[Karen W. (OP)]

It seems I have came to the end of being able to control my heart valve issues with medicine and I cannot have another open heart surgery due to all my previous ones and co-morbidities. I also have a bicuspid issue that is a culprit here.

My Aorta has two stable aneurysms,  but the aorta valve itself has stenosis and is failing, it's regurgitating badly, causing me loads of grief, with breathing issues, and I am totally worn out trying to get from point A to point B.

My angina has escalated again with Blood pressure meds not controlling everything.   There is no coronary artery disease which is in my favor..

I take good care of myself, but needless to say my defects have progressed and now my the valves are fouled and narrowing far to fast..  My Doctor does not believe I have another 6 months. The rate of closure has sky rocketed in six months.  In a year I jumped from a 17 to 30  on the closure scale and that was november. Between November and March I shot up over 60.

I understand I need to have this procedure to be able to live.  I am going down to Stanford again 14th and 15th of May two weeks to be evaluated for this procedure.  I am, according to my Doctor, an extremely high risk for open heart surgery so my only alternative is the "TAVR" procedure, if I can pass my evaluation.

So I have watched the procedure but have a few questions. And would like more detailed info before I go down to hospital.   I understand that the biological valve either pig or cow or whatever only lasts between 3 to five years before it starts deteriorating.  Five year study I read 54 percent of people were dead at 5 year check others were in various states of deterioration and failure... But those patients on average were 74 years and older. I am 57.

Seemed the older folks valves held up longer then the younger folks...  So One Of my questions is will they monitor the progression of the valve and if it starts to fail can it be replaced again or can it only be done 1 time? Is it just this procedure can only be done 1time.  Can a regular open heart be done at the point of deterioration if co-morbidities are improved?

[Wildthing]

I can't tell you about that procedure.   However,  I was diagnosed
with a moderate leaky aortic valve a couple years ago.  I had read
that vitamin K2 had been shown to successfully reduce hardening of
arteries, calcium build up in mice.   So I thought I would take it,  probably
could not hurt.  So I took "Super K" available from  life extension
website.   I mixed a cut open capsule with a tablespoon of olive
oil or fish oil,  daily.  I did that for months religiously.  Then I was retested
and found to have no aortic leakage.   Also pretty soon I read that
tests on people also showed reduction in calcium deposits in people
taking vitamin K.   So it would appear that it worked for me.   I still take
the vitamin K daily mixed with flax oil.   Also I take calcium supplements,
calcium aspertate daily.   It is counter intuitive, but Dr Joel Wallach says
that calcium deficiency is the cause of calcium deposits and heart
disease.   What is counter intuitive about it, is that lack of calcium
causes the body to rob bone of calcium and it is this calcium that
get deposited,  and cause hardening of valves and arteries.  Also
according to  him,  almost everyone is calcium deficient.   It probably
can't hurt for you to look into adding  vitamin K  and calcium to your
diet.   It sounds like you have progressed pretty far along the line
of calcium deposits,  and will need other measures,  but we  don't
really know,  and it won't hurt you to supplement with these things,
Actually most people are deficient in many minerals,   on top
of calcium and vitamin K.   If you want to  hear more about it,
you can check out  "Joel Wallach" on youtube,   and you can also
read his books,  the most popular of his books is "Dead Doctors
Don't Lie",  which you can also find info on,  at  youtube.com.
 

[Wildthing]

Also I notice you  have aneurysms.   Wallach did lots of
research in this area,  and  noted that  the cause of
aneurysms is copper deficiency.    It was well established
that this was a primary cause of aneurysms.   Going
further,  it should be no surprise,  mineral deficiency is
probably the number one cause of most health problems
today,  according to Wallach.   A 100 year test of soil
by the dept of Agriculture,  1912 to 2012,  showed that
mineral content of soil in the USA has depleted  85% of
the mineral content.  This is because minerals taken from
the soil by plants (food)  is not replenished to the soil.
There are 60 minerals deemed to be necessary,  to proper
health,  and only 3 minerals are put back by fertilizing.
Taking mineral supplements,  like copper and calcium
could make quite an impact.

