that may not vanish after surgery; you may just find slightly different things to be anxious about. I spent plenty of time in the first year or two after surgery worrying about every fast heart rate or dizzy moment. But fast heart rates and dizzy moments are part of the normal human physical condition as well, and we just have to put these things in perspective.

There are many kinds of help available for anxiety and related conditions, not just professional help but also books, classes (e.g. meditation classes and apps), and supportive groups like this one. You'll find plenty of posts in the archives describing the various techniques that people use to cope. I hope you can find some information that is helpful for you.

 

[dick0236]

Rationally, I know that the odds are on my side and I will likely live a normal life.

But despite this... in the last years I have been filled with huge anxiety about the future. As a person I always think of the worse and fear that I will get sick e.g. get a stroke and become a "burden" to my family. Struggling to enjoy nice moments such as holidays or breaks. Not sure if this will improve after surgery (it might even get worse), but it's affecting the relationship with my family and work, as I'm quite often irritable and not nice, and want to be more and more on my own thoughts.

Did any of you experience a similar situation?

I sincerely doubt that any of us did not have the same thought you have pre-surgery.......How could we not? They want to cut on the very engine that keeps you alive. We also had the same fears of being a burden. I know I did. None of my fears came true and I sometimes wonder "How in the hell did I make it after some of the stunts I've pulled post-surgery ?".

The odds are VERY MUCH in your favor to live a normal life with only minimal interference with your normal life-style.

Remember, OHS and a valve is like an elephant. You can only eat it one bite at a time......no matter how hard you try to solve all of the "what iffs" in your future life right now.

 

[skier]

I have been mostly asymptomatic even though currently I don't do very high intensity sports anymore and limiting myself only to brisk walks and moderate cycling. I stopped being active as every period of my life I was getting more into shape and fit my next echo was coming progressive. So to my mind I associated exercise with my progression.

Consider how much not being active also impacts your mental state. I had substantial exercise restrictions for a year before my aortic valve replacement (mechanical) and aorta repair. I realized that exercise is essential for me both mentally and physically. It's great to be on the other side with just a few exercise restrictions that don't limit me. My mental state is much better, being able to exercise the way I want to.

Get it done. Better to have it behind you than in front of you.

 

[Dunwanted]

Hey Dr. Cooper, i see you have done all your research, i simpatize with you specially as i felt the exact same way as you did, it is a huge surgery to go through that will affect you mentally and phisically.

Since my surgey it was a bit thought to be honest (no sugar coating it) i was symptomatic as well or belive to be, but the thing is that the change is so slow that you wont notice a huge difference, but after i had my surgey and recovered i now have a lot more energy and i can be a lot more active than before, so the surgery not only improved my life expectancy but it also greatly increased my quality of life.

Feeling anxious and nervous is completely normal, keep researching and remember you have a support group with your family and loved one and also in this group aswell.

please feel free to ask me any question you may have i am very happy to share my experience.

i had my mechanical valve implanted nov 21, 2022 ON-X Valve, 31M

 

[pellicle]

Hi

as others have said, I think you're on the right track. However I just wanted to address this point:

They suggested the On-X and I think this better suits my risk appetite, assuming it's quite newer and less tested in the long-term compared to St. Jude, but has gotten FDA approval for lower INR.

I would phrase it as "has never bothered with FDA approval for lower INR".

I think that's important to clarify in light of your phrase "risk appetite".

I would suggest that this recent post of mine should be considered and weighed by you:

https://www.valvereplacement.org/threads/inr.889214/#post-926383
not least because as you'll see there is a lot of smoke and mirrors in that FDA (marketing) move. Don't forget to take the concomitant aspirin with that lower INR too.

Then there is this post which compares On-X claims vs actual measurements
https://www.valvereplacement.org/threads/aortic-valve-choices.887840/page-2#post-902334
Lastly you've probably seen this graph here before and it alludes to points I made in that first reference.

from "Optimal level of oral anticoagulant therapy for the prevention of arterial thrombosis in patients with mechanical heart valve prostheses, atrial fibrillation, or myocardial infarction: a prospective study of 4202 patients."
study at jamanetwork.com

But whatever you decide upon will be much better than not deciding upon something.

