Mom needs a valve replacement. Any experience?

[fmradio516]

So my mom is only 58. In 2005 she was diagnosed with breast cancer, but after all her treatment, she was able to beat it. But since then, she has had nothing but problems. A few years after the chemo, she was diagnosed with congestive heart failure. She managed to recover a good amount from that.

She was ok until about 4-5 years ago when she was just experiencing tons of pain all the time. Went to tons of doctors and even the mayo clinic. They eventually settled on fibromyalgia. So she has been surviving on painkillers; though she takes the absolute minimum and is even down to taking less than what she used to.

Last month, she felt like she was really out of breath for a few days. Doctors found that there was a ton of water in her lungs. Her heart wasnt working properly. She has a badly leaking valve. She has been going to tons of tests since then, and then today she had her appointment with some supposedly really good heart surgeons.

At first, they said it might be possible to put a clip in place to stop the leaking, but since this afternoon, that changed. They apparently only use those for much older patients as they dont hold for very long.

She needs a pigs valve. Talking major open heart surgery. Her heart doctor said this morning that her heart is too weak for the surgery, but then the heart surgeon that she had the appointment with this afternoon said he can do it. The two doctors are gonna talk to each other about it and let us know.

My grandma(Moms mom) had this valve replacement when I was growing up and I just remember that since the surgery, she just had tons of problems with the valve leaking. She was in and out of the hospital for the rest of her life and it was terrible. By the end of things, she had 3 open heart surgeries. She really suffered.

I guess my question is that is this still an issue? My grandmas surgery was probably 20 years ago. Im assuming surgery has gotten better over the years?

Its a huge bummer as I was just scouring the internet to put together a flat bar road bike for her because she loves biking with me when I go visit her, but she hates her hybrid. doesnt sound like she'll be riding anytime soon.

[parris]

Sorry for your moms health trouble. I know 3 people that have had valves replaced. 2 of them came through it fine. One of my best friends has had issues ever since though. Given the questions your mom may want to explore a third opinion from a different group of doctors not associated with the first group.

Good luck.

[josephr]

my grandfather had two pig valves in the late 70s and both last longer than expected. He went in for his third valve in 1984 but unfortunately his heart kept springing leaks faster than the surgeon could repair....he died on the table at the age of 77. Thanks to those two pig valves, my grandfather lived 9 more years than without the replacement valve. He was still very active with the first one --- kept bees and processed his own honey, would help my aunts and uncles with their construction projects, etc. The second time around though he was starting to slow down a bit...but that wasn't due to the valve as it was overall heart health was declining, etc. His heart just couldn't pump like it used to as the cardiac muscle was just worn out.

That being said, without a good aortic valve in place, the heart can pump, the blood just isn't going and that's why your mom's fluids are backing up in her lungs. They've done a lot of lot of work with pig valves and now they take them from the younger pigs and they're getting 10-15 years out of a valve which is a far cry from the 4-6 they were getting back in the early days. The advantage to a pig-valve over a mechanical valve is that the a mechanical valve requires the use of an anti-coagulant, which increases bleeding risks---which would be particularly serious problem if her heart is already leaky. Sounds like a pig valve might be her only option at this point???

Either way...your mom sounds like she's been thru a helluva lot. If she decides to not go forward with it, then maybe she's just tired of it all and ready to be done with it. And that's OK too. Let her know you love her either way!

[2LeftCleats]

Hard to make more than broad statements without knowing a lot more about her situation. You didn't say which valve but I wonder if you're talking about the mitral. If it's a bad aortic valve, and she's not a good enough risk for open heart surgery, then the transcatheter approach works well for many and doesn't require an open procedure. For the mitral, sometimes a repair can be done and leave the original in place. If not then either pig or mechanical. Things are a lot better than 15-20 years ago, but an open procedure is still a big deal, with risk that varies with the individual.

[Blown Reek]

If the doctor gives you a choice, I'd go presta in lieu of schraeder.

