"survivors" and "battle scars"

[MNmom]

I have read on this site quite often people refer to "survivors", "battle scars", being happy to be alive, enjoying everyday as a gift, etc. Im curious if those with so much respect and thankfulness had significant symptoms or near death situations, or just happy to have survived surgery?

I know this is a weird question, but I had never before really thought of myself as a survivor, or my incision as a battle scar, or even lucky to be alive due to my valve. BUT, I never experienced pre-op symtoms- my BAV was found at the age of 2 and monitored ever since. I always knew I would have surgery, and then after the tissue valve at 20 knew I would have surgery again. Without symptoms or near death experiences, I never considered myself lucky to have "made it" over the mountain, so to speak. This may sound awful- but do I just have a lack of respect and/or appreciation for what I have, or are there others out there like me who minimize (for lack of a better word) what they have been though?

Again, remember, I had no pre-symtoms- I was feeling great until getting run over by a truck with surgery- felt much better going in the hospital than coming out- maybe there is the difference. I have never felt proud or happy to show off my scar- though I will in hot weather with a bathing suit- And was intrigued by amount of people who wear their scar with pride as a symbol of what they have survived- I wish I felt that way!

I had an experience with a "healing touch" therapist who provided an energy -based healing session- at the end she made a suggestion- to accept and love my new valve and pacemaker- kinda weird- but it was included in my cardiac rehab package at a rather wholistic (sp?) hospital.

Do others who had OHS after no symptoms consider themselves lucky, and to be given a gift or a new lease on life? What in the world is wrong with me???
Please dont get the wrong idea, I am happy to be alive, and to have survived heart surgery twice, and to have two wonderful kids with my tissue valve, but have never really considered myself "lucky" given the whole BAV situation in the first place- I am thankful my problem can be fixed as opposed to terminal illnesses- but still- lucky to me is to be born without these issues. Ok, I have probably said too much already... I probably need to learn to look at my situation differently- maybe with time i will appreciate the "gift" I have been given...

 

[Jkm7]

I think of it in many ways but one of them is tremendous gratitude to the medical community and researchers/surgeons who create new procedures with which to help us.

My father died from heart issues in 1964. He did not have the opportunity for the surgeries and treatments I have received.

I have three birthdays now. One the day I was born, one for my first OHS and one for my second.

If my Dad would have had the opportunities I did, he might not have died so young and I might not have had to lose him when I was sooo young.

I also think that anyone who survives a heart lung machine has survived a near death experience. Our hearts are stopped and restarted at the finish of our surgeries. If that isn't near death what is? Yes......it is the rare case there is a problem getting our hearts beating again but having your heart stopped can not be dismissed casually. IMO

As to battle scar...... No, I don't think of it as a badge of any sort. I don't try to hide it as I'm not that vain. It isn't ugly to be upsetting to most people viewing a bit of it. It simply is the same as the scars on my addomen from two previous unrelated surgeries. Scars on my belly and the scar (twice) on my chest are remnants of medical care I received that either saved or improved my life.

MNmom.... It sounds to me like you are putting yourself on some sort of 'guilt trip' for not feeling more overwhelmed with your survival. If I am wrong, please excuse me. I don't think anyone should 'expect' to think in terms of how they are 'supposed' to feel. There is no right or wrong IMO. Intelligent and appreciative heart surgery survivors who thrive and do well, most usually will be grateful for the success of their surgery, the good care they received, the giving people who spend their lives helping others like us. But, IMO, all of us have private feelings as to the preciousness of our lives and the gift of additional days medicine provided us.


Shortly after my first surgery, a friend had a heart attack and was very depressed. We were speaking and I said how lucky we were. He blew up at me and said, LUCKY.... I just had (*&% HEART ATTACK....how can you say I'm lucky. Easy. You are walking, talking and know what day of the week it is. You survived it. How lucky is that!! He was silent and said, You just had your chest slit open and your heart operated on. You call that Lucky!! Yes. I am lucky. I survived it and can go on with a full life. He snapped out of his depression shortly after. I gave him a different way of thinking about it. Lucky to have required OHS..... of course, Not. Lucky would be to have never needed it but even more lucky IMO is to have needed and been able to have it, to recover and have more time with your family or whatever/whoever it is you care about.

The best tribute we can give to all we think deserve our thanks is to live our lives well and (hopefullY) give at least a little something to someone else who needs a helping hand along the way. Could be something as little as picking up something someone else has dropped. Holding an elevator door......... or something much larger as someone here has shared, their husband went to Nursing School as a direct result of what he observed helping his wife through surgery. Her OHS provided the impetous for her husband to help so many others through his nursing.

