New member; Alarmed at decreasing EF %

[dornole]

Thanks for reporting back. I'm scheduled for an exercise echo myself as a follow up to my last echo. No idea how that will go. Sounds like you are on a methodical plan.

 

[BAV]

Not saying this has anything to do with your breathlessness on exertion but I had that REAL bad (just walking up steps) starting a few months prior to suffering a major heart attack - which led to my OHS. Turned out I had a major coronary artery blocked 90% plus BAV with "moderate" calcification which of course put a strain on my heart. My breathlessness was originally totally misdiagnosed as COPD btw, and I almost died from that misdiagnosis & meds I was on etc etc etc, very long story.

The stress echo you mentioned getting should help reveal your issue. One known as a NUCLEAR stress test might also be useful - for that they inject you with radioactive/whatever dye b4 you workout on the treadmill then do cat & dog scans on you to get a good look at your heart muscle & its bloodflow.

Anyways, don't worry about the stress echo, should not be a big deal. Best of luck to you and sounds like you are on the right track!

Do you mind me asking the extent of breathlessness you would have from stairs before surgery? Just breathing a little harder or would you need to sit down to catch your breath ?

 

[AZ Don]

My sister, a retired OB/Gyn, had said she'd be concerned about any CT surgeon wanting to operate on someone functioning as well as I am given the risks

While OHS is not something to rush into, when you have a condition that will get progressively worse, with the risks continually increasing, why wait until the risks from the disease approach or exceed the risks from OHS? You will still have to have the OHS. The only risk that you can control is limiting the risk from the valve by not waiting until it causes damage.

 

[Gloria Mundi]

Do you mind me asking the extent of breathlessness you would have from stairs before surgery? Just breathing a little harder or would you need to sit down to catch your breath ?

It's hard to quantify. I don't have to sit down to catch my breath but I do have to sop and rest. I feel it now just walking across the room when my heart rate is only around 75- not severe, not so bad I need to stop and catch my breath, but in the beginning I didn't have it just walking on a level surface.

While OHS is not something to rush into, when you have a condition that will get progressively worse, with the risks continually increasing, why wait until the risks from the disease approach or exceed the risks from OHS? You will still have to have the OHS. The only risk that you can control is limiting the risk from the valve by not waiting until it causes damage.

And that's where I am right now. The rest of my body is in great shape- medical records described my musculature as "grossly normal" (I considered that a compliment), balance and range of motion are good, no other medical issues. I figure I'm in a good spot to pull through it AND to enjoy the expected benefits.

I'm meeting with the surgeon Monday (yeah, in 2 days) . He had an opening that early and I want to hear what he has to say. I can't remember if I mentioned upthread that my sister, a retired OB-Gyn, had said she'd be concerned about a CT surgeon who wanted to operate on someone functioning as well as I am but my thinking in the last paragraph is the opposite. She HAS said she'll support me in whatever I decide, including flying halfway across the country to stay with me afterwards for awhile. Our late parents would be proud.

 

[3mm]

She HAS said she'll support me in whatever I decide, including flying halfway across the country to stay with me afterwards for awhile.

This is why I recommend to all children that they ask their parents for at least 1 sister! Seriously, I'm sure she will be very helpful.

 

[Gloria Mundi]

This is why I recommend to all children that they ask their parents for at least 1 sister! Seriously, I'm sure she will be very helpful.

It helps if she's an MD! I'm a retired actuary and so far none of my siblings has needed my expertise.

 

[V__]

I'm meeting with the surgeon Monday (yeah, in 2 days) .

Good luck with the appointment!

She HAS said she'll support me in whatever I decide, including flying halfway across the country to stay with me afterwards for awhile. Our late parents would be proud.

This is golden. Even though she's in a different specialty, I'm sure that, as a professional, she'll be helpful in a big way.

 

[Gloria Mundi]

Good visit with the surgeon. Bottom line: no rush unless I want to rush it. He thinks the inevitable deterioration will be slow- not something that would send me to the ER in an ambulance. He also wants to make sure that the surgery has a good chance of improving things, not making them worse- and I "set a high bar". To paraphrase, someone who's frail, has a low EF, chest pains, can't walk distances, etc. has a pretty good chance of improvement after surgery. It's harder to call with me.

His approach would be repair, including "neo chords" to better connect the valve flaps to the heart wall and if that doesn't work (which he'd decide after he tried this, not in a second surgery), replacement with a bio valve. I've got a Baltic cruise scheduled in September- we're scheduling a scan after I get back and I'll see him after that but now we're thinking of the first half of next year, partly depending on how I do on my trip. I like to wander in cities and if I have to curtail that it might be a sign that something is getting worse.

Oh, yeah- I donate blood, plasma and platelets often and asked how far before any surgery I should stop that. He said 3 months. Glad I thought to ask.

I spoke with my sister and she's happy with this approach. Thanks to everyone on this Board who provided background info and perspective.

 

[V__]

His approach would be repair, including "neo chords" to better connect the valve flaps to the heart wall

As I understand it, these are to add/replace "Chordae tendineae". Which are natural "strings" that connect to papillary muscles. That is, the mitral valve's opening/closing is done not just by the pressure difference in its natural state. The muscles help with the motions.

In case of the valve replacement they don't help anymore, since the strings are not attached to the artificial leaflets. But even then they prefer to keep the papillary muscles, as it helps preserve the heart's shape.

It seems the neocords were introduced in the 90's (along with the ring implantation), and they improved the outcome. Somebody found a material (by accident) that tends to get covered by the natural fibrose tissue, which increased the biocompatibility.

 

[slipkid]

Do you mind me asking the extent of breathlessness you would have from stairs before surgery? Just breathing a little harder or would you need to sit down to catch your breath ?

