Surgery 2/6/17 - Insights, experiences, words of wisdom appreciated...

[LTRING]

Hello to all. I have never been a participant on an internet forum before...but after finding and reading this forum, I decided it was time to take the plunge!
A little about me:
58 years old professional. Active. Traveler. Adventurer.
And the recipient of the gift that keeps on giving...a bicuspid aortic valve. It was first discovered in my mid 40's when my heart murmur detected for the first time. Watch and wait for the last 12 years. Now, calcification of the valve (I'm at .8 cm2 surface area) and aneurysms (4.5-4.7) at both the root and the ascending aorta require corrective surgery. The surgeon will throw in bypasses if necessary (just had angiogram...results pending).
I am going to have the Bentall procedure...replacing the valve and the affected aorta.
I have never had surgery before, and since my mom died of 'elective' surgery to correct an abdonminal aneurysm, this whole ordeal has me scared.
But I know it needs to be done...so life goes on.

I have found myself struggling with the tissue vs. mechanical dilemma. I am 90+% resolved to go tissue. I suppose I am banking on the future...that when my bovine valve needs replacing, they can do so with a much less invasive procedure other than OHS.

Anyway, that's the situation in a nutshell. It is quite heartening to hear from those of you that have gone through this 'adventure' (as a friend of mine calls it....)....

Happy to hear your thoughts...experiences...insights. Pre and post surgery...

Thanks to all!

________________

2/6/17 - Bentall procedure. UC Davis Medical Center, Sacramento, CA. Dr. Nilas Young, surgeon.

 

[Paleowoman]

Hi Ltring - welcome to the forum ! I had AVR to replace my bicuspid aortic valve three years ago when I was 60. Murmur of the BAV first heard when I was 25 but not followed much until I was 53. I didn't have aneurysm. My choice of valve was tissue becasue I didn't want the ticking noise (I have very acute hearing and thin chest wall with slightly depressed sternum so that would have been an issue) and I didn't want to take warfarin. I went having a tissue valve knowing full well I'd need a second OHS at some point in the future. I'm pretty sure that unless things change radically I wouldn't be able to have a less invasive procedure, ie TAVR, because my valve is too small for that.

Pre-surgery I tried to keep myself as fit and well as possible. I was completely asymptomatic and carried on with long walks and weight lifting (quite heavy lifting too, though I lightened the weights on advice of cardiac surgeon). Even the day before surgery I did a six mile walk and lifted weights. Naturally I felt quite anxious once I knew I was going to have surgery but I read a lot about it and watched Youtube videos because I'm the kind of person who likes to know the details, that reassures me. As the time for surgery got closer I actually felt less anxious, did a lot of preparation for the stay in hospital and for when I would be at home afterwards, like organising where I'd sleep (sofa in the living room) and things I thought I'd need to make life easier. Also made sure my dh and son were supported as they were obviously stressed too. Coming home I took it easy but did gentle walks as much as I was able - the weather was bad as it was winter so walked around the living room, took naps, couldn't sleep nights, came on to this wonderful forum then. There were some post op problems, gut problems, and pain problems as I couldn't take any pain killers - the only day I didn't have pain was day one in ICU when I was probably on morphine which was apporpriate for me, none of the others I was put on after ICU worked and only gave side effects. I started cardiac re-hab at about eight weeks and that was great. It took longer to recover from surgery than I thought though, nearly a year to get back to how I felt before surgery I'd say. Everyone is different though !

 

[dick0236]

Welcome to the site. As scary as it first seems.......this type of surgery has become pretty much routine, just a little short of a million done each year in the US......although when it's your heart it is anything but routine.The waiting is a difficult time for any of us. This forum will give you a "heads up" on what to expect.......now, and in the future.

 

[jwinter]

Hi and welcome to a great group of people. Yes, most will tell you the waiting is the worst part of this. Be sure and ask questions here and with your surgeon. Experiences here are varied in some ways and the same in others.

I had my first AVR (mosaic porcine-tissue) 5 years ago this month. I was on life support when I had it so don''t remember some of the pre-surgery details. They figured that I may have had rheumatic fever as a child which led to my heart problem. (babies of the 1950's--antibiotics were just coming to be--parents rarely took us to doctor). I have no other problems with cholesterol, blood pressure, and other symptoms related to heart disease. I still don't.

