Back in the waiting room...

I haven't been on here for a few months because frankly I wasn't coping with my cardiologist repeatedly telling me he was going to refer me for surgery and then repeatedly not referring me, but things are finally happening.

After seven months, follow ups from my GP, repeated phone calls from myself, and eventually deciding to find another doctor, I finally got referred. To an interventional cardiologist who specialises in transcatheter procedures. Who did some tests then referred me to a surgeon.

I am scheduled for tricuspid valve replacement on October 1. My tricuspid valve is damaged from a badly-placed pacemaker lead. The pacemaker was inserted after my second AVR in 2005, which was necessary due to the tissue valve I had put in in 2000 only lasting me 5 years. So it was a tissue valve that got me into this mess, and it will be a tissue valve that gets me out of it.

My tricuspid leaflets are too damaged for a repair to be viable, and despite already being on warfarin for my mechanical aortic valve, my surgeon has advised that the risk of clots is too high for a mechanical tricuspid valve. So despite my age (46yo) a bioprosthetic is the best option. Not much point having a valve that will last until I'm 80 if I have a stroke before 50.

As much as I want it done and want the wait to be over so I can get on with my life, I am terrified of going through OHS again. I pretty much broke down reading the info brochure for valve patients that the hospital sent me. Knowing what is coming makes it harder.

So now its time to prepare. Get my hair cut, buy some pyjamas, make sure my family are capable of feeding themselves and my horses while I'm incapacitated. My kids were 2yo and 14 weeks when I had my last surgery. This time they are 19 and 21yo.

Hi

Elcarim said:

but things are finally happening.

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glad to hear it ...

my surgeon has advised that the risk of clots is too high for a mechanical tricuspid valve

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seems strange ...








I'd seek another opinion. Don't get bullied because you feel vulnerable.

I hope it all goes well

pellicle said:

Hi

glad to hear it ...



seems strange ...

View attachment 890548

Therefore, we believe that mechanical valve for tricuspid position is a reasonable choice in selected patients who have left side mechanical prosthesis and are younger than 70 years old without significant coronary disease, New York Heart Association class IV, left ventricular ejection fraction less than 40%, and preoperative CVP greater than 20 mmHg.​

I'd seek another opinion. Don't get bullied because you feel vulnerable.

I hope it all goes well

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Yeah... it's like history repeating. The interventional cardiologist who is a tricuspid valve specialist and the surgeon are both of the opinion that a tissue valve is the better option. I made that decision before and regretted it for 25 years. The surgeon said she has never actually put in a mechanical tricuspid valve. I am going to do some reading and ask some more questions.

Elcarim said:

I am going to do some reading and ask some more questions.

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I'd start with that journal article where they put a mechanical tricuspid into patients who have mechanical aortic

Don't ask questions, get another opinion.

pellicle said:

Don't ask questions, get another opinion.

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I strongly second Pellicle's suggestion.

Based on my experience and what I've read, either Mayo Clinic or Cleveland Clinic can provide a 2nd opinion using copies of your existing test results. You don't have to travel; you can just talk with them remotely. This is your LIFE, so you should be in control.

Consider the following possibility: A reputable heart center such as Mayo or Cleveland says a mechanical tricuspid valve is a viable option for you. If this were the case, then what would your decision be?

Note: I only ignore hospitals in Australia because I don't know anything about the medical system in Australia.

partly for the OP:

3mm said:

Note: I only ignore hospitals in Australia because I don't know anything about the medical system in Australia.

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I understood that you were citing only what you knew (rather than viewing it as ignoring our system saw it as addressing what you have knowledge of).

Your presumptions are pretty transferrable and good institutions here will do the same as you've outlined. We have the additional encumbrance however that our medical system is State based (we have 6.5 States (counting NT for what its worth)). This is important because even the private hospitals are actually attached to a State Hospital. Which means that (leaving paying cash and fighting it out later aside) it will be more difficult to go out of State.

Difficult does not really mean not possible. For instance so much bullshlt surrounds this because of the dim witted twits who man the front desk. My most recent example was "oh, well you can't see the cardiologist without a referral" ... so I said "well I'll have to cancel the appointment". The reply was then "Oh, but you can still see them if you're willing to be out of pocket for the medicare reabte" ... (me in my mind >I'm driving 6 hours, paying $100 in fuel and parking to get to see this guy; why would I care about $40 of rebate<)

So I said, sure, I'll just pay ... "oh, ok that's fine then"

The other States criticize Queensland as having a (in theory) inferior Education system, however in the formation of our State we decided to place Health as the #1 priority for our (then still nacent) colony. Stuff like this history is why Queensland (in particular Chermside Hospital in Brisbane) was the national leader in Cardiothoracic surgery (pioneering for instance the work in Homografts). One of our Prime Ministers (who admittedly resided in Queensland) chose a sister hospital to Chermside (St Andrews) to have his OHS (when he could reasonably have had any hospital in Sydney (NSW) or Melbourne (Victoria) do this surgery because he was the head of the nation and spent his time in Canberra (ACT) midway between those two places.