[fmradio516]

Hard to make more than broad statements without knowing a lot more about her situation. You didn't say which valve but I wonder if you're talking about the mitral. If it's a bad aortic valve, and she's not a good enough risk for open heart surgery, then the transcatheter approach works well for many and doesn't require an open procedure. For the mitral, sometimes a repair can be done and leave the original in place. If not then either pig or mechanical. Things are a lot better than 15-20 years ago, but an open procedure is still a big deal, with risk that varies with the individual.

I just asked and yes it is the mitral valve. I dont think she has the option for mechanical, so its definitely going to be a pig valve.

This is just really hard for us because we went through this with my grandma, and my moms too young to be going down that road..



If the doctor gives you a choice, I'd go presta in lieu of schraeder.

thats rude

[thwart]

... thats rude

There is something to be said for consistency.

Getting back to the topic, I'd agree with the opinion above about perhaps seeking a '3rd' opinion, if time allows. Ideally from a cardiologist.

Surgeons love to operate and occasionally have been known to overestimate their skills and their chances of success.

[ultraman6970]

When i read the topic this was the 1st thing i thought.... then I realize was a heart thing....

Hope the ops mom gets better soon.

If the doctor gives you a choice, I'd go presta in lieu of schraeder.

[ntb1001]

If the doctor gives you a choice, I'd go presta in lieu of schraeder.



Sometimes humour helps in a serious situation...other times it’s just rude and inappropriate.


Hope everything goes well.





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[zmudshark]

I have two friends who got pig valves at about that age, both are fine 6-8 years out at this point.

Other than that, listen to thwart.

[Buzz]

My mother had successful valve replacement surgery at the Cleveland Clinic four years ago at age 90. Her physicians in Florida said no way. Physician at Cleveland Clinic said they routinely perform the surgery on older patients ...however there were a number of steps and tests to be passed before they were convinced it was safe to proceed.

She actually had a very quick and uneventful recovery all things considered.

Good health to your mom!

[gasman]

My mother had successful valve replacement surgery at the Cleveland Clinic four years ago at age 90. Her physicians in Florida said no way. Physician at Cleveland Clinic said they routinely perform the surgery on older patients ...however there were a number of steps and tests to be passed before they were convinced it was safe to proceed.

!

This is a key point.

1. She needs a thorough evaluation of not only her cardiac function but her lungs, kidneys .etc.

2. A pig valve would probably be best as she won't have to deal with lifelong anti-coagulation (blood thinning ). That decision can be made later.

3. If at all possible a mitral valve repair would be ideal but it takes a skilled ,experienced surgeon.

4. She needs to get another opinion at an institution with experience taking of thousands of cases as it's not just the surgery it's all the immediate aftercare that makes a difference. Places like the Cleveland Clinic, Mayo, Stanford, and Harvard are all great choices but there are others. This is what I would try to do if it was my Mom. Obviously you'd like a surgeon that has hundreds of mitral valve replacement surgeries under his or her belt with good outcomes and a cardiologist with lots of experience also.

5. I've done the anesthesia for hundreds of mitral valve replacements. It's a tough recovery even if the surgery goes as expected and it usually does. The good thing is your Mom is young. The bad thing is she probably had chemo for her breast cancer that may have effected her heart function.

Get the best care you can find for her.

Good luck

[biker72]

My 75 year old brother in law has 3 leaky heart valves. Never an athlete but always in good physical shape. After a number of tests its been determined that the valves are the only issue. No plaque buildup...etc. He's temporarily on a diuretic to keep down the fluid retention.

He's scheduled for surgery early next month. Going to repair 2 valves and replace one. I told him to get in the best physical shape he can before surgery. He'll recover quicker.