[Colin2B]

Karen
Very sorry to hear your news. This is probably a question for @chris  but I did find summaries of recent studies that suggest valve deterioration is not such an issue. See what you think.
There is no doubt that the procedure is far less invasive than other surgical treatments and offers a substantial increase in quality of life.

Just a point about K vitamins mentioned. K comes from the German for clotting/coagulation and these vitamins can interfere with anticoagulants, which I assume you might be on.

http://www.acc.org/latest-in-cardiology/articles/2017/07/19/15/42/fifteen-years-of-tavr-where-are-we-now
http://www.tctmd.com/news/3-years-post-tavr-valve-performance-holds-steady-and-most-mortality-noncardiac-france-2

[evan_au]

I'm sorry to hear about your condition.

I would be careful about Joel Wallach. It seems he is a bit suspect:
https://www.quackwatch.org/01QuackeryRelatedTopics/DSH/colloidalminerals.html

[jeffreyH]

It seems I have came to the end of being able to control my heart valve issues with medicine and I cannot have another open heart surgery due to all my previous ones and co-morbidities. I also have a bicuspid issue that is a culprit here. My Aorta has two stable aneurysms,  but the aorta valve itself has stenosis and is failing, it's regurgitating badly, causing me loads of grief, with breathing issues, and I am totally worn out trying to get from point a to point B. My angina has escalated again with Blood pressure meds not controlling everything.   There is no coronary artery disease which is in my favor.. I take good care of myself..but needless to say my defects have progressed and now my the valves are fowled and narrowing far to fast..  My Doctor does not believe I have another 6 months. The rate of closure has sky rocketed in six months.  In a year I jumped from a 17 to 30  on the closure scale and that was november. Between November and March I shot up over 60.
I understand I need to have this procedure to be able to live.  I am going down to Standford again 14th and 15th of May two weeks to be evaluated for this procedure.  I am according to my Doctor an extremely high risk for open heart surgery so my only alternative is the "Tavr" procedure.  If I can pass my evaluation.
 So I have watched the procedure but have a few questions. And would like more detailed info before I go down to hospital.   I understand that the biological valve either pig or cow or whatever only lasts between 3 to five years before it starts deteriorating.  Five year study I read 54 percent of people were dead at 5 year check others were in various states of deterioration and failure... But those patients on average were 74 years and older. I am 57. Seemed the older folks valves held up longer then the younger folks...  So One Of my questions is will they monitor the progression of the valve and if it starts to fail can it be replaced again or can it only be done 1 time? Is it just this procedure can only be done 1time.  Can a regular open heart be done at the point of deterioration if comorbidities are improved?

You need a big hug and don't stop laughing because it keeps you positive.

[Karen W. (OP)]

Thank you guys.  I was born with three congenital heart defects one being my bicuspid valve.  All my vitamins seem to be in good order.  My cardiologist tells me the failure is due to the aging bicuspid  valve.  And that it is not due to heart disease as They say my arteries are clean as a whistle. 
I am beyond any further medication helping other then what I am already on, according to him. I am in the critical stage on the gradient for valve closure. Thanks for the hugs. 

I have just stopped typing for 30 minutes of again.. It's been racing like crazy. With Afib...  I really would like to find out about newest studies in UK about how long your valves are holding up in this procedure.  You all have been doing this procedure for a lot longer then the Doctors here in the states have been doing it.  if anyone has any stats that would be good.  I am plenty nervous, but I know it's this or nothing and only 6 months give or take before it goes.

