Long LIfe???

[John & Joann]

Ross asked how a valve replacement lives rather than exist. This is an issue that Joann and I have discussed since 1971. Both of our lives were changed. Our daughter's live was changed. We tried to make the best of a difficult situation. We were fortunate that we had good insurance and lived where good medical care was available. We both became educated regarding cardiology in a short time. We did NOT even know that coumadin was going to be necessary nor did we know about the antibiotics for dental treatment until 5 years after the surgery.

We have traveled throughout North America. I had steady employment and a decent salary. Joann stayed home and raised our daughter. We were very lucky that ever crisis came out without incident. (stroke, TIA's, atrial fib, gall bladder surgery, emotional issues, vascular disease,) and the list still grows.

We believe that God gave use the intelligence and opportunity for good treatment. No, Ross it is not easy. The Golden Age is not for the weak!!!!!

This does not adequately answer the question, but provides a little insight on 34 years with 2 mechanical valves, a pacemaker, and 3 bypass. We look forward to a 10 cruise next week and then return to Florida for 3 months.

3 months in the RV with a dog, cat, and an old man is a study of family relationships!!!! We hope that all 4 survive.

 

[Emma]

The term you used 'death sentence' turned my stomach as I'm sure it would other parents of heart valve patients (not to mention patients themselves) and prompted me to write some reply to you.
My daughter had her valve replacement when she just not even 2 years old and is 6 now so to think of loosing her 'because' of her replacement is just unthinkable. We did not put her through all that to think about her dying young - she was given the replacement to give her as much chance of a normal life as possible. Without her replacement she would have not made the age of 2.
However, I have asked the question you asked, of Chloes surgeon and cardiologists and all of them say they are very hopeful she would have the same life expectancy of anyone else.
Not much help to you I'm sure but i did feel a need to write in this thread after reading the wording you had used although i have no doubt you did not mean to upset anyone with it.
Worry about today, the future will look after itself
Emma

 

[OldManEmu]

I asked my surgeon this same question straight out. What is my life expectancy after surgery likely to be on average? I was 41 and had no co-morbidity factors. His reply was normal. He did however warn that Warfarin therapy carries a statistical risk of major stroke or death of 1% per patient year.

 

[JeffO]

Four Score!

Four Score!

http://www.onevalveforlife.com/ovflcontenttmp.aspx?section=1&page=5

Here's a nice graph of life expectancy after valve surgery as well as a roundtable article on "Life Expectancy and Valve Selection" that I found helpful before my surgery when I thought I might need a new aortic valve.

Though it doesn't show life expectancy of people under 50, I think it gives a good indication that you should expect to live a normal lifespan.

Hope this helps.

Jeff

 

[INRtest]

When I started this thread last month I must have been a little down and needed some reassurance. I apologize if I offended anybody. Upon reading the replies, you can see that most responders are quite upbeat and look forward to long, long productive lives. What a nice, healthy group of people.

 

[Curtsmum]

I'm sure everybody has thought about this at some point, like others have said at least heart patients get checked out after surgery, so if there is any problems they can be delt with straight away.

 

[Lotti]

Question: Does anybody know of any studies on the longevity of VR patients? Obviously this will greatly vary from person to person, but I can't help but wonder if the surgery that most of us have had is a death sentence.

Encouraging words would put a smile on my face, but I WOULD ALSO UNDERSTAND IF THIS POST IS DELETED. Thanks...

Jess

Hi. i hope this works!

I have recently found out that a great aunt of mine, who is in her eighties, apparently had a VR in her twenties (mechanical). I'd say that's pretty good going. I'm trying to research exactly what she had done etc. On a VR waiting list, I have been comforted by this.
I know that this may be a rather long exception, but I also know that if I don't have surgery then my survival chances are slim. It's a rotten thing to live with, but I am just going to hope that I get a better life and a longer one, than would be possible without any surgery at all.

I hope everything goes well with you and that we can all do a reunion in 50 years!

 

[RCB]

Sorry. but........

Sorry. but........

Hi. i hope this works!

I have recently found out that a great aunt of mine, who is in her eighties, apparently had a VR in her twenties (mechanical). I'd say that's pretty good going. I'm trying to research exactly what she had done etc. On a VR waiting list, I have been comforted by this.
I know that this may be a rather long exception, but I also know that if I don't have surgery then my survival chances are slim. It's a rotten thing to live with, but I am just going to hope that I get a better life and a longer one, than would be possible without any surgery at all.

I hope everything goes well with you and that we can all do a reunion in 50 years!

......They weren't even attempting heart valve replacement surgery 60 years ago. I have researched this pretty throughly, however if you have any details I would be glad to take a look at it.

 

[PapaHappyStar]

The term you used 'death sentence' turned my stomach as I'm sure it would other parents of heart valve patients (not to mention patients themselves) and prompted me to write some reply to you.

Life is a "death sentence" -- i.e. you can only die if you are alive now, so I am happy to be *living* under it.

Life ( and death ) is more clearly defined for me now and I think will be a journey full of thought and introspection for your little girl as she comes to terms with herself as well.

