I Refuse To Be A Victim...

[PeggyM]

After learning last week that I may be facing a third open heart surgery, I very easily almost slipped back into the victim mode. I know what it's like to feel that fear, anger and especially loss. Loss of lifestyle, financial loss, missed work, loss of self. Having to start all over again....again and again and again.

Yet I insist on just plugging along, continuing to do what I do, fighting sometimes for breath, fighting for energy, fighting to control the urge to scream and lash out and ask why a million times a day. So I continue to be a bodybuilder, to race outrigger canoes, to amaze and frustrate doctors, to be the athlete I've always been and not let this rob me of my identity yet again. I know what it takes to recover and fight back and I can do it again if I have to. God knows I don't want to. I want just a few months of being normal. A year. But that's never really happened since 1989. For some reason, my biggest contest is playing the health lottery and trying to beat the odds. I'm really, really sick of it. But that's my life.

My joining this forum and posting this here is sort of like a pledge to myself. I don't want to go down that tunnel of despair. And I am very grateful to see so many others who are in the same boat.

Thanks for the opportunity,

Peggy

 

[Kathleen]

Peggy
I am sorry you have to face the monster yet again. There is much to be said about knowing what you are up against and having to dig down deep to find the resolve to stand up to this yet again. I have done it 4 times and also threw in a lung surgery, a half dozen stents and a couple of pacemakers. Each one made it more difficult to emotionally handle. I already knew I was so far out of the word "normal". I do not "look" like I have had what I have and do amaze doctors with my will to go on. I used to put up a brave front but as time went on I finally decided I could let my guard down and rant and rave and kick the wall with the unfairness of it all. I felt if I did not give in to my fears I would explode with the strong pretend face I was wearing. I now find I can get so angy at my heart and swear at it and release that energy I call fear and once you own it you can handle it better. Three times in can be harder for all the reasons you already know. My advice get mad, wallow and holler and then gather yourself and do what needs to be done and picture yourself after surgery --- you know that one well. Best of luck to you.
Kathleen

 

[WayneGM]

Good for you, Peggy. Welcome to the VR community. Sorry to hear about the circumstances but glad you found us.

 

[Nancy]

Peggy-

My husband was like you. He was a terrific fighter, an athlete in his younger years, and he never gave up. He did get discouraged and asked, "Why?" sometimes, but went right on fighting.

That fight was the only thing he had going for him at times, but it was enough to get him to a normal lifespan even though he had multiple and severe medical co-morbidities.

By the way, his heart valves worked very well, right to the end. He passed away at age 75 from essentially multiple organ failure. Many of his doctors were amazed that he lived as long as he did. He had had three heart valve surgeries two lung surgeries and many, many other problems and more minor surgeries.

You just keep on being the strong and feisty person you are. It will serve you very well. The human mind is the most underrated thing in all this.

 

[Phyllis]

Welcome, Peggy. You will find lots of support here. My best wishes that this third one is the last and I know your fighting spirit will carry you a long way.

 

[catwoman]

Peggy:

My husband had his mitral valve repaired last month. He's doing great. He didn't think he was having symptoms pre-op, but I could see them. Even while still in the hospital, he was able to tell that, yes, indeed, he was symptomatic. His incision was a port-access (Heartport), minimally invasive one. Several others here have had the same type of surgery.

If you don't need any other procedure done at the same time, check into this surgical approach. You've already got 2 OHS under your belt, no doubt done via sternotomy. I'll bet you could find a surgeon who would seriously consider it. I've read that surgeons DON'T generally like this approach, and an RN at the hospital said that patients say it's more painful. Hogwash! My husband says he had minimal discomfort, has had to take little pain meds.

Do you know why your first aortic valve failed at 4 years post-op? Just curious.

 

[TrophyWife]

Welcome. You are welcome here. I'm a newbie and found that the veterans on this board are generous with their love, their thoughts and their advice.
Have you gotten any answers why there is a repeat surgery?
What are chances for robotic surgery that's less invasive?
You sound like you're in great physical shape - GOOD FOR YOU!!!
Let us know what you feel comfortable sharing....
Nan

 

[Tom F.]

Welcome to VR. I understand the frustration, I would feel the same. But do hang in there, and do not give up. Do what you have to do to get yourself better, then go live your life. You know what its like because you have been there. But that also teaches you that if you must, if you absolutely must, you can do it again.

 

[geebee]

Welcome, Peggy.

Sorry to hear that you will be joining the 3 OHS club but know that you are not alone. The anger, frustration, fear and determination are all so very normal. I actually considered not having a third surgery since I was so aggravated that it was necessary but, obviously, I got past that point and all has been great since.

If you feel up to it, please share more of your story with us. Perhaps we can help a little more.

Scream, cry and then do something crazy.