[Colin2B]

Nervous! I’m not surprised.
This is the UK health service site which gives the considered, evidence based recommendations for treatments. It’s worth looking at the openings of each main paragraph first as it gives a feel for the risks and expectations. It’s worth noting that the TAVR patients were considered high risk for surgical replacement SAVR. Hope it helps.
Hang on in there, we are all thinking of you and wishing you the best

https://www.nice.org.uk/guidance/ipg586/chapter/4-Efficacy
Also see the next page on safety

[chris]

Hi @Karen W. Sorry to hear that your disease has accelerated. Bicuspid aortic valve is reasonably common (1-2% of the population), and one consequence is valvular disease with stenosis and regurgitation along the lines you describe.

Your symptoms are most certainly directly a consequence of the high cardiac workload imposed by the valve incompetence (leakiness) and the restricted outflow. Pushing a higher than normal blood volume (because some is leaking back with each beat) through a narrower than normal valve is greatly increasing the demands on the heart and also leading to an over-full ventricle, which will ultimately (as it progresses) lead to worsening cardiac failure. This is probably going to increase the risk of atrial fibrillation too for various reasons.

You have angina because the heart is having to work so hard to push the blood out through the diseased valve, so its oxygen demand is high, but downstream of the valve the systemic pressure is probably too low to push the blood down the coronary arteries to perfuse the heart adequately. Hence you are in a vicious cycle, because poor coronary flow (despite normal arteries) is starving the heart of oxygen, reducing its pumping capability and making the failure worse.

It sounds to me like you have limited options and should probably bear this intervention in mind. Let's hope that they are willing to do it, because your quality of life will improve enormously if the valve can be replaced. The failure (which is why you feel exhausted) and the angina will immediately improve.

All procedures carry risk, but because this one (TARV) is "endovascular" - conducted from within the blood vessel space itself - it is lower risk than an open-chest procedures and has much improved healing / recovery times.

You - and the valve performance - will be closely monitored non-invasively afterwards. If the valve does deteriorate then that does not count you out of other procedures subsequently. In fact, if your general health improves because cardiac function is better, then you become a better candidate for other interventions. This procedure might therefore be regarded as a bridge to further interventions later. I would ask the team who assess you about this when you see them.

I wish you the best of luck.

[RD]

... Dr Joel Wallach ...

is a veterinarian, see  ... http://skepdic.com/wallach.html

[Karen W. (OP)]

Nervous! I’m not surprised.
This is the UK health service site which gives the considered, evidence based recommendations for treatments. It’s worth looking at the openings of each main paragraph first as it gives a feel for the risks and expectations. It’s worth noting that the TAVR patients were considered high risk for surgical replacement SAVR. Hope it helps.
Hang on in there, we are all thinking of you and wishing you the best

https://www.nice.org.uk/guidance/ipg586/chapter/4-Efficacy
Also see the next page on safety

Thanks Colin... I will read those also.  I appreciate your sentiment. Thank you all.

[Karen W. (OP)]

Hi @Karen W. Sorry to hear that your disease has accelerated. Bicuspid aortic valve is reasonably common (1-2% of the population), and one consequence is valvular disease with stenosis and regurgitation along the lines you describe.

Your symptoms are most certainly directly a consequence of the high cardiac workload imposed by the valve incompetence (leakiness) and the restricted outflow. Pushing a higher than normal blood volume (because some is leaking back with each beat) through a narrower than normal valve is greatly increasing the demands on the heart and also leading to an over-full ventricle, which will ultimately (as it progresses) lead to worsening cardiac failure. This is probably going to increase the risk of atrial fibrillation too for various reasons.

You have angina because the heart is having to work so hard to push the blood out through the diseased valve, so its oxygen demand is high, but downstream of the valve the systemic pressure is probably too low to push the blood down the coronary arteries to perfuse the heart adequately. Hence you are in a vicious cycle, because poor coronary flow (despite normal arteries) is starving the heart of oxygen, reducing its pumping capability and making the failure worse.

It sounds to me like you have limited options and should probably bear this intervention in mind. Let's hope that they are willing to do it, because your quality of life will improve enormously if the valve can be replaced. The failure (which is why you feel exhausted) and the angina will immediately improve.