[AngryScientist]

i agree with both gasman and thwart in this situation.

i have gone through some similar decision making with my dad, but he was much, much older than your mom.

my biggest advice, not being a medical person myself, is to find a cardiologist who is a "big picture" thinker. someone who can see your mom as a person, a human being, a compilation of many complex systems, not just a vessel that holds a heart. major surgeries need to be viewed from not simply the perspective of the individual component in question, but the whole body and accompanying systems.

it's my experience that medicine is getting very compartmentalized, and lots of specialists fail to see the bigger picture, which is important. that's a broad statement, but just something i noticed recently dealing with my dad and something you as family should be aware may be an issue.

best of luck to you and mom. my gut feeling says she is young enough, and this branch of medicine is advanced enough that she should have a very good shot at success.

[fmradio516]

My 75 year old brother in law has 3 leaky heart valves. Never an athlete but always in good physical shape. After a number of tests its been determined that the valves are the only issue. No plaque buildup...etc. He's temporarily on a diuretic to keep down the fluid retention.

He's scheduled for surgery early next month. Going to repair 2 valves and replace one. I told him to get in the best physical shape he can before surgery. He'll recover quicker.

My mom has been on a diuretic as well. Best of luck to your brother in law.

So you think exercise(cardio?) would be ideal before the surgery? My mom hasnt been able to do anything more than walking because of the fibro, but I think she might be able to bike if I got the fit comfortable enough for her. Maybe even one of those really crappy suspension seatposts..

[fmradio516]

thanks for all the kind words everyone. sounds like I need to talk to her and maybe fly her out of state to a hospital that really specializes in this stuff. updates to follow.

[572cv]

My dad got an extra dozen years plus on a valve replacement. They were good years, but there was one caveat in his case : he had to take a medication for tissue rejection that eventually affected his kidneys. At the end of his life (he made it past 90), he was on dialysis. I don’t know where medicine is on the finer points of this surgery these days... probably further along. My best to you and your mom.

[biker72]

My mom has been on a diuretic as well. Best of luck to your brother in law.

So you think exercise(cardio?) would be ideal before the surgery? My mom hasnt been able to do anything more than walking because of the fibro, but I think she might be able to bike if I got the fit comfortable enough for her. Maybe even one of those really crappy suspension seatposts..

I think anything to get her in better shape would be good. I had open heart surgery at age 49. I was way overweight but fairly active. I was really surprised how weak I was after surgery.

[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.

[Hawker]

I'd just like to encourage you to get at least three opinions...preferably from real experts in the field. And if there is a teaching hospital near you, that's a good place to start. Also the Cleveland clinic for a fee, will allow you to present your situation to their doctors who will give you an objective opinion. The process takes about 2-3 weeks on-line.

I've had an open heart quintuple bypass...and then complications. I was in great shape at 64 but it did leave me incredibly exhausted and I needed all of six weeks to even begin to feel normal. My mother went in for her second valve replacement at age 70 and never made it out of recovery.

Use the best hospital and surgeon you can find and (seriously) don't have the surgery done on a Friday. You don't want complications the next day when the A-team has gone for the weekend.

[fmradio516]

I'd just like to encourage you to get at least three opinions...preferably from real experts in the field. And if there is a teaching hospital near you, that's a good place to start. Also the Cleveland clinic for a fee, will allow you to present your situation to their doctors who will give you an objective opinion. The process takes about 2-3 weeks on-line.

I've had an open heart quintuple bypass...and then complications. I was in great shape at 64 but it did leave me incredibly exhausted and I needed all of six weeks to even begin to feel normal. My mother went in for her second valve replacement at age 70 and never made it out of recovery.

Use the best hospital and surgeon you can find and (seriously) don't have the surgery done on a Friday. You don't want complications the next day when the A-team has gone for the weekend.


Sorry to hear about your mom. This is great advice though. That online process for Cleveland seems great.

[Ralph]

thanks for all the kind words everyone. sounds like I need to talk to her and maybe fly her out of state to a hospital that really specializes in this stuff. updates to follow.

Your heading says you live in Boston. Can't imagine more experienced Doctors than you have there. World renowned Brigham and Womens Hospital, etc.

