New Member here

[wryan]

Hello everyone, I'm new on the forum although I've have been lurking for about a month or so. Recently found out that I would be needing AVR. Searching on the internet led me to this site which has really educated me on what is happening inside my body and what I have to look forward to pre-op and post-op.

Anyways a little background. Had rheumatic fever as a child which left me with a heart murmur. Now 54 years old and have been showing symptoms for a while now. Fatigue, lightheaded constantly (although I have never passed out) and trouble concentrating are what I feel are my main symptoms. No angina as far as I know since I don't really know what angina feels like as opposed to gas pains.

Had an echo about 2 months ago. Conclusion were: mild left ventricular hypertrophy; aortic valve is heavily calcified; moderate to severe aortic stenosis present.

AVA is 1.0 cm2; AV Vmax is 3.98 m/s; AV maxPG is 62.65 mm/Hg and AV meanPG is 38.30 mm/HG; I think these are the important numbers. One of my questions is are they really all that bad? I also had a angiogram which showed that there are no blockages in my arteries. The cardio was also unable to pass the catheter through the AV in order to take any measurements. After trying for what seemed like 20 minutes he stopped trying. He also decided to keep me overnight saying he had fiddled with the valve quite a bit and wanted me to stay for observation.

Anyway that night in the hospital a surgeon came to talk to me and told me that the fact that I am getting lightheaded and dizzy means the condition is serious. I have the opinions of two cardiologists and one surgeon that feel I need to have the valve replaced.

I am scheduled for surgery on Jan 5th and have chosen to go with the CE Magna valve. I had initially leaned toward the ON-X on the recommendation of the surgeon but was never really comfortable with the decision. After talking it over with the cardiologist I decided on the tissue and for whatever reason felt more at ease with the tissue even though I know it may need to be replaced in 10/15 or 20 years.

I'm still torn over whether I am making the right decision on the surgery and the valve. I am scared as is my family.

I have found some comfort from this website and look forward to hearing any of your comments.

Thank you

 

[kfay]

Hi and Welcome. I can't help you with your numbers, but if you are experiencing symptoms and you've consulted several Dr's and they all agree, I would go ahead and get it taken care of if I were in your shoes. Valve selection is a very personal thing and if you weren't originally comfortable with a mechanical valve for whatever reason and are more so with a tissue valve, then good for you. Don't let someone sway you to what works for them and their life. At 54 if you eventually have to face a second surgery, the risks will be about the same as this first one, which are very low around 1-2%.

It's normal to be scared. We all were! Most of us found that this time before surgery was much worse than the actual surgery and the time after. Luckily, you don't have a long time to wait. Try to relax and enjoy the holidays. If you have any questions, ask away.


kim

 

[Lynlw]

Welcome, I agree with everything Kim has said. yes I would think it is certainly time to have your surgery based on your numbers and symptons and the fact the doctor couldn't even get thru your valve
As for valve choice or any decisions you have to make, honestly the best advice I can give is listen to your gut. I've had to make alot of tough scarey decisions for Justin, a couple times even deciding to go to a new hospital or surgeon, and a couple times I was not comfortable and kept 2nd guessing so changed the plans (even which surgeon/hospital to go to) and when we switched I felt more at ease..and it worked out well.
Who knows what the options will be when your valve needs replaced...hopefully a long time from now. Quite a few places are recomending tissue valves for their patients in their 50s and 40s, so there is nothing wrong with that choice. If it makes you feel more at ease, it is probably the right decision for you.
Ask any questions, most likely someone had the same experience

 

[wryan]

Thank you both Kim and Lyn for your responses. Even though my surgeon initially recommended the ON-X, he seemed to be confident that a transcatheter procedure may be perfected by the time I need replacement of the tissue valve.

 

[ALCapshaw2]

Welcome to our World W.R. !

