New here - Getting ready for surgery 10/21

[Bill B]

Bill, wanted to wish you a warm welcome and all the best for your surgery. Dr. Miller is wonderful. There are few Miller patients on this forum, they all vouch for him. I only met him for a consult once, and I asked him when he was going to retire, because I'd like to have my surgery done before he does : )

I hope you don't agonize too much about the choice of valve.

Best wishes for your surgery and recovery!

In my various jobs I worked with top-rated physicians in teaching hospitals, rounding daily with them for 10 years, then working in various clinical research ventures for the next 20 years in 100s of major medical centers around the country. Dr. Miller impressed me to no end. I'm very happy to have him do my surgery, and I understand why you feel the way you do about him.

Bill

 

[tobagotwo]

Bill, as for opinion, I totally agree with the approach to preemptively take care of the dilating aorta.

As far as a "less intensive coag" requirement for home testing (such as a lower INR), I can't imagine where he got that notion. As far as anything I've seen anywhere, "T'ain't so, McGee." INR is INR. It's better to do at home, but you're doing the same ACT.

There is genuine data for Carpentier-Edwards bovine valves and St. Jude porcine/bovine valves exceeding 22 years on average in older recipients. The reason there isn't data for 25 years is due to the fact that they haven't been around for 25 years yet. Over the last few years, it is becoming more common for people of your age to obtain biological valves, rather than mechanical valves. I'm 57, and just had a St. Jude Biocor tissue valve implanted three weeks ago.

Many doctors get much of their valve information from the salespeople they see. That is usually noticeable because of certain, fairly common, inaccurate notions that seem to pop up, that would seem to emanate from a common source.

However, there's nothing wrong with a mechanical valve, either (particularly the On-X). That also doesn't mean anything about how good a surgeon he is. He sounds like someone you can trust your chest with.

We're the worst people to ask about our own symptoms. People tend to either ignore/deny them or to frighten themselves into believing they have every one. It's likely that you do have symptoms, but have successfully adjusted to them. For example, angina often shows up not as pain, but a slight tightness at the top or base of the throat (in women especially, it can be jaw pain that actually sends them to the dentist). Nor does it always follow exercise. Some people ignore palpitations, or just think their heart is beating a little hard from some activity. The symptoms of AR and AS build up very slowly over time, and we usually assume they're just the slow result of wear, tear, age, and activity. Day by day, there's nothing to see. What may well happen is that a few months after the surgery, you'll suddenly realize how much the stenosis had really been holding you back.

At .7cm², you are well into the surgery window, so it's good that you're scheduled. I wish you good fortune with the path you have selected.

Best wishes,

 

[Bill B]

Bob H: THANKS!

I may have completely misunderstood what Dr. Miller said about "less intensive" ACT. I may be mixing it up with what I've read elsewhere (e.g., the On-x trials). Dr. Miller does not seem to be susceptible to medical sales people, one of which I was at one time. I just talked to one of his staff today, and they still shoot for standard INR and encourage home monitoring.

Dr. Miller does not appear to believe the data on extended non-reop periods with the newer bio valves. Most of what they install is St Judes mechanical. Because of my Ao dilation, I will need one of the valve-graft composites, which St Jude offers, but I believe On-x does not. This eliminates a suture line and is thought to reduce thrombosis.

As to symptoms and denial of such, I wish I had some to deny or adjust to. Zero, Nothing. Nada. I can walk the dogs uphill at a brisk pace and run up to the second floor. My left ventricle was just measured at 5.6cm, minimal hypertrophy, not the best EF at 55% but OK, normal diastolic function. Clean coronaries. Passed stress technetium scan with flying colors. Perhaps those years running sub-3 hour marathons paid off. Like I say, I've lead a charmed life. When I got the dx of BAV with moderate/severe stenosis, I was initially rather terrified and noticed every heart beat, lost sleep, etc. But nothing happened. So, other than cha-cha lessons, I can carry out a normal day, working on my 5 motorcycles and race car and helping friends work on their cars (I have lift in my garage). I'll spend 10-12 hours out there. It's rather grueling work, although not a huge CV load, but I feel fine, only normal tiredness at the end of the day. I've been quizzed repeatedly about denial. Regardless, I'm totally comfortable with doing surgery now rather than later. From what I've read, most patients have rather noticeable symptoms at 0.7cm. However, some people are fine until they have a sudden event. I don't want to be one of those.