A few years ago, a friend needed complicated heart surgery.....one that they do routinely here in the two largest hospitals in Orlando.....but still.... he wanted even more experience and skill.....so he chose Brigham and Womens Hospital in Boston. It's also the teaching hospital of Harvard medical School. You got it all right there.

https://www.brighamandwomens.org/

[fmradio516]

Your heading says you live in Boston. Can't imagine more experienced Doctors than you have there. World renowned Brigham and Womens Hospital, etc.

A few years ago, a friend needed complicated heart surgery.....one that they do routinely here in the two largest hospitals in Orlando.....but still.... he wanted even more experience and skill.....so he chose Brigham and Womens Hospital in Boston. It's also the teaching hospital of Harvard medical School. You got it all right there.

https://www.brighamandwomens.org/

Great idea... thank you

[onsight512]

I hope that whatever route your Mom goes, it works out smoothly and easily for her.

For what it's worth, I had my aortic valve replaced about 8 1/2 years ago. I planned on a pig valve, but woke up with a cow valve. There was something about the size valve I needed, after they opened me up, that caused them to make the change during the surgery. I was 42 at the time.

I don't react well to anesthesia, so the first few days in the hospital were rough, but everything thereafter went swimmingly. I was pedaling my bike around the neighborhood at day 10, post-op.
Not a good idea, btw. A fall off the bike would have been really bad, but I digress...

I've been happy with the valve and have only had to take an 81mg aspirin, daily, ever since.
I think my valve will need to be replaced sometime in the not too distant future and I've yet to decide whether it'll be another tissue valve, or if I'll go mechanical and resign myself to blood-thinners for the rest of my days.

Best wishes to your Mom.

[Pastashop]

Note: replacement valves often get contaminated over time with plaques, to a greater extent in men than women, at least in some part due to a greater amount of animal fats and proteins in the diet. Has to do with a particular kind of substance present in mammals (cows, etc.) for which there’s no antigen in humans, blah blah blah scientific stuff (I can forward you more info if you want)... the upshot being that if you want to reduce the need for repeat surgery, go vegetarian.

[ariw]

One of the guys in our local riding crew had a valve replacement at the Mayo Clinic, and he is as strong as ever. As others have mentioned, going to an institution that handles this type of patient regularly is key. My brother worked in CVICU post-op, the care there was critical to success. You want the group of people caring for your Mom to be handling cases like this day in and day out.

Also, yes to walking as much as she can prior to surgery.

Hope she is better soon, my mom (75) had breast cancer and more recently lung cancer, but still keeps up with my kids and loves walking our dog for 40+ minutes at a clip.

-Ari

[onsight512]

Note: replacement valves often get contaminated over time with plaques, to a greater extent in men than women, at least in some part due to a greater amount of animal fats and proteins in the diet. Has to do with a particular kind of substance present in mammals (cows, etc.) for which there’s no antigen in humans, blah blah blah scientific stuff (I can forward you more info if you want)... the upshot being that if you want to reduce the need for repeat surgery, go vegetarian.

I'd be very interested in reading whatever 'blah blah blah scientific stuff' you could send my way.

thanks very much,
Chris

[classtimesailer]

I had AVR surgery at 52, 8 years ago. Dr. V. Starnes here in Los Angeles did the surgery. Find someone who does a lot of these surgeries. When I spent time researching this stuff, Cleveland came up often as being pretty successful but I suspect that Boston should have somebody who does this for a living. Inquire about valve replacement that avoids open heart surgery. Here in L.A., they've been doing it for awhile and when mine needs replacing, they will go through my leg or some such thing. Too bad kinda because I would like them to do a neater job on the wires they used to put my chest together. Try not to worry. Your mom will be fine. Check out Valvereplacement.org

[fmradio516]

thank you!

