Quandry - 2nd surgery coming????

[Mb]

Hello everyone:

I will give the shortest version I can. My husband could be facing his second heart surgery, valve related.

My husband had rheumatic fever as a teenager. In 2001, he had dual valves implanted, St. Jude's. Post surgery, he just did not do as well as we had hoped, and the cardio ordered an echo, four months out.

He has a severely leaking tricuspid valve, which has been managed very well so far with medications. He is in chronic a-fib.

In April/May, he began having long periods of bradycardia. (couple hours) Holter monitor showed 27 pauses over 2 seconds, rythm was a-fib, mean HR was 73, and highest HR was 158 (not excercising). His cardio, elpectrophysciologist, and now his surgeon all agree he needs a pacemaker.

He has NOT fallen down, or had a complete black out episode of syncope.

They cannot implant a lead through the tricuspid valve, as it would aggravate the already severely leaking valve.

His left ventricle cavity size is normal, His right and left atria, as well as the right ventricle, are enlarged.

They electro guy suggested placing the lead through the coronary sinus vein.

Now the surgeon is saying, repair the tricuspid valve with a ring, and then three or four days later, implant the lead through the tightened valve, a standard implant.

This surgery is through the sternum, and although not as difficult as the dual valve replacement, it is still a surgery that is done only 5 or 6 times a year by this Dr. at a leading hospital. They also do not know why his valve is leaking so badly.......they do not think it is the result of PH, as his pressures are not highly elevated, nor do they think the valve is damaged by the rheumatic fever.

Two of the doctors have said they do not think it will make him feel any better than he does now.

Frankly, we are very confused, and of course, concerned. Can anyone here share information that might be of some value?

Thank you all, again, for your help.

Marybeth

 

[Nancy]

Marybeth-

I can feel the angst over this whole situation. Wayne has been battling with this for a long time. His doctors say that it might not make him feel better. I would concentrate on the "might" aspect of what they said.

And even though it "might" not make him feel any better, would it extend his life? That is the most important question.

As you know, Joe has a similar problem with the severely leaking tricuspid. He already has a pacemaker lead going through there. His pacemaker needs to be replaced soon. Maybe at that time they will review the tricuspid problem. His surgeon has already suggested that it needs to be fixed.

These are such difficult decisions to make.

God Bless.

 

[Mb]

Dear Nancy:

Well, from what I understand, the danger is in the bradycardia, not in the progression of the right side heart failure. And, of course, there are really no answers forthcoming from the doctors when asked these questions.

Not sure if other folks have these problems, getting "stats" from doctors.

His cardio did not think he was in danger of "lethal bradycardia" some 8 weeks ago, so that makes this even more difficult.

Thank you for responding Nancy. There really are no clear cut answers.

Marybeth

 

[Nancy]

You know---

We are brought up to believe that doctors are some kind of gods, with all the answers. But they are not, they are ordinary people with an interest in helping others in the medicine field.

When faced with a patient with multiple medical problems and things that could go wrong no matter what you try to do, they can draw blanks.

We are seeing more and more blank expressions as Joe goes down his very winding road. It's hard to deal with. I think he has outlived what anyone thought. When your doctor is stumped and can't answer questions, then it really leaves you swinging. Some of Joe's docs have literally thrown up their hands in frustration because they want to help, but the answers just aren't there, or they are there and what they want to do will cause additional problems.

Marybeth--I just don't know. I think you have to make the best decision based on all the facts at hand, and working with a doctor you have faith in, in the hopes that it will give Wayne a better quality of life and extend his life, and take away the immediate danger.

 

[sylviayasgur]

hi nancy and marybeth,
marybeth, i'm so sorry about all this. i know you and wayne have been dealing with this and more for some time now.

nancy, i hope you'll keep us informed when joe does have his pacemaker replaced.

i am looking into this now for my dad. he had his avr (st. jude's) done along with double bypass, 6-7 years ago. he is in chronic afib and takes coumadin.
when he went for his checkup about a month ago, his cardio told him that his mitral valve was leaking (a little more than moderately) and that he should have it replaced this fall (within 6 months).
he went to his cardio yesterday and now hears that his tricuspid needs replacement as well.he said that this is the reason his hematoma is not dissolving completely (as a result of the tricuspid leak). does this sound right to anyone?
he has a consult with dr. colvin in nyc at nyu med to look into the minimally invasive surgery (originally for the mitral only), but now i think he will be told that he is not a candidate for it.

his cardio wants him to have the surgery done by his original surgeon (dr. damus at st. francis heart hospital on long island, ny), but i'd like him to consult with the cleveland clinic (dr. cosgrove?_ maybe they can be repaired instead of replaced?)

i need to search the site for more info on this since he refuses to go on.


marybeth,
would you consider another opinion or do you just love this doctor as many of us tend to do (love our doctors)?
in the meantime, i hope all remains stable with with wayne. please keep us posted.

wishing you all the best,
sylvia