One valve for life?

[maxximom]

Hi Jim..Isn't it a small world I have no idea why Dr Warner left Duke..They usually don't publishs the reasons in the local newspaper..and since his name hasn't showed up.. I imagine that he didn't commit murder or robbed a patient ..or worse
I use the group that he practiced with as my Cardios and they are all specialists in Valve problems in particular..Alicia and Betty I believe also went to the same group. Dr Warner was Martha 's Cardio until he left and then she used another Cardio in the group. I have never met Dr Warner that I recall.. when I had my surgery there were so many doctors that came in and out of the room,Post Op..that never introduced themselves or I was so "out Of it" that I don't recall. I do know that Martha was very fond of him and found him very responsive to her needs and was very unhappy when he left. You are in good hands I am sure.
Wishing you much luck !
Joan
AVR, triple by pass, St Judes Toronto stentless Porcine Valve, Sept.25 2001, Duke University Med Center, Dr. Donald Glower

 

[Ross]

You aren't going to want to hear this, but if your enlarged enough now, I wouldn't be putting this off any longer. Your messing with fire here. Don't wait until the damage is done to get fixed. Did the Doc give you a time frame? When mine got that bad he told me 1 month yes, 2 months, maybe but........

 

[tommy]

Jim,

Hello fellow North Texan!

Frankly, I was a bit surprised by the comment about all valves needing to be replaced eventually. Perhaps that's the surgeon's style, to paint pictures dark. Pehaps more is known now that valve patients are living longer.

I decided on the mechanical valve with the understanding that barring some mishap, the surgery would be my last (no guarantees, of course).

Coumadin gets a lot of attention in the decision process because of bleeding. Keep in mind that a subset of bleeding is bruising. I've gotten some nasty bruises from baseballs and yard work. Lifestyle considerations are important.

For what it's worth, my top considerations for AVR surgery in our area were Drs. Mack, Acuff, Ryan, and Bowman. Ryan seems to specialize in Ross procedures. They are all in the same group.

In pre-op discussion, my surgeon, Dr. Mack made the comment that tissue valves last longer when he installs them. Ya gotta love a surgeon with confidence.

One piece of advice that a friend gave me was to choose the combination of the surgeon and the hospital. Some surgeons have priviledges at multiple locations. Teamwork is important.

My cardiologist's advice was to do the research, make the best decision possible, and don't look back.

Good luck to you. Keep us posted.

 

[rcatalano]

Jim,

Wow! Double whammy! I can imagine what you you're feeling right now.

When I saw what your cardiologist said about the Ross, my first thought was, well, let the surgeon operate and let the cardio do the follow up. My cardio, while recommending a mechanical, pretty much left it up to me and the surgeon.

However, I see your cardio is a valve specialist, makes it kind of hard to ignore his advice. It's a tough call.

In the final analysis, you'll do whats right for you and your family and you'll come out a winner. Go ahead and schedule the surgery, even if you haven't decided on the procedure.

Maybe you can get the surgeon and cardiologist to talk about your specific case and see if they can agree on whats best for you?

Good Luck!

 

[Andrea]

Hmmm certain foods affect coumadin ? Uhh I think I may need a new doc because I was just told to take the stuff, get my blood checked every now and then and to try not to bleed too much.



Think I'll go check out the site that Ross posted now lol.

 

[Granbonny]

Jim

Jim

I know you wanted to wait until after the Holidays for your AVR.. but you mentioned..I have a wicked cough and congested.. Is mid-Nov. the earliest you can have it done? I'm like Ross. see if you can get it done as soon as possible. By now, I'm sure you have read all the pre and post threads to get ready..and found someone to look after your rental property.. Do you have other family living nearby to give your wife a break? She has her hands full with a newborn.. You will need someone the first week at home around the clock..to help with meds, bathroom, ect. Get that recliner..hard sleeping in bed for a few weeks. Let us know when you have a date set..And stay off that bike. Plenty of time to ride after surgery..May take a year to catch up with the other guys. but your health comes first. Bonnie

 

[bvdr]

Jim,

Maxximom is right. Dr. Warner was in the group of cardios that I went to at Duke. When I researched them I had found quite a bit on the Duke site about his specialties and interests but it might have been updated by now. The group he was with probably saw some of the most complicated valve problems anywhere. They get many patients that other doctors don't even want to touch. I never saw him personally but I would feel confident in the experience he has had.