Your feelings and reactions are right on target for someone who has just been told that he needs Heart Valve Replacement

Many Cardiologists and Surgeons use 0.8 cm sq as their 'trigger point' for recommending surgery.
Your symptoms and gradients are also of concern. I am in the "Sooner is Better" camp when the risk is Low and there is NO other way to FIX the problem. If you haven't already discovered, First Time Valve Replacement Surgery has an extremely High Rate of Success with a 1% risk of morbidity and 1% risk of mortality on a National Average. Those numbers are even lower with Very Experienced Valve Replacement Surgeons at High Volume Hospitals. Don't even think about your prognosis if you were to NOT replace your diseased valve. (Most surgeons would probably say just a few years, tops.)

One of our Famous Sayings is: "The Worse it Gets, the Faster it Gets Worse".
This seems to be especially true for Aortic Stenosis so it would be wise for you to be interviewing Surgeons to find someone you are comfortable with. Good Surgeons like to Fix your problem before there is permanent damage to your heart muscles and walls. Chamber enlargement is an early sign of such damage. If cautht early, this can will usually correct itself (Hence my belief that Sooner is Better).

There is NO Perfect Replacement Valve. EVERY Valve has it's positive and negative attributes. Most patients who make their own choice usually choose a Valve whose negative aspects they feel they can best live with. As long as you make an Informed Decision and your Surgeon agrees, you should do fine.

Let us know how things go for you.

Best Wishes,

'AL Capshaw'

 

[Lily]

Welcome to the site Scared is normal. I was wondering about a couple of things though and I hope you'll forgive my curiosity: Did the cardio explain why he couldn't get the catheter through the valve? Was it related to the rheumatic fever damage or scarring? Have you considered consulting with more surgeons or are you limited in Tucson? Does your surgeon have an extremely high percentage of success with patients in your situation, with your diagnosis? Sorry if the questions are too intrusive or worrisome. I'm by no means any authority, being only a patient myself, but I wondered about a couple of those things. You have my best wishes; please keep us posted

 

[DebbyA]

Welcome to the forum! Everyone else made such good points, I don't have much to add. There used to be quite a few from Tucson on the forums. If you start another thread with Tucson in the title, you may get them to chime in. (They might anyway, but since it's the holidays and your date is so close, it's worth a try if you're interested.) It's normal to be scared, but a lot of us felt calmer as the day approached. The most likely outcome is that you'll be feeling a lot better in a month or so, so start making plans that look beyond the surgery date.

Have a good holiday, and be sure to keep us updated.

 

[Mentu]

Ryan, I, too, think that surgery sooner is better than waiting. I was 59 last year when my Cardio told me that it was time for surgery and for several days I felt certain that he would call back to say that he had been mistaken. We focus sometimes on valve area but probably the pressure gradient is more significant and yours is now significant considering that it should be close to zero. I experienced similar symptoms to those you speak of and in the few weeks between first meeting my surgeon and the AVR they became much worse. Don't wait.

The very good news, Ryan, is that surgery is unlikely to be too much of a problem for you; it is likely to go much better than you imagine right now. In this past year and a half, I've come to think that experiencing unpleasant symptoms during the run up to surgery is somewhat helpful during recovery. After your valve is replaced, you will very likely be struck by how much better you feel. I could tell a great difference within moments of first waking up after leaving the ICU.

At this point, however, it is very normal to feel that the world has gone a little strange and to wonder if it really is as bad as they say. It is also normal to worry about surgery and even to get angry that this is happening to you. You are not alone, Ryan; we have felt those same emotions and shared your experiences. As for your choice of valve, I've come to think the most important issue is that you must feel comfortable with your choice whichever type you finally decide upon. Ryan, take care and let us know how things are going.

Larry

 

[escargome]

Hi wryan,
Just a quick welcome to the forum. I don't have too much other advise to add to what others have said. Whichever valve you choose is a good choice. Not making an informed choice would not be so good.
I had AV replacement at age 56 (bovine valve) and I never looked back. So just keep us updated as time approaches and ask any and all questions. Most folks on this forum will answer with their experience which calms a mind in a million ways. I will keep you in my prayers.

 

[wryan]

Thanks to all for the encouraging words. It has been an emotional roller coaster for me and my family. I've read about the 7 steps of grief and see similarities during my roller coaster ride.

