Early tissue valve failure. Anyone else? (Also have complex issues w/ meds.)

[Catie]

A warm hello!

I've returned, because I learned this week that the bioprosthetic valve I received during surgery at CC in late 2016 is failing quickly. I wonder whether there may be someone here who has needed to walk this path.

My cardiologist says there is no way to find out what is wrong with the valve. (i.e, is it calcified, is there pannus, etc.?) I have a little lead time before I'll need another surgery and will have another echo in six months.

Emotional support during this journey would be very valuable to me and I hope to offer the same. Unfortunately, I suffer from very high anxiety, even in the best of times.

I want a mechanical valve once surgery becomes a necessity. Unfortunately, I have a full-page list of medications and supplements that cause my upper stomach/esophagus to burn. I did a two-week trial of enteric-coated baby aspirin, summer of 2016. The burning that set off took two weeks to resolve. I had post-operative Afib and took warfarin for 3-4 months. However, it caused stomach pain, which eased soon after I stopped taking it. My cardiologist thinks I need to find a world-class gastroenterologist, in hopes that the long-standing gastro issues can be resolved.

 

[Paleowoman]

Hi Catie,

Sorry to hear your valve is failing and that you'll need a re-do.

Have you had a transoesophageal echo (TEE) ? When my cardiologist thought I would need a re-do three years post AVR as the pressure gradients across my valve were so high, I had a surgical assessment with a cardiac surgeon who ordered a TEE so that they could see if there was anything wrong with my bioprosthetic valve - they were looking for calcification and pannus etc but found the valve was actually fine. They can see a valve much, much better with a TEE than with a regular echo.

If you have had a TEE, is there a reason why they can't ascertain if there is calcification, pannus etc ?

It's at least good you have some lead time to find out more.

 

[pellicle]

Hi
and welcome back (sorry about the circumstances

A warm hello!
I've returned, because I learned this week that the bioprosthetic valve I received during surgery at CC in late 2016 is failing quickly. I wonder whether there may be someone here who has needed to walk this path.

there was one fellow in particular who suffered a short time with his valve; Jarno
https://www.valvereplacement.org/threads/tissue-valve-failing-after-6-months.40490/

he has since not been active here ...

My cardiologist says there is no way to find out what is wrong with the valve. (i.e, is it calcified, is there pannus, etc.?) I have a little lead time before I'll need another surgery and will have another echo in six months.

I second the idea of getting TEE done as there are good diagnostics available which could likely inform ... perhaps even inform a different cardiologist if you're unsatisfied with the one you are seeing. It never hurts to get a second opinion.

Emotional support during this journey would be very valuable to me and I hope to offer the same.

understood ... I'm sure its a difficult thing to face, but having faced it already you know what it is and that you emerge well and life goes on. I had a situation similar in a way with the infection which emerged from my 2011 surgery in 2012 ... that was far more prolonged in recovery than my actual OHS ... in time it will be behind you.

I want a mechanical valve once surgery becomes a necessity.

logical ...

Unfortunately, I have a full-page list of medications and supplements that cause my upper stomach/esophagus to burn.

I'm sure it can be managed

... I had post-operative Afib and took warfarin for 3-4 months. However, it caused stomach pain, which eased soon after I stopped taking it.

I've heard of that occasionally but if there was no bleeding then perhaps it was actually a reaction to the dyes used in warfarin rather than warfarin itself.
https://onlinelibrary.wiley.com/doi/pdf/10.1002/clc.20554
worth examining, also so too is your diet.

Whatever happens you know there are kind and wise people here on this forum that (while not here every day) will eventually observe your story and provide good alternatives to any obstacle.

Keep your spirts high and I advise reading from the Stoics like Aurelius or Seneca and my good old mate Epictetus

https://www.brainyquote.com/authors/marcus-aurelius-quotes

https://www.goalcast.com/2019/03/15/seneca-quotes/
https://www.goodreads.com/author/quotes/13852.Epictetus

 

[KSS]

A warm hello!

I've returned, because I learned this week that the bioprosthetic valve I received during surgery at CC in late 2016 is failing quickly. I wonder whether there may be someone here who has needed to walk this path.

My cardiologist says there is no way to find out what is wrong with the valve. (i.e, is it calcified, is there pannus, etc.?) I have a little lead time before I'll need another surgery and will have another echo in six months.