Best Wishes

 

[DrCooper]

Hello from the other side,

I had my surgery ~5 weeks ago.
The surgeon replaced the aortic valve plus the semi-arch of the aorta with a combined ON-X 25mm + Vascutec graft.

Overall the operation went well, besides my rhythm. A few hours after the OP I was already pacemaker dependent, as I developed 3rd degree AV block.

We waited some days after a few attempts of letting my heart try alone hoping it will recover, but eventually I had to get a permanent pacemaker implanted a week after the OHS. Turns out the chance of getting it, at least statistically is ~5% which is quite considerable. My assumption is that my valve was super calcified and the surgeon had to remove a lot of diseased tissue around the valve near this critical AV node area.

Compared to the valve surgery the pacemaker implantation is just as simple a root canal treatment. Took about an hour and a half, and they did it with local anesthesia while fully awake. The doctor hopes that my natural conduction will recover and the pacemaker will be there as backup. He mentioned that even if conduction recovers, removing the pacemaker is more risky than leaving it in.
I have the check for it in 2 weeks, hope all is good.

In total, I spent 6 nights in ICU and 2 nights in normal ward.

After the surgery I moved to an in-patient Rehabilitation as in my country it’s covered by basic health insurance and I felt more confident with it.
Best decision ever made, as I had some extra minor complications the weeks after.

First I had a very high fever which was not attributed to bacterial infection rather than to post traumatic cardiac syndrome. My inflammation markers (C-reactive protein) were super high the first week. Luckily paracetamol and metamizol did a good job in keeping it low and letting me function.

Things went south, when the doctor following me decided to remove all pain killers as I have been pretty much pain free after the first week. Unfortunately for me painkillers have been critical in keeping my inflammation triggered fever to low levels. So I started feeling very weak and dizzy without these medicine, while my heart rate was pretty high (resting at 95-100 bpm).

The second day without painkillers, I developed a ventricular tachycardia episode twice over an hour. We managed to record it on EKG and saw that pacemaker was pacing despite my heart beating at 160 bpm. The thing is that based on my settings the pacemaker should not pace above 140 bpm so quite a strange event. I was prescribed bisoprolol 5mg and since then I resumed a nice lower rate. The downside is that I can’t get my heart rate more than 140 bpm anymore.

Another issue was my drainage on the bottom of the sternotomy that was still leaking wound secretion for almost 3.5 weeks post op. Three consecutive wound swabs did not reveal any bacterial growth, and the issue was attributed to the healing sternum tissues and bones. We had to treat it with daily changes of the dressing, so being in patient helped a bit.

The program in the in-patient rehabilitation is fantastic. They had us do a variety of things:

1. light movement, strength and coordination exercises. Eg walking in a specific pattern, walking while rolling a hula hoop wheel on the ground, light squats, lunges, throwing/catching balls or soft light objects to other patients and doing strength exercises on the stairs.
2. Stationary bicycle with EKG.
3. Walking/ Hikes: initiallly 30 min with pauses and over the days increased to 1 hour with no pause. Rhythm at the end was something like 13 min/km.
4. Strength training: Legs, abs, lower back, biceps/triceps with 2-3 kg.

The sound of the heart has been very disturbing initially and was bothering me when trying to sleep. I think I got used to it but at times I find it disturbing. Trying to think positive that it’s a sign of my heart working works, but it can be stressful when I miss some beats or the heart does not beat like a nice clock that can happen during the recovery period.

 

[pellicle]

Hello from the other side,

welcome to the new life

I had my surgery ~5 weeks ago.
The surgeon replaced the aortic valve plus the semi-arch of the aorta with a combined ON-X 25mm + Vascutec graft.

excellent, now the next thing is probably to master INR management and sit through a few more followup imaging sessions.

Glad it all went (as I'd expected) well.

Best Wishes

 

[DJ-Rae09]

think that a mechanical valve and aorta replacement is the way to go

I had this done July last year to replace my BAV and aorta with the Bentall procedure, I'm 44 now. My life is 100% back to normal and sometimes forget I had OHS lol.