This study was done at Chermside by the surgeons who did my first two surgeries (at about 10 and 28yo) and founded the team who did my third at 48.

Its common here for "Southerners" to lambast Queensland (usually for the wrong reasons, while neglecting where we do fail).

I hope that @Elcarim can set aside the (what must be difficult) emotions she is feeling now and focus on the key point: get the best surgery you can to give you the best shot at the rest of your life.

Best Wishes

pellicle said:

The other States criticize Queensland as having a (in theory) inferior Education system, however in the formation of our State we decided to place Health as the #1 priority for our (then still nacent) colony.

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I've been enjoying watching the TV series "Harrow," which stars Ioan Gruffudd as a British pathologist working in Brisbane at the (I presume fictional) Queensland Institute of Forensic Medicine. The scenery is lovely and the accents are charming to my American ear.

Zoltania said:

I've been enjoying watching the TV series "Harrow"

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thanks for the heads up ... It flew under my radar because generally speaking I can't stand the ABC

https://en.wikipedia.org/wiki/Harrow_(TV_series)

however I've got iView (groans at the naming of that) so I'll give it a look. I usually like stuff like that (thinks House and McCallum).

If you're in the mood for something pithy, but bleak I'd suggest "The Rover"

https://en.wikipedia.org/wiki/The_Rover_(2014_film)

Great story and two really good actors

Best Wishes

I've typed and deleted responses here about five times. I'd love to be able to set aside my emotions.

Elcarim said:

I've typed and deleted responses here about five times. I'd love to be able to set aside my emotions.

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Pour it out, wont harm anyone (and your anonymity is largely protected)

Elcarim said:

I'd love to be able to set aside my emotions.

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I know that setting aside your emotions can be difficult. Please consider finding a friend, family member who can act as your advisor through this process. This should be someone who can set aside their emotions, attend Dr appointments with you, and logically evaluate the information shared in the appointments. I had a sister fill this role, and she was very helpful.

@Elcarim
I wanted to leverage this post;

3mm said:

I know that setting aside your emotions can be difficult. Please consider finding a friend, family member who can act as your advisor through this process. This ..

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... could be a professional psychologist.

I've been through some very difficult things and I am very lucky to have good friends who are smarter and wiser than me to listen and ask questions. By this process (talking and answering) I found my way out of my labyrinth.



Don't discount a good psychologist.

Elcarim said:

I haven't been on here for a few months because frankly I wasn't coping with my cardiologist repeatedly telling me he was going to refer me for surgery and then repeatedly not referring me, but things are finally happening.

After seven months, follow ups from my GP, repeated phone calls from myself, and eventually deciding to find another doctor, I finally got referred. To an interventional cardiologist who specialises in transcatheter procedures. Who did some tests then referred me to a surgeon.

I am scheduled for tricuspid valve replacement on October 1. My tricuspid valve is damaged from a badly-placed pacemaker lead. The pacemaker was inserted after my second AVR in 2005, which was necessary due to the tissue valve I had put in in 2000 only lasting me 5 years. So it was a tissue valve that got me into this mess, and it will be a tissue valve that gets me out of it.

My tricuspid leaflets are too damaged for a repair to be viable, and despite already being on warfarin for my mechanical aortic valve, my surgeon has advised that the risk of clots is too high for a mechanical tricuspid valve. So despite my age (46yo) a bioprosthetic is the best option. Not much point having a valve that will last until I'm 80 if I have a stroke before 50.

As much as I want it done and want the wait to be over so I can get on with my life, I am terrified of going through OHS again. I pretty much broke down reading the info brochure for valve patients that the hospital sent me. Knowing what is coming makes it harder.

So now its time to prepare. Get my hair cut, buy some pyjamas, make sure my family are capable of feeding themselves and my horses while I'm incapacitated. My kids were 2yo and 14 weeks when I had my last surgery. This time they are 19 and 21yo.

Click to expand...