[gasman]

I had AVR surgery at 52, 8 years ago. Dr. V. Starnes here in Los Angeles did the surgery. Find someone who does a lot of these surgeries. When I spent time researching this stuff, Cleveland came up often as being pretty successful but I suspect that Boston should have somebody who does this for a living. Inquire about valve replacement that avoids open heart surgery. Here in L.A., they've been doing it for awhile and when mine needs replacing, they will go through my leg or some such thing. Too bad kinda because I would like them to do a neater job on the wires they used to put my chest together. Try not to worry. Your mom will be fine. Check out Valvereplacement.org

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 you had.

FM-good luck with your Mom !

[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]

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]

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.

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]

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. :hello:

[wallymann]

https://www.nytimes.com/2019/03/16/health/aortic-valve-replacement-heart.html

[slinkywizard]

https://www.nytimes.com/2019/03/16/health/aortic-valve-replacement-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]

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]

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]

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]

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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[gasman]

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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Sounds like exactly the surgeon to use.

What a great place with a depth of knowledge in so many areas.

[fmradio516]

Sounds like exactly the surgeon to use.

What a great place with a depth of knowledge in so many areas.

Agreed 100%. I feel so much better about this. Thank you wizard pal!

[slinkywizard]

Always happy to help...!




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[Plum Hill]

Any update?

[fmradio516]

Any update?

Yes after a suggestion from a fellow forum member, I forced my mom to change doctors. She is seeing someone at Mt Sinai hospital in NY and they are going to attempt to do the minimally invasive surgery of putting clips on her mitral valve to stop the leak as well as put in a pacemaker. While the clips aren't a permanent solution, it is being done to strengthen her heart as it is way too weak for an open heart surgery.

Yeah she'll need the valve replacement eventually but the clips should buy her a couple years to get stronger AND maybe by the time she needs it done, it won't be a huge open heart surgery but more minimally invasive like the aortic valve replacement surgeries currently available.

So glad I posted this thread otherwise my mom would probably still be going to the group of doctors that was about to just go ahead with the valve replacement right away even though the doctors at that hospital couldn't agree if her heart was strong enough for it.

I'll be making a donation to the forum to show my gratitude as this could have been really bad for my mom and I owe this all to a fellow member!

THIS PLACE RULES!!

[gasman]

Glad your Mom is getting better care. Our regional hospital just started placing clips for leaky mitral valves. I hadn’t heard of the prodedure so I read up a little on it. It isn’t a cure but more of a bridge and Dr Oz , yes that Dr Oz , has a patent on idea and was sort of the originator of it.
Best of luck to your Mom !!

[fmradio516]

Just an update:

Earlier this summer, my mom had the heart valve clips put in and she has been feeling really great and exercising as much as she could. Then the past few weeks, she has been really out of breath and not feeling well; similar to her condition BEFORE the surgery. Two days ago she was so dizzy that she almost fainted in the supermarket. We all thought that the clips must've come un-done(Surgeon said this was a risk given her situation).

Well she just left his office and the clips are still there working as expected. But her heart isnt pumping very well at all. Her "ejection fraction" before the surgery was 15 and he said its even lower now, which is extremely bad.

Her cardiologist is telling her now that her heart is in really bad shape and she needs a heart transplant; pending some test results to see if she qualifies(??).

She's turning 60 in a week, so im hopeful that she will have at least that on her side regarding recovery.

Anyone have any experiences with this? Super stressed out now. :(

[OtayBW]

Just an update:

Earlier this summer, my mom had the heart valve clips put in and she has been feeling really great and exercising as much as she could. Then the past few weeks, she has been really out of breath and not feeling well; similar to her condition BEFORE the surgery. Two days ago she was so dizzy that she almost fainted in the supermarket. We all thought that the clips must've come un-done(Surgeon said this was a risk given her situation).

Well she just left his office and the clips are still there working as expected. But her heart isnt pumping very well at all. Her "ejection fraction" before the surgery was 15 and he said its even lower now, which is extremely bad.

Her cardiologist is telling her now that her heart is in really bad shape and she needs a heart transplant; pending some test results to see if she qualifies(??).