I just don't think you can really make a bad decision here. You will have to trust your surgeon to over-rule you for your benefit though once he gets inside and really eyeballs the situation. You will be so relieved once you have this mountain in your rear view mirror!

 

[chilihead]

I'm just too busy to have this thing slow me down right now. I'm heading to Seattle on Saturday for a week on business and really don't have an open time slot until Mid November. I'm hoping to get a bike ride in today. Maybe one of my last for a while.

Dr. Warner is sure against the Ross. I keep waiting for some doctor to say, "Man, you're the perfect Ross candidate". That has not happened yet. I believe Dr. Ryan is a good man for the Ross. But, Warner has scared me again and making me rethink it all.

I have the recliner and have "practiced" sleepin in it for a few years.

I'll catch up with you guys next Friday, unless I can get a laptop to take on my trip.

Regards,

Jim Johnson
6.3 that's too big!!!!!!!!!!

 

[scottvant]

On not waiting...

On not waiting...

Chilihead--

I'm not sure "too busy to let this thing slow me down right now" is a wise way to look at this situation. What damage to your heart happens in the next few weeks may take years to reverse. That's what my cardio told me.

Now, my situation is different than yours--you've obviously been watching this for awhile--and I can't remember now if you said your aortic insufficiency is because of stenosis or regurg--but: I never had a "heart condition" before last fall. No audible murmurs or any signs of my BAV, *ever.* Then it got infected, I got sick, my heart enlarged, and I had the valve fixed--all in under six weeks. At the time of my first-ever echo, (ordered because one doctor asked, "how long have you had this heart murmur?" and I said, "I don't have a heart murmur" and he said, "you do now--a big one") my AI was 4+, all regurg. Valve pretty much eaten away by the infection.

Before my heart ordeal, I was in excellent shape and my resting heart rate was ~65 BPM. After surgery, those first few anxious weeks, resting heart rate was +100 consistently. Not because of anxiety, but due entirely to some not-insignificant LVH and enlarged LV (as well as "diminished heart function"--my EF at last echo was calculated at 40-45) all of which developed in those six weeks I was sick.

I am now on beta-blockers, and still my resting pulse rarely dips below 78-82. And probably will be for the foreseeable future--cardio is not entirely certain that these conditions will reverse completely--but he's hopeful.

In any case, if I had had the luxury of a lot of foresight, I would have had this thing replaced at the first sign of trouble--granted I probably developed my significant valve leak much much faster than your condition is progressing, but--if your doctor is saying your heart is already enlarged, that says (to me) that you've already got a "condition" that will need to be regressed after your valve is fixed.

I'm sensitive to this because it appears that my Ross went textbook-smooth. In spite of my best efforts to be a complete hypochondriac at first and insist that the whole thing was going to go south at any moment, I keep getting told by my doctors that things could not possibly have gone better--both valves, the autograft and the new homograft are functioning perfectly.

Which means I'm left with residual "heart conditions" that developed in under two months as my valve started to leak. If I had had a clue I had heart trouble and that my "feeling unwell" was actually a raging endocarditis infection, I'd have been in the hospital faster than you could say "I DON'T WANT TO BE ON BETA BLOCKERS FOR THE NEXT 10 YEARS."

Because I wouldn't be, if I had caught it.