I'm glad to hear you have bio valve. I have looked at Edwards and Medtronics but not St Judes bio. I will based on your comment. THANKS AGAIN!

Bill

 

[Ross]

This eliminates a suture line and is thought to reduce thrombosis.

This is precisely what my surgeon told me also. He wanted to use the On-x, but gave me a St. Jude CAVG404 instead. Plus, my aorta had already been grafted once, so the less seams stitched, the better.

 

[Lynlw]

I wonder if the fact alot of Dr Miller's patients are children plays any part in his thoughts on tissue. I'm not sure what there is not to believe about the data on the 20 for tissue, the numbers are what they are. and why many of the leading centers are using Tissue vlaves in younger (40 and up) patients. (well that and the fact the reop rates are getting much better)
I am not disagreeing with just was interested to hear "This eliminates a suture line and is thought to reduce thrombosis." about sewing on a graft,I don't recall hearing that before. Most surgeons I hear that prefer not to sew their own on talk about the extended time on bypass, but not extra chances of thrombosis down the road. It makes sense in a way, but never thought about it.

 

[tobagotwo]

Prior to starting up the St. Jude Biocor line in the US, St. Jude salespeople were notorious for using ancient data when describing the worthlessness of tissue valves (believe it or not, the On-X folks were [are?] even worse). They're now having some issues undoing some of their own, anti-tissue marketing, and didn't even put the Biocor on their website until quite a while after it was approved in the US. They brought in their Biocor line from Europe because the tissue market has expanded so greatly in the last few years that they could no longer afford to stand only on their mechanical valve business.

The St. Jude Masters Series Valved Graft is a well-respected and oft-used product, and has passed the tests of time. I wish On-X would get off their duffs and make a sleeved version as well, but it seems they have only themselves to blame that they haven't done it yet. The prospect of lower INR limits or non-warfarin ACT is something that would be a benefit to mechanical users. Like Lyn, I've not heard the suture line referred to as a clot liability, and that notion probably bears some scrutiny (again, this would be a good line for an SJ salesperson, as they are the only integrated version available). I've only heard the pump time concern before this.

There are people, notably bicycle racers, who routinely don't get symptoms until they are hypercritical. And a few like yourself. Your 55% EF is actually fine for a normal human. If your ventricular hypertrophy were to be allowed to continue, it would go up. Staying at 55% is either a sign of leakage (regurgitation, insufficiency) or of a heart that's not yet in trouble. You don't report any of the former, so - good. It means your post-op experience should be excellent.

If you ask your cardiologist, he will probably tell you not to lift heavy objects at this point, as it's not really safe with stenosis. The bike/auto work may put you in that position. Please do be careful.

Best wishes,

 

[Bill B]

I wonder if the fact alot of Dr Miller's patients are children plays any part in his thoughts on tissue. I'm not sure what there is not to believe about the data on the 20 for tissue, the numbers are what they are. and why many of the leading centers are using Tissue valves in younger (40 and up) patients. (well that and the fact the reop rates are getting much better)
I am not disagreeing with just was interested to hear "This eliminates a suture line and is thought to reduce thrombosis." about sewing on a graft,I don't recall hearing that before. Most surgeons I hear that prefer not to sew their own on talk about the extended time on bypass, but not extra chances of thrombosis down the road. It makes sense in a way, but never thought about it.

The suture line thing was from one of his staff who quoted a 10 fold reduction versus mechanical + separate graft, but he was quoting fairly high numbers (0.3%/yr vs. 3%/yr). The preference Dr. Miller stated for mechanical at my age sounded reasonable. In my family people tend to live into their mid 90s unless they get cancer. So, that's 30+ years. Say I do get the average 22 years Bob mentioned. That's reop at 83. Hmm...sure maybe that could happen; maybe new technologies will obviate it. Dr. Miller also told me some things about the Ross procedure in BAV, about which I had some interest as another option, that are not commonly accepted except perhaps at his center. They have extensive experience with it and I had to give some respectable weight to what he said. Anyway, the choice of bio versus mechanical is not cut-and-dried and at some point I will just have to make a decision.