Hang in there. You will get through this. You have been through this before and you will get through it again! I, too am having a second open heart surgery next month to replace my aortic bioprosthetic and native pulmonary valve. The pulmonary valve will also be a homograft. Like your tricuspid valve, a mechanical is not recommended for the pulmonary valve due to high a risk of clots and strokes. The surgeon explained to me why this is the case. My very best wishes and I find getting things down on paper and taking "action" such as haircuts, shopping for PJ's helps. Prayers and best wishes.

Elcarim said:

I've typed and deleted responses here about five times. I'd love to be able to set aside my emotions.

Click to expand...

I send you my best wishes and I believe you will survive this operation in good health.

Elcarim said:

I've typed and deleted responses here about five times. I'd love to be able to set aside my emotions.

Click to expand...

I've felt the emotional turmoil in my run-up to imminent surgery -- I was actually about to start therapy anyway, but I postponed because I don't want to start and then immediately have my care disrupted by heart surgery. But I DO want to "set aside" or really to just improve my emotions.

I have actually found an app called Finch to be surprisingly helpful (good free version plus a paid one if want extra content). It has a nice library of very quick, mental health first aid activities built into it -- think breathing exercises, short journal prompts, Name your emotion, Rant Zone, 3-3-3 anxiety technique, take a walk, three deep breaths, 5 to 1 Technique, gentle yoga and exercises, soundscapes, What Would You say to a loved one and a lot of other classics. You can add custom self-care tasks as well so I put the pre-surgery breathing, coughing, progressive relaxation exercises, and positive surgery affirmations they want me to do daily on there as well.

In addition to being a really friendly and accessible interface, you get points for completing the activities that you can use to buff up a cute little bird buddy and send him on adventures. It's surprisingly motivating.

Overall I am more aware of when emotions are headed south and much more likely to Do Something to manage them. Over the past 30 days my emotions have become steadily more positive.

Just thought I would put it out there as it might help you or someone else.

dornole said:

app called Finch to be surprisingly helpful

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Finch looks cute, but it doesn't compare with a real bird.... This is Squeaky, who is very sweet.

Thanks all. I've done the therapy thing on five separate occasions over the years. The last time it took me 8 months of referrals and mental health plans to actually get an appointment. There is a huge shortage of therapists where I am, most clinics have at least a three month wait if they are taking new patients at all.

I'm pretty sure my freak-out the other day was related to the medications they gave me for my tests in hospital on Monday. It seems the new drugs are a lot stronger than the ones I was given back in the day. Tuesday night I was inconsolable and told my partner I didn't want to go through with surgery. I woke up Wednesday thinking 'wow, what the hell was that all about?!'. I have several tools for managing anxiety and settling my nervous system. This is not my first rodeo.

My surgeon is one of the most senior in my state and is director of cardiac surgery at the biggest hospital in Melbourne. The cardiologist who referred me to her has done loads of research on tricuspid valve solutions, certainly more than anyone else in the southern hemisphere. They work together often. This surgery will set me up for minimally invasive tricuspid valve replacement down the track if/when I need it.

I am at peace with it all now. I have waited a long time for this. I know it's going to be a long road, but the last 8 months have been a real struggle anyway. Now I'll be able to make plans again and look forward to getting on with my life.

Elcarim said:

There is a huge shortage of therapists where I am, most clinics have at least a three month wait if they are taking new patients at all.

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Now I'll be able to make plans again and look forward to getting on with my life.

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That's the spirit

Best wishes

Elcarim said:

I have several tools for managing anxiety and settling my nervous system. This is not my first rodeo

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Yay!! Glad the acute issues passed and you are in a good place. You got this!

I know you're at peace with the decision and probably don't want any more delays for a second opinion, but at 46, tissue vs mechanical is really important. Did you choose the tissue for your first surgery or was it recommended by the surgeon? I really can't believe anyone would recommend tissue for someone in their 20s, knowing they will have at least 3 more surgeries if they have a normal lifespan and the risk of death is higher for each one, partly due to scar tissue. Also, were you at peace with the physician who screwed up your pacemaker? Remember that old and experienced doesn't necessarily mean better. Sometimes it means stuck in a rut and unwilling to change. Mechanical replacement of the tricuspid has been done many times for several years and if it was such a bad option, why would other surgeons be doing it? I was 36 when I had my first and only OHS so far, had recently read the story of a really funny guy, Lewis Grizzard, and avoiding multiple repeats was my priority so a mechanical was the only option in my opinion.

From an August, 2024 article in American Journal of Cardiology according to a meta-analysis by Michel Pompeu, MD MSU MHBA PhD:

In conclusion, our results suggest that TVR with mechanical valves, whenever considered clinically reasonable and accepted by patients as an option, can offer a better long-term survival and lower risk of reoperation in the long run.