All the issues including LVEF (it was 45%) and LV mass size all recovered back to normal ranges 6 months post operation.

IMO, mechanical valve at your age is a wise choice. I chose it because I didn't want future OHS and Wafarin I found is quite straight forward to manage if you do it at home.

Rationally, I know that the odds are on my side and I will likely live a normal life.

You should and will. I was surprised at how quickly I recovered from OHS... probably due to that I had age on my side

Good luck with your future operation. Try and keep positive before and after as this is all temporary and its for the good.

Cheers

 

[DJ-Rae09]

I hope you recover well

 

[LondonAndy]

Glad you are through the surgery. I ended up with a pacemaker as well, after my valve surgery in 2014. I also had very bad calcification, so perhaps you are right about this being the reason. I'm now on my second pacemaker, and that was an easy operation too: I was in and out of hospital the same day.

When you say that your pulse was 160 and your pacemaker was pacing, do you mean that your pulse was 160 because of the pacemaker? Remember that they are a "safety net" - there to stop your pulse rate dropping too low. I'm just wondering if your heart did indeed have some electrical recovery?

 

[DrCooper]

Thank you everyone for your positive messages!

When you say that your pulse was 160 and your pacemaker was pacing, do you mean that your pulse was 160 because of the pacemaker? Remember that they are a "safety net" - there to stop your pulse rate dropping too low. I'm just wondering if your heart did indeed have some electrical recovery?

Two weeks post-op I mentioned to the doctor I was worried about the pacemaker, and we tried to check and modify some of the settings. We ended up allowing a higher waiting time till the pacemaker kicks in (hysteresis). That resulted in a natural pacing of about 50% of the time. However, my doctor then spoke to the pacemaker specialist supporting my surgery and he recommended to leave it to the original settings with low hysteresis tolerance till the 6-week check, so we switched back a few hours later.

The last day of my in-patient rehab they asked me do a stress EKG, and there they could not see anymore the pacemaker "triggers". Normally that's visible on the EKG signal. I was a bit worried, thinking the pacemaker is not working anymore, bu the doctor said that my own conduction system has recovered and is faster as the hysteresis threshold of the pacemaker (If I recall correctly, that was set to 120 ms and turns out my own heart was 80 ms). But waiting till my 6-week check to confirm this (that will be in ~2 weeks).

As for the pulse rate dropping too low, since two nights I see that my heart rate wants to go below 60, but the pacemaker keeps it exactly on that level (with some measurement error from the Apple Watch). This is likely the result of the beta blocker, and will need to discuss with my cardiologist how to handle the combination of beta blockers and pacemaker.

What is your bradycardia threshold setting? Seems like 60 is the most common, but with beta blockers I can easily see my rate going below that during sleep.
Before the operation I used to have resting rate around 50s, despite not being super fit/active (without b-blocker, only with ACE-inhibitor that has a very minor/none effect on HR).

 

[LondonAndy]

Ah! So your heart's electrics have recovered, and that would explain the high pulse rate, and of course the pacemaker is now simply providing the safety net. So that's good.

Yes, mine is set to 60bpm minimum too. I did flirt with the idea of asking for a lower minimum, as I felt I was feeling too active when I went to bed, but by the time of my next check-up (at six months) I had got used to 60 and so didn't ask. (In fact my main question was: now that my heart beat is guaranteed, how do I die? I thought I might be immortal (subject to keeping the battery running! )

 

[Zoltania]

Another issue was my drainage on the bottom of the sternotomy that was still leaking wound secretion for almost 3.5 weeks post op. Three consecutive wound swabs did not reveal any bacterial growth, and the issue was attributed to the healing sternum tissues and bones. We had to treat it with daily changes of the dressing, so being in patient helped a bit.

The hole where my chest tube had been placed continued to drain for three weeks after my surgery, which I hadn't expected. I kept it covered with gauze and surgical tape, and in time it healed completely. I pretended it was an arrow wound to make it seem cooler .