Mom needs a valve replacement. Any experience?

[Plum Hill]

How would your mother feel about a tadpole trike (recumbent)?
People say they’re a blast and there’d be no balance issues if she tires.

My mother had two radical mastectomies in the late ‘70s. In 2003 she had a pig valve installed. Wish I had a good follow up, but we lost her a week and a half after surgery. Doctors couldn’t figure out what happened and, among other things, her kidneys shut down. I had to make the decision.
Looking back, her diagnostic cardiologist must have thought his middle name was God. It sure wasn’t.

I have a work cohort with heart problems. He trusts the Cleveland Clinic.
We have two renowned teaching hospitals in the area. I’m not sure that’s where I’d want to go.

Best of luck to you and your mother.

[fmradio516]

Originally Posted by Plum Hill

How would your mother feel about a tadpole trike (recumbent)?
People say they’re a blast and there’d be no balance issues if she tires.

My mother had two radical mastectomies in the late ‘70s. In 2003 she had a pig valve installed. Wish I had a good follow up, but we lost her a week and a half after surgery. Doctors couldn’t figure out what happened and, among other things, her kidneys shut down. I had to make the decision.
Looking back, her diagnostic cardiologist must have thought his middle name was God. It sure wasn’t.

I have a work cohort with heart problems. He trusts the Cleveland Clinic.
We have two renowned teaching hospitals in the area. I’m not sure that’s where I’d want to go.

Best of luck to you and your mother.

Wow im sorry the happened. That is rough.

I really want my mom to go to Cleveland or Mayo, but she wants to stay in NY. The hospital her doctors are currently at are at St Francis hospital and it got a 61% out of 100 rating, so that cant be good. im telling her to at least go to the city to NY Presbyterian. We'll see what happens.

She's also been walking every day now that I yelled at her about it. and today she is going to climb the stairs at the Fire Island lighthouse. Its hard with her fibro, but shes doing pretty good considering.

[slinkywizard]

Originally Posted by gasman

They can only do the less invasive procedure for the aortic valve . His Mom needs the Mitral valve replaced. Right now it's only possible to do with an open procedure-which is what

I happen to be almost done training as a cardiac surgeon. Here are my 2 cents:

Whereas it is true that transcatheter valve replacement is limited to the aortic valve, minimally-invasive mitral valve repair or replacement is the current state of the art, at least in Europe. Although it is certainly still an open heart operation, the preferable route of access is between the ribs from the right side of the chest. The heart-lung machine is connected in the groin. Our clinic (in the Netherlands) treats about 250 patients per year this way with excellent results. Recovery is faster than with traditional surgery where the chest is openend by splitting the chestbone. Although having undergone a mastectomy not necessarily excludes a patient from being operated this way, having undergone radiotherapy might rule out this type of access due to adhesions from the lungs to the wall of the chest. For leaking mitral valve, we succeed in repairing about 80% of valves doing a procedure called an annuloplasty. For a stenotic valve (valve doesn’t open sufficiently), which might be the case if the valve defect was caused by radiotherapy, replacement is usually the only option. Regarding the choice of the valve, we typically dissuade people below 70 years of age from choosing a tissue (porcine or bovine) valve and steer them towards a mechanical (carbon fibre and metal) valve. In our ecperience, the longeivity of mitral tissue valves in younger patients is quite poor, typically not more than 10 years.

Hope this helps



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[echelon_john]

I love this place.

FM, nothing to add but best wishes to your mother.

Originally Posted by slinkywizard

I happen to be almost done training as a cardiac surgeon. Here are my 2 cents:

Whereas it is true that transcatheter valve replacement is limited to the aortic valve, minimally-invasive mitral valve repair or replacement is the current state of the art, at least in Europe. Although it is certainly still an open heart operation, the preferable route of access is between the ribs from the right side of the chest. The heart-lung machine is connected in the groin. Our clinic (in the Netherlands) treats about 250 patients per year this way with excellent results. Recovery is faster than with traditional surgery where the chest is openend by splitting the chestbone. Although having undergone a mastectomy not necessarily excludes a patient from being operated this way, having undergone radiotherapy might rule out this type of access due to adhesions from the lungs to the wall of the chest. For leaking mitral valve, we succeed in repairing 80-90% of valve doing a procedure called an annuloplasty. For a stenotic (valve doesn’t open sufficiently), which might be the case if the valve defect was caused by radiotherapy, replacement is the only option. Regarding the choice of the valve,
We typically dissuade people below 70 years of age from choosing a tissue (porcine or bovine) valve and steer them towards a mechanical (carbon fibre and metal) valve. In our ecperience, the longeivity of mitral tissue valves is jn younger patients is quite poor, typically less than 10 years.