Emotional support during this journey would be very valuable to me and I hope to offer the same. Unfortunately, I suffer from very high anxiety, even in the best of times.

I want a mechanical valve once surgery becomes a necessity. Unfortunately, I have a full-page list of medications and supplements that cause my upper stomach/esophagus to burn. I did a two-week trial of enteric-coated baby aspirin, summer of 2016. The burning that set off took two weeks to resolve. I had post-operative Afib and took warfarin for 3-4 months. However, it caused stomach pain, which eased soon after I stopped taking it. My cardiologist thinks I need to find a world-class gastroenterologist, in hopes that the long-standing gastro issues can be resolved.

I agree. I think a TEE would tell more. If you do need another replacement of the 2016 valve, could it be done through TAVR? I know a lot of the surgeons purposely put in larger size valves to accommodate a future valve-in-valve replacement.

 

[pellicle]

could it be done through TAVR?

A lot will hinge on Caties age

 

[DebbyA]

Hi Catie--
I understand your dismay--not even 3 years with the valve! My first (porcine) valve had to be replaced after 6 years. I was 60 for the first replacement.
My basic message is -- you'll be fine. One of my neighbors is a cardiac surgical nurse. She told me I'd be amazed how much improvement in handling the surgery I'd see even after 6 years, and I suspect improvement has continued. Honestly, after almost 5 years, the thing I remember the most is how awful my roommate's family was. But in a way that was good for me, because I was out walking the halls a LOT!
I hope you can get your upper stomach/esophagus issues resolved. Have you gotten a referral for a good gastroenterologist?

 

[trinitymcdermott]

In addition to what others have mentioned above, i agree with your cardiologist that getting the HI issues under control with a solid gastro is essential. I wonder if the bacteria helicobactor pulori (h.Pylori) could be to blame. It is easily treatable, but first needs to be diagnosed with a simple blood test. Gastric issues and warfarin do not play well together as the risk of a severe gastrointestinal bleed is higher. In addition to a good gastroenterologist, maybe seeing a naturopath that is experienced in gut healing and perhaps a blood test that can tell you which foods may be contributing to your gut inflammation. Just throwing out a few ideas based on personal experience.
You’re in good hands here.

 

[Catie]

Thanks very much, everyone, for your kind words and thoughts and for sharing some possible steps as I find my way forward.

Paleowoman, was your valve also showing stenosis on your echo? The cardiologist was alarmed that my aortic valve area had gone from 1.7 to 1.3 in a year. I appreciate your suggesting a TEE. I asked him whether an MR or CT could give us more clues and he said we could consider one when I follow up with him in six months. I've been driving an hour to see him, because of encountering two sub-par cardiologists close by. But I think I'll seek a second opinion soon and can bring up the TEE there.

Pellicle, yes, I think a second opinion is in order. I recall that you have endured tremendous ordeals, though I'd need to review your threads. My heart goes out to you and I'm thankful you survived to share your experiences and knowledge. Aside from rare flareups, it's always been medications that ignited the stomach burning. What blows my mind, is that topical applications affect my stomach--so drugs/supplements seem to affect me systemically. That's an interesting thought about the dyes in warfarin rarely causing skin rashes. I asked once whether Coumadin could be compounded and the answer was no. I did see that an injectable version has returned to the market.

Hi KSS, my current thinking is, that if my body or internal chemistry, or whatever, has managed to damage a wonderful tissue valve to this degree in three years, that it would be likely to do the same to a wonderful tissue TAVR valve. Unless the stomach issues resolve, I can't take the required aspirin. (Did enteric-coated baby aspirin trial, summer of 2016, for a heart surgeon. I had to stop at two weeks, due to the burning, which lasted another two weeks.) You can't get a TAVR without ability to take the antiplatelet drug plus aspirin evermore.

I'm 60.

DebbyA, I'm sure sorry you needed a new valve after only six years. That's super early. I'm less worried about the surgery than about what may follow, either with my stomach or complications. I had a slew of complications and ER visits in 2016/17 after surgery.

Trinity, thanks. We ruled out h pylori years ago. I have seen a string of gastroenterologists since 2010 when all this started and none has been able to help. My current gastro quipped, "Lots of people have sensitive stomachs." But lots of people don't have sensitive stomachs that could kill them. I always feel the burning high up. Might be upper stomach, but I think of it as esophagitis, when the burning revs up and remains. I don't suffer from eating particular foods, only from taking medications, except for very rare separate flareups. No intestinal issues at all. But I can't even take a benadryl or cold tablet. Sure--I'm acutely aware of the bleeding risks with warfarin and stomach issues, should they turn into erosions.