Thanks to everyone for the excellent feedback.

 

[Lynlw]

Well, the good thing is what ever you choose is a good option. Luckily valve replacement is one of the things there aren't really any bad choices, unless you choose not to have surgery, the chances are you'll live a long happy life.

 

[Bill B]

There are people, notably bicycle racers, who routinely don't get symptoms until they are hypercritical. And a few like yourself. Your 55% EF is actually fine for a normal human. If your ventricular hypertrophy were to be allowed to continue, it would go up. Staying at 55% is either a sign of leakage (regurgitation, insufficiency) or of a heart that's not yet in trouble. You don't report any of the former, so - good. It means your post-op experience should be excellent.

If you ask your cardiologist, he will probably tell you not to lift heavy objects at this point, as it's not really safe with stenosis. The bike/auto work may put you in that position. Please do be careful.

Best wishes,

Hi again Bob:

Oh, I do have some regurg -according to the echo results moderate 2+. And I have been cautioned against heavy lifting by both the surgeon and cardiologist. I ask my buddies to lift the engine blocks by themselves. Most of my work effort is a matter of endurance and persistance against frustrating mechanical issues. I am certainly impaired, as the cha-cha lessons brought out, and I couldn't run 200 yards if I wanted to, let alone a marathon. But for common activities, which the cadiologist seems to use as an index, I am fine. So, I'm happy I can still do the things I love to do, but will save cha-cha lessons until after I recover from surgery. Today I was told that after recovery from surgery I will have no restrictions at all, as long as I am cleared by my cardiologist with a stress test. I didn't realize they consider this fix to be that good.

And thanks for the perspective on the valve industry. Having been in medical sales and research, I sure understand how this happens.

 

[Bill B]

Well, the good thing is what ever you choose is a good option. Luckily valve replacement is one of the things there aren't really any bad choices, unless you choose not to have surgery, the chances are you'll live a long happy life.

Thank you Lyn. That's a good point.

 

[ALCapshaw2]

From what I hear, Dr. Miller is one of the Top Aorta Surgeons in the Country.

You've got the valve data and seem to understand the issues.

You may want to do a search for "water hammer" to read the tales of a *few* members who have had strong "Pounding" heartbeats after receiving an integrated SJ Valve with conduit. My (engineering) guess is that they developed some sort of "mechanical resonance" that may or may not be related to length /diameter / heart-rate of the patient. Hopefully the studies their stories provoked will yield a better understanding of the issue.

EDIT: An easier way to read most of the pertinent posts on this issue is to look at the threads started by member "seth" who seems to have had the most severe case of this phenomenon.

'AL Capshaw'

 

[Lynlw]

From what I hear, Dr. Miller is one of the Top Aorta Surgeons in the Country.

You've got the valve data and seem to understand the issues.

You may want to do a search for "water hammer" to read the tales of a *few* members who have had strong "Pounding" heartbeats after receiving an integrated SJ Valve with conduit. My (engineering) guess is that they developed some sort of "mechanical resonance" that may or may not be related to length /diameter / heart-rate of the patient. Hopefully the studies their stories provoked will yield a better understanding of the issue.

EDIT: An easier way to read most of the pertinent posts on this issue is to look at the threads started by member "seth" who seems to have had the most severe case of this phenomenon.

'AL Capshaw'

Here is one of the threads about it, it was not just the integrated valves that people had the issue with. Some were the SJM and some were ON-X with a sewn dacron graft. I believe what they all did have in common was the dacron aorta section and the vast majority had mechanical valves. . http://www.valvereplacement.com/forums/showthread.php?t=29590

 

[Cozycat]

Bill, welcome to the most helpful site on the internet if you need a valve job. Everyone on here has had or has been a caregiver to someone who has heart issues. The best thing is that all the information comes thru unfiltered by study groups or statistics...from the horse's mouth so to speak.

