Different strokes...

[Protimenow]

Like many of us, we have mechanical valves. The clicking may take a while to get used to, but I don't think that there are many (any?) who don't get used to it fairly quickly. My wife likes the sound (she said once) because it still shows that I'm alive and reminds her of how much worse things would have been (I'd probably have died years ago) if I didn't get the valve. I once wore a cheap watch that ticked 6 times a second and it scared the crap out of her - she though I was having a heart attack (actually, it may have been aFib she was thinking of).

As far as self testing and self managing - I've been doing it for 15 years. It's not that big a deal for most of us. If you need help with dosing, Pellicle is a great source, and there are guides and other materials on this forum. Personally, I would trust the information here over the outdated (and sometimes even incorrect) stuff you might see elsewhere.

 

[nobog]

I didn't realize that bio valves could degrade quickly. Never heard that. Interesting. Even quicker than your native valve? Thanks Chuck

I can't imagine how you got that impression - especially after being on VR for years. I have personally seen tissue valves last 6 months - or 20 years. So roll your dice.

 

[pellicle]

I didn't realize that bio valves could degrade quickly. Never heard that. Interesting. Even quicker than your native valve? Thanks Chuck

you've heard that here multiple times, I've even sent you the examples , please do what Chuck tells you and write this down David.

One guy with high Lp(a) got under 2 years.

 

[newarrior]

Greetings newarrior

You are the age I was when I had my valve implanted.

I'm booked for a CT angio in mid April, so I should have a better idea if there are any issues percolating behind the scenes once I get the results. Apparently, it is much clearer to see BPVT / HALT (hypoattenuated leaflet thickening) via a CT angio. Will be interesting to see the results.

I've never had my Lp(a) tested, but am hoping to get it checked soon. I believe such a test's not routinely done via the UK's National Health system.

Best of luck to you going forward towards your eventual surgery.

Thanks. Sorry about my endless replies. My surgery got canceled is because my doctor and I had a disagreement relating to the incision I'm trying to get him to do a smaller one either he doesn't think it's a good idea where he's not capable it's just weird cuz he's a senior surgeon. I should be getting my LPA test back again as well today. I'll let you know.

 

[Chuck C]

I should be getting my LPA test back again as well today. I'll let you know.

You shouldn't see much difference in your Lp(a) level, as it stays stable during our adult lives, unless there is treatment. One exception is that women generally see an increase when they enter menopause.

"Estrogen hormone inhibits LPA gene transcription [9], and elevated Lp(a) induces the expression of inflammatory genes in the vascular cells [1]. Menopause is associated with increases in serum total cholesterol, low-density lipoprotein cholesterol (LDL-C), apolipoproteins, and triglycerides, decreases in high-density lipoprotein cholesterol (HDL-C), and increases in Lp(a) concentrations"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9919220/#:~:text=Despite the strong genetic influence,rise during menopause [7].

I'll let you know.

When you share your results, please be sure to include the units. Lp(a) is measured in both nmol/L and mg/dL. It is only a very approximate conversion, but when going from mg/dL to nmol/L, the rule of thumb is to multiply by 2.4. But, if you try to compare an older result, for example done in mg/dL, to a new test, that may be in nmol/L, you really can't use that to make any informed comment on change in your Lp(a) level, as there is some difference in particle size which will vary patient to patient. For some the conversion factor might be 2x, while in others it might be 2.8 or so. So, when comparing apples to apples, try to go to the same lab and ask ahead of time which unit measurement they use, making sure they use the same units of your previous bloodwork, if you plan to use it as a baseline for where you are at currently.

Even doctors often fail to pay attention to the units and occasionally there is the "My patient experienced a 70% drop in Lp(a) by switching to an xyz diet." When there is such a statement it is always that they weren't paying attention to the units, always uncovered upon follow up questions. I've even observed researchers botch hazard ratios in presentations, by failing to pay attention to the units used in the studies that they are presenting.

