getting really frightened

[Nan]

Hi everyone, well, I have an appointment with a surgeon on Friday the 12th. My cardio has been trying to get me to go for about 6 months. He says the mitral valve is at the point where it needs to be fixed before it does damage to my heart. And while they are in there, he feels they should probably replace the aortic St. Judes which is too small for me. Not to mention that I seem to have acquired some blockages.

Yikes I looked up some stats on re-operations, double valve operations along wth bypass. They do not seem to be as good as just an isolated valve replacement or repair. They range from 8 to 24% mortality. If I am understanding what I am reading.

If I didn't feel so badly, I wouldn't even go, but I don't feel very well at all. Very tired all the time and have some angina and SOB. Don't know if it is from the valves or from the CAD.

One day at a time at this point.

Thanks for listening!

 

[Ross]

Nan I can sympathize with what you feel, but given the circumstances, don't read the stupid mortality percentages. One certain thing, if you don't get fixed death is 100% certain. It's to a point where you have to turn the worry over to a higher power and just do it. What can worrying do to change it?

 

[Georgia]

Nan, cardios are generally a lot more conservative regarding surgery than surgeons; if your cardio says it's time, it's time. He/she obviously feels that not having surgery is more life-threatening than having it.

Delaying this decision will put you in the situation where your heart may be permanently damaged, and will increase your odds of a poor result.

We all know what it's like to have to take this step; and having to do it a second time is undoubtedly harder. We're all with you in spirit; good luck at the surgeon on Friday.

 

[Nancy]

Oh, Nan, I am so sorry that you are facing all this surgical work. Are you going to St. Peter's? They have such a great rep. You will be in very good hands.

 

[Marguerite53]

Nan. Just wanting to send you some encouragement. It must be rough to have to face a second surgery, especially since you'd probably hoped you were finished with the first mechanical replacement 7 years ago. Now that I've been through a "very boring" AVR (3 weeks ago) I don't even want anyone coming near me with a needle, let along imagine another surgery very soon. It is NOT something to look forward to.

But I think you will feel so much better! Don't you want to reclaim your life? Don't you want that energy, that zest to return to your day to day? I agree that you should not fixate on the statistics, but rather turn to your own successful experience the first time around (you succeeded, it's the valve that sounds like it is to blame) and bank on that. I firmly believe that with luck on your side, optimism will carry you through. So start insisting on luck!! Work to make it so!!

But come here for support and encouragement any time!!

Marguerite

 

[Barbara Stewart]

Getting really frightened

Getting really frightened

Hi Nan,

You have my sympathy. I had to go through a second surgery 8 months after the first one and I was scared to death. Yes, I was told the second surgery had a higher risk of death, but I didn't really have a choice. I couldn't not do it since I would become an invalid and that is NOT an option. The second one went much better than the first and I'm feeling better and better. I had a really rough time with my first so it is taking a little longer for me to get my strength back, but it is coming back.

Get thee to a doctor pronto and keep in touch.

Barbara

 

[Phyllis]

Sending you our best wishes and hope you can find courgage and hope in Barbara's post. We hope you have the same good experience the second time around.

 

[MikeHeim]

Ross has it correct when he said that the mortality rate if you don't get the issues fixed is 100%. As far as surgical mortality, the surgeon will certainly cover this when you see him. Everyone's situation is different, which is why I don't like looking for these types of numbers on the internet. Your surgeon will know your situation exactly and can give you his feelings. I wish you all the best going forward.

 

[Ross]

Ross has it correct when he said that the mortality rate if you don't get the issues fixed is 100%. As far as surgical mortality, the surgeon will certainly cover this when you see him. Everyone's situation is different, which is why I don't like looking for these types of numbers on the internet. Your surgeon will know your situation exactly and can give you his feelings. I wish you all the best going forward.

Really the percentages are told to you to give you some piece of mind. For my first surgery, I was told I only had a 5% chance of surviving. I was already well on my way to death, so 5% was better then 100% if doing nothing. I did! For my second, I was told 50/50 and I survived it too. Percentages of mortality mean very little other then for your own knowledge.

 

[Der Biermeister]

I also think these mortality rates cover the whole spectrum across the whole world -- so you are lumping in there:

very old and frail people,

VERY sick people,

and a whole lot of NOT SO GOOD surgeons

To mitigate the risk, you simply go find yourself a top-notch doc, and put your mind at rest. Plus you prepare your body ahead of time by getting yourself in as good a shape as you can.

Suddenly the odds go heavily in your favor.

Quit worrying Nan, and "get r done". You are going to be just fine!
We've go a whole lot of people here that will guarantee it!