I just had my second surgery this past November and now am the proud owner of an On-X mechanical valve. Like Paleowoman said, it ticks, but I find that reassuring. Got my INR theraputic the week of Christmas. This time I developed fluid around my heart about 4 weeks post surgery and had two surgeries to correct that.

I also want you to know I was originally offered up the TAVR. I could not have it as I have some liver issue but when I asked them they told me (now others may know otherwise) that it could only be done twice. I am 60 now and did not want a full open heart further down the road and as far as I know the verdict is still out on the success of this procedure. Do your homework if you decide on this.

The above leads me to this. My experience, even under the worst conditions, is that the open heart procedure itself was not that bad. Had a hysterectomy a 10 years ago and that hurt FAR WORSE.
I think most of our decisions about having heart surgery are made for us........nothing works without the heart.

Take care and best wishes whatever you decide.

 

[honeybunny]

Welcome to the forum. Glad you took the plunge. You'll find much support here.

I went with a tissue valve at age 61. Paleywoman's experience helped me make that decision. But I'm not counting on TAVR as an option down the road when the time comes for replacement. It would be nice if it happened, but it's not a given in my opinion. Not saying this to discourage you because I am totally comfortable with my decision. im not on anti-coagulant therapy and I don't have to contend with the (possible) ticking of a mechanical valve. Those were my concerns, especially the ticking. I don't like to hear heart beats and I always ask the tech to turn the volume down as low as possible when having an echo.

I also had a bypass during surgery: 70% blockage in one artery. That was decided when a heart cath was done shortly before surgery. No aneurysm was discovered during surgery.

I understand the aprehension due to your mother's death. Every one of us has been anxious. No exceptions. That's what helped me so much, knowing that everyone here had gone through the same surgery and had gone on to live a normal life. It will be the same for you. Keep us posted.

 

[pellicle]

Hi and welcome

...A little about me:
58 years old professional. Active. Traveler. Adventurer.

I think that your choice decisions seem sound, being able to go in and get the aneurysm fixed in the first surgery is a bonus IMO as aneurysm is often a driver for subsequent surgeries. Had I had a mechanical valve put in back in 1992 (on my second OHS) it would have been still the case I'd have needed my 3rd OHS in 2011 because an aneurysm on the aortic root had been found (and drove the operation).

I know that you've stated a > 90% confidence in a tissue valve but if your decision has been shaped by concerns with AC therapy and hopes for TAVI then perhaps its worth saying to you that I have had no problems (nor many of the other members here) with warfarin therapy. I manage myself and manage my INR / Dose relationships.

For instance, I've just tonight bought my next batch of strips from an online pharmacy in Germany, as I'm currently here in Finland. Buying from Germany saved me about 50 euro (and tests work out at about 6 euro each). I've moved back here a couple of months ago from Australia. Self testing not only liberates me from needing to attend a clinic for vein blood draws, but also to travel as I wish (and I'm expecting to do a bit more travel this year) but further puts me into a group where I achieve the highest compliance of time in the ideal INR theraputic range. My averages in range over the last 4 years have been in the over 90%'s which is above even the better clinics averages. Studies have shown that self managed patients (who are competent to self manage) actually do very well. So well that we're probably in the general age related risk for stroke / bleed events.

It is said that when you have valve surgery you exchange "valve disease" for "prosthetic valve disease" ... there are two types of prosthetic valve disease, one is managed surgically when the valve deteriorates and the other is managed by the patient who essentially becomes a well defined clotting / stroke risk patient. That is managed by INR management.

Of course (as I began) your choice of a tissue valve is not a bad choice by any means, and in some ways simplifies you life.

Don't worry about the surgery, as you'll read here so many times, its worse in your minds eye than it is to go through. Just like many of the hikes or ski trips I've done once you are a few months past you forget the twisted ankle injuries, the leeches, the falls ... and remember the good times and the fireplaces.

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Best Wishes and I wish you a smooth recovery

 

[Trinalovescats]

Welcome to the club.

i am 32,and had Mitral Valve Replacement and Tricuspid Repair on May 3,2016.I was misdiagnosed with Asthma the year before.
i chose Mechanical because I intend to live a long life.At first,the ticking was freaky now it's just comforting to hear.Sometimes when I'm stuck I. Traffic I can hear it ticking!
i am proud to be a part of this group as theyve helped me get through things that my relatives don't understand what I went through.i am
happy I found this forum.