 

[nobog]

Thanks. Sorry about my endless replies. My surgery got canceled is because my doctor and I had a disagreement relating to the incision I'm trying to get him to do a smaller one either he doesn't think it's a good idea where he's not capable it's just weird cuz he's a senior surgeon. I should be getting my LPA test back again as well today. I'll let you know.

But before you said:
My surgery was cancelled 3 days before I was to enter the hospital. No reason was given.

???

 

[Spookygal]

But before you said:
My surgery was cancelled 3 days before I was to enter the hospital. No reason was given.

???

Right.

Also-

From what I’ve read, a bigger incision (normal sized incision) is easier for the surgeon to get a good vantage point of what he’s looking at and it’s easier for him to do what he’s gotta do in there. I’d probably just let him do his thing.

 

[Protimenow]

What's the real difference between a 1-2" incision and a 6 or 8" incision? The larger incision may take a bit longer to heal, and leave a nicer looking scar. For something as important as heart surgery, should the size of the incision be the most important factor?

In the post that started this thread, diplopia was mentioned. If you're taking digoxin (some of us might be), this is a known side effect.

 

[newarrior]

Good evening and nice to meet you sir. I'm sorry to hear about your dilemma. I became aware of LPA through Chuck who's been a tremendous resource for me. I had it tested in late 2019 it was very high just had it checked again today. I did doubt the number has changed but I want to check it out anyways. I found a doctor here in Bangkok who will give me the same drug that chuck is taking PC ks9. It's going to cost about $425 a month but at least I found somebody who'll give it to me and my cost of living is so low where I live whatever I'll just do it. I'll probably wait until after I get the surgery since at this point my native valve is pretty much toast. Your thing has got me frightened because I'm supposed to get the resilia valve in the next month or two. I'm very freaked out about the mechanical valve the ticking that everybody jokes about would drive me nuts I have no problems taking Warfarin I'm just worried about managing my INR because my life and my lifestyle is so erratic I'm always traveling moving around all the time plus I'm hardcore vegan but my dietary intake of things that could affect INR is very variable anyway somebody be watching your case closely. I'm wishing the best for you.

Sorry for my run on sentences Seaton ! I just got diagnosed with Autism at age 59 in 2022 so I am one hot mess communication wise plus I am as anxious as a deer in heat !

Keep us posted mate ! I am in communication with an MD at Edwards btw talking about SVD and high lipoprotein. All the best sir ! In my prayers ! as we say in the USA, "You got this !""))))))))))))

 

[Gail in Ca]

My incision got longer with each of my 3 surgeries. I also had more chest tubes with each, 2,3,4. I never concerned myself with the length of my incisions. My surgeon knew what was needed to do the job.

 

[3mm]

What's the real difference between a 1-2" incision and a 6 or 8" incision

The mini sternotomy should heal faster. But the surgeon has more difficult access to the heart, so this doesn't work well for some procedures. See https://cardiothoracicsurgery.biomedcentral.com/articles/10.1186/s13019-019-0912-0

My surgeon said he planned to use a full sternotomy (7 inches). I think this was because he was planning to replace the aortic valve (I received on On-X valve), and he needed to repair the mitral valve. I did not have the knowledge or the experience to argue against this. I trusted this surgeon, so I accepted his plan.

 

[Seaton]

Finally got some data from my April 2023 echo:

V max 2.7m/s
Mean Gradient 19 mmHg
AVA 1.4cm²

Compared with February echo this year:

V max 3.8 m/s,
Peak gradient 58 mmHg,
Mean Gradient 28 mmHg,
AVA 1.1cm²

A distinct change in a year (actually 10 months). A narrowing of the aortic valve area and increase in mean gradient.

My Cardiologist has referred me to a warfarin clinic through my GP, with a suggested target INR target 2-3. I had imagined an INR somewhere between 2.5-3.5 but maybe different for bioprosthetic with my issue?

Once he is started on warfarin, his clopidogrel can be stopped.

To start 1.25mg Bisoprolol for palpitations and moderate VE (ventricular ectopic beats) burden.

