Scars, not Disco

[seth]

I posted a self portrait on my profile page and on the members only forum: The Order Of The Tawdry Shirt (TOOTS). I took the picture on the 40th day after my surgery. The photo shows some of my scars and at that time I thought I'd recover and everything would be OK. Now at nearly 11 months post-surgery things have not worked out that way. My OHS was totally unexpected. I found out I had to have surgery only 3 days before I was in the hospital to have it done (a Bentall Procedure). Of course it was horrible to think someone was going to cut me open and stop my heart. But when it came time... I got through it well. After surgery and 12 days in the hospital I was sent home to recover. But I had this constant hard pounding-vibration inside me, I thought it would go away but it never did and I suffer from it constantly.

When I took the self portrait showing my scars I deleted the pictures showing my face and kept the one showing only my body. I could look at the picture and wonder, is this really me? Today my scars represent what's gone wrong as much as what's gone right. I don't consider them a badge of honor, or a sign of being "on the other side of the mountain" (as so many people call it). I made it to the other side but the surgery followed me with awful results constantly pounding inside me. It's something I deal with every day, with every heart beat, with no solution and no resolution.

I knew there were risks and uncertainty but probably like most people on this forum I thought I'll be brave and face this surgery, I'll get repaired, I'll recover, I'll get back in shape and move on with my life. It will be good. I'll have some warfarin to take, some memories to talk about and a scar to show for it, but that will be about it. I envy the people who have it turn out this way. I really do. Why couldn't I be one of them? It makes me angry sometimes and it's so difficult not to become bitter. Of course something had to go wrong for me, something they can't fix, something I'm permanently inflicted with. We always hope for the best but the truth is there are people for whom surgery does not provide the results that are expected or wanted. I'm one of those people. This is something to keep in mind when you are one of the lucky ones, don't assume everyone gets it as good as you. If looking at your scar is what it takes to remind you of your OHS, I'd say you are very very fortunate because every pounding beat of my heart reminds me of my OHS and how it came out wrong.

I understand that the Tawdry Shirt represents coming through the surgery and being part of a community, an "Order" of valvers who have been through this experience. I get it, it's nice. It's supposed to comfort people before their surgery and encourage them afterward. But believe it or not, there is also the real world where things don't turn out equally well for all people. Having gone through OHS doesn't mean you have gone through everyone else's OHS or that you live with their surgery results. What if "the other side of the mountain" isn't the happy story we like so much? I came through OHS with poor results... that's off message, that's a thorn against the bubble, that's a drag but sometimes truth doesn't fit the desired version of how things ought to be. No disco pose for me, I belong to the Order of Botched Medical Advancement. Reality is rude when your heart/health is screwed up, and things don't work out the way they are meant to, and doctors don't have the answers, an no amount of prayers has made it better. My quality of life is much worse now than it ever was before the surgery. The heart issues I have now are BECAUSE of surgery, not of any fault of my own, and with no way that I can fix it. All I can do is keep pushing for answers, making it through each day, and hope to God I can make a difference so other people don't have this happen to them.

 

[Eva]

Seth, I am so sorry to read the above and I feel and I wish I could do something more than praying. Please do stay strong and do not allow the scar to scar your spirits and life. You seem to be a kind nice person and remember these hardships turn the bad people to bitter, but the kind ones become kinder. Keep the hope and the kindness and it will be returned to you. There should be some higher explanation why unlucky you had to go through this...anyone would feel the same way. I hope you do not give up and keep pushing for answers...with all the medical advancements, there should be an explanation and a reason and a way to correct this. It is unfortunate that you lost insurance to help you seek other surgeon's opinion. Keep pushing the surgeon and St. Jude and do not give up...let all others give up but not you...keep on fighting and if there is anything I/we can do, let us know.

I shall say special prayers for you and rest assured you will see the light and find a hope somewhere.

