Questions and long introduction

[JudithD23]

Hi, I'm new to this forum, or forums of any kind. We just found out that my husband, Tom, needs OHS to replace his aortic valve, perhaps within the next one to three months. We knew of his aortic stenosis, but were very surprised, as was his MD, to find that his narrowing was progressing so rapidly. He has moved from moderate to severe stenosis in the past five months (1. does anyone have any ideas why some progress so rapidly?). Last August the MD said Tom may need surgery in anywhere from three to ten years, so you can imagine our shock.

So I've been doing some research online to find out what we should do. His cardiologist suggests that we can find an excellent surgeon right here in Sacramento (2. does anyone know of which hospital or surgeon in this area would be a best choice?). I know that one surgeon we'll be speaking to next week, Dr. Michael Ingram at Sutter Hospital, does about 200+ operations a year and Dr. Allen Morris at Mercy General does 300+. Both are listed as two of the three top heart surgeons in the Sacramento area. I've been asking questions about mortality/morbidity, etc. 3. But would we be better off going down to Stanford or UCSF. I've heard that Stanford has a great rating partially because they won't operate on very ill people. I also know that Mercy has a five star rating with Healthgrades; however I don't know how reliable Healthgrades is.

I think that Mercy does mostly biological valve replacements, suggesting that they could, at the same time, fix Tom's atrial fibrulation so that he won't have to be on warfarin for his life (as he is now for a-fib) and that the newer bovine valves are lasting up to 15 to 20 years if not longer. Tom will be 64 on Feb. 5th. And as of yesterday morning he was back in atrial fibrulation, maybe from the stress of impending OHS? After being in normal rhythm for almost two years after being cardio converted.

Our cardiologist is recommending Dr. Ingram at Sutter, and thinks that he will probably want to go with a mechanical valve.

What decisions we have to make, and any recommendations, information, guidance would be helpful. I know that I need to start researching heart valves and I've downloaded Adam Pick's book which is how I got here. It would have been a lot easier and more comforting if both surgeons recommended and used the same valve replacement; at least I think so.

So, thanks for the opportunity to learn from all of you and I hope you can give me some info.

Thanks, JudithD23

 

[JudithD23]

Questions and long introduction

I've already posted this in Heart section, so if you've read it there, I hope I'm not wasting your time. Thanks.

Hi, I'm new to this forum, or forums of any kind. We just found out that my husband, Tom, needs OHS to replace his aortic valve, perhaps within the next one to three months. We knew of his aortic stenosis, but were very surprised, as was his MD, to find that his narrowing was progressing so rapidly. He has moved from moderate to severe stenosis in the past five months (1. does anyone have any ideas why some progress so rapidly?). Last August the MD said Tom may need surgery in anywhere from three to ten years, so you can imagine our shock.

So I've been doing some research online to find out what we should do. His cardiologist suggests that we can find an excellent surgeon right here in Sacramento (2. does anyone know of which hospital or surgeon in this area would be a best choice?). I know that one surgeon we'll be speaking to next week, Dr. Michael Ingram at Sutter Hospital, does about 200+ operations a year and Dr. Allen Morris at Mercy General does 300+. Both are listed as two of the three top heart surgeons in the Sacramento area. I've been asking questions about mortality/morbidity, etc. 3. But would we be better off going down to Stanford or UCSF. I've heard that Stanford has a great rating partially because they won't operate on very ill people. I also know that Mercy has a five star rating with Healthgrades; however I don't know how reliable Healthgrades is.

I think that Mercy does mostly biological valve replacements, suggesting that they could, at the same time, fix Tom's atrial fibrulation so that he won't have to be on warfarin for his life (as he is now for a-fib) and that the newer bovine valves are lasting up to 15 to 20 years if not longer. Tom will be 64 on Feb. 5th. And as of yesterday morning he was back in atrial fibrulation, maybe from the stress of impending OHS? After being in normal rhythm for almost two years after being cardio converted.

Our cardiologist is recommending Dr. Ingram at Sutter, and thinks that he will probably want to go with a mechanical valve.

What decisions we have to make, and any recommendations, information, guidance would be helpful. I know that I need to start researching heart valves and I've downloaded Adam Pick's book which is how I got here. It would have been a lot easier and more comforting if both surgeons recommended and used the same valve replacement; at least I think so.

So, thanks for the opportunity to learn from all of you and I hope you can give me some info.