My insurer doesn't require a referral, fortunately. The challenge is to find a gastroenterologist who won't be the same as the others and have nothing to offer. I need to find a specialist's specialist someplace.

 

[Paleowoman]

Paleowoman, was your valve also showing stenosis on your echo? The cardiologist was alarmed that my aortic valve area had gone from 1.7 to 1.3 in a year. I appreciate your suggesting a TEE. I asked him whether an MR or CT could give us more clues and he said we could consider one when I follow up with him in six months.

Hi Catie - my bioprosthetic valve area was never measured post surgery - just remembered it was measured at two years, it was 1, now it is 0.76. That's smaller than the valve area of my bicuspid aortic valve at surgery. My pressure gradients have steadily risen since surgery which alerted my cardiiologist that there was something 'wrong', it was 33 peak immediately post surgery and is now 59 peak, 35 mean. That could be regarded as a sign of "stenosis" and two years ago my cardiologist initially thought that I was going to have re-do surgery very soon and referred me to a cardiac surgeon - but it actually isn't 'stenosis' in the true sense of the word as the valve is not calcified nor does it have pannus, and the valve leaflets are fine and working fine. The reason my pressure gradients are so high is because the valve area of my prosthetic valve is too small in relation to my body size, I have moderate patient prosthesis mismatch. That explains why I never recovered to my pre-surgery levels of fitness. Until the prosthetic valve leaflets degenerate the cardiac surgeon will hold off on surgery.

I have echos now done by a cardiologist who does what they call here an "expert echo" - I need that as regular echo technicians find it vey difficult to visualise my valve due to wires and scar tissue, the cardiologist doing the expert echo is pretty good at seeing the valve so I don't have to have repeat TEEs.

I've had both CT and cardiac MRI and neither show the valve leaflets in the kind of detail that a TEE shows.

 

[Protimenow]

Catie:

When you described your symptoms, an idea came to my head (an astonishingly rare occurrence). It sounds as if the medications that you take aren't reaching your stomach before they dissolve. Is it possible that a sphincter between your esophagus and stomach (and I'm not a physiologist, so I may be talking out of an orifice that I won't name here) is not letting the pills down and they're dissolving in, or slightly above, that sphincter (the valve that closes after you swallow)9gastroesophageal valve)? Solid food is heavy enough to make its way into your stomach. Liquids can fairly easily make their way into your stomach. But small, lightweight pills don't - they collect at the bottom of the esophagus and dissolve there, causing burning, tasting terrible, and perhaps causing other possible injuries.

Have you tried putting the pills inside a small piece of bread, then swallowing the bread? It doesn't have to be a big hunk of bread - just a package large enough to get into your stomach before sticking in your esophagus. You've probably had gastroscopy in the past - but did the person doing the gastroscopy look at the bottom of your esophagus and see if there's damage or some issue?

Anyway - I'm not a physician. I'm not an anatomist. Do what you wish, and certainly mention this to your doctor if you wish.

If there's a way to diagnose - and possibly reverse - this issue, you may be able to proceed with surgery when you need it.

 

[newarrior]

A warm hello!

I've returned, because I learned this week that the bioprosthetic valve I received during surgery at CC in late 2016 is failing quickly. I wonder whether there may be someone here who has needed to walk this path.

My cardiologist says there is no way to find out what is wrong with the valve. (i.e, is it calcified, is there pannus, etc.?) I have a little lead time before I'll need another surgery and will have another echo in six months.

Emotional support during this journey would be very valuable to me and I hope to offer the same. Unfortunately, I suffer from very high anxiety, even in the best of times.

I want a mechanical valve once surgery becomes a necessity. Unfortunately, I have a full-page list of medications and supplements that cause my upper stomach/esophagus to burn. I did a two-week trial of enteric-coated baby aspirin, summer of 2016. The burning that set off took two weeks to resolve. I had post-operative Afib and took warfarin for 3-4 months. However, it caused stomach pain, which eased soon after I stopped taking it. My cardiologist thinks I need to find a world-class gastroenterologist, in hopes that the long-standing gastro issues can be resolved.

Man I get your anxiety--3 years--scary

 

[Catie]

Hearty thanks to you all!