(((Hugs)))

 

[Freddie]

Seth, your not alone.
I too only had 3 days (maybe 4 days depending how you look at it) before they cut me open and this OHS was also totally unexpected. I came very close (and I MEAN VERY CLOSE) on not signing those consent papers on surgery day, but after being told that I might have (maybe) 2 years if I didn't go through the surgery. The only thing I could think of being around for was to see our son graduate from University.

I also feel the same way of these "badges of Honor" but I have not posted any picture - no matter how often I've been asked by other members I simply won't do it.

There is a lot of frustration and denial and I still continue to deal with it.

I pray that in time, a new leave will be turned for you, even if its only for a few minutes that it will turn into hours and then turn into days of feeling happy and grateful that you are here.

Hang in there Seth - I know the feeling.

 

[Marguerite53]

Hi Seth.

Thank you for posting your story. And thank you for expressing your feelings. We are actually much more about sharing and support than we are about Tawdry shirts and scar photos. But you haven't been with us for very long. Keep us around for awhile. You'll see.

You are obviously a very gifted photographer. Your avatar is stunning. I bet you have worked very hard to perfect the light, the angle, the exposure. Wonderful. We have several photographers among us. I hope you will run into them on your visits here. (Dennis S, Geckley, Eric, StretchL)

Photography can be frustrating. You can miss a shot. You might not be able to get the moment back. So you move on and hope for a similar experience down the road, or look in marvel at some other photographer who has captured the shot. This is the stuff of life. We are not in control. I have no idea who or what is in control -- that is not what I am here to discuss.

I am very sorry that your surgery has not ammended correctly. I can't imagine the utter frustration you feel. Not everyone here has had it good -- you will find you are not alone; should that offer you any comfort.

As a suggestion, I would recommend that you try to begin to let go of the perfection you seek. Giving up can be good. Letting go can actually bring results -- as if the body can relax and go about its furtive search for balance, for normal -- without the stress of your brain and emotion pushing it beyond its capacity. A form of acceptance. And then patience.

Best wishes.

Marguerite

 

[gustaf]

Seth,

Since I have the same kind of pounding, I can relate to your situation, although I still see my surgery as an overall success (given that the alternative would be that I wouldn't be here).

You have mentioned hypnosis as a possible treatment/help, and I really think you should explore it. I might look into it myself as well. At my hospital, they performed a pacemaker replacement on a woman a couple of weeks ago with hypnosis as the only anesthetic, so it should be possible to direct towards the poudning as well?

Otherwise, it seems like it is a general issue world-wide that we are all mostly left to ourselves and our families and friends after surgery. This can of course in many cases be enough, especially if everything goes well. But somethimes, I wish there woulc be coaches, working in similar ways like personal trainers do.

In any case, I believe I am at a stage of acceptance Marguerite53 talked about. I wish you will be able to get to that point as well.

::gustaf

 

[Ross]

Seth I'm glad you posted, what you posted, the way you posted it!

For some of us, surgery turns into a nightmare. I've been chastised many times by folks for "scaring" people. If it's the truth, why be silent about it? If it scares somebody, well what can I say? Not everyone is going to have textbook perfect surgery. Some are going to have them with less then desirable outcomes and it's the way it is. No one goes through this surgery because they want to, it's because they have too or they aren't going to be here very much longer. While we have our issues after the fact, we are still on this side of the dirt and really, that's all that matters. I can't think of anyone saying I'd rather be dead.

Despite having suffered financial devastation, stroke, kidney troubles, neuropathy and ongoing things, I got to watch my sons grow up (Well sort of ) and my first grandson, about to have another and many life altering events for the better, along with some that aren't so good, but I'm here. If I weren't, I'd never been able to enjoy the little things that I do. It's worth it to me. Oh yes, I have my down days, but something always comes along to offset that particular event.

 

[ALCapshaw2]

I HEAR YOU Seth.

I hope that the research initiated by your surgeon with the gracious support from St. Jude will lead to a better understanding of the mechanics and dynamics of Heart Valve and Conduit combinations and lead to a better way of dealing with those complications.

As our member Nancy signs,
Never Give In and Never Give Up !