The cardio that performed the cath. tried inserting progressively smaller probes into the AV with no success. The way he explained it to me was that when we think of area we may think of a circle or square with a precise shape or outline. The valve area is something that is calculated based on other measurements and typically not a circle or square. It can be very irregularly shaped and for this reason he feels he was not able to penetrate it. From what I saw on the monitor it seemed like he was trying to thread a moving needle from two feet away.

I have only talked to the one surgeon. My cardio told me I should find a surgeon that I had confidence in and was happy with. Dr. Sethi is the surgeon I talked to the evening I spent in the hospital and I instantly felt comfortable with his concern, bedside manner and capability. I had expressed my concern with mechanical valves and he suggested the ON-X since there are ongoing trials using reduced anticoagulant levels and if I went with the ON-X that I may be able to eventually go to a reduced INR level or even Plavix and aspirin but this all depended on the outcomme of the study.

At a later appointment I asked his feeling on implanting a tissue valve and he was said it was all about what I was comfortable with and he did not want me spending one minute after the surgery regretting this decision. We talked at length about what the future held as far as the possibility of reduced anticoag levels for the ON-X and the possibility of transcatheter replacement of the tissue valve when/if the time came. He suggested the CE Magna for the tissue valve and I like what I am reading about it.

Are there any opinions as far as other/better tissue valves than the Magna ? I would like to hear if anyone has any suggestions. By the way, the evening I saw Dr. Sethi in the hospital he mentioned his biggest concerns were the pressure gradients and the fact that I was always feeling lightheaded and dizzy. He said for this reason I should have the surgery as quickly as possible.

 

[ski girl]

Welcome Ryan! I agree with what has been said - basically:
1) you'll have to get this fixed eventually or you'll die from it, which would be silly because it's VERY fixable
2) numbers from an echo aren't 100% reliable for the reasons you just mentioned, they're all calculations of something that has an irregular shape - so choose the time based on the presence of symptoms, not numbers
3) get the surgery BEFORE you do damage to your heart

Sounds like it's time for you!

I had AVR in October with a Carpentier-Edwards bovine perimount valve. There have been some studies suggesting these valves will last 15-17 years, I think I saw that somewhere on the Cleveland Clinic website - so you may want to ask your surgeon about that.

GOOD LUCK from down under!

 

[Philip B]

Newbie?

Newbie?

Welcome! As noted in many of the previous posts, much of what you are feeling is normal. Any kind of OHS tends to bring people in touch with their mortality.

Tucson... I was in Tucson on Tuesday and rode the mtn bike trails at Fantasy Island. It was a good ride. I actually managed to stay upright throughout the course; that's really big for me. I may return to the area this weekend (maybe Sunday) with my wife to check-out Sabino Canyon. We're just up the road at Casa Grande.

Feeling some uncertainty about valve choice is also pretty normal. Keep in mind that there are no bad valve choices when the valve is going to save your life. As was also noted in previous posts, every valve has advantages as well as drawbacks.

There are no guarantees with any valve. This said, since joining this forum, I've seen very few posts from people who actually get the fifteen to twenty year estimated longevity from tissue valves. There are of course advantages to going tissue; longevity just doesn't seem to be one from what I've seen, but keep mind that this is simply a personal perspective based upon what I've seen posted here. The choice you make is a very personal decision and you need to be comfortable with what you decide.

-Philip

 

[Greg a]

Ryan / wryan , a heart felt WELCOME to our OHS family glad you are getting the information that you are seeking and there is swealth of knowledge here for the future .....
a list of acronyms and short forms http://www.valvereplacement.org/forums/showthread.php?27412-Acronyms

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

 

[AgilityDog]

Wryan, the only thing I'll add to this thread is that a little anti anxiety med between now and surgery date can be a good thing. Also can be good for a few weeks afterwards depending upon how you are feeling emotionally.
Been there, done that, twice.
You will feel so much better after surgery! My second surgery went so well it's actually hard to believe it was less than 5 months ago!

 

[Jkm7]

Wryan,

Some excellent comments have been made. I just want to add welcome....happy you found us but sorry for the reason.
I had two OHS in four years and the emotional aspect cannot be ignored. It is difficult for most of us and there seems to be a lot of agreement the worst part of this experience can be the wait for surgery.