Paleowoman, I appreciate your taking the time to share these details about your journey, your valve, and the way you follow up on it. It encourages me to know that in your case there was another explanation for the "abnormal" (for lack of a better word) echo. You've had your valve about five years? I've been completely unfamiliar with TEEs and it's helpful to know leaflets can be better visualized with that test.

Protimenow, thanks for your thoughts--I guess anything is within the realm of possibility to explain a portion of my issues. I do have a hiatal hernia. But, I had a swallowing test a year ago and a pill went right down while they watched. One of the most perplexing things is the way my stomach is adversely affected even when I've applied a quantity of Vitamin D3 or magnesium or iron or zinc to my skin (creams, patches, liquid versions). The whole matter is very perplexing.

Hi Newarrior, yes, it is.

There's a lady cardiologist about 25 minutes away whose bio says she specializes in reading echos and she enjoys working with women who have valve issues. She may be the right person to tag for a second opinion. I had piled a slew of heart-related papers onto a high shelf, thinking I wouldn't need them for a long time. I'll try to organize my records and make a call. Continuing to ask contacts whether they know a superb gastro dr.

 

[pellicle]

Hi Catie, I'd meant to reply to this bit earlier, but got distracted

What blows my mind, is that topical applications affect my stomach--so drugs/supplements seem to affect me systemically.

this is actually pretty normal. Indeed topical applications are quite a valid method of getting things absorbed into the body (Voltaren quickly springs to mind).
https://www.tandfonline.com/doi/full/10.1080/03007995.2017.1352497

Some toxins are rapidly absorbed via skin and minor doses can be fatal (some of the bad ones even cross latex glove barriers).

Indeed the gut is still technically outside of your body (and a marble swallowed just gets a free trip through the canal).

Its entirely possible (as suggested above) that there is a gut microbiome issue at work here.

Best Wishes

 

[Paleowoman]

Paleowoman.........You've had your valve about five years? I've been completely unfamiliar with TEEs and it's helpful to know leaflets can be better visualized with that test.

Early next year the valve will be six years old. But all the ‘panic’ with cardiologist thinking I would be having re-do surgery imminently was when the valve was three years old. I have had an extremely loud murmur since valve replacement which makes the valve sound stenotic so that along with the high pressure gradients led him to think surgery was imminent. I continue to have echos annually, sometimes six monthly, as the valve could degenerate more quickly due to the high pressure so a special eye is kept on the valve leaflets.

There are lots of forum members here who have had TEE’s. It is the standard and only way to get very good views of the heart valves. I am astonished that your cardiologist didn’t suggest it. It’s not a particularly pleasant procedure, at least the thought of it isn’t pleasant. I had mine done under general anaesthetic so it didn’t bother me at all.

Btw, I used to have a hiatus hernia and duodenal ulcer many years ago. I was able to 'control' the hiatus hernia with diet by competely cutting out refined foods, I only ate wholefoods and no processed stuff. Then, when those two Australian doctors, I've forgotten their names, discovered that stomach/duodenal ulcers were actually caused by bacteria, I had two weeks of high dose antibiotics which finally got rid of the ulcer.

Here's a link to info about the TEE: http://www.heart.org/HEARTORG/Condi...raphy-TEE_UCM_441655_Article.jsp#.XckQJq2cbrk

 

[Catie]

Pellicle, thank you for your observations and the link. I'll try to review that article more fully in a bit, and some of the citations look interesting, as well. In my mind, the topical approach used to sound safer for gastric tissues. Your article implies that they *should* be and mentions that percentages of the topical med traveling through the system are far less than by oral route.

Paleowoman, thanks so much again. I realize they're quite different, but the TEE doesn't sound any worse than an upper endoscopy. The prospective cardiologist's site I viewed a couple days ago said they do theirs in a hospital setting. Yeah--it may be a heads-up to me, that my cardiologist didn't recommend the TEE.

I realized the panic with your valve occurred at the three-year mark--my antennae were up, since that's the same point I'm currently at, lol. I understand the need to keep a close eye on your valve and I'm so thankful things were and are much better than they first appeared!

It's wonderful that you found a way to relieve your stomach symptoms. Complete avoidance of processed food was quite an undertaking, I'm sure. Gratefully, I've never had an ulcer. Many years ago there were some erosions. My last scope was in 2015 and only a bit of esophagitis was found. I'm pretty sure that's when I had the last test for h pylori also. I can no longer take proton pump inhibitors and H2 blockers for any length of time.

