About to take the AVR plunge

[Kenny F]

I was referred here by a message post on the ACHA site - this place is wonderful beyond belief!

I'm bicuspid, 45 yo, asymptomatic a year ago. Echo & Cath showed a very tight valve - pressure 67mmHG. I was sent home and told to come back in a year (which is now). I described some 'near fainting' experiences, plus extremely mild chest discomfort. Doc (Noel Hunt III, Chattanooga Heart Institute) says waiting 2-3 years would be mistake. After a weekend of reading books and surfing sites, I went back today armed & dangerous, with an extensive list of questions. I asked my cardio if he woke up tomorrow in my body and read my chart... what would he do? He said he would get it fixed, sooner than later.

So... I'm meeting the surgeon (Dr. Richard Morrison, widely regarded locally) Monday. I can't see a whole lot of reason to put it off a year or two, wife is supportive, I'm self-employed (Realtor) and winter is a good time to be down for a bit.

Now I'm doing the standard torn-between-valve routines that seems so popular My cardio seems to think the surgeon will want to go natural over mechanical. BUT, he also says nobody will be on coumadin in 5 years, so that should not be the issue. Interestingly, he noted that most surgeons do not consider repeat surgery an issue! He said he felt there was a lot of bravada on their part, tho.

Anyway, I know this is getting long but it's good to vent. Unless something pops up to stop me, I'm thinking December for my valve. Any ideas for my question list for the surgeon?

 

[Karlynn]

Welcome Kenny

Welcome Kenny

You've been doing your research. Don't need to give you the "be your own best advocate" speech.

We have people with "natural" replacements and people with mechanical. I think you'll find that, with a few exceptions, those of us on Coumadin don't find it to be that big a deal on a daily basis. There are occasions when it becomes a concern - such as surgeries and extensive dental work when we need to stop the Coumadin for a short time, but on the whole most of us would probably say we'd rather be on coumadin than have to do repeats on open heart surgery. I've had my St. Jude mitral valve 12 years now with no issues. I'll be turning 45 soon. If I'd had a "natural" valve, I'd be either recovering from my second surgery or approaching it soon. Then again at 55 - 60 and then again 70 - 75 (God willing!). So throwing the dice, my doctors 12 years ago felt the better gamble was mechanical for me.

I chucked when I read that your Dr. said that surgeons don't consider repeat surgeries an issue. How stereotypical of surgeons.

I'll let the "naturals" speak for themselves. But you'll find that there are pros and cons on both types of valves. You'll just need to carefully weigh your doctors' recommendations, your own assessment of your life style and research the heck out of both options.

Welcome to the VR family - make yourself at home.

Karlynn

 

[tommy]

Kenny,

Welcome to the VR forum.

I can relate to the "sooner than later" conversation. You should feel a lot better after getting it "fixed".

I chose mechanical to avoid a second surgery. My surgeon was very confident that the tissue valve that he "installs" would last longer than the average. Ya gotta love a surgeon with confidence. I did. Either way there are no guarantees.

There's been a lot of chatter about a replacement for coumadin/warfarin. There's a lot of hope but also skepticism. A new drug is being tested but nothing has been mentioned about using it for valve replacements. I heard the five year story 3 years ago. It takes a lot of time for new drugs to get developed and approved.

Ask the cardio about several surgeons. You may find that some prefer particular valves and/or may have more experience with one valve. You decide, then don't look back.

Ask about a cardiac rehab program. I highly recommend it.

Stay tuned. I'm sure that you'll get a bunch more responses.

Again, glad you tuned in to VR.

 

[Nancy]

Hi Kenny-

Welcome to this terrific site. You've got friends here who understand and have walked the path before you.

My husband has had 5 thoracic surgeries, 3 valves and 2 lungs. I can say that each additional surgery takes its toll on the body. This is above and beyond the actual surgery which might have been done perfectly. So from your surgeons point of view, additional surgeries might not be a problem, for them.