All procedures carry risk, but because this one (TARV) is "endovascular" - conducted from within the blood vessel space itself - it is lower risk than an open-chest procedures and has much improved healing / recovery times.

You - and the valve performance - will be closely monitored non-invasively afterwards. If the valve does deteriorate then that does not count you out of other procedures subsequently. In fact, if your general health improves because cardiac function is better, then you become a better candidate for other interventions. This procedure might therefore be regarded as a bridge to further interventions later. I would ask the team who assess you about this when you see them.

I wish you the best of luck.

     Thank you Chris.. You have answered the questions that I have been so worried about. As you stated, patients for this procedure here are generally extremely high risk  for undergoing a regular open heart surgery.  They mentioned scarring from my previous open heart surgeries, as being one of the issues, as well as my weight, and other health issues.  Being diet controlled  diabetic, and kidney issues as well as lungs etc. He said that I fall into a critical risk for regular open heart valve replacement.   I leave Monday in the early AM,  to drive 5 Hours 30 minutes To the city. Palo Alto in order to arrive arrive by 2:00 P.M. , in radiology for the lower body scan. Then, Tuesday early A. M.  For blood panels and pulmonary function tests,  then meeting with surgical team to see if they will be able to do it.  I tried finding answers to my main worries about second replacement after the new valve fails,  because I feel young and don't want this to be it.. I have been struggling more then ten years now.. And finally there is a procedure that looks promising if I make it through the procedure. It was how long will the valves have been lasting..I had read things that said it could only be done once but what you say makes more sense, because of it improving my situation..it can potentially improve things and put me into a better position to do the other procedures aneurysms etc......  I was worried about the aneurysms being a problem to pass the catheter through. I was worried that the aorta
was so thin there it could cause a puncture.  I am wondering if it will put more pressure on my aortic wall where the two aneurysms are, or if it will help decrease the pressure.  Upper aneurysm in arch is 4.6 lower 3.6 approximately.  You nailed everything my cardiologist said about current problems..  Not getting enough oxygenated blood to organs etc...  Heart is struggling to work.  I was able to watch procedure several times, but It was still hard to see what they were actually doing... Would you have a better link to a surgery I could watch.  I take it the valve is not stitched in from what I have seen..  Do you know if it's just set in and left or anchored somehow by the metal sheath like piece that is built around the valve.... ??  Thank you Chris...  Your answers are very helpful, and ease my mind quite a lot.

[Karen W. (OP)]

... Dr Joel Wallach ...

is a veterinarian, see  ... http://skepdic.com/wallach.html

        Thanks Rd,
 I saw that also.. Some time ago... Thanks for reminder. I hope your well.

[Karen W. (OP)]

I can't tell you about that procedure.   However,  I was diagnosed
with a moderate leaky aortic valve a couple years ago.  I had read
that vitamin K2 had been shown to successfully reduce hardening of
arteries, calcium build up in mice.   So I thought I would take it,  probably
could not hurt.  So I took "Super K" available from  life extension
website.   I mixed a cut open capsule with a tablespoon of olive
oil or fish oil,  daily.  I did that for months religiously.  Then I was retested
and found to have no aortic leakage.   Also pretty soon I read that
tests on people also showed reduction in calcium deposits in people
taking vitamin K.   So it would appear that it worked for me.   I still take
the vitamin K daily mixed with flax oil.   Also I take calcium supplements,
calcium aspertate daily.   It is counter intuitive, but Dr Joel Wallach says
that calcium deficiency is the cause of calcium deposits and heart
disease.   What is counter intuitive about it, is that lack of calcium
causes the body to rob bone of calcium and it is this calcium that
get deposited,  and cause hardening of valves and arteries.  Also
according to  him,  almost everyone is calcium deficient.   It probably
can't hurt for you to look into adding  vitamin K  and calcium to your
diet.   It sounds like you have progressed pretty far along the line
of calcium deposits,  and will need other measures,  but we  don't
really know,  and it won't hurt you to supplement with these things,
Actually most people are deficient in many minerals,   on top
of calcium and vitamin K.   If you want to  hear more about it,
you can check out  "Joel Wallach" on youtube,   and you can also
read his books,  the most popular of his books is "Dead Doctors
Don't Lie",  which you can also find info on,  at  youtube.com.
 