Thanks,

JudithD23

 

[briansmom]

Well, be prepared for quite a few opinions. First, let me assure you that OHS today is very safe and your husband should have a long life ahead of him. My son is only 17 so we went with a mechanical valve. If your husband has to stay on coumadin, I would still go with a mechanical for him, but if they can fix the a-fib then I would go tissue. I don't know much about a-fib so I'm not sure if that is really possible.

Whatever decision that you make will be the right one for your family.

 

[aussigal]

Hello and welcome to our world...this is certainly the best place on the web for finding support and information about valve replacement.

Although I dont know anything useful about the hospitals or surgeons in the USA there are many here who do.

From what I understand Tom is at a good age for chosing either mechanical or tissue valve. Either valve is probably a good choice for him. You say he is familiar with warfarin, hopefully it has been quite easy to get used to, and this wouldnt change if he were to be on it for lfe...A tissue valve does not guarrantee not having to continue on the warfarin or him needing it for some other reason such as the continuation of the A-fib. A mechanical valve with warfarin could be annoying to work around if Tom has other health issues that need constant attention. There are alot of things to consider.

There is lots of information on here about the choices he has to make...I hope you dont feel too pressured by either side of the argument as sometimes we get a little vigorous in our discussions about valve-choice.

again...welcome

 

[JudithD23]

Thanks for replying Deanne. Where did you son have his surgery? And how did you go about finding the surgeon?

Judith

 

[Karlynn]

Just wanted to say "welcome"! Ton gave you a good reply - I'll second it!

 

[briansmom]

My son's first surgery was an emergency and by the grace of God, we got a great team of docs. His surgery was at Sharp Memorial down in San Diego. We were able to plan his second surgery so I had time to pick a valve.

I have definitely heard great things about Stanford, but that does not mean that you don't have great surgeons in Sacramento. Sacto is a pretty big town.

 

[temp69]

U will be fine

U will be fine

and so will your husband! I used Dr. Laks at ucla here in la.
got an on-x valve.
see my post "four magic words"
i had the same problems and got fixed up good
now go forth and worry not too much, just enough, and they will take wonderful care of you and replace the valve.
the woman who did my echo today said the bovine and porcine valves are still good for older patients.
but for me, at 55, the on-x was a good choice. tick like a clock. and coumadin...not a big deal at all. takes a little getting used to, but so does everything.

good luck!

 

[Philip B]

Hi Judith,

Yes, you do have a lot of questions and it looks like you folks have begun to do a lot of research. These are good things.

Wow, your husband's original, defective valve lasted a good long time.

Regarding surgeons in the Sacramento area, I can't be of much help as my AVR surgery was done in Colorado (my wife was raised in Sacramento). One thing I would recommend is that you visit with the surgeons you are considering. Other forum members will no doubt be along shortly and many can offer excellent advice about the kinds of questions to ask when you interview the surgeons. One of the things I've noticed about many of us is that when we found the right surgeon we knew it and felt confident about the choice we made. You folks will feel right when you find the right one.

The valve choice thing is lots of fun and you'll undoubtedly hear a lot of different opinion from forum members. As I look at the research and practice, it's difficult to go wrong with whatever you choose. Most of us are happy with the valve choices we made regardless of whether the replacement is tissue or mechanical. You guys get to evaluate all of the different kinds of available replacements and choose the best fit. Again, once the choice is made you'll probably feel very confident about it.

Tissue valves seem to be a good thing for people who are younger and don't mind the prospects of facing another surgery when the replacement deterioriates. This type is also a good choice if the individual doesn't want to deal with managing coumadin. Tissue valves seem to work well for individuals who don't expect to live long enough to face another valve replacement surgery. Of course, if tissue is the valve of choice, one then gets to consider what kind of tissue valve is the best fit.

Many of us chose mechanical over tissue. While avoidance of additional replacement surgeries is not a sure thing with a mechanical valve implant, mechanical valves do have a good record of lasting a long time. Mechanicals are a viable option for folks who are attempting to avoid additional replacement surgeries and don't mind dealing with coumadin therapy. Just as choices are available with tissue, choices are available with mechanical. You'll see a range of mechanical valves in the discussions here. St. Jude and On-X valves are frequent topics here. By the way, a large number of us don't feel coumadin therapy is a big deal at all.

There are even wide differences of opinions regarding Adam's book amongst forum members. I have a copy and it helped my wife and I get our minds around my surgery last March. For better or worse, other forum members don't want anything to do with Adam's book.

