Being carefree again

[Agian]

I miss the days before I was told I will need my chest cracked open. I am now in the waiting room and resigned to the pre-op worry. People say the anxiety gets better post-op.

My question is: After AVR do people become carefree again, without being haunted by this heart thing? Do people 'forget' (I don't mean this literally) they have heart problems and get on with life, like before the bad news? Of course, I understand this doesn't apply to everyone. Some of you have known from childhood.

 

[Paleowoman]

Hi Aglan,

I would guess it depends on the person. I was pretty carefree before AVR even though I knew it was on the cards for years as I found out more and more about it and felt really well too. I began to feel the cardio had made a mistake and I would be one of those people who could have BAV and not need a replacement. I only got really anxious when I had to see a surgeon a few months before surgery. Then a couple of weeks before the op I felt almost relaxed again and I thought that after AVR I would be really relaxed knowing that a re-do would be many years down the line. But I actually don't feel that now - I'm now anxious I will get endocarditis or the valve will fail sooner than I had thought it would. I personally am thinking more and more anxiously…..maybe it's too soon to relax….maybe as time passes after AVR we get more confident and relaxed ?

 

[maisiejane]

Hi Aglan,
I can only echo what Anne has just stated, when the shock has given way to acceptance I quite welcomed the AVR with a mixture of anticipation and excitement, I am now 5 weeks post surgery and I am recovering appropriately but like Anne I do have worries of possible infection and re do's, maybe this is quite normal! On a level I do miss my pre surgery body, I knew it well and understood every little ache and pain, but hopefully me and my post surgery body will become more acquainted and the worries of each new twinge will fade away.
Hopefully you will get replies from the longer term valvers and they will be able to placate your concerns
Good luck.
Deb xxx

 

[Agian]

Thanks ladies. You both know where I'm coming from. There are lots of other things to make me anxious, of late. They tend to be a distraction. Whenever there's nothing else going on, I feel like I should be fretting over my heart problem. Not thinking about it seems odd. I hope that one day I can put it all behind me and treat this like some distant memory. Do you think that's possible?

 

[maisiejane]

That's exactly what I am hoping for ☺
Deb x

 

[pellicle]

Hey mate

My question is: After AVR do people become carefree again, .

yep, for sure. I was quite carefree after my 2nd op ... and by 10 years after I barely thought about it. When I did think about it it was mostly to think that "perhaps I'm fitter now than I've ever been".

Not a bad thing for a 30 year old to say.

Again I find myself pushing my limits out on the frozen lakes (thawing now dratt it) and being happy that I can get better times on a 15km ski than I could ever have done.

not a bad thing for a 50 year old to say...

PS: they say you don't know what you have till you loose it. Well you get a double bonus because you get it back again too

 

[mcsf]

For sure. After your chest heals from the surgery you can start getting back to all the things you love to do. You will probably feel better. I had my first AVR at age 22 and was even more carefree after my surgery because it was finally "fixed".

 

[Mentu]

Care free, maybe not; Joyful, certainly!

Care free, maybe not; Joyful, certainly!

I can't tell you that you will ever be "care free" again. To me, care free suggests that one doesn't recognize the risks that we live with every day. It is certainly true that people are terrible at evaluating risks. Most of the time we just choose to ignore the fact that we are engaging in risky behavior and yet we live with risk just as all our ancestors did. Most of them were spared some of the most risky behaviors such as driving cars but they had their own share. After surgery, I think it is likely you may be more aware of risks to your health but also better able to appreciate how relevant they are to your life. I know when I leave for work each morning, that I am in greater danger of being in a car accident than I am for developing endocarditis that might damage my heart valve and that the arthritis in my hands is more likely to be a problem as I age than the need for another heart valve. We all live with risks; the trick is to recognize how likely they are. For many of us, this leads us to take more conscious care of our bodies and to truly appreciate our relationships.

What I hope does happen for you, is that you will come to appreciate the little joys that life offers. I can tell you that at four and a half years, I do not see my scar. Its there, of course, but unless I consciously look for it I do not see it in the mirror. The anxieties that accumulate while one is waiting are normal (and I have certainly had my share) but as one recovers, life happens. Just as we recover physically, we begin to recover mentally. All the little events of the day begin to push the memories of illness and surgery from the forefront of the mind and we heal. My day begins when I move to get out of bed and my dog rushes to greet me in an ecstacy of wiggling. I tend to drive more thoughtfully. I share dinner with friends more often than in the past and I never pass up the chance to stand among my trees and breeth in the wine of the apricot blossoms each spring or taste the honey my bees make from them.

I guess what I'm trying to say is that you may never again be care free but in exchange you are likely to appreciate your new life more than you did the old and every day feel the joy of it more deeply. Its not a bad trade.

Larry

 

[mbeard]

Mentu, Larry,

Your entry was a wonderful description of what can come after the AVR surgery and it's trauma. I will keep rereading
this. It is very easy to let anxiousness get the best of us...at least me.