With additional surgeries, there is more scar tissue and adhesions, as the body ages, it doesn't bounce back as well, and as you age with heart problems, you could be having another surgery when you could be more compromised than you are now. I do believe that there needs to be much more research done on the effects of repeat major trauma to the body.

This is all part of the decision making portion of having valve surgery. The body's reaction to additional surgeries as the body ages should be given careful weight. It is a significant factor.

Having said all of that, each one of my husband's surgeries was life-saving and necessary. He also has mechanical valves. Prior to his first valve implant, he couldn't have possibly known that all of these surgeries would be necessary later on in life.

So valve choice is very, very complicated, and very, very individual.

Coumadin is not much of a problem for my husband. He takes about 14 medications per day, so it's just another pill, and just another lab test among many he has each month.

I'm so glad you have done much research for your self. That is a BIG help. And I agree that getting it done sooner rather than later is the best policy.

Best wishes, and glad you joined the site,

 

[Kenny F]

Appreciate the response

Appreciate the response

Thanks to all! Being new to this, I couldn't find the word so used "natural"... thanks for the kind nudge Karlynn. I guess I mean biological!

My biggest stumbling block has been the 5 or so days of hospitalization. So it is hard for me to think of coming out of surgery knowing I will be going back in a decade!

I had multiple surgeries when I was 10-12 (thyroidectomy partial and total, radical neck dissection for thyroid CA) and currently take synthroid, calcitrol, Lescol, aspirin, calcium (Tums EX) and a vitamin everyday, so I figure throw another pill in the pot

I appreciate what Nancy said: it is life saving and necessary, altho not emergency in my case, it is inevitable. So I am just glad that it can be done. My kids are 25, 18, 14, 13 - kinda like to be around awhile!

Thanks again and I will keep scanning these pages for all of your hard-earned wisdom.

 

[Karlynn]

Kenny,
I kind of like the word "natural". Has a good ring to it. Covers all the different types of valves and is much easier to say than most of them. Feel free to keep on using it. I may!

Karlynn

 

[Kevin M]

Hi Kenny. Welcome to the clan.

Your symptoms sound like they may not be all that debilitating, but I found that after my surgery, I realized just how bad it was. The deterioration usually happens slowly and often, we don't really realize how tired we are or how much the other symptoms affect us. I found that almost immediately after surgery, my breathing and chest discomfort and several other symptoms disappeared right away.

Sooner is better than later. Not only because you'll feel better, but because you don't want your heart to enlarge or other damage to be caused by the problem.

You may wish to check with your doctor about interactions between coumadin and the other meds you are on, if you consider going mechanical.

A lot of people who really hate the idea of going in for another surgery will opt for a mechanical valve because they are so much more reliable and predictable in terms of their lifespan.

Some of us go with the biological valves because we do not like the idea of being on coumadin or for other reasons.

Have a good look at the risks and disciplines (lab tests, monitoring, diet) involved in coumadin use and if you do not feel they are a problem for you, maybe the mechanical valve if for you.

It sounds like the operation part bothers you quite a bit and you are already disciplined with taking medication.

On the other hand, if another operation doesn't bother you, then a biological could be an option.

The main thing to remember is that you will be able to live a healthy and full life no matter which you decide to go with.

Best of luck in making your decision. It's a tough one.
Kev

 

[fyrfytr]

Hey Kenny,
I too want to Welcome you to this Great Site. About questions to ask your surgeon, if you scroll down in this forum you will find a thread about Questions to ask your surgeon. In it Betty(bvdr) has some great questions to ask. I hope this helps you out. I hope everything turns out OK for you. Keep us posted.
Take Care

Dave
_____________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical

 

[rcatalano]

Welcome Kenny,

Interesting that the cardiologist said surgeons don't consider repeat surgeries an issue. Mine definitely did! He's been doing this for almost 30 years.