'AL Capshaw'

 

[Mary]

What would you have done differently if you knew the outcome in advance?

I also had complications as a result of my replacement, so I understand the anger, but when push comes to shove, I can't go back and change it. I can control my attitude towards it, so that's where I channel my energy.

I hope time's passage will help you.

 

[jorsarge]

Hi seth
thank you for your thought. Understand what you mean by the pounding. I am 2 years on still pounding am used to it now though but I can be very conscious in a quiet room with people around me in time I will get used to that too. Now I have a small ! op to have the wire taken out you are right it does not go away but it certainly gets better.

Regards

Jorsarge

 

[tex]

Hi Seth,
I have just read your thread, and you certainly seem to have a rough time, in one way i think you were lucky, not having to wait weeks for your surgery, i thinking waiting is one of the worst bits, but then on the other hand i could perpare for it, surpose theres fors and against on both sides. I too have a very noisey valve people can hear it ticking and thumping away and sometimes feels as though it going to pop out of my chest. But its a small price to pay for me still beening here. I too have had problems since my surgery my sterum hasnt fused tgether in part in fact i am back at hospital with it 2moz, it really does cause me terrible pain and its 6 months since my op, i thought by now i would of been dischargd fro the surgery, but no, but thats just like me nothing goes right, i cant even buy anything without something been wrong with it LOL. I know i am facing surgery again will get my date 2moz, but its a small price to pay for living. I was reading what Ross had wrote and hes right. I am sure that you must be really down with whats happening to you and then feeling down turns to anger and then its the why me question.
Last week i was moaning and carrying on with myself about my sterum, and then i thought of my friend Sue, we have become great friends through this forum and all what she is going through and i thought Jane for god sake pull yourself together.
I am not telling you to do that you have to keep pushing for answers and i hope you find some.
Take care,
Jane

 

[briansmom]

Hi Seth,
Also not trying to offer you shallow platitudes, but I recommend that you take Marguerite's advice and try to find forgiveness and zen. My son also should not be left with the heart damage he has. It was (in my opinion) pure negligence on the part of the original docs that we took him to. Brian has definitely been angry. Imagine going through puberty and OHS and heart failure all at the same time.
I look at it as a grieving process. You have to give yourself the right and the time to grieve for the life that you lost. Hopefully, you will eventually come to acceptance and be able to live the life that you have and not the life that you lost.
It does help me to know that the doctors will never make the same mistake with another kid. It does help me to know that Brian made medical history when his LVAD was taken out without a heart transplant. 2 years ago it had never been done, now it is quite routine. I try to find the silver lining, some days it is really hard.
Please hang in there!

 

[WayneGM]

Sorry to hear of your story, Seth. It's unfortunate your OHS and recovery didn't turn out as well as you expected. However, I assume since your surgery was necessary so quickly, there were dire consequences if you didn't have it, so hopefully this is no longer the case despite the new problem you endure.

I was asymptomatic when I had my surgery, so I can honestly say I feel worse today than I ever did before OHS. I drove to the hospital the day of my surgery feeling perfectly fine and came out feeling like I got hit by a train. I almost died from pericardial tamponade during my recovery.....saved by an ambulance trip to emergency surgery to drain the fluid. And now my scar didn't heal as I had hoped...it went keloid and three years post-op it is still very tender and itches like crazy, a constant reminder that I had OHS. I've resigned myself to the fact, my chest area will never feel "normal" again. I also believe my surgery and slow recovery had an influence on decisions made at work that resulted in my being "restructured" out of a job soon after my return to work. Finally, that sense of confidence and invincibility I had prior OHS is gone forever. I have a new respect for how fragile and unpredictable life can be.