 

[maisiejane]

Oh Larry,
such lovely words filling me full of hope, thank you
Deb xx

 

[AZ Don]

My question is: After AVR do people become carefree again, without being haunted by this heart thing? Do people 'forget' (I don't mean this literally) they have heart problems and get on with life, like before the bad news? Of course, I understand this doesn't apply to everyone. Some of you have known from childhood.

Well I had two aneurysms repaired and my BAV was spared, so I am living with an estimated 50% risk of needing another OHS to replace my valve some day as well as some risk of another aneurysm. I only knew about my issues for a couple months prior to surgery, so I was lucky that I did not have to live with the pre-op worry long. Frankly I find life post op even better than before.

What I hope does happen for you, is that you will come to appreciate the little joys that life offers.

This is exactly what happened to me. After having surgery for cancer and OHS in the same year (and getting a clean bill of health after both) at first I wasn't quite sure what effect, if any, such life threatening experiences would have on me. Now I am. Everyone has some balance in their life between living for the moment and preparing for the future. Realizing my future could be shorter than I thought, my balance has shifted a little towards living for the moment, doing more of the things I enjoy and less of those that I don't, spending more time with family and friends, etc. Life is good.

 

[Paleowoman]

I guess what I'm trying to say is that you may never again be care free but in exchange you are likely to appreciate your new life more than you did the old and every day feel the joy of it more deeply. Its not a bad trade.

Love what you wrote Larry - I shall keep your message to read when I feel low.

 

[Phil]

I miss the days before I was told I will need my chest cracked open. I am now in the waiting room and resigned to the pre-op worry. People say the anxiety gets better post-op.

My question is: After AVR do people become carefree again, without being haunted by this heart thing? Do people 'forget' (I don't mean this literally) they have heart problems and get on with life, like before the bad news? Of course, I understand this doesn't apply to everyone. Some of you have known from childhood.

Hi Agian,

I now hardly give it another thought and it's not even a year after my last valve replacement. Truly, there are so many other things to think about.

I live in Melbourne - let me know if you'd like to chat and I'd be happy to give you my number, or vice versa.

Phil.

 

[ski girl]

Agian-

I've always known surgery was on the cards for me and now that I've crossed that bridge I am ABSOLUTELY carefree. I can now do WHATEVER I WANT physically and not worry. I'm not really sure how long it took me to no longer have any concerns about my heart, maybe about the time I got out of ICU??

But seriously, at some point I stopped defining myself as a person with a heart problem and I now define myself as a 'normal' person. It's an awesome feeling! I have no idea if you'll get there, I hope for everyone on this forum that they all get to this point as there is no reason we all shouldn't! These amazing surgeons and medical teams FIX us after all.

 

[Forrest]

I had a few bouts of being less than carefree pre-surgery and afterwards. But most of the time I tried to take the approach that so many others are going through so much more than me, or have lost loved ones tragically or at such a young age. So maybe I can navigate my heart issues and new awareness of risks that were really always there. Yet there really is no shame in uniquely feeling what you are going through, because it is big. I like the post about the stages of acceptance.

I was approaching 50, living very carefree while being a bit of a risk taker in sports and outdoor activities when I was given the sudden news that I had a congenital bicuspid aortic valve that was only opening .5 cm2 (after surgery I was told I was actually “unicuspid”). Two months after first learning of my heart problem I had to have a tooth extracted and subsequently contracted Endocarditis (bad luck). So to me this was not the ideal way to head into surgery shortly after recovering from an infection in my heart. I’ve always felt that my occasional worry of repeat Endocarditis during my first year post-op was actually more disruptive than the actual open heart surgery itself. I imagine the degree of “carefree-ness” is a personal thing, but for me each passing month helped me to regain some of my old easiness. As far as Endocarditis goes, I know the relatively small risk (but serious danger) comes with the territory, maybe a tad more for me since I contracted it once before, but the act of surviving has taught me not to worry. I now feel that it’s unlikely I’ll contract it again, yes my fingers are crossed . Plus, I am fairly diligent in my health and knowledge of my condition, so I take prudent precautions where I have control (i.e., stay healthy, take my premeds before dental visits, know the symptoms), and beyond that it seems there’s a bit of randomness to things like Endocarditis.

I do miss being as rough and tumble as I use to be, but I’m not really missing life because of unfounded worries, I still do sports, slide down river banks and wade fish big rivers. I even have more endurance post-op, blood really helps. And where I’ve slowed a bit is probably more due to being wiser in where I take my risks. Living life with an even deeper appreciation -- go on living!

 

[Agian]

I'm glad I asked the question. Ignorance is bliss sometimes. Thanks for all your responses.

 

[epstns]

Again,
As usual, Larry (Mentu) has said it so well. Usually I tend to respond in a similarly philosophical vein - but today I will deviate from my usual path.

