What would you do?

[geckley]

I have my pre op work up in the morning at Hopkins. They sent me all of the consent forms and permission slips yada yada yada. On the consent form they of courese ask for the consent for all options. So they put down replacing 3 valves instead of replacing 2 and repairing 1 and aortic root. The docs have put everything in my lap about valve selection and almost everything else. So my question to my new friends is what would you do? I am inclined to tell them to go for it all and replace all 3 valves. Why not, they are in there any way. I really don't want to go through this ever again. Besides if I exercise and get my heart rate up I would sound like a bicycle with cards in the spokes. Your input would be greatly appreciated. 7 days and counting.

 

[Nancy]

Maybe I missed some of your other posts, but just how bad are your valves and which ones are in need of replacing?

 

[geckley]

My mitral is the worst and it has passed severe regurge a while ago. I show know sign of it though. My aorta is enlarged and the valve is showing signs of regurge, and my tricuspid valve is bi cuspid and is from what they think is it will need to be addressed in the near future. Since this is my 3rd OHS and I'm 38 they don't want to go back in again. And the doctors and I agree that I'm in the best health I've been in years. When I had my repair done 3 years ago I had only quit smoking for 3 months and I was 70lbs heavier. They feel this is the time to pull the trigger so to speak.

 

[dick0236]

I think the operative phrase is "consent for ALL options". Maybe, after they get in there, they can repair one and replace two. But if the "one" isn't repairable, they have your permisssion to replace it.

I wonder if you will sound like a "card in bicycle spokes" . Probably not, but the picture in my mind is funny.

Good luck.....and God speed.

 

[geckley]

The mitral is a gonner. The aortic gets replaced because of the root replacement. The only question is the tri cuspid valve. The plan is to repair it but the replacement will be there. I just feel just replace it cos this waiting thing and the unknowing his really screwing up my head. I don't want to go through this again.

 

[Bina]

Wow. We have several double valvers, but I have no knowledge about triples.
I have an aquaitance who has 2 mechs and after 17 yrs he had to have a re-op for stitching reasons. We just never know.

 

[Nancy]

OK, let me tell you about Joe's valves. He had an aortic and mitral mechanical, different operations, then had to have a repair for a cuff leak in the mitral. So that made three heart valve surgeries.

A year or so later his tricuspid began acting up and an enlarged root started to show up in echoes and caths, but his health had started to deteriorate in many ways. When it became apparent that a fourth surgery was needed, no surgeon would do it. His health had become fragile.

So maybe that will help you with a decision.

 

[Read]

DDR cameron will do what is best for you.. Good luck with it all !!

 

[ALCapshaw2]

It sounds like the Surgeon / Hospital is already doing what we on VR.com recommend to most Valve Surgery Patients: Have a Plan B "just in case Plan A does not work or is not viable once they get in there".

SEVERAL members have come out of the O.R. with something other than what they were hopeing for following their interview with their surgeon.

Generally, the Surgeon will try to do what was requested, BUT if that fails, it is good to have an agreement on what to do next.

'AL Capshaw'

 

[dtread]

Whew, you're getting the full treatment.

The question seems to be whether to just replace the tricuspid or repair it. As you yourself experienced with your mitral sometimes repairs don't last that long. So, you'd probably get more peace of mind with replacing the tricuspid rather than repair. You might want to tell the surgeon your concerns and leave it up to him when he gets in there and assesses the situation, but indicate that your preference is probably for replacement, if there is a chance that a repair might not last that long. Tough call really.

However, I guess you probably would have a better chance of avoiding a reoperation altogether if you went for the replacement (vs. repair) option. If that is the gating factor then replacement would be the choice.

I want to wish you all the best for a successful surgery and recovery.

 

[Jkm7]

Such hard decisions we make.
I just want to wish you well with your pre-op tomorrow and, of course, with your surgery

Hope all goes smoothly and well and you have an easy, uneventful recovery.
Please let us know what you decide and how you are doing.

Godspeed.

 

[Eva]

Wao! another decision you have to make. In my case, my surgeon told me before surgery he was definitely replacing my aortic valve but would decided whether to replace or repair my mitral valve once he was there! I consented to that, and I am glad both were replaced--one surgery, one recovery, same coumadin treatment, hoping no more surgeries.

Good luck and keep us posted.

 

[abbanabba]

Is there a chance the regurg through the tricuspid would resolve after the other two are replaced... and how bad is it? Also, are you able to have a mechanical in the tricuspid position? I thought like the pulmonary it wasn't a good candidate due to the lower pressures and higher clotting risk, so if you go a tissue valve, is there a chance it may have to be replaced again eventually? I don't really know a lot about these ones, so sorry for all the questions.

Meanwhile, I guess if you tick all the boxes it gives your surgeon the option to make the call on the day for whatever he feels is your best option. It may be one of these cases where once they can get in and have a look it will help decide exactly how bad things are and what the outcomes are for each option.