YMMV, of course. And not to add to your already confusing array of stressors, I'm just telling you my experience. If a doctor had just told me, "your heart is already enlarged," I wouldn't be walking to the car tapping thorugh my palmpilot looking for an opportune date and putting off my surgery until it was convenient--if you've got business trips through october, then suddenly it's november and there are of course the holidays, with every reason you might feel like waiting until after the first of the year, blah blah blah. I didn't have the luxury of waiting, myself. It was do or die. And guess what--what was important, waited for me to recover--and what wasn't disappeared.

IMHO this isn't really something that should be made to wait. But like I said--your condition is probably not progressing as fast as mine did but you DID say you have an enlarged heart. I'm just sayin'.

Scott, who hasn't posted in awhile cos I took a break from being "Scott, the heart patient" to forget about all of this for awhile...

 

[ALCapshaw2]

WELL SAID Scotty !

If your story doesn't get the attention of people who have been told their heart has enlarged, nothing will. I wish I had known and understood that significance before postponing my surgery.

'AL'

 

[Granbonny]

Jim

Jim

Hope we hear from you next Friday. Please post your home phone to someone on Vr. We have lost contact with 2 members. Lettitia..who had her surgery months ago. and Nicole who was airlifted out last night. to unknown hospital. Ross and I get very nervous when we can not hear from our members. bonnie

 

[maxximom]

If someone will send me Nicole's last name I will be happy to check at Duke and the 2 other hospitals here in Raleigh that she couold be at.
Joan

 

[tommy]

Hey Neighbor

Hey Neighbor

Jim,

I'll be thinking of you this week. I'm sorry that this is so confusing. Decisions, decisions, decisions. Sounds like you are doing lots of good homework.

My best suggestion is that you keep the process moving quickly as your highest priority.

Please let me know if I can help in any way. Allen is just a jog up the road from anywhere in the Metroplex.

 

[chilihead]

Many Thanks to all. I am in Seattle on business and jsut got in. It's 2:30 AM and I'm finally checking 291 emails! I'm going back to Dallas tomorrow and have another appt witha heart surgeon on Friday morning. To Ross or not, that is the question!!!!!!!!

Regards,

Jim

 

[JensenJoe]

Dear Jim,

I don't know much about the different valves, but I can tell you about my Aunt who had a stainless steel ball (mechanical) valve replacement more than 35 years ago. She never needed another operation to replace the first one, and she passed away with that original valve still clicking away. Like I said she did pass away few years ago, but not from that valve, and as a matter of fact when she died the Doctor said the heart and valve was still in great shape.

If it was my dicision it would be the mechanical valve.

Good Luck,
joe

 

[Nancy]

Hello jensenjoe-

Welcome to the site.

My husband, also Joe, has one of those big ole cage and ball aortic valves. It's going on 25 years. They don't build 'em like they used to, LOL.

 

[MikeB]

I was also told by my surgeon that the mechanical valve will not have to replaced?

 

[Karlynn]

Thanks for the story Joe! It does my little mechanical valve heart good to hear those success stories. Welcome to our wonderful forum.

Karlynn

 

[sylviayasgur]

hi jim!
i haven't been on in a few days.... sorry to hear that you are having a difficult time making a final valve decision... that is just about the hardest part of this whole thing. once you've made your choice everything seems to fall into place and move along (except the waiting_ that is also hard).
have you metioned to your surgeon that your cardio is not very pro- ross? how does he feel about all this?
either way, you will win. it's obviously time for a new valve, no matter which you decide on.
please try and get rid of that congestion if you haven't already. take care of yourself so that you can go into this surgery strong and healthy (no colds, that is).
please let us know how it went at the doctor's today.
all the best, sylvia

 

[chilihead]

Sylvia,

I saw a Dr. Jessen today and he was very open to all procedures. I think after an hour of discussion, I came away feeling that his opinion was that I should go with a mechanical or a Ross. He wasn't very thrilled about the pig, stentless or not. So, I'm planning on mid November, but haven't made a final decision. I'd love to be one of those Ross success stories!

Have a good weekend, I'm off to happy hour!

Jim