Oh my goodness...... So sorry. I never intended to babble on so much. And most of it not even exactly about what you were speaking. Sorry. End of speech.

 

[MNmom]

I agree with you. For some reason, I feel for everyone else's experiences, but make mine into more of a casual one. I dont know why- but I never used to even think about it except for once a year at my physical and echo- even after my tissue valve surgery - I was on and off by-pass 3xs! I went in for a repair and came out with a tissue valve 8 hours later. My family was thrilled that I make it through all that (barely- as im told) but since I was asleep the whole time- I didnt know the difference. I actually just read the surgery summary of my first surgery about 2 months ago- before my second surgery.

 

[Ross]

Both of mine were near death with the first being quite symptomatic. I was very happy to have survived #1, but #2 kicked my butt so hard that all I could say when I did come around 5 weeks later was, I'm not going to make it. I felt so bad that for a while there, I wish I hadn't made it.

 

[Bina]

MnMom, be glad (and eventually grateful) that you did not have to endure lots of symptoms before OHS.
I stalled the surgery until I was very debilitated and nearing death. It sounds really stupid, but at that time I actually feared death less than I feared the surgery.
My own Mom had passed away after a long battle with kidney failure, transplant, dialysis, etc.
I watched her suffer alot and remembered her saying that death would be peaceful. I understand where she was coming from, but all of a sudden I decided that I would fight to live.
My recovery was slow and crappy, I have another chance at living, and I've got this groovy scar to prove it.

 

[Nancy]

Joe knew from the time he was a teenager that he would have heart problems. He had a murmur. He had rheumatic fever and spent a year in the hospital on sulfa drungs, for some reason they did not give him penicillin (it was new, but available at that time). Of course, heart valve surgery was not available when he was young.

He accepted his heart problems and just went on with his life, even playing minor league baseball and football, and doing track and other sports until his aortic valve stenosed and started regurgitating at age 46.

I never heard him say he was overwhelmed with the wonder of it all, he just went through whatever procedure and surgery was necessary to keep him alive. He always said, "what choice do I have, it's do this or die."

He also was never afraid of anything they did to him, and rarely complained about any of it, no matter how gruesome.

So maybe the difference is that some have known for a long time that they would be facing something in the future, and with others, it comes as an unpleasant surprise.

He did ask from time to time, "why me?"

 

[DeWayne]

My first scar was always my battle scar. I was pretty young when I had it done. Spent my 5th birthday in the hospital for the operation. My parents told me that the doctors wanted to wait till I was 10 or so to do it, since operating on someone so small in 1959 was not real common. It was finally decided that they had better go ahead or I might not make it. So I guess it was pretty significant that the operation take place.
I remember very little about life before the operation, but I remember to this day the first thing I said to the nurse when I woke up afterwards. They had my chest wrapped to tight I could hardly take a breath. I told her I needed to cough, and I couldn't, she said what if I cough for you will that help?
I don't remember if it did or not!
About the only thing I remember about life before was a reoccuring dream, but that is another story for another day.

 

[catwoman]

MNmom:
You've raised a really good point.
I imagine it depends on your pre-op symptoms.
My husband had few symptoms, other than mild tiredness. He didn't have any CHF or other problems. His recovery was pretty quick.
I had a number of symptoms and was pushing the envelope, trying to finish several projects, wanting to wait until November (2003) for surgery because my niece was getting married in October, etc. Lots of reasons to wait.
I was told I didn't have much time. So I got into surgery (6/24/03).
Later, I realized how much I had pushed that envelope. That Christmas Eve was my 6-month anniversary of my MVR and it was very sobering to think my family could have been celebrating it with one less family member.

The first year or two post-op, I focused on the "what if's." I now focus on the future.

 

[aussigal]

Interesting topic...

I am definately one who had a really bad near-death experience and now has a greater appreciation of the simple things in life.

My body/heart didnt take well to being operated on and I had very major complications which almost took my life 3 times...I had a very weird dream 3 times during the time I was in a coma which I still remember and am trying to figure out what it meant.

When I recovered from all that had happened and I got back home I found I spent alot of time observing the world going by. I was happy just to sit back and watch.

Nowadays it takes an awful lot to get me upset or angry, infact it just doesnt happen to me anymore which is kinda weird. I dont even get PMS anymore LOL...I am much more at peace with my life.

For me life is fabulous....it doesnt really matter that we dont have lots of money or a beautiful house or new cars...what matters is that we are a family and all well and healthy and happy.