Wishing you the very best and hope you'll find comfort and support here to help you through.
I felt a lot of support here getting through my second OHS a little less than 3 years ago.

 

[wryan]

Thank you all for the kind and supportive comments. I've just returned from out of town and had a very nice visit with my family. My mother passed away 6 years ago but I still have my dad, 5 brothers and 3 sisters. We all went through the full range of emotions. We laughed, we cried and we prayed. We were all raised to trust in the Lord.

I think I will take Laurie's advice and ask about anti-anxiety med as I'm still having a tough time with the anticipation. I can't imagine what its going to be like the night before the surgery.

 

[ALCapshaw2]

Many of our members report a Sense of Peace just before their surgery as they accept their fate and are comfortable with their choices. Hopefully you will find this same sense of peace also.

Best Wishes,

'AL Capshaw'

 

[normofthenorth]

Two basic additions to the great advice you've already gotten, wryan:

FWIW, in my Angiogram/catheterization, they never tried to get the probe through my AV. Instead, they went in one artery AND one vein, both in my groin, side-by-side. Since the main job of the cath is to squirt "die" (X-ray contrast medium) into your heart vessels (esp. coronary arteries in my case), I haven't figured out the main purpose of squeezing the little hose through the valve opening. If it's for direct pressure readings, they got upstream and downstream readings from the TWO probes by doing it "my way".

Secondly, about tissue-valve longevity and other reasons to choose one tissue valve over another. There are some general "high-level" considerations that may not be obvious. E.g., valve "design" is evolving, and newer ones are PROBABLY better than older ones (durability, hemodynamics, maybe ease of implantation). BUT if you're looking for a valve with a proven track record for durability (say 10 or 15 or 20 years), it won't be a new valve!! In the "grey area", you may be happy with an evolutionarily improved version of an old established design, on the assumption that they didn't make it any worse with the latest tweaks.

The established tissue valves I've seen the best durability and hemodynamics studies on, are the Medtronics Hancock II "pig" valve (which I just got) and the Carpentier-Edwards Perimount "cow" valve (which you're probably about to get).

When it comes to hemodynamic performance (not durability), the best and newest study (2007) shows a ~12% advantage to the CEP, at least the new "Magna" version. Whether or not that matters depends on who you ask. It's MUCH more likely to be important if you need a SMALL valve than if you need a BIGGER valve. I got a 27mm AV, and my surgeons have told me that there's no way I'll ever notice the theoretically missing area or the theoretically added pressure-drop. (Of course, they're biased, because they're all committed pig-valve people!) If you want to see the study, it's at ats.ctsnetjournals.org/cgi/content/full/83/6/2054#TBL3 . (My own surgeon's the 4th listed author, but he's not too damned pleased about or impressed with the results, because he lost the bet!)

As far as DURABILITY, the most thorough and impressive (and hopeful!) study I've seen was just published in The Annals of Thoracic Surgery by another team at Toronto General, including the "boss", Tirone David. The title is "Hancock II Bioprosthesis for Aortic Valve Replacement: The Gold Standard of Bioprosthetic Valves Durability?" Unfortunately, normal people can't get the full text online without springing US$25. I got a full fax copy from my surgeon's office, and I think it's very impressive and helpful, including for a CEP "customer". In addition to presenting the data on their 1100-odd pig-valve recipients, sliced several different ways (the DATA! ), it ends with several pages of "Comment" comparing these TGH results for the Hancock II, with all other published results for long-term durability of other tissue valves, including the CEP. They seem to try to compare apples-to-apples, and point out that most other studies report "freedom from explant" as a key measure of success -- but they shouldn't, because patients who are too frail to have OHS don't get "explants". These TGH authors distinguish between ""freedom from explant" and the more meaningful "Freedom from SVD (Significant Valve Deterioration)", which they wish everybody would report.