In many respects OHS was the worse thing that's ever happened to me in my life....and the best thing. Pre-op, inside my heart chambers were enlarging and heart walls thinning even though I felt fine, and now the chambers and walls have returned to normal, giving my heart a new lease on life. The experience has also changed how I view the priorities in my life. Although the discomfort of my scar is a constant reminder of my OHS ordeal, and the life changing impact it has had on me, I know deep down I'm better off in the long run. Is my scar a badge of honour? In truth no, but perhaps poking fun at it is a way for me to stare the whole OHS ordeal in the face and help me move on. I can't change what has happened, but I'm determined to focus on the positive aspects and not look back at what I couldn't control anyway. I hope you can come to terms with the situation and look forward to the rest of your life. Best wishes and good luck. I truly hope it gets better for you.

 

[aussiemember]

Finally, that sense of confidence and invincibility I had prior OHS is gone forever. I have a new respect for how fragile and unpredictable life can be.

That is oh so true. It's been one of the hardest things for me as I recover from surgery - My sense of trust in myself and my ability to deal with anything life throws at me has been severely shaken.

Seth, thanks so much for sharing where you are at. Personally I think we need to hear the good and the bad so that if things go wrong for us we know we are not alone.

 

[lilteach3234]

Seth,

I am so sorry to hear your surgery didn't go as planned. I have a son that is 22, and at age 9 he collapsed on my bathroom floor with a cerebral brain hemorrhage unexpectedly. This is also after a diagnosis of autism. He is now blind, wears diapers, is in a wheelchair because he can no longer walk, and he also can no longer speak. Each day however, he wakes up with the most gorgeous smile, has an incredible personality, know who everyone is, and asks for nothing but to be fed, bathed and changed, and he genuinely knows we love him.

Sometime we just don't know what this life holds and I was very angry that my nine year oldi child had everything taken from him. The first nine years of autism were hard enough.

I too went through a aortic valve replacement, Bentall procedure, had a very difficult time in surgery and an even harder time the first two days of ICU. When I got home there were a few days that I wished I would have just died. I too, only had a few days to prepare for surgery.

I am 8 weeks post op now and I have pounding, but it is a pounding that I know is keeping me alive. I am fatigued and there's some days I wonder if I'll make it up the stairs in my house.

I begin cardiac rehab this week, not because I want to, but because I know it will do me good not only physicaly but mentally as well. I am only 49 and know I'll be in there with ones much older than me, but I am look forward to the nice individuals I might meet.

I hope things get better for you. What I've done to make myself feel better is realize that I will get to spend more days on earth than what I would have if I would not had the surgery, I'll get to see my daughter graduate from University of Texas is 2012, see my first grandchild (now 4 months) take her fist steps into a kindgarten class, and most importantly continue to me a mom to my Jeremy (who I know needs me).

Good luck to you and I hope things get better for you!

 

[Jkm7]

Seth.....

Sincere thanks for your post. Though I have followed some of your posts in the past, all you wrote here was so eye opening and reality enforcing to read.

I hate this has happened to you and the way it has changed your life.
You have done all of us a service as anyone who reads what you wrote has to do some serious thinking and face the facts of all that has happened to everyone one of us who have had our hearts cut open.

I seriously doubt anyhone goes through this and doesn't come out of it changed in some significant way.

I so hope your doctors and valve experts find an explantation and treatment to offer you. I won't say to you 'learn to live with it'........sometimes that is so much easier said than done.

I wish for you to find a peace with it and a way to move forward with relative joy in life.

I hope you have wonderful things to look forward to for future joys that make the trial of getting through some days more precious.

This was very generous of you to share.

 

[BigOwl]

Seth, there's not much I can add to what's been said, except to reiterate Marguerite's sage and, I think, helpful advice. I feel as though I've cheated death twice now, and am quite simply glad to be alive. It would be much more difficult were I in your shoes, but know that you have a great deal of support from us on the forum, and we all wish you the best in future.

