If someone refuses valve repair/replacement surgery?

[Jkm7]

TOTALLY HYPOTHETICAL question for me so please, no one jump down my throat and tell me to have the surgery. I've already 'been there and done it twice' and I don't want the t-shirt.

I know it is ultimately fatal to not have heart valve surgery if you need it but what exactly is the progression of the symptoms if one chooses to say "no"?

I know quality of life diminishes rapidly but cannot find description of exactly what course of failure happens.

Thanks if you can help me understand.

 

[Nancy]

http://www.texasheartinstitute.org/HIC/Topics/Cond/valvedis.cfm

Read this article by the Texas Heart Institute. Look at the symptoms, and also look at the individual valves and their various problems.

I can tell you from first hand experience with my husband's heart problems that there are many fatal things that can happen from fatal arrhythmias, to cardiomyopathy which would cause heart failure to other things.

Joe had very serious heart failure which became intractable. He needed another heart valve surgery but his surgeon said he wouldn't make it off the table. He never had a fatal arrhythmia, although most of his doctors thought he would die that way. He eventually developed multiple organ failure involving just about every organ in his body, including his skin and GI tract, caused, I believe, by his heart not being able to perfuse his organs, and that is the way he died. He went into a coma and slipped away.

Oh, and before that happened, he had a brain bleed and also a heart attack, plus some lung problems, infections and other things.

So it was a multiple assault on his body which just couldn't sustain life any longer.

For Joe, it was not a rapid decline, it was a long and slow process and was very difficult.

 

[Jkm7]

Oh, Nancy. I'm so sorry to have asked you to relate that awful circumstance you and Joe endured together. My apologies for pain I may have caused you.

 

[sue943]

I don't know what sort of symptoms you have and just how severe your condition is but when I was waiting for surgery my life was very difficult, I don't think I would have lived long without the surgery anyway and if I wasn't going to have the surgery then I wouldn't have wanted to last long as I was so ill.

What sleep I got was in a sitting upright position, sleeping flat or with just a few pillows was not an option. I would be sitting on the edge of my bed gasping for breath, just trying to fill my lungs - a horrid feeling. Then there was the cough which brought up bloody phlem. Walking was no more than a few yards without support from someone and living alone meant I could just about get around the house.

 

[Nancy]

Hon-

You didn't cause me any pain. Joe lived a very long time, much longer than any of his doctors thought possible. We both did everything possible to make this happen, and so did many of his doctors. He was brave and fearless in his will to live and he died quietly and easily, no struggling or pain, just the way it should be. He just slept away. I guess you would say, he had a dignified death.

The time leading up to it was the difficult part. So, if you need surgery and you can have it medically, it is best to get it done. No one can predict how death will come, or how long you will live in a disabling way.

I believe that the best way I can help others now is to speak the truth in an unvarnished way. I know it sounds stark, but you wanted to know about the death part, and I thought it important to relate the experience.

 

[Jkm7]

Yes, Nancy. I did (do) want to know and I thank you for your forthrightness.

After my second surgery, I asked my cardio what would have been my experience had I refused the surgery and all he said was my quality of life would have been very bad, very soon.

I have wondered about what course I (any of us) would have traveled.

Again, I repeat. I have no further valve (heart) problems about which I am aware that require surgery. Thankfully.

 

[njean]

This is basically the stage that I'm presently at. In 2007, a year after having my old mechanical Aortic valve swapped out with a new St. Jude, my other mechanical valve, the mitral, starting going south. My husband & I flew to Houston to have that surgery, making that my 4th OHS.

When I got to Houston & after listening to what the drs. there had to say about the state of my heart, I chickened out & told them I just wanted to go home. They described the scar tissue in & around the mechanical mitral valve like spaghetti fused together. The risks were very great & the chance that I'd survive, well....questionable.

So I was sent home, with more meds to combat CHF which I have been diagnosed with Stage II - Stage III CHF, coupled now with Pulmonary Hypertension. I live with the knowledge that my heart is slowly deteriorating & it will be a matter of time.

Drs. in Houston said that although the doors to surgery have not been closed, they just want to wait things out ---- they & I know only too well, what symptoms I have to be watching for & for the time being, the meds are still maintaining & I'm at peace.