I'm 68 and in February went with a St. Jude's mechanical aortic. No regrets and no problems with the warfarin. Since I rarely took any medications before except a daily vitamin, remembering to take it every evening was a challenge for a while but it has slowly developed into habit. I eat exactly like I did before surgery and once past the first 6 weeks, have been able to stay in range most of the time. I belong to an HMO and they don't support home monitoring, but their Coumadin Clinic is very good and the lab is open about 16 hrs a day so not too bad making that trip.

My surgeon said something similar to, yes the tissue valves are lasting longer and longer but there are no guarantees that yours would last 20 years and I didn't really want to think about having to go thru a second surgery when I was 80. You'll spend some time going back and forth about which valve and then your mind will latch onto one and you'll know it's the right choice for the individual you.

Glad you found us!

Midge

 

[skeptic49]

The suture line thing was from one of his staff who quoted a 10 fold reduction versus mechanical + separate graft, but he was quoting fairly high numbers (0.3%/yr vs. 3%/yr). .

Wow, Bill...your introductory thread sure has generated a great discussion. I too have not perviously come across this thrombosis concern with sewn grafts. I wonder where (whose study) these figures come from? Does this mean that patients with sewn grafts have a 3 percent overall post op risk of forming clots vs. only 0.3 percent with integrated valve/graft combos? Am I reading it right?

Jim

 

[Bill B]

Wow, Bill...your introductory thread sure has generated a great discussion. I too have not previously come across this thrombosis concern with sewn grafts. I wonder where (whose study) these figures come from? Does this mean that patients with sewn grafts have a 3 percent overall post op risk of forming clots vs. only 0.3 percent with integrated valve/graft combos? Am I reading it right?

Jim

Yep, that's what I heard. 3%/yr sounded wacky to me too. I thought mechanical on warfarain was 1%/yr, but honestly I've only scanned a few sources about any of these subjects, so I don't trust my knowledge at all yet.

Also, for Bob & Al - Seth's problem is certainly worth noting. I'm on the thin/small side and have always had a prominent heartbeat. Pens in a pocket over my heart will jump with my heartbeat. Also, I've always been able to hear my heartbeat as a rushing noise inside my ears. When I was just a little kid, it would drive me nuts - this is an interesting story....

When I was a kid I rocked myself to sleep every night. I used to whistle and rock my head from side to side until I fell asleep. When I was about 10, I decided I would have to stop this odd behavior - it wouldn't be acceptable in the army when I got older. So, I stopped. It was then that I first remember hearing this persistent rushing noise in my ears, and it drove me nuts, as I said. I didn't know what I was going to do. One night after suffering with this for a few months, I told my parents but they just gave me a puzzled look and told me to go back to bed. Then one day I noticed a story on the backside of the front section of the newspaper. It was about tinnitus. It seemed to be describing what I had (although actually it probably wasn't exactly right). I went, "Aha! That's it!" From that day on it never bothered me again. I can hear it all the time, but just knowing that it was some kind of medical condition and I wasn't a nut-case reduced it to a minor curiosity. I wonder what reaction I will have should I get "water hammer", thumping audible heartbeat or one of the other similar afflictions.. I'm hoping I'll be able to ignore it as I have learned to do with similar anomalies.

Anyway, you guys are just great. This place is a treasure-trove of information. I've been reading threads on what to take to the hospital, tips to make post-op easier, and dozens of other useful collections of insight, wisdom and information.

 

[davidswife]

Hi Bill, Welcome to the forum! I found this site just 10 days before my husband had his AVR with ascending aortic aneurysm repair and it has been invaluable. We both felt so much more confident going into the surgery because of all the information and support that we got here. I'm so glad that you found us all! Aside from all the knowledge you will gain, there is nothing like having the whole VR.com family cheering you on and praying for you pre-surgery, on the day of your surgery and all throughout your recovery. You are going to do great whatever valve you decide on.

Nadine

 

[Bill B]

Update: My first ever blood donation experience

I'm awaiting brain MRI results. I started a thread on that as I don't see much mention of it being done in BAV patients to look for brain aneurysms which one study indicates are 10% incidence.