 

[Dina]

I'll say it a 3rd time....good thread.
My near death experience came before OHS when I had Endocarditis.
And its a miracle I'm still here(thank You!)
There is a word among the Cherokee...."Asgina Ageli" , which refers to
anyone who has been thru many dangerous battles and survived or has
been very ill and come back from the edge. It is said that these people
have one foot on earth and the other in the spirit world, I think it literally
means one-half ghost. I dont know if anyone would agree , but I have
always felt it applies----Dina
As I read this I realized I didnt get across the true meaning: That an Asgina Ageli
is almost magical because of their experience,and raises their awareness of this and
possible other worlds.......Ok getting too "out there"

 

[Guest]

lucky to me is to be born without these issues.

*grins devilishly*

Lucky to me means something else ... ENTIRELY.

*grumbles*

But, I understand what you mean. I have had heart issues all my life ... for the longest time I thought THAT was the "normal" thing...heh.

I do feel lucky to be alive and blessed, etc. ... but, sometimes, well, I can't put into words how I feel because those feelings are wrapped up into so many other aspects about my life that it's hard to explain....

*shrugs*



Cort:34swm."Mr Monte Carlo.Mr Road Trip".pig valve&pacemaker
WRMNshowcase.legos.HO.models.MCs.RTs.CHD = http://www.chevyasylum.com/cort
"I just can't anymore this life of solitude" ... Saliva ... 'Always'

 

[Elcarim]

This thread has brought me to tears.

MNmom, you are close to my age, I also had the tissue valve and then the mech valve and ended up with a pacemaker. I am also lucky to have my two healthy little boys.

At the moment I am going through a rough patch. Depression/anxiety runs in my family and I have been diagnosed with Post Traumatic Stress Disorder as a result of my surgeries. You are so fortunate to have come to terms with your condition and what was required to keep you healthy, and perhaps knowing from a young age that you would have this happen helped to prepare you for it. I was diagnosed at 19yo, had surgery at 22yo then my tissue valve wore out in only five years.

I know I am different after my surgeries. Psychologically I don't know if I am better, although physically I certainly am. I am glad to be here. I remember waking up after my second surgery with a feeling of elation that I had survived.

Most people don't seem to notice my scar, the only ones that mention it are people who have had surgery themselves for whatever reason. I don't go all out to hide it, but I do find that a necklace or pendant makes the scar less noticeable.

On one hand I wonder what the future has in store for me. I've become a bit of a hippy, I now think a lot about the world and how we should look after it and each other. I try to instill a bit of this in my kids and the rest of my family. I try to make the most of my opportunities and look after myself.

I have not come to terms with my artificial parts and I don't know if I ever will. I just hope that I can stay well for many years and see my kids grow up and maybe have some grandkids one day.

 

[Lynlw]

Nancy said
"I never heard him say he was overwhelmed with the wonder of it all, he just went through whatever procedure and surgery was necessary to keep him alive. He always said, "what choice do I have, it's do this or die."
He also was never afraid of anything they did to him, and rarely complained about any of it, no matter how gruesome.
So maybe the difference is that some have known for a long time that they would be facing something in the future, and with others, it comes as an unpleasant surprise."

Which also was kind of my thoughts, Justin, Like you never really knew life without knowing about his heart, actually all he has ever know was living with his scars since he got his one between his ribs, around his back at 10 days and his sternal incision at 18 months. To him, it is just part of who he is, like his blue eyes. Actually he was about 4 or 5 when he realized not everyone had zippers. So I would think there would be alot of different feelings for someone who lived most of their life growing up dealing with their heart, then someone that was perfectly healthy and are thrown into a brand new scarey world.
With saying all of that, everyone is different and no ones feelings or thought are right or wrong, they are just theirs. Lyn

 

[Fred4]

There is a beautiful young 30 something mother in the office where I work that sports such a scar. Depending on what she wears to work, it can be visible. She never talks about it much, but she has had a tissue valve replacement so I know what the scar means. Also, the scar in no way diminishes her attractiveness. Please ladies, never be self-conscious about the scar--other things, I suppose, but don't use it as an excuse. I assure you it's beautiful.

 

[WayneGM]

Good thread. I had no symptoms and felt better going into the hospital than coming out. I suppose I felt lucky they found the problem and were able to fix it, but I really didn't think much of the OHS pre-op. Since I had never been very sick or injured before, I think I felt indestructable and just took life for granted. I just figured I'd go in, they'd repair the valve, and I'd come out and my life would just return to normal. I started to feel a bit differently when I first realized how hard "recovery" was going to be after being hit by that freight train. However, my wake up call really came when I had my near death experience with pericardial tamponade as a post-op complication. That's when I realized the significance of my OHS experience and I learned to appreciate how fragile life really is. For me, that was my life altering moment and I've been a different person ever since.