 

[terodac]

I am glad I had mine, I did not have long to live if they had not found it by looking for something else! I call mine a true blessing, I don't like to feel like I can't breath! That is a horrible feeling. I look back and it has been a long hard journey but I made it and glad I have had time to spend with my family and friends. It has changed a lot of things in my life, how I look at life and death and learning to let the small things go! I did not want the surgery did not ask for it, just something I had to do!

 

[TXWildflower]

When I start to feel sorry for myself and my piddling AVR coming up who knows when ,I'll try to remember your stories and realize mine is a piece of cake (knock wood) . Thanks for putting things in perspective and I feel like I know some of y'all a little better now and what you've been through. Such courage.

Rhena

 

[Ross]

While my problems are many, I too, have been diagnosed with Stage 3 heart failure, Hemosiderosis of the lungs, pulmonary hypertension, hypertension, foot neuropathy, gout, well you get the idea. Anyhow, my PCP said that it's a race as to what fails first, heart, lungs or kidneys. I've also been told I'd never make it through another OHS. I firmly believe that to be true.

 

[Jkm7]

Thank you all for your reponses. It seems I have needed to hear this information for some (unknown to me) reason. Both my surgeries were successful and my recoveries excellent but I have not gotten past the 'what if'. Perhaps this is because I have an echo coming up soon and am getting anxious?

 

[zipper2]

well after my mitral surgery Jan/09 and 2nd valve surgery i sure
not looking forward to 3rd surgery which i found out they should of changed out my 17 year old aortic valve,which they cleared of scar tissue as best they could and cleaned it up as they did put mitral in.
It was decided upon a seperate surgery the aortic valve would have to be done......DARN.

My conditions since mitral surgery are much the same chf,swelling,only dif they did a maze that so far got rid of the a-fib when will i need my 3rd surgery.....when the symptoms come back sob and all that good stuff you know that comes with a failing arotic mech valve.

am i angry they didnt do it all 2nd time....nah because of my high risk under the knife and what i all went through just the mitral,im glad they only did the one.

Do i worry bout it now....nope will the a-fib come back they say yes do i worry now,no ...theres not much that can be done now,till it happens and if god sees the strenght for me to go through a 3rd...so be it but for now im not gonna worry and stress and bring it on quicker,so ONE DAY AT A TIME
for me and hey did you ever think this leaking aortic valve for 18 years now may just keep ticking another 18 years dialated atria and all.
Whatever God holds in store is beyond control so i rest this with him.
I go back in Dec or Jan for a ultra sound and other tests to see what changes
have occured....but today is what counts and im feeling good today.

Good luck with your upcoming test i will keep you in my prayers also and when the tests come closer isnt it just human extinct to worry think we all do this well

 

[CThrock]

I really never doubted doing my surgeries with the "what if's " but I did there for awhile think "why me". That did'nt last to long though because I'm just greatful and blessed to be alive. The "what if's" and the "why me" don't matter anymore. I go through things everyday of finding out my health is not the greatest but, I have to cherish the days I do have and no looking back. I have learned so much from what other people have gone through and their courage and love have helped me face day to day.

 

[DebbyA]

There is a very good book, How We Die: Reflections on Life's Final Chapter, by Sherwin Nuland, that might interest you. He is a very good writer. Your library is likely to have it. I just checked the reviews on Amazon, and the first couple will give you a good view of the book.
I think about re-reading it from time to time. I know who has our copy, and we might get it back some day.

 

[Janie]

I promise not to go down your throat as I asked my surgeon the exact same thing about 2 weeks ago! Honestly, I didn't think I had many symptoms and I felt great so I asked what would happen if I didn't have my mitral valve repaired.

He quickly answered me that I would definitely go into heart failure. No doubt about it. The surgery I had corrected my valve and my life expectancy went back UP to where it should be since I have had the surgery.

Had it not been for excellent doctors here in Kalamazoo, who took my leaky valve and my family history seriously, I would have let this thing go for many years to come. I have them to thank. I actually did have a doctor about 8 years ago who told me I didn't have a leaky valve and that I was overreacting. I also HAD a friend of mine who told me that what I had was very very common and it wasn't a big deal and to "let it go".

2 of my brothers have cardiomyopathy. One also has a pacemaker and a defibrillator. To see what they are dealing with made me realize quickly how important it was to get this valve fixed. It is nothing to mess around with!