Thank you for your post.  I am glad you are doing better.  Do keep an eye on your valves regardless.  I have had calcium tests regularly and am fine, I was low once, but they retested me,  and it had something to do with my breast Cancer  and chemo therapy.  I have had new tests since and only been extremely D deficient,  but almost all Humboldt county people are.  My doctor got me onto massive doses, to get me caught up, and I am now in the good. I am now taking a maintenance dose. I am back up into the good zone as it was almost non existent.  Otherwise I am a firm believer in science and Doctors.  They have kept me alive since my birth, being born with multiple birth defects in 1960, at a time when I was blessed to have been put on the pretty new heart lung machine, and had major open heart surgery when I was 1 year old and only 9 pounds! I was a very sick baby..  My mom found me not breathing, after I had a heart attack. She scooped me up and slapped me repeatedly on the back... I finally caught my breath, and  she said I was totally blue. It scared her because over the 4 previous years she lost both my sister and a brother before me to crib death.  She thought it was happening again.... When she got me breathing  she climbed in the car, laid me on the seat, and sped to the hospital thumping me sharply on the back everytime I stopped breathing. We live in the boonies and our hospitals were not equipped to handle those kind of issues with heart. still are not. A plane was readied and I was flown about 400 miles to San Francisco, to a children's hospital, where they took me straight into surgery. I was in surgery for over 16 hours initially and I am told  that I was pronounced dead  three times. The final time the surgery was halted at closure. After the intern or attendant taking me to the basement morgue area, he saw me moving and ran me straight back to the OR. The Doctors hooked me back up to machine and began monitoring my vitals which were now going strong..  Apparently they basically finished the work and we're quite sure I was dead.  To the point they had already told my mom I was gone...  Since then I have been repeatedly saved by the medical community, and I hold them in high esteem.. And again now they have expected that I would not live these last ten years but through medicine good doctors good friends and family They have kept me alive to this point! Now in front of me again, I am hoping to have this new miraculous procedure that was not previously available to me earlier, to be a possibility for me to continue to live and enjoy my children, and grandchildren, and friends, loved ones. Each time I have been saved by new advances in medicine and extremely skilled surgeons and Doctors who put their careers out there and are constantly dedicating their lives to keeping people like me and you alive...    I am so grateful for them. Thank you for your post, and I wish you all the best also.

[Karen W. (OP)]

OK. BIG GOOD NEWS! MY ASSESSMENT WENT WELL AND YESTERDAY I RECIEVED MY ADMISSION DATE FOR The "TAVR" procedure. JUNE 7TH WITH SURGERY ON JUNE 8TH. AT 10:00 AM...looks  like I will be in for 4 or 5 days. He said usually two but he wants me to stay until they are quite  sure there are no issues with all the other problems and that will be doing well enough for a 6 hour drive back home. I am still nervous but very hopeful!

[Colin2B]

Excellent news. Hope all goes well

[chris]

Excellent news - although we, of course, expect a trivial think like heart surgery not to keep you from your forum duties at all over this time 

Do keep us updated on how things go...

[Colin2B]

....... of course, expect a trivial think like heart surgery not to keep you from your forum duties at all over this time 

That’s rather heartless of you

[Karen W. (OP)]

Not considering I have been so lazy on my duties!  Lol...  Thanks you guys.. They did tell me to bring in something to keep busy for 4 days... Lol... I will let you know how it goes.

[Karen W. (OP)]

Moooooooooooo!!!!!!!!!!!!!!!!  Mooooooooooo!!!!!