Donated my first autologous unit today. I'll describe that as well, as it may be of some benefit to other newbies. The idea is to donate 2 units in the 45 days prior to surgery so you can hopefully get just your own blood during the operation. Also, I don't know if this is routine prior to AVR, but my surgeon insisted it was important that the donations be done "euvolemic", which means to maintain my blood volume by giving me back saline during the donation. Another equivalent term is "isovolemic". I knew this, but some of the personnel involved were unfamiliar with the term euvolemic.

This is a common practice but I was the only one in the blood bank getting this procedure, although they had done 3 others earlier that day. Everyone else was voluntary donors. Prior to the donation a finger stick (ouch) showed my hemoglobin was 14.6. Good. The nurse said the cut-off for allowing donation is 11. I shouldn't have any problem with the second unti in a couple of weeks, but I started taking iron a few days ago. It should start showing some effect in about 10 days. I'm taking about 200mg of elemental iron a day, about 3 times the usual OTC supplement level, but I believe from my pharmacy training that this is close to the proper dose. I didn't get a specific recommendation from my surgeon other than to take iron.

Anyway, all the other donors seemed very comfortable. They all were regulars. I have NEVER donated blood and don't even know my blood type. Plus I'm a needle chicken. They hooked the saline to one arm and collected the blood from my other arm, so I was kind of conspicuous and felt a bit like I was being crucified, with my 2 arms splayed out. Everyone else was rather blasé, but I felt a bit nervous and sad as this was the first concrete step to my impending surgery. I am completely inexperienced with being a "patient".

The nurse handling me was wonderful. She was very considerate and thoughtful and went out of her way to make sure I was alright. The whole procedure was very innocuous, but it was more the emotional background of really getting ready to have OHS that had me feeling off. I felt only the initial pin prick sticks. At one point there was an odd vibration around the needle on the blood side. The nurse said the needle was up against a valve in the vein and she had me do some squeezes that relieved that.

I drank a bottle of Sobe right before going in. I honestly don't think I needed the IV hydration. I felt absolutely fine after the donation but they made me stay recumbent for 20 minutes and then sit at a table eating cookies and drinking water for another 15 minutes. I actually felt more tired this morning than I do now. They said I might feel tired, and I expected that, but I actually have to use my imagination to say I feel any different at all. I'm headed over to help a friend bleed his brakes. I thought I might not be able to do that after the donation, but that has not turned out to be the case.

Second unit donation, October 8.

Bill

 

[Ross]

While I suppose there is nothing wrong with doing what your doing, most people simply have their blood cleaned and returned to their system via bypass machine. Of course, there are always a few people that do need blood after surgery, so it doesn't hurt. They must be doing things differently today. When I asked about it, I was told that I could bank my blood, but that there were no guarantees that I would be getting my own blood back. Doesn't much matter now. I've had about 6 pints since then.

 

[skeptic49]

That's interesting about your experiences donating blood, Bill. I was a regular donor for years but I can't donate now due to the ridiculous rules of the FDA.

Best wishes,

Jim

 

[Lynlw]

While I suppose there is nothing wrong with doing what your doing, most people simply have their blood cleaned and returned to their system via bypass machine. Of course, there are always a few people that do need blood after surgery, so it doesn't hurt. They must be doing things differently today. When I asked about it, I was told that I could bank my blood, but that there were no guarantees that I would be getting my own blood back. Doesn't much matter now. I've had about 6 pints since then.

FIRST I agree with what you said about the need/or lack for blood these days. BUT I don't know why they told you that about your own blood, IF you give a auto donation that blood should have tags with your name on it and goes to you first. THEN IF you don't need it and all the tests are fine, it would be released to the general blood bank, so it doesn't get thrown out. It should also work that way for any direct donors you might have, (friends family ect, but honestly the banked blood is probably better than some direct donors, since sometime family friends, shouldn't donate, but are too embarrased to admit, their blood might have something worng so just keep their mouths shut and donate)

They USED to always need 1 unit of blood to just prime the bypass pump, but they don't anymore, so most people don't need any blood.