 

[zipper2]

Seth,i have had 2 surgeries in 17 years and i havenot had a good
result entirely with the 2nd in Jan here,but i thank God for the
borrowed time hes given me here with my friends and family.
I am constantly at my gp for tests and constantly 4 hour drive
to my cardio,in midst of having to drain the fluid around my heart
and lungs,it has been a trying time for myself and family since
but,i know i will never have a third surgery,due to issues such as
scar tissue,my heart is very enlarged and tomorrow i am meeting with
my gp to give me more negative news on my last echo my cardio
just recently did.
My scar 17 years ago was invisible,now it's terrible,but fact is
we are here to share our stories for others,that it is a beautiful
rose,but yes there are thorns and i'm sorry you had all this to deal
with and i'm happy you shared your story with us,and were able to
release this off your shoulders is a good thing.
I look at it as i'm still alive,and thats something to be thank-ful for
even with the added stress and trial in my life and all going on around
I keep in mind the beautiful reasons i am here.Even though i have to
head back to my cardio soon to drain this fluid.I have a arotic valve
from 17 yrs ago that wasnot changed out 2nd surgery and it is
leaking more than it should,but i cannot have a third surgery and i
can't be angry they didnot change this valve out 2nd surgery for
when they did my mitral,cus i look at it as i likely wouldnot have
survived my 2nd surgery for alot of reasons they explained to me
if they did a redo on arotic,but i did survive and am not angry they
didnot replace my arotic as it needed to be.It has been a hard uphill
climb for me and test and trials without heart issues test my faith
but i will never give up on God and what he has allowed me here yet.
Thanks for sharing your story and helps us to know we arenot alone
with all this,it makes me drop tears reading your post as well only cus
i cannot identify exact same way,but to know I am not alone and it
helps to heal those negative thoughts that crawl into my life at times.
WE are only human.....Right?
THANK-YOU

zipper2 (DEB)

 

[skeptic49]

Thanks for your post, Seth. It should be required reading for those who are pre-surgery, not to scare them but for its realistic view of one person's experiences post-op. No one can predict how each of us will fare after OHS, but being prepared for a less than favorable outcome can perhaps be helpful.

I wonder if the suddeness of the need for your surgery is a significant factor in the way you feel about it now. I've known about my valve problem for years now, and I recently found out I am BAV with a dilated aorta. I have pounding all the time right now...in my chest and all the way up into my throat, as if my heart is going to explode and blow my head off, as I told one of my doctors. I can't sleep on my left side because of the intensity of the palpitations. If I have a pounding in my chest after OHS, assuming I survive, at least it won't be a surprise or a new experience. Your post helps to lower expectations, which is probably a good thing.

I sincerely hope that you will soon feel better about your situation. Perhaps you will with the passage of time and the support of friends.

Jim

 

[MissMelis]

Seth, your last tagline "Another day, another chance to make something good." struck me - you've been through an awful ordeal, but the fact that you are still trying to make something good or find something good in each day speaks of the strength you must have.

Thank you for posting this. You are an excellent writer and you are doing good things. I hope that the near future holds good things for you.

Melissa

 

[seth]

I want to express my deepest gratitude to each of you who read my post and responded with such empathy and insight. What an incredible gift you have shared not only with me but also with everyone who comes across this thread.

Clicker Mark, I agree, I want something good to come of this and I'm encouraged that my surgeon at USC is working with a Dr. at Cal Tech to study this issue in the lab.

Eva, bless you for your prayers, encouragement and generosity. Although I was laid off and lost my job, fortunately my health insurance is through my wife's job and I still have that.

Freddie, all the best. Minutes into hours into days.

Marguerite, you are right, I am a perfectionist and I see how that can make dealing with this issue more difficult. I appreciate your wisdom which I sense is a balance of head and heart. I've been trying to do two diametrically opposed things at the same time: 1. accept my condition enough to live with it, and 2. reject my condition and push for answers and solutions for what is clearly not right.

Gustaf, I know you also suffer from pounding-vibration. As far as hypnosis goes, I had my first meeting yesterday with a psychologist for hypnotherapy. We will see how it works out in the weeks to come.

Ross, It's amazing all that you have been through. I don't want to scare anyone away from a surgery they need. What's frustrating about my case is that apparently everything was done right but the results, as my surgeon says, are "unique". He's taken to calling my condition the "phenomenon".

Al Cap, I passed along portions of what you wrote on my other thread to Dr. Cohen. Thanks for you input.