 

[Karlynn]

While reading these posts it dawned on me that I don't really consider myself as much a survivor as I do a warrior. I had 5 years from hell prior to my MVR. I felt like I was losing the "war" during those years and I was pretty beat up emotionally as well as physically. Then I had my "D-day" - my surgery and the tides of the war changed. Because of the damage done to my heart prior to surgery, I'm still in "the war" in a sense because I need to be vigilant about my health. I just can't forget about it and go 3 years without a check-up. But now it seems like this "warrior" is now doing peace-keeping duty and it's something I'll need to keep doing until The General calls me back home.

 

[Dina]

While reading these posts it dawned on me that I don't really consider myself as much a survivor as I do a warrior. I had 5 years from hell prior to my MVR. I felt like I was losing the "war" during those years and I was pretty beat up emotionally as well as physically. Then I had my "D-day" - my surgery and the tides of the war changed. Because of the damage done to my heart prior to surgery, I'm still in "the war" in a sense because I need to be vigilant about my health. I just can't forget about it and go 3 years without a check-up. But now it seems like this "warrior" is now doing peace-keeping duty and it's something I'll need to keep doing until The General calls me back home.

Karlynn: this is exactly what I meant....I'm glad there is understanding
(I find it difficult to put my feelings into words)-Thank You!

 

[geebee]

"My father says that almost the whole world is asleep. Everybody you know. Everybody you see. Everybody you talk to. He says that only a few people are awake and they live in a state of constant total amazement." (Patricia in Joe Versus the Volcano)

I like to think those of us who have been through major traumas fall into the awake category. We just don't have time to miss anything.

 

[netmiff]

I'll say it again - good thread !

There is no way anyone should be feeling, I mean there is no normal, your feelings are yours, and mine are mine.

I am not a religious person in that I don't go to church or follow any organized spiritual path, but rather I have a kind-of caring and philanthropic outlook on life, and my own, private ways of finding peace within myself.

I was not symptomatic, had known since 1985 I had a murmur, knew for about 6 years or so before OHS that I would need it some day ... maybe. I didn't really think it would ever actually happen to me (I've never been seriously ill before, no-one in my family has since I was 17). 3 years ago when cardio said we need to start thinking about OHS, I was stunned! Even so, 2 years later, when he said the time is NOW, I was even more stunned.

When the time came, I was scared sh*%R%ss. Yes, I took life a bit more seriously just before and after surgery, taking time to smell roses etc., finding trivial things were well, trivial and so on .. You know, you're standing behind someone in the grocery store who is complaining about something, and you think gee, you think YOU"VE got it bad, I'm going in for OHS soon and may not make it . . . Well, I came through it with no bumps in the road at all.

Now, I am just too busy to think about it much, but occasionally I will be somewhere, and I will look around the hall, or the restaurant, or wherever, and think, "I wonder if anyone here has gone through anything like what I did, does anyone here click?"

Even now (10 months post-surgery) I am grateful, for the skill of the surgeons, the care of the staff, the ones that went before, the love of my family, and yes, for the scar - if it were not for that, I would not be here now (had an aortic aneurism, surgeon was not willing to leave it too long). I am aware of that, and have said so to my awesome DH recently.

I don't think of myself as "sick" or "diseased" or "defective"; I will go every year for my echo (which I did before) my annual physical, get my eyes checked (not often enough), keep my INR in range and keep my teeth looked after (well....I need to find a good dentist ...) - just one of the other things I have to do. I have been on meds for about 15 years now for another condition, and eventually came to erms with that, so maybe in some ways it was easier this time to adjust to taking meds.

Yeah, good thread - sorry for the long reply, but it really got me thinking.

 

[ricks399]

Big Event?

Big Event?

It seems you had your first valve replacement at 20 with few symptoms and your second about 10 years later. Did you notice any difference in your attitude toward the second? I know at 20 most people feel indestructible - death is for others, not for them. This lesson was amply demonstrated to me when I served as a medic with an infantry company in Vietnam. People were shocked when they were wounded because it wasn't suppose to happen to them. I could see the surprise registered in their faces, a look of how could this happen to me?

Then at some point as we age (for me maybe around 35 - 40) we realize our own mortality and the finiteness of life. Confronting our own death is not easy emotionally, although of course we know we are mortal in the rational part of our brain. And though the risks associated with OHS are minimal, **** happens as they say and there are risks which, at the limit, include death. So for someone like me, who has a reflective bent to start with, having a valve replaced takes some processing and seems to mark a divide that is more than just pre and post-op. I haven't figured out the meaning of it for me but I'm still pondering and maybe someday. Anyway sorry for my long-windedness; it's another disease I have!