We're a diverse group with lots of experiences, perspectives, and opinions. This said, you folks will have a difficult time finding a more supportive, understanding group of people who know exactly what you guys are facing. I'm confident we'll get you guys through this. Welcome aboard!

-Philip

 

[Susan BAV]

Hi Judith -

Welcome to the site; glad you found it.

Regarding valves going badly--evidently the usual occurence is that the worse a valve gets, then the faster it gets worse. Hope all goes well for your husband, Tom. Take care and post again.

 

[ALCapshaw2]

Welcome to our world Tom and Judith !

One of our 'Famous Sayings' is
"The Worse Things Get, The Faster They get Worse!"

This is especially true for the Aortic Valve.

The Bovine Pericardial Tissue Valves have a Proven Record approaching 90% durability ("freedom from explant") at 20 years when placed in patients over age 65 (or is it 60?). The 'new and improved' Bovine Pericardial Tissue Valves have an anti-calcification treatment that is hoped to extend that durability to 25 years or greater.

To my Engineering Mind, there are several significant improvements in the 3rd generation On-X Mechanical Valve which account for the lowest "morbid event rate" of any of the Mechanical Valves. See www.onxvalves.com and www.heartvalvechoice.com

Another common theme I see here on VR.com is to "Find a Surgeon with LOTS of Experience with the Procedure YOU will Need". While a large number of surgeries per year is a good 'basic' indicator, you really need to ask "How many Aortic Valve Replacements do you perform per year", and you may even want to add "with the Valve(s) I am interested in".

It is Wise to Have a Backup Plan "just in case" your first valve choice is not viable 'once the surgeon gets in there'.

My First Choice was a Bovine Pericardial Tissue Valve but I came home (several years ago) with a St. Jude (Masters Series) Mechanical Valve (1980's vintage design) because of damage that was not fully appreciated before the surgeon actually saw it.

Did the Doctor(s) say 'HOW' they proposed solving your Husband's A-Fib? I'm guessing a MAZE Procedure. Not all surgeons perform that procedure so you will want one with 'lots of experience'.

When I developed exercise induced A-Fib, my Cardiologist put me on SOTALOL (the Generic form of BetaPace) which supposedly 'targets' A-Fib. It works for me, with a very small dose.

I specifically told my Cardiologist I did NOT want to take AMIODARONE unless we had exhausted ALL other options because of the Laundry List of Dangerous Side Effects (to the Eyes and Lungs) from high doses or prolonged use of Amiodarone. Do a Search on VR.com to find considerable discussion of Amiodarone and read some of the 'stories' about 'undesired long term effects'.

Amiodarone is the SLEDGE HAMMER of Anti-Arrhythmics and is considered the medication of LAST RESORT which I 'understand' is proclaimed on the information sheet that comes with it.

'AL Capshaw'

 

[Swede]

Hi Judith,
First I want to say that in the end your husband will be in great shape with a valve a lot better than right now.
It is very normal with a lot of anxiety in regards to all the decisions to be made. I am in the same kind of situation and know exactly how you feel.
Most important is to realise that there are no bad decisions - the surgeon you choose will be very good - it is possible some are slightly better but it has a marginal effect. The valve you choose will also be good. Important I think is that the surgeon is comfortable with the choice.

I am right now deciding between a StJude and On-X to replace my porcine valve that has worn out. I now feel OK with the mechanical valve and have accepted coumadin as a part of life - if lucky it might not be necessary.

Since I found VR I have learnt a lot by browsing on the site and getting help from all the great members.
All the best.

 

[WayneGM]

I can't add to what's been said, but wanted to welcome you to the VR Community. Glad you found us.

 

[Mary]

Judith, I'm glad you found us!
A tissue valve at your husband's present age would be appropriate, but it's very possible he will continue to need an anticoagulant for the a-fib. How does he deal with it currently?
As Al said, frequently aortic stenosis becomes worse, quicker. Moving from the moderate designation to severe seems to be a common occurence. That's how it was in my own case.
Regarding your choice of surgeons, I would go with the very best one I could find. Will insurance coverage (in network/ outside network) be a consideration? I know it must seem daunting to think about at this time, but I think everything will fall into place before very long. Please keep us updated on what you learn.

 

[JudithD23]

Thanks for the replies.

I'm learning a lot from these posts. I see now I have to distinguish between OHS, bypass vs. aortic replacement and see how many the surgeon has done of the latter. That's so important and seems obvious, but I didn't think of it.