She's turning 60 in a week, so im hopeful that she will have at least that on her side regarding recovery.

Anyone have any experiences with this? Super stressed out now. :(
Wow - that is tough. Sorry, nothing to offer except my best wishes!

[Dekonick]

Just an update:

Earlier this summer, my mom had the heart valve clips put in and she has been feeling really great and exercising as much as she could. Then the past few weeks, she has been really out of breath and not feeling well; similar to her condition BEFORE the surgery. Two days ago she was so dizzy that she almost fainted in the supermarket. We all thought that the clips must've come un-done(Surgeon said this was a risk given her situation).

Well she just left his office and the clips are still there working as expected. But her heart isnt pumping very well at all. Her "ejection fraction" before the surgery was 15 and he said its even lower now, which is extremely bad.

Her cardiologist is telling her now that her heart is in really bad shape and she needs a heart transplant; pending some test results to see if she qualifies(??).

She's turning 60 in a week, so im hopeful that she will have at least that on her side regarding recovery.

Anyone have any experiences with this? Super stressed out now. :(
I wish you and your family speedy answers and solutions in trying times. I wish I could help.

I do know that there are bridge devices that help. You can read about them here https://www.mayoclinic.org/tests-procedures/ventricular-assist-device/about/pac-20384529

The left ventricular assist devices I first worked with a decade ago have really improved and are amazing. If it brings you any comfort, where I work we have quite a few patients who live normal lives with these while waiting for transplants. They are out in the community, at home. Again, I don't know your mothers situation. I do know she is at an excellent institution. Hope this helps.

[Black Dog]

My fathers best friend had a heart transplant (from congestive heart failure) in his late 50’s and lived a normal life for over 20 years after the surgery. There are great outcomes that are possible in some cases. Don’t give up hope.

[onsight512]

I'm sorry to hear about that. Best of luck to you & your mom.

[gasman]

Oh man I’m sorry to hear the news. An ejection fraction of 15 % is very low (60% is normal) .
Medications can help but I assume she’s been on the road for a while. Getting her evaluated for a heart transplant will be very important because the wait can be long depending on organ availability. Qualifying just means they evaluate her medically to make sure she’s a good candidate , and I’ve got to assume she is.

She can bridge with an left ventricular assist device (LVAD) and these can be left in for quite a while as Dek linked to. So there are always options.

Best of luck, it sounds like she’s getting good care. She clearly has a son who cares.
Let us know what happens.

[oldpotatoe]

Two points..first, it sounds like she has 2 things going for her, 3 things actually..her age, great doctors and medical staff and a loving son. Good vibes DO travel, do make an impact.

PLUS...geee, seeing this post and others I have seen here speaks volumes about this forum. Life changing, scary, troubling to 'hey, I have a new red gadget and can't figure it out'...many of us come to this 'bike' forum for help, assistance, advice or just some kind words and encouragement...

I'm impressed everyday. The first place I come each morning..:)

[fmradio516]

Thank you all! I let my mom know about the bridge devices and at the same time she forwarded me a message from one of her doctors nurses who mentioned an "artificial heart" that you need to carry around a case for. I wonder if its the same as a VAD.

The whole open heart surgery thing(even to implant a VAD) may be kinda risky because after she had breast cancer, she had a Mastectomy, so she had some kind of re-construction done after where the muscles from her back were grafted onto her chest. Before she had the clips, the doc told her he didnt want to do open heart because of these grafts. I forget the exact reason but i remember it being something like there was going to need to be two surgerons(one heart and one plastic) at the surgery in order to do it right... Didnt get the full story on that, but regardless..

Thanks everyone for all your good vides! :o

[clyde the point]

Good luck there buddy and prayers sent. Fortunately we live in a time period where there is a lot of experience with this kind of stuff on the medical end. That doesn't make it easier for the patient's family, but remember one thing: you and your family know the patient better than anyone else so if you see something say something!