I could not "catch my breath". Felt like I was gasping for air. Had to wait/rest to return to "normal".

 

[Gloria Mundi]

I could not "catch my breath". Felt like I was gasping for air. Had to wait/rest to return to "normal".

Wow- I hope they don't wait till mine gets that bad before they recommend surgery. I've never felt that bad but that's partly because I've had to modify my workouts and make them a little easier, walk my bike up hills and take long hills and steps at a slower pace when on foot.

 

[slipkid]

Wow- I hope they don't wait till mine gets that bad before they recommend surgery. I've never felt that bad but that's partly because I've had to modify my workouts and make them a little easier, walk my bike up hills and take long hills and steps at a slower pace when on foot.

Yeah, I was pretty bad. Both a bad valve AND blocked arteries.

I had an incident at work during a fire drill where after running up then down a flight a stairs to get outside I had to collapse on my knees and try to catch my breath. At that point I went to see my general DR at the time.

And very long story short, he misdiagnosed my condition as COPD. Put me on some godawful powdered medication that you inhale which filled my mouth with ulcers and I learned later would have stripped the enamel off my teeth and caused them to rot out! Gotta love how Drs don't tell you about adverse effects.

Anyways that med made me feel like my heart was pounding out of my chest. Ditto with an asthma inhaler which gave me no relief. DR then proceeded to idiotically recommend that I try prednisone (no thanks). At that point I decided to take a sister's advice and see a cardiologist. However b4 I was able to get to that I had a major heart attack and "died" (heart stopped multiple times) which led to emergency open heart surgery including replacing my aortic valve.

Don't let it get like that for you. If you feel your Dr(s) are idiots and on the wrong track fire them and try other ones. Eventually you may find someone good. But that is easier said than done, I myself have had rough going the last 2 years with bad Drs and have given up but I digress.

 

[Gloria Mundi]

Wow. You've been through the wringer. I'm a bit of a hypochondriac, spend too much time consulting Dr. Google, listen to Dr. Peter Attia's podcasts and sometimes ask my sister the doctor questions that make her roll her eyes at me. I think my docs are on the right track. Doc #1 ordered an echo, a calcium scan and a treadmill stress test 3 years ago. Calcium score was 1- a darned good sign. Treadmill test hasn't been repeated. Echo is being done once a year. I can see the loose valve flaps flailing away and the technicolor backflow for myself. Doc #1 said in January to keep doing what I'm doing and come back in a year- it was my own concerns that led me to get additional consultations. Doc #2, an interventional cardiologist, ordered the exercise echo and referred me to the surgeon (Doc #3). So, 6 months after seeing Doc A, an exercise echo, 2 visits with Dr. B and one with Dr. C- results are consistent with Dr. A. And I suspect that if I pushed for surgery right now Dr. C would do it but would read me the riot act about how it might not result in much improvement, could make things worse and at the very least will be a major assault on my body. I'm comfortable with waiting for now.

Sometimes I envy my neighbor across the street with the transplanted heart but then I remind myself he's on a boatload of meds and stays out of closed public spaces. His wife wears a mask when she goes out. There are no easy fixes.

 

[V__]

sometimes ask my sister the doctor questions that make her roll her eyes at me.

It's a special privilege, reserved for the family members Seriously though, there were a few times when I got VERY valuable insights from talking to doctors in informal settings.

I'm a bit of a hypochondriac, spend too much time consulting Dr. Google, listen to Dr. Peter Attia's podcasts and

IMHO patient's education is useful. It takes (at least) two to tango, and they'd better be (more or less) in step.

 

[Gloria Mundi]

IMHO patient's education is useful. It takes (at least) two to tango, and they'd better be (more or less) in step.

I agree. The old-school doc might ask sarcastically, "Which medical school did YOU attend?" My interventional cardiologist and I had a great back-and-forth discussion. Him: "Your Lp(a) is high. Maybe you should take statins." Me: I had terrible tendonitis with Prevastatin. My CRP is low and my calcium score is 1." He agreed although I'm debating getting another class of statin. I really like having a practitioner who supports my doing my own research and my attempts to keep this from getting worse via healthy diet and exercise.

 

[dornole]

When I had severe mitral stenosis, I had to stop halfway up one flight of stairs to catch my breath before I could make it to my bedroom. Granted, I was also pregnant with twins so that made the impact of the stenosis more severe.

I also couldn't sleep lying down without breathlessness and coughing up quarter-size splats of bright red blood.

So, not subtle.

 

[SatoriFound]

I can see why some docs don't like the patient having access to test results on-line because they ca get alarmed, but I'm glad I've had this lead time before my visit.

I like the test results online because I can research them and then have a list of questions prepared BEFORE the visit. I always forget all my questions in the moment. If I don't know what to ask I usually just leave and then the questions pop up afterwards and I end up more confused than when I went in.

 

[SatoriFound]

When I first became concerned with my EF - it was 40, and gradually declined, I checked to see what the normal EF should be. IIRC, 'normal' is around 60.

Nobody's EF is 100%, AFAIK, so having a 60% is not a dire prediction of failure (people, at least me, expect 100% to be normal - it isn't).

Yes, listen to your doctor. If you're unsure, get another opinion. But you can take some comfort in the knowledge that a 100% EF isn't the 'normal' value.

My echo report just says greater than or equal to 60%.

 

[Protimenow]

Mine's gone below 30. Now I have a pacemaker with a built in defibrillator.

It reminds me of a '60s song (I don't recall the group or the title) :
'I'm going down, down, down, down, down.'

Fun.

I think it was either Albert Collins or Lightnin' Hopkins. I have serious doubts about it being Springsteen.

 

[Gloria Mundi]

Thanks for the reassurance- I thought 100 was the "target"!