Think of it this way - you may as well just live your life at the moment, since with our heart conditions there really isn't anything you can do to "make it go away" until surgery. You generally cannot make it any worse (as long as you don't do anything really stupid) if you obey the advice of your docs. After surgery it is much the same. For the entire time (almost 10 years) I was in The Waiting Room, I was aware of my condition and thought that I should be conducting my life differently to ensure that I had the best chance to come out of surgery as well as I could. After going through the surgery, I realize that my extreme diligence really didn't matter; as long as I lived a relatively healthy and heart-safe lifestyle I would have done as well as I could have. Even if I had been a marathon runner, I doubt that I could have avoided the complications I had during and after surgery. Things just happen.

All that said, with respect to my valve, I am pretty much carefree now - 3 years out. I do keep in mind that I must keep up my annual echo's to monitor my tissue valve (just in case), but I don't worry about it and won't worry about it until my doc tells me something that makes me worry. In daily life, I push pretty hard for an "older guy." I do keep a mental calendar for my pacemaker, as it currently has about 3 more years of battery life before I need to replace it. I don't worry about the replacement, however, as that is just a walk-through sort of thing where one can get the early morning appointment and be home in time to have lunch with the wife.

We all know that we are different than we used to be, but the "post-traumatic stress" of the whole ordeal dims with time. The more we can focus on living a full and rewarding life, the less we worry about the "what-if" questions.

Agian, you are right to ask the question, but I believe you would be wrong to expend the emotional energy to worry about it all your life after surgery.

 

[Superbob]

Can a life ever be completely "carefree"?

Over the past month, I have had to take my wife to the hospital three times for a serious condition (not heart-related) and my daughter-in-law endured the final month of a very difficult pregnancy -- happily delivering a healthy boy. But now she is dealing with complications and had to go back to the hospital yesterday (back home again today).

Those are real cares.

Sure, I think about my mended heart -- in fact I belong to an organization of that name and we visit heart patients pre-op and post-op to offer them encouragement -- but I do not obsess about it. I long ago came to terms with my mortality, and I live my life day to day, enjoy my blessings, and deal with my "cares."

My heart is just about least among my cares -- or at least way down on any list. I just had a routine echo (had not had one in more than 2 years and cardio thought it would be a good idea) but among the family doctors' appointments these days, this is the one I think least about.

I am offering a personal perspective in order to make the point that there is life after heart surgery. Life brings a multitude of cares but normally we can think about matters other than heart health. And above all we can enjoy the blessings.

 

[pellicle]

Hi Again Again

I see that many have written what I was thinking *(but was too shy to say) so I just thought I'd add something of an anecdote as a metaphor.

When my mates and I were in our late teens, we did a multi day hike through the Border Ranges National park and out to the northern end of the Lamington National park (on the Qld / NSW border). We prepared well for the trip (having done many many 2 day treks) but were unprepared for what we found (google the stinson wreck) if that makes sence. We were badly leech bitten, dehydrated (in a rainforest) had some injuries (it drizzled 3 days so slips happened) and we were really exhausted. Everyone bitched and moaned about it.

By 10 years later we were talking about it as if we had a great time.

Well, despite the discomfort we had the "time of our lives". Hell we didn't even see any Death Adders.

They say there is no learning without pain. So while it helps you naught now, know that you will emerge stronger and better for all of this.

Anyway, who wants to be "normal".

 

[tom in MO]

"After AVR do people become carefree again, without being haunted by this heart thing? Do people 'forget' (I don't mean this literally) they have heart problems and get on with life, like before the bad news?"

Yes they do get on with a full and happy life. For you personally, it depends upon your attitude towards life. I was never haunted by my "heart thing" although I lived with it for 20 years. I was carefree before with my BAV, but I am german/irish catholic stock and thus good at denial and faith It was not until I was told surgery was needed did I begin to stress.

If you get a mechanical valve, you will be taking warfarin every day and testing every 2-4 weeks. This is my life. My doctor said although there is a slim risk of endocarditis and of a warfarin related bleed, the odds are pretty much for sure I will die of something other than my aortic valve disease. It's a fine life, but then extreme sports scare me and I belive they are for the insane My INR moves around and I occasionally cut myself shaving, but no complaints. I don't forget to take my meds, but I sometimes forget to test, but my coumadin clinic reminds me. So, for me, forgetting to test is "literally" a sign of being care-free.

My biggest complaint is the cost of home testing, but then I have insurance, a good job and a FSA. I am cheap.

From my persepctive, the closest to carefree is an old person (>70) with a tissue valve...my m-i-l. However, since she has other problems, she was on warfarin before her valve job. Her biggest risk is endocarditis. I believe you will still need to premedicate before dental work and some procedures.

I don't know anyone with a tissue valve who is young. From what i've read, if you get a tissue valve and are young, you are re-setting the clock and will go through the whole thing over again. How you deal with this will be up to you but it will be "old hat". How do you deal with it now?

No matter what valve you get nor how successful the operation, you will always be classified as suffering from aortic valve disease. The good news is that it's not that bad and most people handle it with panache.