The CEP doesn't have any reported 20-year durability yet, because it's a bit newer than the Hancock II (and the CEP Magna is even newer), but they compare the reported results up through 15 years with their own results. The comparison is consistently one-sided, in favor of the Hancock II. E.g.,

Banbury and colleagues reportd [CEP's] durability up to 15 years. . . . The freedom from explant due to SVD was 77% at 15 years and was highly dependent on patient age. These numbers are similar to those reported by Smedira and colleagues. . .
In our series of Hancock II valves, patients' mean age was only 2 years older than in the Banbury series, and the freedom from SVD (not explants dure to SVD) was 86.6% at 15 years, almost 10% higher. The superiour durability of Hancock II at 15 years is also apparent in younger patients when compared with CEP.

Referring to a CEP study by Aupart and colleagues, they conclude "the Hancock II again comes [out] ahead on durability, particularly in patients aged younger than 70 years."
Finally, they discuss a recent (2010) study by McClure and colleagues on long-term outcomes of 1000 CEP recipients. ". . . they reported a freedom from reoperation due to SVD at 15 years of 34.7% in patients younger than 65 years and 89.4% in patients aged 65 to 75. The freedom from SVD for the Hancock II at 15 years was 80.7% +/- 2.6% for patients younger than 65 and 99.0% +/- 4.2% for patients aged 65 and older."

The differences seem very striking to me -- e.g., the huge difference between those last two pairs of "freedoms", even though the Hancock numbers are presented as the more conservative "freedom from SVD" rather than the misleadingly optimistic "freedom from explant"!!

These numbers all justify the authors in referring to the Hancock II's longevity as the "gold standard" in the field.

Of course, it's possible that the wonderful surgical and post-op team at the TGH, or Ontario's wonderful no-orphans Obama-eat-your-heart-out health-care system are responsible for these "gold standard" results, and not just a great valve. It's impossible to tease out all those factors -- although they do point out 3 other long-term studies of the Hancock II (from Italy and maybe elsewhere) with very similarly impressive results.

But on the face of it, I think the evidence shows that the CEP Magna has great hemodynamics, significantly better than the Hancock II (and a short track record so far), and that the Hancock II has great durability, significantly better than the CEP and every other tissue valve.

I still occasionally bump into Internet statements (I thought one was on a "sticky" here, though I can't find it now) suggesting that the cow valves last maybe 5 years longer than the pig valves, despite this evidence. If anybody can tell me why either of my conclusions is NOT based on the evidence, please do.

As others have said, there's no "bad" valve, other than the one you've got now. And the valve YOUR surgeon is comfy sticking in YOUR heart is definitely a GOOD valve! But if you like making choices based on evidence, that's how I read the newest and best evidence. And like so many things in this @#$% area, even IT doesn't all point in the same direction!!

 

[neil]

ryan welcome aboard,which ever you pick is the right one for you ok,good luck.....from a porky pig

 

[ALCapshaw2]

Two basic additions to the great advice you've already gotten, wryan:

FWIW, in my Angiogram/catheterization, they never tried to get the probe through my AV. Instead, they went in one artery AND one vein, both in my groin, side-by-side. Since the main job of the cath is to squirt "die" (X-ray contrast medium) into your heart vessels (esp. coronary arteries in my case), I haven't figured out the main purpose of squeezing the little hose through the valve opening. If it's for direct pressure readings, they got upstream and downstream readings from the TWO probes by doing it "my way".

Secondly, about tissue-valve longevity and other reasons to choose one tissue valve over another. There are some general "high-level" considerations that may not be obvious. E.g., valve "design" is evolving, and newer ones are PROBABLY better than older ones (durability, hemodynamics, maybe ease of implantation). BUT if you're looking for a valve with a proven track record for durability (say 10 or 15 or 20 years), it won't be a new valve!! In the "grey area", you may be happy with an evolutionarily improved version of an old established design, on the assumption that they didn't make it any worse with the latest tweaks.

The established tissue valves I've seen the best durability and hemodynamics studies on, are the Medtronics Hancock II "pig" valve (which I just got) and the Carpentier-Edwards Perimount "cow" valve (which you're probably about to get).

