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]

Originally Posted by 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.

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..

Originally Posted by Blown Reek

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

thats rude

[thwart]

Originally Posted by fmradio516

... 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.

Originally Posted by Blown Reek

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

[ntb1001]

Originally Posted by Blown Reek

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]

Originally Posted by 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.

!

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]

Originally Posted by 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.

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..