Hope this helps



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[fmradio516]

Originally Posted by slinkywizard

I happen to be almost done training as a cardiac surgeon. Here are my 2 cents:

Whereas it is true that transcatheter valve replacement is limited to the aortic valve, minimally-invasive mitral valve repair or replacement is the current state of the art, at least in Europe. Although it is certainly still an open heart operation, the preferable route of access is between the ribs from the right side of the chest. The heart-lung machine is connected in the groin. Our clinic (in the Netherlands) treats about 250 patients per year this way with excellent results. Recovery is faster than with traditional surgery where the chest is openend by splitting the chestbone. Although having undergone a mastectomy not necessarily excludes a patient from being operated this way, having undergone radiotherapy might rule out this type of access due to adhesions from the lungs to the wall of the chest. For leaking mitral valve, we succeed in repairing about 80% of valves doing a procedure called an annuloplasty. For a stenotic valve (valve doesn’t open sufficiently), which might be the case if the valve defect was caused by radiotherapy, replacement is usually the only option. Regarding the choice of the valve, we typically dissuade people below 70 years of age from choosing a tissue (porcine or bovine) valve and steer them towards a mechanical (carbon fibre and metal) valve. In our ecperience, the longeivity of mitral tissue valves in younger patients is quite poor, typically not more than 10 years.

Hope this helps



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WOW. This is SUCH good stuff. Maybe a trip to Europe is what she needs. I love all of this, but who knows what her doctors would say about it. Though, her doctor did say that they are going to discuss it to see if she can wait it out. Apparently in another year or so, this procedure will be much better/different here. Maybe they'll be doing something similar to Europe. Hope you dont mind but im gonna send you a PM.

[wallymann]

https://www.nytimes.com/2019/03/16/h...ent-heart.html

[slinkywizard]

Originally Posted by wallymann

https://www.nytimes.com/2019/03/16/h...ent-heart.html

Very informative article. Deals with trans-catheter aortic valve replacement (TAVR) though, not mitral valve replacement. Trans-catheter mitral replacement is only at an experimental stage at the moment.


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[buddybikes]

I hear these great institutions (Cleveland, Mayo, MGH...) but how, may I ask, can one actually go with our health care managed at the state level? Out of state approvals themselves could take months.

Good luck to your mom, medicine is an art as well as a science.

[oldpotatoe]

Originally Posted by gasman

Just have her walk. She doesn't need to do any more than that for fitness. Any weight lifting will just put more stress her left atrium.

Agree...walking is a great, all around daily exercise. 'Many' favor more rigorous stuff but a daily walking regime is far better than a 2-3 days a week, more vigorous exercise that results in soreness, weakness...

[fmradio516]

Update, my mom had a test today where they stick a camera down her throat to check on her heart. Her numbers were bad, all I know is "Leak and regurgitation is 4+", so it doesnt seem like she can wait very long to have the valve replaced. Unfortunate as it sounds like within the next year, the procedure will be much less invasive.


Good news is I got a recommendation from slinkywizard on a heart surgeon who is the Richard Sachs of this valve replacement surgery. And he's in NY! So my mom is trying to get in to see him.

[gasman]

That’s good news.
Hopefully it can be done minimally invasive route. Not every surgeon is adept at the approach. I worked with several cardiac surgeons over the years but only one who could really do the surgery well with good outcomes.

Hope your Mom can see the recvomended surgeon.

[wc1934]

Originally Posted by fmradio516

Update, my mom had a test today where they stick a camera down her throat to check on her heart. Her numbers were bad, all I know is "Leak and regurgitation is 4+", so it doesnt seem like she can wait very long to have the valve replaced. Unfortunate as it sounds like within the next year, the procedure will be much less invasive.


Good news is I got a recommendation from slinkywizard on a heart surgeon who is the Richard Sachs of this valve replacement surgery. And he's in NY! So my mom is trying to get in to see him.

Is it uncool of me to ask (for a friend) who that doc might be? Would you PM me if so?
Thanks - best wishes and full and speedy recovery for your Mom.

[fmradio516]

Originally Posted by wc1934

Is it uncool of me to ask (for a friend) who that doc might be? Would you PM me if so?
Thanks - best wishes and full and speedy recovery for your Mom.

Sure! Ill send you a PM

[bocarider]

I had aortic valve and root replacement surgery last year in January. I have posted a couple of items on this forum on my experience, recovery and tips about getting ready for and recovering from this surgery. I am way younger than your Mom (I'm 57). I did opt for a bovine valve as I do not want to take blood thinners the rest of my life. Search under my user name and you can see my posts.

Choice of surgeon is one of the most important components of this. I went to a guy with a national reputation and got great care, so I was fortunate. Do your research and be confident in who you choose to do the surgery.

It pretty much sucked, but a year later I am feeling back to normal and I am riding my bike regularly - not with the intensity I was earlier in my life, but enough to get fitness and enjoyment from it.

Feel free to send me a PM if you have any specific questions.

[slinkywizard]

Originally Posted by gasman

Hopefully it can be done minimally invasive route. Not every surgeon is adept at the approach. I worked with several cardiac surgeons over the years but only one who could really do the surgery well with good outcomes.

Yes, this is quite true. Minimally-invasive mitral surgery is not for everyone. This is why it is important to find someone who does many of them and who does it alomost exclusively. The surgeon I suggested talking to, performs 400+ mitral cases/year, most of which are done by a minimally-invasive approach




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