I also have to keep asking my husband how he's feeling every ten minutes!

Maybe we'll see about making an appointment with Craig Miller for a third opinion consult. My husband really wants to do the surgery closer to home especially since we think we have good surgeons here.

Anymore thoughts would be greatly appreciated.

Judith

 

[JudithD23]

Thanks for all the support and encouragement. I just told my husband he's got to get on this site.

Tom is currently on Tikosyn, similar to sotalol(sp), but newer. He had to stay in the hospital for the first four days as he started taking it. And then he was cardio converted since he didn't go in rhythm naturally. His cardiologist said that would have been the case with sotalol if it were coming out on the market now. He's been in regular rhythm for almost two years, but just went back into a-fib the other morning. When I say the heart surgeons may address the a-fib at the same time, this is the information I received from the cardiac nurse in the surgeon's office. We really have to see what the surgeon says when he meets my husband, studies the case, and sees the CD of the echo (I'm getting a copy to take with us to our meetings).

Tom's been living on warfarin for a few years now and if he goes with a mechanical valve I think he'll monitor it at home. He doesn't have much trouble doing that and while it may be inconvenient, he's doing it well.

It's so good to read your encouragement and start to believe that he'll be fine and feel better than he does now. I'm eager for the surgeon consultations to learn even more and develop a plan to go forward.

Is it worth traveling to a different city, say Cleveland, to find the surgeon? My husband is reluctant to do that for a number of reasons, especially since we thinking we have very good, competent surgeons in the Sacramento area.

Please bare with me, I'm sure I'm repeating myself left and right. Also, I've gotten in the habit of writing things like "our" heart valve decision, etc. Which I catch and quickly correct. I have to remember that Tom is going through this and ultimately the decisions will be his.

More thoughts will be so appreciated. And I'll continue to read the posts on this site.

Thanks, Judith

 

[marie]

Judith, I don't have anything to add but did want to welcome you to the forum and know that you will have lots of help with your questions. Good Luck Earline

 

[bbb]

Hello Judith,

Welcome to this site, you came to the right place. I am 6 weeks post-op and found this site and the members pricelessly helpful. The support, encouragement and information continues to be amazing!

I wanted to chime in about traveling for surgery. I live in the Southwest and had to take two airplanes to travel to Cleveland Clinic, as the most experienced surgeon for my particular surgery was there. I really would have done alot to be able to have surgery closer to home, as I have two young children. I did meet with a local surgeon and also sent my records for a second opinion to Cleveland Clinic. My feeling is if you can do it close to home, that is a first choice.

That being said, the route to go might be to meet with the best, most experienced surgeon you can find close to home. Then you can also pick a second choice surgeon, at one of the top hospitals...Cleveland, Mayo, etc. At least with a second opinion, you can then weigh that against your local surgeon's opinion, and even bring the second opinion back to the local surgeon and discuss it if necessary.

Once you begin the research and meet with surgeons, you will get a feeling for who will be the best surgeon. The #1 key is that you and your husband feel comfortable and trust the surgeon. As Al said, sometimes you can make one choice and things can change during surgery, so you want to feel that whatever the surgeon may need to do, you will feel comfortable with his choice.

Regarding travel, traveling so far away was certainly doable. I spent a total of 2 weeks in Cleveland, first in a hotel doing outpatient procedures, then 5 days in the hospital and 2 more days at the hotel before we traveled home. But again, if I could have stayed home, I would have.

Good luck with your choices and tell your husband there is light at the end of the tunnel. I am feeling great after 6 weeks, walking a mile a day and enjoying life.

all the best, Betsy

 

[ALCapshaw2]

First time Open Heart (or Chest actually) Surgeries are 'relatively easy' as Heart Surgeries go, primarily because everything is 'fresh', there is no scar tissue (unless from radiation damage), and the heart is still protected inside the pericardium. First time surgeries carry a 1% risk of Stroke and a 1% risk of Mortality on a national basis, Less with a Great Surgeon who does a LOT of the type in question.

That said, if you can find an experienced Local Surgeon, he should do fine. I had my ByPass Surgery done locally in a good regional hospital. When I needed AVR, I was referred to the University Hospital in my state which was probably a good thing given complications from radiation damage many years prior.

I would expect you could find outstanding surgeons in LA (Dr. Lax and Dr. Raissi at Cedars Sinai are frequently mentioned) and San Francisco (I don't remember those).

'AL Capshaw'