Cardiac CT scan with contrast booked for mid April ("...to assess for valve thrombosis and leaflet motion").
And for good measure, finally getting my LP(a) level tested tomorrow.

Taking one day at a time.

 

[pellicle]

My Cardiologist has referred me to a warfarin clinic through my GP, with a suggested target INR target 2-3. I had imagined an INR somewhere between 2.5-3.5 but maybe different for bioprosthetic with my issue?

I sincerely doubt its anything 'scientific' or evidence based, its just gut feel.

my goto for risk analysis of INR is this graph

so its pretty hard to suggest the lower range (my target is 2.5 and if I see 2.2 I gently steer back towards 2.5). I personally get too much bruising at anything over 3

To start 1.25mg Bisoprolol

my advice with respect to that is to be aware of adverse symptoms and discuss these with your GP ... don't be afraid to change betablockers

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9823244/


HTH

 

[Chuck C]

Finally got some data from my April 2023 echo:

V max 2.7m/s
Mean Gradient 19 mmHg
AVA 1.4cm²

Compared with February echo this year:

V max 3.8 m/s,
Peak gradient 58 mmHg,
Mean Gradient 28 mmHg,
AVA 1.1cm²

A distinct change in a year. A narrowing of the aortic valve area and increase in mean gradient.

My Cardiologist has referred me to a warfarin clinic through my GP, with a suggested target INR target 2-3. I had imagined an INR somewhere between 2.5-3.5 but maybe different for bioprosthetic with my issue?



To start 1.25mg Bisoprolol for palpitations and moderate VE (ventricular ectopic beats) burden.

Cardiac CT scan with contrast booked for mid April ("...to assess for valve thrombosis and leaflet motion").
And for good measure, finally getting my LP(a) level tested tomorrow.

Taking one day at a time.

Thanks for sharing Seaton.

When all three metrics to measure severity are in agreement with each other, it gives confidence that the echo is accurate.

Your April 2023 echo shows you right in the middle of the moderate stenosis range, with agreement from all three metrics.

Your February 2024 echo shows you at moderate stenosis, but close to the severe threshold with all three metrics in agreement.

As I mentioned previously, I hope that they are not waiting 12 months to do another echo. I would push for a follow up no later than August 2024, which would be 6 months from the last one. I doubt they'll do this, but even better if they will do the next one about June 2024. Things have progressed relatively quickly in the past 10 months for you and once things become more severe, if anything the progression often speeds up. Please pay close attention to symptoms and let your cardiologist know the moment that you experience any.

 

[Seaton]

I sincerely doubt its anything 'scientific' or evidence based, its just gut feel.

my goto for risk analysis of INR is this graph

so its pretty hard to suggest the lower range (my target is 2.5 and if I see 2.2 I gently steer back towards 2.5). I personally get too much bruising at anything over 3



my advice with respect to that is to be aware of adverse symptoms and discuss these with your GP ... don't be afraid to change betablockers

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9823244/


HTH

Good data and advice... Thank you!

 

[Seaton]

Thanks for sharing Seaton.

When all three metrics to measure severity are in agreement with each other, it gives confidence that the echo is accurate.

Your April 2023 echo shows you right in the middle of the moderate stenosis range, with agreement from all three metrics.

Your February 2024 echo shows you at moderate stenosis, but close to the severe threshold with all three metrics in agreement.

As I mentioned previously, I hope that they are not waiting 12 months to do another echo. I would push for a follow up no later than August 2024, which would be 6 months from the last one. I doubt they'll do this, but even better if they will do the next one about June 2024. Things have progressed relatively quickly in the past 10 months for you and once things become more severe, if anything the progression often speeds up. Please pay close attention to symptoms and let your cardiologist know the moment that you experience any.

Hi Chuck

Thanks for the response.

I hope that they are not waiting 12 months to do another echo.

Am booked for another echo in September (last one end of Feb). Will be interesting to see if there's any change in my readings over six months. Wondering if the warfarin will ease things (gradients) a touch?

Cardiologist advised me to get in touch pronto if I have any issues.

Best to you.