 

[bouteloa]

Very Long-Term Survival and Durability of Mitral Valve Repair for Mitral Valve Prolap

Very Long-Term Survival and Durability of Mitral Valve Repair for Mitral Valve Prolap

Here's a peer reviewed article about what we with valves, repaired and replaced, might expect. Expect statistical analysis.

http://circ.ahajournals.org/cgi/content/full/104/suppl_1/I-1

 

[greggo32]

Normal to be down. Maybe PTSD

Normal to be down. Maybe PTSD

Hi Jess,

I wanted to respond to your concern about longevity and in particular, death. The way in which you pharsed your initial post tells me that you may be suffering from Post Traumatic Stress Disorder (PTSD). I am mentioning this because I identify with what you said in the beginning of this thread. I have a bit of a foreshortened sense of my future. I feel as if something may happen to me. I am not the same type of person. I think about death on a daily basis. By this, I don't mean that I am morose. I live an extremely active life, going out many nights per week and doing vigorous exercise daily. However, I still feel quite vulnerable and frightened at times. Granted, these are my issues; yet, I sensed that we MAY have some things in common. And, I'd like for you to read a bit on PTSD because it sure sounds like you may have it!

Truly,

Gregory E. Golden

 

[twinmaker]

I would venture to guess that all of us, at one time or another, have thought about our life expectancies after going through what we've gone through or are getting ready to go through. We wouldn't be human if we didn't. My second OHS was over 24 years ago and I still at times wonder about the future. The problems we all face here don't magically disappear once our surgeries are over. Don't get me wrong...I'm alive and doing what I want to do because I had my two OHS. But some of us have to take Coumadin and most of us take other drugs also. We have to be sure to get our check-ups, etc. So we can never really forget about our "cardiac problems" like you can once you have your tonsils or your gallbladder out. I'm not going to sit here and say that life has been a bed of roses since my last surgery. I've had chronic A-fib that required an A-V node ablation with a pacemaker implanted, then V-tach was discovered and the pacemaker was removed and a defibrillator/pacemaker was put in. I won't go on with the list. Most of us face these things...and we all probably worry about the future too. I know my worry/thoughts come when it's late at night and I can't sleep or when I'm facing my next check-up, etc. I try to stay busy and active and I pray... A LOT! I know I'm thankful for everything that has been done to help me get to this point. Don't beat yourself up for thinking about the "what ifs" but do the best you can to move through those feelings quickly. I've done a lot of living since my last surgery and I'm banking on many more years. Hope I've helped a little. Linda

 

[BDMc]

Life Hope and Promise

Life Hope and Promise

I grew up not expecting the world to survive, much less myself. While I was shocked when diagnosed at 29, and operated on just months later, I wasn't surprised that something was terribly wrong, just what it was. I did also feel very concerned about my responsibilities/obligations to others. I have had from one to five dependents(none of them family or lovers) since I was eighteen. I was terrified of leaving them without my support. I was so happy to have survived my surgery that all the other little bumps didn't get to me for quite a while. Living with a recalled valve has definitely made my mortality a big part of my life. It is still a source of anxiety. On the other hand, I've had 21 years I would not have had, (at the very least not as energetic years). I've had both wonderful romantic adventures, and some now humorous misadventures. I have had many wonderful joyous experiences. I had the blessing of witnessing my father's death by choice, and at home. This was not suicide, but a conscious choice to refuse life support. He died with dignity, and surrounded by love. I count his example among his greatest gifts. This year has passed so quickly, it seems equivilent to a month thirty years ago! This scares me to think the end cannot be too far off... Yet only now am I approaching achieving my deepest desires for myself, and the satisfaction, hope and promise I feel today both makes me feel my future is bright, and that if it ends tomorrow, I did at the last begin to live as I should. I am encouraged by what I've read on this web site, and I do hope to live another 20 years Read Glenda's prayer, for even if you are an atheist, loving others is what life is all about. All the best, Brian

 

[Christina L]

I have read this thread

I have read this thread

with great interest. I am not surprised at the responses by everyone. I have found such strength and inspiration from Vr.com members.

As many of you know I had a recent echocardiogram that was not so wonderful. At two years out from mitral valve repair, I thought I was going to be "good" for another couple of decades at least - no problems, long life (which hopefully will still be the case) - God willing.

The echocardiogram was another wake-up call for me to get to the business of living - that this valve disease that I was born with is not going to go away quietly like I had hoped.

I was terrified at the news of the echo and still am very scared. However, it is not because I may die, it is the fear of LIFE - with this heart of mine. To die would be easy and wonderful (in my opinion). I firmly believe there is a life after this one and once we get there, we will kick ourselves for holding on to this one.

I have always lived with the thought that life may be shorter for me than most, but it is all relative - my brother died when he was 4 from an accident and my parents both died in their early 60s (from cancer and heart).

I don't want to leave this earth any time soon and hope that I can be brave going into these latter years of mine. I know that they say "growing old aint for sissies" but growing old with a heart condition really separates the men from the boys. We all will be polished into diamonds by the time we get to the other side.

I love the Woody Allen saying, "I'm not afraid of death. I just don't want to be there when it happens." ~

Christina L

 

[PapaHappyStar]

Here's a peer reviewed article about what we with valves, repaired and replaced, might expect. Expect statistical analysis.

http://circ.ahajournals.org/cgi/content/full/104/suppl_1/I-1

Looks very good for both groups -- but especially for those with a repair. I cant see what exactly they are using to correct for age and other medical conditions already present, that improves survival statistics. Their patient sample though seems to consist primarily of older patients ( mean is ~ 65 yrs ) -- age comes with relatively higher uncertainties. I expect even bigger samples with better age distributions are available but no one to conduct a painstaking/expensive study maybe..

The long term survival compares very well with the baseline ( survival at similar age in the general population )