When it comes to hemodynamic performance (not durability), the best and newest study (2007) shows a ~12% advantage to the CEP, at least the new "Magna" version. Whether or not that matters depends on who you ask. It's MUCH more likely to be important if you need a SMALL valve than if you need a BIGGER valve. I got a 27mm AV, and my surgeons have told me that there's no way I'll ever notice the theoretically missing area or the theoretically added pressure-drop. (Of course, they're biased, because they're all committed pig-valve people!) If you want to see the study, it's at ats.ctsnetjournals.org/cgi/content/full/83/6/2054#TBL3 . (My own surgeon's the 4th listed author, but he's not too damned pleased about or impressed with the results, because he lost the bet!)

As far as DURABILITY, the most thorough and impressive (and hopeful!) study I've seen was just published in The Annals of Thoracic Surgery by another team at Toronto General, including the "boss", Tirone David. The title is "Hancock II Bioprosthesis for Aortic Valve Replacement: The Gold Standard of Bioprosthetic Valves Durability?" Unfortunately, normal people can't get the full text online without springing US$25. I got a full fax copy from my surgeon's office, and I think it's very impressive and helpful, including for a CEP "customer". In addition to presenting the data on their 1100-odd pig-valve recipients, sliced several different ways (the DATA! ), it ends with several pages of "Comment" comparing these TGH results for the Hancock II, with all other published results for long-term durability of other tissue valves, including the CEP. They seem to try to compare apples-to-apples, and point out that most other studies report "freedom from explant" as a key measure of success -- but they shouldn't, because patients who are too frail to have OHS don't get "explants". These TGH authors distinguish between ""freedom from explant" and the more meaningful "Freedom from SVD (Significant Valve Deterioration)", which they wish everybody would report.

The CEP doesn't have any reported 20-year durability yet, because it's a bit newer than the Hancock II (and the CEP Magna is even newer), but they compare the reported results up through 15 years with their own results. The comparison is consistently one-sided, in favor of the Hancock II. E.g.,
Referring to a CEP study by Aupart and colleagues, they conclude "the Hancock II again comes [out] ahead on durability, particularly in patients aged younger than 70 years."
Finally, they discuss a recent (2010) study by McClure and colleagues on long-term outcomes of 1000 CEP recipients. ". . . they reported a freedom from reoperation due to SVD at 15 years of 34.7% in patients younger than 65 years and 89.4% in patients aged 65 to 75. The freedom from SVD for the Hancock II at 15 years was 80.7% +/- 2.6% for patients younger than 65 and 99.0% +/- 4.2% for patients aged 65 and older."

The differences seem very striking to me -- e.g., the huge difference between those last two pairs of "freedoms", even though the Hancock numbers are presented as the more conservative "freedom from SVD" rather than the misleadingly optimistic "freedom from explant"!!

These numbers all justify the authors in referring to the Hancock II's longevity as the "gold standard" in the field.

Of course, it's possible that the wonderful surgical and post-op team at the TGH, or Ontario's wonderful no-orphans Obama-eat-your-heart-out health-care system are responsible for these "gold standard" results, and not just a great valve. It's impossible to tease out all those factors -- although they do point out 3 other long-term studies of the Hancock II (from Italy and maybe elsewhere) with very similarly impressive results.

But on the face of it, I think the evidence shows that the CEP Magna has great hemodynamics, significantly better than the Hancock II (and a short track record so far), and that the Hancock II has great durability, significantly better than the CEP and every other tissue valve.

I still occasionally bump into Internet statements (I thought one was on a "sticky" here, though I can't find it now) suggesting that the cow valves last maybe 5 years longer than the pig valves, despite this evidence. If anybody can tell me why either of my conclusions is NOT based on the evidence, please do.

As others have said, there's no "bad" valve, other than the one you've got now. And the valve YOUR surgeon is comfy sticking in YOUR heart is definitely a GOOD valve! But if you like making choices based on evidence, that's how I read the newest and best evidence. And like so many things in this @#$% area, even IT doesn't all point in the same direction!!

Thanks for that extensive Tissue Valve Comparison Report Norm. I don't recall seeing any of that data before
(but I confess I don't follow the Tissue Valve developments closely).

You may want to copy it and start a New Thread in the Valve Selection Forum, adding a more descriptive Subject Line.
I'm thinking this post would be a good one to include in the Valve Selection "Stickys".

'AL Capshaw'