 

[Paleowoman]

Hi Catie - They always do TEE’s in hospital settings, it’s always done by a doctor, a cardiologist too. It would be similar to endoscopes you’ve had so you are familiar with that kind of procedure - all the more reason a cardiologist would recommend one to view your prosthetic valve.

I won’t touch proton pump inhibitors or H2 blockers. Twice doctors have wanted me to take them and I refused as I know I need my stomach acid. Everyone does - it’s not there by mistake. The mistake is having reflux/hiatus hernia, it's that which needs to be dealt with as the acidity of the reflux will damage the oesophagus - I appreciate sometimes people need relief from this but the reason for the reflux should be robustly addressed too rather than just giving symptomatic relief. Once a respiratory consultant wanted me to take a proton pump inhibitor because he mistakenly thought I had reflux causing cough….once he’d seen a CT of my lungs he realised the cough was, in fact, due to small airways disease (for which I now use an inhaler), so I’m doubly glad I refused to take the PPIs.

When I was given high dose antibiotics for duodenal ulcer I did not have a test for H Pylori because that was in the days before the test was standard. I’d read in the paper about the discovery of bacteria causing ulcers by those Australian doctors, Barry Marshall and Robin Warren, and showed the article to my GP - this was in the days before the internet was ubiquitous - and I asked him if he could give me antibiotics for my ulcer from which I was often getting sharp pain. GP told me to telephone him “in three days” and he would let me know. He was obviously going to do his own research. Three days later he said yes and I got the prescription and within TWO weeks my ulcer symptoms resolved and have never returned, almost 30 years now.

I’m still careful with my diet because I have diabetes so I stick to a low carb Paleo way of eating which is fantastic and which is also very good for my gut, but I need stomach acid as it’s an important part of the process of protein and fat digestion. And I have osteoporosis, diagnosed well before adopting the Paleo way of eating, but medications such as proton pump inhibitors interfere with mineral absorption as we need stomach acid for that or we go short of calcium, magnesium etc.

Talking of H Pylori and stomach acid. One of the important actions of stomach acid is to kill bad bacteria - bacteria is on all our food, and our mouths have the hugest variety of bacteria living there too, so it’s good that harmful ones are killed by the acid (when people take proton pump inhibitors one of the side effects can be bacterial overgrowth in the intestines due to the bacteria in the stomach not being killed). H Pylori defends itself from stomach acid by burrowing into the mucus lining of the stomach and by neuralizing the acid around itself - so I wonder what happens when a person lowers their stomach acid with proton pump inhibitors ? Does that make a more favourable environment for H Pylori ?

I digress from your thread about your valve, sorry. Do let us know how things go with your prosthetic valve !

 

[Catie]

Paleowoman, it sounds like you educate yourself extremely well about any afflictions you suffer. And it's a feat that you held your ground about not taking the PPIs--physicians seem very enamored of that class of drug. Plus, it's wonderful that you sought and received the antibiotic cure for the h pylori, thereby eliminating your ulcer!

So good to hear you've found an optimal diet to control the diabetes, as well! You raise good questions about an acid-deficient environment and h pylori. Don't know those answers...

One of my gastroenterologists argued with me about this, but I think 10 years on Prevacid led to early osteoporosis, in my case.

I'm trying to re-organize stacks of records I didn't expect to need for years, and will prepare an updated written history on the stomach and heart issues. I had recently discarded a stack of online research on local cardiologists, thinking I was all set... Argh!

Now that I'm nearly a week out from that fateful cardiology appt., I'm thinking his bedside manner was a bit lackluster this time. "What did you do, take a lot of vitamin D and calcium?" he immediately asked, upon reporting the echo results. Saying we could only learn more about the valve from an autopsy didn't win me over, either.

 

[Paleowoman]

Now that I'm nearly a week out from that fateful cardiology appt., I'm thinking his bedside manner was a bit lackluster this time. "What did you do, take a lot of vitamin D and calcium?" he immediately asked, upon reporting the echo results. Saying we could only learn more about the valve from an autopsy didn't win me over, either.

What !?! I would run a mile from a doctor who makes those kinds of remarks !

 

[Agian]

I say, he might benefit from a good slap across the back of the head.

Duke of Texas, sort his shite out.

 

[pellicle]

I say, he might benefit from a good slap across the back of the head.

By your leave your Highness