So, that being said, and now being 11 days out from surgery I am sooo glad I got it done. And, as for symptoms? Yep, I had them and kept blowing them off as anxiety or just accepted. For example, the day after my surgery I slept on my back...it has been YEARS since I have been able to sleep on my back OR my left side. Funny, it easy now, and I can breathe!!

Take care and best of luck with your surgery!

 

[Lorimacm]

It is so helpful to me to hear everyone's story. I am still waiting for a surgery date, anxiously waiting AVR. I do have symptoms but nothing to the magnitude that most of you had. I do not have permanent damage at this point and hope I will not by the time we schedule surgery. My docs just want to wait because I am 44 and do not want the risk of surgery to be greater than the valve problem. I am not sure waiting too long is such a good thing - stenosis is rapidly increasing.

Thank you all for sharing.

And thanks "Jkm7" for asking the question!

 

[Jkm7]

Lorimacm.....

I'm happy this thread has been helpful for you.
Just a suggestion you may wish to think about but others have gotten the same advice to wait longer because of their young age. While you are young by comparison to some,there are many who have had their surgeries at your age and younger.

Cardios tend to urge patients to wait while surgeons are more apt to say why wait for damage to your heart.

If you have not yet consulted a surgeon, you might think about doing so. More than one cardio has waited longer than perhaps they should.

NOT to say that is so in your case. Of course, no way for us to know that but it is your heart and you may feel more secure to have a surgeon's opinion.

Sending you the very best wishes.

 

[jax]

lorimacm.

i am 35 as of last friday. last april i went to the doc with shortness of breath, dizziness all of the fun stuff that comes along with a faulty valve. i ended up going to cleveland clinic to get a better idea of what was needed. it ended up that i needed my mitral valve replaced and while i was very nervous i did not want to wait until there was any damage done. so like jmk7 just said you may want to consult a surgeon and get this fixed before it damages your heart. besides with you being younger you will most likely bounce back quicker than you would once you start getting older. i was back to work 9 weeks after my surgery and not to say that i haven't had any difficulties which i have. they had to put a pacemaker in a week after surgery and the heat at work gets to me, i could only imagine what i would feeling like now had i not gotten the surgery. the surgeon did a mini-invasive procedure going through the sternum and had said the scarring was very bad. so for your health please consider seeing a surgeon. you would not want to do damage to your heart and start suffering severe symptoms of heart failure.

 

[Karlynn]

Lorimacm.....

I'm happy this thread has been helpful for you.
Just a suggestion you may wish to think about but others have gotten the same advice to wait longer because of their young age. While you are young by comparison to some,there are many who have had their surgeries at your age and younger.

Cardios tend to urge patients to wait while surgeons are more apt to say why wait for damage to your heart.

If you have not yet consulted a surgeon, you might think about doing so. More than one cardio has waited longer than perhaps they should.

NOT to say that is so in your case. Of course, no way for us to know that but it is your heart and you may feel more secure to have a surgeon's opinion.

Sending you the very best wishes.

I concur. Consult a surgeon and get their opinion. Surgeons are more proactive in wanting to get the valve taken care of before damage is done. Cardios tend to be more cautious. At 44, not knowing any of your other health aspects, your risk of surgery is not going to get any less and 1st valve surgeries have a very small mortality risk. Unless there is something complicated that must be done with you, I'm not quite understanding our doctor's position. That being said, I'm not familiar with aortic valve measurements for surgery. But, as a member once said here "If surgery is the only thing that will fix it, then consult a surgeon."

 

[Gail in Ca]

Better than ever

Better than ever

Now that I am recovered from my 3rd AVR and MV repair, I know that I had symptoms for many years when my MV was leaking mod-severe.
I just never realized having it repaired would make such a difference in my activity level. It wasn't repaired during my 2nd AVR because I was too sick to stay on the table for 12 hr then. So, I just lived my life for 9 yrs with a leaky valve. When I hiked, or just walking, especially uphill, I always had tightness in my chest. But, my cardio and surgeon were just waiting for my left ventricle to enlarge due to MV leakage, and it was just getting to the high end of normal when I got endocarditis, and hence, my 3rd surgery to fix everything.
Now, when I walk, hike, etc, even uphill, my heart feels great! I get no more tightness, pain, or just plain tired too fast. Now, it's my quads that are killing me from lack of use, ugh!
Dr Miller did tell me before my surgery that I would feel better than I had in years and he was so right!
Gail