Mary, It's true I can't go back and change what has happened. With OHS nobody gets to have control, that is a big part of the traumatic nature of it, we are helpless and give ourselves over to the doctors and to medical science. I've channeled a lot of energy into this issue, pushing to have my condition recognized and for answers. Now I'm at a point where it's in the hands of researchers and I'm at a loss as to what to do next. It makes me feel helpless and emotions that I felt months ago have resurfaced.

Jorsarge, thanks for sharing your situation. If you have time please consider taking my survey at: http://tinyurl.com/cmj3c6

tex/Jane, I wish you all the best of luck with your next surgery and the healing of your sternum, keep your spirit through it all.

briansmom/deanne, I take to heart what you say knowing it comes from deep personal experience. There may be a high probability that at some point I will have to face the loss of the life I had. Honestly I'm not yet ready to stop pushing, either for me or for others. Because I keep fighting I can't fully grieve and accept my condition as you suggest.

Wayne, I can really relate to your post, we have many things in common, especially having a worse quality of life after surgery (although serious problems were fixed through surgery) and the loss of employment. I know what you mean about losing confidence. I've lost confidence in my health to function adequately under stress. But more generally I've lost confidence in the future, there's this sense that bad things now happen to me. There are so many good things that are still there, it's just that bad takes center stage and casts a shadow. I need to focus more on the positive.

aussiemember, I hope our confidence will return. I believe it will. All the support being provided in this thread is of great encouragement and a basis for confidence. Like you say, we are not alone. I like the phrase "Before you can achieve, you must believe". Certainly to some extent our mental projections pave the way toward the probability of occurrence. But I also believe in being honest about things.

lilteach3234, Thank you for sharing your personal story but even more for your courage and that of your son Jeremy. I can't imagine what you have endured and continue to deal with. I appreciate your honesty, and I'm inspired by your strength. I hope your post-op recovery goes well and that cardiac rehab is helpful for you. Take good care. If you continue to feel pounding-vibration from your Bentall Procedure please take my survey at: http://tinyurl.com/cmj3c6

Jkm7, my previous posts have mostly dealt with facts and updates, they don't really delve into the emotions associated with what's going on. Your words and thoughts are beautiful and peaceful.

BigOwl, thanks for your support and well wishes.

zipper2/Deb, what a complex condition you have. It's difficult when living with problems that doctors can not fix. If only we could prep for surgery, have surgery, recover from surgery, and have our health restored. When that's what happens then the suffering and difficulties involved are worthwhile and serve a purpose. But when there's no solution then the suffering feels like it is just suffering to be lived with every day. The negativity can be kept a bay most of the time but there are times when it creeps in. Like you say, we are only human. But human can be good; just reading the posts on this thread is a powerful sign of the grace that is possible being human.

skeptic49/Jim, I really thought the hard part would be getting through surgery and then recovering. I never thought that I'd feel worse because of the surgery. I never went through what you have been dealing with. All I was experiencing before surgery was mild chest discomfort. You have so much on your plate that I never had. In that respect I've had it easy. My two aneurisms and BAV were flying under the radar and I thought life was good... unaware of the danger. Now apparently the danger is gone, but physically I don't feel good. It rather ironic. I hope when the time comes for your surgery everything goes well and the results are the best possible for your case.

Dyna, you are correct, I have anger issues related to what has happened. Sometimes I even resent being around people who are in better health than me and don't have my struggles. But there are so many people with far more serious issues than mine. It helps to put things in perspective and get outside my personal problems. Actually because of my pain I have a deeper appreciation of people who endure under really tough conditions. There are still times when I feel down, and feel angry.

MissMelis/Melissa, thank you for your beautiful sentiments and your support, it means a lot to me. Sometimes persistence pays off and I'm glad that things continue to move forward with Dr. Cohen, Cal Tech and St. Jude Medical. There is the potential that something revolutionary and really good may come out of this. At this point it's out of my hands and I'm not sure what I can do next. I hope in the future I'll have good news to share on VR.com.