 

[briansmom]

Peggy,
We are right there with you. My son has had 3 OHS in the last year and we just found out last week that they now want us to consider a heart transplant. IT IS SO UNFAIR!! We have been wallowing in self pity for most of the week, but are now trying to pick up the pieces and see the good that is still possible for him. I really don't see what choice we have in this. We can let this get us down, but then where are we - sick and depressed. On the other hand, we can keep fighting, we may be sick, but at least we aren't as miserable as if we are sick AND depressed. Anyway, hope heals. That's my story and I'm sticking to it!
The people on this site offer a wealth of knowledge and encouragement. Many of them have dealt with far more than my son has and they are still right here living life and trying to help others. They are truly inspirational.

 

[Ross]

That's pretty powerful for a first post.

I'm well on my way to my third surgery and hoping this one can be done via a cath. I have other issues that won't permit me to endure another major surgery, but I certainly know where your coming from. Welcome to the Forums, er, funny farm.

 

[PeggyM]

Thank you so much for the encouraging and welcoming words. It means alot. When I talk to family or friends, I can see this cloud of dread overtake them. Not real uplifting, as you know.

In a nutshell my history is this. Blood clots since 16. Some kind of so-called vegetation on my native aortic valve at 34. No symptoms except a cramp in my left calf. I was rock climbing then and thought I pulled a muscle. To make a long story short, it turned out there was this growth on my valve, it was breaking apart and a piece landed in the popliteal artery of my leg. When they took the thing out of my leg they sent it all over the country trying to find a diagnosis. Nobody really could, so they called it non-infectious thrombotic endocarditis. Bla, bla, bla....The valve was replaced via cracking the sternum open and ruining my life (or so I thought at the time. lol.) This was at Alta Bates in Berkeley. BTW, I chose a mechanical one so I wouldn't have to go through the surgery again. How wrong I was!

At age 37 after running away to Texas, the damn thing failed and I went into heart failure. Thought I was drowning. The surgeons there said the valve that was put in was too small for me and that they normally use that size for pediatric patients. I was "thrilled." Right. More like psychotic. The surgeon at Alta Bates was famous for operating on children. Could that be why? Or possibly because he didn't take into account that I was a competitive bodybuilder and athlete and that my heart would be somewhat enlarged. Who knows. I was devestated. But I got through it.

Life went on, continued to have blood problems, an internal bleed in my leg with sky high INR, numerous hospital stays, couldn't walk for 6 months, then hopped right back on the damn horse. I made it back home to the Bay Area a couple of years ago because I could not handle getting sick there and being alone one more time. Since then I've had little surgeries for basil cell skin cancer from too much sun. And now my mitral valve regurgitation is severe. Aren't I fun??? Hahaha! God knows you can't lay it all out there for everyone, as most people can't stand to here it. So this is nice! I promise not to wallow in it. Never really have. I get angry more than anything.

My cardiologist tells me this and then goes on vacation! How dare he!!!!

What scares me more than the heart surgery is they found out I have a low GFR, meaning decreased kidney function, on top of this. There is absolutely no reason for that. Not diabetic, low BP, heartrate of 55, etc. The only thing I can think of is when I was competing I ate a high protein diet. I probably still eat more protein than the average person. But I also have alot more muscle than the average person too, so I need more.

Anyway, I continued to compete AFTER the heart surgeries, train in the gym consistently, race on an outrigger canoe team where I think I'm going to blow my heart out, lol, and try to just keep living my life until D Day, whenever that is. I'm hoping if I do need surgery they can do the minimally invasive one. My cardiologist said a couple of doctors at Kaiser have been successful with it. That is what scares me too. I have Kaiser. The care and "customer service" is nothing like I had with other doctors and insurance before. Sometimes I feel like I'm going to die with Kaiser.

The next step is a TEE in a few weeks. And an untrasound on my kidneys.

I wondered last week how many heart surgeries a person could withstand. And I always said I would never do it again. But then I found you all. And now I see that it can be done and life can go on again. Thank you from the bottom of my broken heart!

Peggy

 

[WayneGM]

All I can say is "Wow" Thanks for sharing your story. I'm glad, and inspired, to see you've got such a postive attitude despite the challenges you've faced. You sound so strong and determined, so I'm sure you'll do fine facing a third OHS, but I sure hope this third one is your last one. Best wishes.

 

[doberman]

You need to talk this is the place, can't blame you for feeling down. Prior to my op. I would send notes on this site rather than worry my wife, mabey this is the same for you. Everyone needs someone to talk to, this site is a great thing knowing strangers are concerned for your health and want to help. We have all been through this one way or another but you have been getting more than your fair share. Hopefully your sports activities can keep you focused on the positive, and you will fight your way through one more time. Good luck with your tests. Keep us posted on your progress.
Best,
John

 

[Blanche]

Not a victim, indeed!!! After reading your post, I would call you a hero.
Blanche

 

[Ross]

I chose a mechanical one so I wouldn't have to go through the surgery again. How wrong I was!