Good luck with your decision.


A : )

 

[zipper2]

Oh I just wanna wish you all the best with the preop

I feel for you when you say the waiting is hard and

the unknown........i'm with you and for my mitral gettin

replaced soon after the (WAIT) here is driving me insane

and with my aortic (16) year old mechanical my surgeon

says it's like new so he's not fixing something thats not broken.

At the same time though he claims it will be my second and last

surgery because of scar tissue,i won't be able to ever have another

surgery. It leaves abit of stress on the plate for upcoming uncertain

matters and how does anyone really know till they open you up and

see whats really going on. I'm with you on the wait and unknowning

my heads been rolling in this crap for a month more now and the waiting

is terrible and hard on family to boot got home 22nd of sept from tests

and no date yet as they suggested id have surgery by end of oct.we

are now in Nov.The emotional rollercoaster.

Good thoughts for your preop and prayers so you may get it all sorted

out soon and all the best for you and your family.....DEEP BREATHS

and the learning of patience while we are sick in my line up anyhow.

zipper2 (DEB)

 

[Cooker]

If it were me I would sign .... I do not think that they would do anything that did not need doing ... If it would prevent a future surgery that would be my choice .... If you trust your surgeons and cardio then I think I would do just that, trust them and go forward ....Godspeed.

 

[Karlynn]

I would definitely make it known to the surgeon that you don't want to be seeing him again for a tricuspid replacement. In other words - you'd like him to be pretty secure in the state of your tricuspid valve before he closes you up.

I like your sense of humor - it will serve you well in this process. Best wishes

 

[netmiff]

I think Cooker and Karlynn and have about summed it up, for me at any rate. In your position, I would be doing all I could to prevent future surgeries, at the same time realising there are no guarantees. At the same time, I don't think ANY surgeon would do more , or less, than has to be done.

Good luck whatever you decide.

 

[Marguerite53]

That's a lot to consider given you have no medical degree! I would surely trust my surgeon, Johns Hopkins is an amazing facility. A quick phone call to verify what he needs you to sign for the best outcome would be my action. Don't want him rummaging around for the paperwork while you're connected to the heart-lung machine! Anna (Abbanabba) makes some good points. Her points should be quickly discussed with your surgeon.

Try not to get too wrapped up in the details once you've made that call. Time to relax, smell the roses, pack the beauty of life and your loved ones in your suitcase and breathe deeply.

Wishing you the very best!!!

Marguerite

 

[ALCapshaw2]

Oh I just wanna wish you all the best with the preop

I feel for you when you say the waiting is hard and

the unknown........i'm with you and for my mitral gettin

replaced soon after the (WAIT) here is driving me insane

and with my aortic (16) year old mechanical my surgeon

says it's like new so he's not fixing something thats not broken.

At the same time though he claims it will be my second and last

surgery because of scar tissue,i won't be able to ever have another

surgery. It leaves abit of stress on the plate for upcoming uncertain

matters and how does anyone really know till they open you up and

see whats really going on. I'm with you on the wait and unknowning

my heads been rolling in this crap for a month more now and the waiting

is terrible and hard on family to boot got home 22nd of sept from tests

and no date yet as they suggested id have surgery by end of oct.we

are now in Nov.The emotional rollercoaster.

Good thoughts for your preop and prayers so you may get it all sorted

out soon and all the best for you and your family.....DEEP BREATHS

and the learning of patience while we are sick in my line up anyhow.

zipper2 (DEB)

Zipper -

When your surgeon says that you CANNOT have a 3rd surgery, I'm thinking he is speaking for HIMSELF.

We have several members who have had 3 Heart Surgeries and some with 4 or 5.

It takes a SKILLED and EXPERIENCED Surgeon to deal with the added Scar Tissue, but it can be done by those who Know How to do it.

Other approaches are also viable options, such as a Thoracotomy through the Ribs instead of going through the sternum.

IMO, all your surgeon did was tell you about HIS limitations.

That said, the risks do increase with each surgery and that is something to discuss with any future surgeon.

'AL Capshaw'

 

[Duff Man]

I would be a little weary of a repair vs. a replacement if you have a bicuspid aortic valve. There's not much data on the reliability of repairs for BAV patients. Our admin Ross had a repair but I can't remember how long it lasted him. I believe he would've picked mechanical replacement right away if he had known how it would turn out or had the ability to choose. Dr. McCarthy won't do BAV repairs anymore because of the potential premature failure of the repaired valve.

That being said, some surgeons will leave the valve intact and just resect the aorta above it with a graft. It's my understanding that this is only done when the original valve is in good shape.

I read alot of how the scar tissue obfuscates the surgical field but I haven't really read any studies to that effect. It seems to be accepted as fact here though.