I had a tissue valve AVR when I was 31 years old. Then had repeat surgery in August (age 45) with a mechanical. So, my surgeons caution was that I don't want to do this a THIRD time.

I can also say, after reading my post-operative report, that he had to slice thru a lot of adhesions and scar tissue on the 2nd surgery.

Your cardiologist sounds like he's on the ball - much better to do the surgery a bit too early instead of a bit too late. You also sound like you have a good attitude about it. It will help you more than you know.

As for the tissue vs mechanical, study your options, make the decision you and your surgeon are comfortable with, then don't worry about it. You win either way!

Good luck!

 

[pillarpaul]

Hi, Kenny, and welcome to this terrific community. Read a lot of old posts and you'll learn a lot.

Sounds like you've done a lot of homework - congratulations. I took the AVR plunge in April, although the "R" miraculously turned out to be for Repair rather than Replacement. Since there was no way to anticipate that, I opted for a mechanical valve. It was a very, very difficult decision to make because for every time you hear that Exanta will replace Coumadin, you also hear that the surgeries will be minimally invasive by the time your next surgery rolls around. So, who knows?

Yes, the good surgeons consider this a "routine" surgery. That may be bravada on their part but I'd rather that than "Gee, I don't know if I can really do this".

I thought I was asymptomatic and fought having this done (I too am in real-estate oriented business). I can't believe how much better I felt just three weeks after the surgery. I could have gone back to work then if I wanted to (I didn't want to ).

Keep coming back and ask any questions. Everyone was so great to me and I enjoy reciprocating now. (Ignore my avatar - I'm really not THAT flaky).

Paul

 

[Heather Fisher]

Hi Kenny,

I had my valve replaced in July and went with a Ross Procedure. The hardest part about this is the decision of what valve to go with but there is no wrong decision as the surgery will save your life. Just pick the one you think is best for you and pick a surgeon you like and are comfortable with. I vote with the others. Get it over with as soon as possible so you can be on the road to healing. I never knew there were so many people with bicuspid aortic valves until I found this website. They are a great caring bunch of people and will help you through this every step of the way. Good luck with your choice...you will do fine!!
Heather

 

[ticktock]

Valve type?

Valve type?

Was it your Surgeon that said he didn't consider "repeat surgeries an issue".....??? WHAT IS HE THINKING?? But then, maybe neither did mine until it came to #3, then #4!! At #4, I couldn't find a man with a saw that would do the job. Called four well known Cardio's, including the 3 that had one the previous, and all said... "oh..no... why, we couldn't do THAT".... My Okla. Cardio said, "Do you know anyone personally that has had 4 heart surgeries"... I said "No", she said "there is a reason". Well this board proves her absolutely WRONG.. but she had a point.

Repeat surgery is a bad thing. Period. Period. Adhesions, complications, each surgery comes with a new set of potential problems. By the 4th, they "do what they can". Dr. Denton Cooley in Houston made me a walkin' miracle, thank God. I am 48 yrs old and doing very WELL! Each surgery was harder than the previous. Longer to recover, each time a new little set of problems.

The only reason I can imagine not to have prosthetic/mechanical would be if I were totally adverse to Coumadin. And that, I can't imagine because I have been on it since 1978. I am still relatively young and active, and it does not significantly affect my day to day living. Every now and then a small problem presents, but well worth the

The decision of course, is yours and only yours. The reason I speak out here with some enthusiasm, is because I have had the repeat surgeries, and your Surgeons comment kinda irked me. I think that a repeat surgery is only a non-issue when it isn't YOURS!

The very best to you, hope you hang with the board here, they are a magnificent group of supportive and caring people.

 

[Lisa]

I agree with everyone else about the mulitple surgeries! My brother passed away during his 4th procedure due to an aneursym. The ironic thing is that the AVR was actually successful. I don't mean to scare anyone here...it's just something else to think about. The point being here that the docs didn't see the aneurysm before the surgery due to the amount of scar tissue in his chest. There are more complications each time your chest is opened up!