 

[eddiec]

Nan - I just recently underwent double valve replacement -aortic and mitral. I did not know I needed the second until the surgery was underway so I was not told the stats of two replacements. However, I do know that Der Beermeister is right, the stats you heard included individuals who are quite old or have some other disease that led to complicatons. If you are in good health the percentages go down. Good Luck and best wishes.

 

[Superbob]

Nan,

I just want to second and third the wise things that have been said here. There's an old saying, "Beware the statistician who drowned in water that averaged three feet in depth." (I think that's how it goes.) The point is that statistics often can be very misleading. I would concentrate on getting a top-quality surgeon and improving your quality of life.

It is certainly understandable, though, that you are frightened. Aren't we all from time to time when we consider our mortal frailties. But we just have to forge ahead. All best thoughts going your way....

Bob

 

[Mary]

Good thoughts are coming your way, Nan.
Try to stay positive, and we'll be here to see you through it.
Mary

 

[Mb]

Nan:

Sobering news, true. But, there are many on this site who have had more than one surgery performed. I am confident your Dr. will have much better odds for you. Breathe. - Marybeth

 

[Nan]

Thank you one and all for your kindness in your responses. Your levelheaded responses are encouraging. And Ross, you are certainly right about the 100% result without surgery!

I am seeing a top notch surgeon, Dr. Len Girardi at NY Presbyterian Weill Cornell. So we'll see what he has to say.

I think, however, that I am going to take some Ativan before going! Change that to lots of Ativan!

Thanks again. You are a great bunch of folks.

 

[tobagotwo]

You have to look carefully at the dates involved and the criteria involved when trying to assess information from the net. If the data is ten years old, it's already out of date, as surgical technique has advanced so swiftly in this field. Also, what was the field of paticipants? What heart class were they in, where was the surgery done, etc? Not that the odds you found are terrible anyway, but a good surgeon could cut the odds dramatically, as can getting it done before damage sets in.

You are stuck with this, as you know from your previous surgery. You can worry about it now in one big lump, or wait (and go through the worrying part for even longer) and then have a less successful result, one that may make it so that you have to deal with and worry about your heart on a daily basis from then on. Not a good trade.

Get fixed up, so you can enjoy your time here, and you and those around you can worry less about you. We'll be rootin' for you.

Best wishes,

 

[Ross]

Thank you one and all for your kindness in your responses. Your levelheaded responses are encouraging. And Ross, you are certainly right about the 100% result without surgery!

I am seeing a top notch surgeon, Dr. Len Girardi at NY Presbyterian Weill Cornell. So we'll see what he has to say.

I think, however, that I am going to take some Ativan before going! Change that to lots of Ativan!

Thanks again. You are a great bunch of folks.

There ya go. Find the best possible surgeon and the best possible facility and then let the magic work.

If you need Ativan. By God ask for it. You will never here me say that that's a bad idea.

 

[maka]

Nan

Yes, you are definitely in good hands. Dr. Girardi has a very good reputation. I also had my mitral valve repaired at the NY Presbyterian. I choose Dr. Kriieger although I debated whether to choose Dr. Girardi. My Cardio recommended Dr. Girardi and my oncologist recommended Dr. Krieger as he thought he had more experience. Either one is a great choice. Both listed among the best 100 surgeons.
As to statistics, yes they give valuable information, but they include different situations, hospitals and surgeons. You will be at the hands of a top surgeon and one of the best hospitals.
Good luck to you

 

[evelyn2]

new to this site

new to this site

Hello Nan
I found this site last June right before my surgery. I have had problems since my surgery and many questions to my cardio. The answers I get are generalized and I usually feel my concerns are brushed aside.

You mentioned that you were considering surgery again, that your St. Jude's valve was too small. How did you find out that the valve was too small?

Thank you for any help you can give. This site is very helpful, and you all seem to care about each other.

 

[Nan]

Hi Evelyn, Sorry to hear that you are continuing to have difficulties after your surgery.

I think that you would know by now if your valve was too small for you. I knew mine was too small from the beginning. They couldn't fit a larger one in, even though a root enlargement was donel The surgeon didn't feel that I would survive at that point if he did a root replacement, so did the best he could.

You should have a card that tells you what size your valve is (mechanical, right?). Mine is a size 17 which is the smallest made.

Whenever I have an echo they can tell it is too small as the gradient over the valve is too high. It has probably impacted on the worsening of my mitral valve as well.

What kinds of problems are you having? And what does your cardio and or surgeon have to say about it?

Keep on looking for answers.

Take care.