 

[newarrior]

The mini sternotomy should heal faster. But the surgeon has more difficult access to the heart, so this doesn't work well for some procedures. See https://cardiothoracicsurgery.biomedcentral.com/articles/10.1186/s13019-019-0912-0

My surgeon said he planned to use a full sternotomy (7 inches). I think this was because he was planning to replace the aortic valve (I received on On-X valve), and he needed to repair the mitral valve. I did not have the knowledge or the experience to argue against this. I trusted this surgeon, so I accepted his plan.

Interesting. I think we all want the smallest incision but sometimes it's not medically advised and it does give the doctor restricted access to your heart. It's sort of like opening up the hood of a car only part way when fixing something in the engine of your car

 

[newarrior]

My incision got longer with each of my 3 surgeries. I also had more chest tubes with each, 2,3,4. I never concerned myself with the length of my incisions. My surgeon knew what was needed to do the job.

Not to be cosmetic but we all hate the longer incisions why do they do longer ones each time if you don't mind me asking?

 

[newarrior]

You shouldn't see much difference in your Lp(a) level, as it stays stable during our adult lives, unless there is treatment. One exception is that women generally see an increase when they enter menopause.

"Estrogen hormone inhibits LPA gene transcription [9], and elevated Lp(a) induces the expression of inflammatory genes in the vascular cells [1]. Menopause is associated with increases in serum total cholesterol, low-density lipoprotein cholesterol (LDL-C), apolipoproteins, and triglycerides, decreases in high-density lipoprotein cholesterol (HDL-C), and increases in Lp(a) concentrations"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9919220/#:~:text=Despite the strong genetic influence,rise during menopause [7].


When you share your results, please be sure to include the units. Lp(a) is measured in both nmol/L and mg/dL. It is only a very approximate conversion, but when going from mg/dL to nmol/L, the rule of thumb is to multiply by 2.4. But, if you try to compare an older result, for example done in mg/dL, to a new test, that may be in nmol/L, you really can't use that to make any informed comment on change in your Lp(a) level, as there is some difference in particle size which will vary patient to patient. For some the conversion factor might be 2x, while in others it might be 2.8 or so. So, when comparing apples to apples, try to go to the same lab and ask ahead of time which unit measurement they use, making sure they use the same units of your previous bloodwork, if you plan to use it as a baseline for where you are at currently.

Even doctors often fail to pay attention to the units and occasionally there is the "My patient experienced a 70% drop in Lp(a) by switching to an xyz diet." When there is such a statement it is always that they weren't paying attention to the units, always uncovered upon follow up questions. I've even observed researchers botch hazard ratios in presentations, by failing to pay attention to the units used in the studies that they are presenting.

Understood I just go by the base level number whatever it is the lower number mine went from 88 to 89 over the last four and a half years I'm not expecting any kind of a drop unless I go on PC ks9 like you have. Hope I'm not hijacking the thread the good thing is my ldls are down to 53 due to being on a strict plant-based diet not drinking keeping my weight down and taking 40 mg of Statin religiously. Also I've got my blood pressure under control but sadly that's because I'm on drugs again

 

[Chuck C]

I just go by the base level number whatever it is the lower number mine went from 88 to 89 over the last four and a half years

Hi David.

Just to clarify to the other readers, I am aware that your Lp(a) was measured in mg/dL, because you sent me the results.

Getting a reading of 89mg/dL, compared to 88mg/dL 4.5 years ago, would mean that your level has not changed. This is to be expected and is exactly what I predicted a few posts up when I said the following to you:

You shouldn't see much difference in your Lp(a) level, as it stays stable during our adult lives, unless there is treatment.

I'll again underscore why the units matter when reporting Lp(a) results. If youre measurement was in nmol/L, a reading of 89 would only represent a mildly elevated risk, the threshold being 75nmol/L. However, as your measurement was actually 89mg/dL, this represents a significantly higher risk level, >30mg/dL being considered elevated risk and >50mg/dL considered substantially elevated risk for cardiovascular events, stroke and aortic stenosis.