At age 37 after running away to Texas, the damn thing failed and I went into heart failure. Peggy

Was it that the valve failed or that being too small, caused you to go into CHF?

 

[hensylee]

"My joining this forum and posting this here is sort of like a pledge to myself. I don't want to go down that tunnel."

Well, if you're goin down any tunnels, there will be a crowd because we go with you all the way. That's our pledge.

Welcome to VR.

I was going to say 'wait til you hear from Nancy' but I got in too late. She and her Joe faced so much and she is a wealth of information for never giving in and never giving up - her motto.

You have really been through it. I am so sorry, but you are a true fighter and I am sure one of these days you'll be out doing all those things you want to do. We'll all hang tough with you.

Blessins...........

 

[geebee]

Peggy,

Thanks for sharing your story - it is certainly a bit different from the ones we normally read. I sure hope things go smoothly for you and they can figure out what is happening with your kidneys.

Stick around - we will help you get through this.

 

[Mary]

Thank you so much for the encouraging and welcoming words. It means alot. When I talk to family or friends, I can see this cloud of dread overtake them. Not real uplifting, as you know.

In a nutshell my history is this. Blood clots since 16. Some kind of so-called vegetation on my native aortic valve at 34. No symptoms except a cramp in my left calf. I was rock climbing then and thought I pulled a muscle. To make a long story short, it turned out there was this growth on my valve, it was breaking apart and a piece landed in the popliteal artery of my leg. When they took the thing out of my leg they sent it all over the country trying to find a diagnosis. Nobody really could, so they called it non-infectious thrombotic endocarditis. Bla, bla, bla....The valve was replaced via cracking the sternum open and ruining my life (or so I thought at the time. lol.) This was at Alta Bates in Berkeley. BTW, I chose a mechanical one so I wouldn't have to go through the surgery again. How wrong I was!

At age 37 after running away to Texas, the damn thing failed and I went into heart failure. Thought I was drowning. The surgeons there said the valve that was put in was too small for me and that they normally use that size for pediatric patients. I was "thrilled." Right. More like psychotic. The surgeon at Alta Bates was famous for operating on children. Could that be why? Or possibly because he didn't take into account that I was a competitive bodybuilder and athlete and that my heart would be somewhat enlarged. Who knows. I was devestated. But I got through it.

Life went on, continued to have blood problems, an internal bleed in my leg with sky high INR, numerous hospital stays, couldn't walk for 6 months, then hopped right back on the damn horse. I made it back home to the Bay Area a couple of years ago because I could not handle getting sick there and being alone one more time. Since then I've had little surgeries for basil cell skin cancer from too much sun. And now my mitral valve regurgitation is severe. Aren't I fun??? Hahaha! God knows you can't lay it all out there for everyone, as most people can't stand to here it. So this is nice! I promise not to wallow in it. Never really have. I get angry more than anything.

My cardiologist tells me this and then goes on vacation! How dare he!!!!

What scares me more than the heart surgery is they found out I have a low GFR, meaning decreased kidney function, on top of this. There is absolutely no reason for that. Not diabetic, low BP, heartrate of 55, etc. The only thing I can think of is when I was competing I ate a high protein diet. I probably still eat more protein than the average person. But I also have alot more muscle than the average person too, so I need more.

Anyway, I continued to compete AFTER the heart surgeries, train in the gym consistently, race on an outrigger canoe team where I think I'm going to blow my heart out, lol, and try to just keep living my life until D Day, whenever that is. I'm hoping if I do need surgery they can do the minimally invasive one. My cardiologist said a couple of doctors at Kaiser have been successful with it. That is what scares me too. I have Kaiser. The care and "customer service" is nothing like I had with other doctors and insurance before. Sometimes I feel like I'm going to die with Kaiser.

The next step is a TEE in a few weeks. And an untrasound on my kidneys.

I wondered last week how many heart surgeries a person could withstand. And I always said I would never do it again. But then I found you all. And now I see that it can be done and life can go on again. Thank you from the bottom of my broken heart!

Peggy

Perhpas you should read some of the posts from mothers who have had children born with congenital heart defects if you want to get an idea of how many heart surgeries someone can have. Lynlw's son Justin is scheduled for his 5th next week; he's 19. Justin has a good idea of what lies ahead of him, but he seems to have a good attitude.
On another note, what are your numbers with your regurgitation? You said your cardiologist left town on you; have you seen a surgeon for a consult yet? The TEE should give you a much better idea of where you stand with a time frame for any upcoming surgery.
We've had another member who was from San Francisco and had Kaiser for her medical provider. Maybe someone else will remember and post a few links to some of her threads.
You have had a tough time of it. Many people around here have. Read their threads and see how they've dealt with it. You've taken the right step by joining VR.

 

[briansmom]

I just watched the movie "Nativity Story", there was a quote that made me cry and I think will be my new motto: "There is always hope, Mary".

So, new motto: There's always hope - that's my story and I'm sticking to it!!!