New member /Decision Time

[tnboomer1013]

Hey Gero

Hey Gero

I will get straight to heart of the matter . I had a congenatal bicuspid aortic valve and no artery on the left side of my heart. Last July I had avr and bypass surgery at Vanderbilt U. When it came time to cut bait or fish so to speak. We my wife and I decided to go with the Ross Pro. If you go this way do a whole lot of research because with these procedures there is learning curve you want a surgeon who has alot of these under his belt. For a few reasons I am only 45 I still have an active life which includes 2 teenage boys, I am in heavy industrial construction and I really didn't want to take a blood thinner the rest of my life. We realized that with the R.P. there was a chance of resurgery in the years to come. But to me the risks out wieghed the negitive. But as was stated in an earlier reply after they get in there things do change. So I now have an erternal clock in my chest, as the RP was not possible. But we went in with a back up plan. I now have a carbomedics valve in there. The jist is do your research talk to doctors make a choice but have a backup plan you never know. I still have a problem with my inr level after a year and the only physical problems I have ever had was a week or two ago my left ear bled during the night. I still do not know why and my doc doesn't either. Yes I can hear the ticking and sometimes it feels like it is in my throat. But I will take the ticking over the alternative. You will get alot of VERY good advice here and a place to bring your concerns. We look forward to hearing your decision.

May God bless and watch over you and your family.

 

[mainframe]

Hi Gero,

To add my comments to every elses, there really is no wrong answer. I had a bicuspid, yada, yada, yada....... I chose to have it fixed before I had many symptoms while I was pretty healthy and in reasonable shape. I could have waited perhaps up to a year, but decided not to.

Your right that some of the tests you may have will determine what valve choice might be right for you. I originally wanted a Ross Procedure, but it was determined that because of some dialation of my arota, the cardio and surgeon decided it wasn't my best option. So I then went to plan B, which was a stentless porcine. Well it turns out during surgery, that the angle of my heart and the way my arteries lined up, the surgeon had to install a bovine valve. Oh well, so much for plan A and plan B. Plan C it was. In any event, I would still encourage you to read the thread Sylvia suggested "Making the Choice" by Peter Easton. Good reading.

Best of luck.

 

[John & Joann]

Hi Gero,

Welcome to the site. Joann (wife) has had 2 mechanical valves for nearly 31 years. She is the veteran of the forum and may be the longest in North America.

Coumadin has NOT been a problem. We have been in 48 of the 50 states, much of Canada, and many cruises. The valves travel well and the testing is now routine. She really understands it as well as the clinic that tests.

You need to consider the recommendations of your doctor. Age, activity, lifestyles, etc. all go into the decision.

We both like the Carbomedics. Quiet and work very well. Former valves were Starr-Edwards. BIG IMPROVEMENT in 28 years.

 

[greggo32]

Hi John & Joann,

So nice to hear that Joann is such as success story. 31 years! I think we should give her a Valve Replacement.com prize. Did Joann have the ball-in-cage valve? That was quite an interesting one! Thank God the ball never escaped from the case or she would have had the CAGE-minus-ball valve! I have a carbomedics as well and I am trying to keep up with the carbomedics folks as I have comments about it. I find it to be very, very loud. From talking with other folks, I think that is the consensus. Joann is the exception. Anyway, please write me back at [email protected] as it would be nice to chat. Be well.

 

[Christina]

Hey Greggo!

Hey Greggo!

You were mentioning in your message to John and Joanne that your Sultzer Carbomedics valve is so loud. Greg, that was my opinion when I received the Sultzer Carbomedics as my first valve.
When I needed a redo 11 days later my doctor changed brands and implanted a St.Jude's instead. I had no idea about valves and just trusted my surgeon what hetold me, but when I woke up from the second surgery, the first thing I noticed when I sat up was that the St.Jude's was quiet. It did not bother me at all and hasn't since.

Christina
Congenital Aortic Stenosis
AVR's 8/7/00 & 8/18/00
St.Jude's Mechanical

 

[greggo32]

Question

Question

Christina,

I forget what even happened that led to you needed another surgery 11 days later. Please remind me.

Truly,

 

[Christina]

Re: Your question.

Re: Your question.

Greg,

The reason my surgery needed to be redone was because I got a blood clot underneath the valve. Too low INR (1.4) The surgeon decided when he got in there again that the Sultzer Carbomedics that he had put in was too big (21mm) and he replaced it with a smaller size (19mm) St.Jude's.
Read all the details in my personal story in the personal story section.

Christina
Congenital Aortic Stenosis
AVR's 8/7/00 & 8/18/00
St. Jude's Mechanical

 

[greggo32]

Thanks

Thanks

Dear Christina,

Thanks for telling me what happened. I will read your personal story. It's nice to get a letter from the author.........

Take care,

Greg

*noisy, noisy carbomedics valve

 

[ddarsch]

I know how you feel

I know how you feel

Gero:

I am a 44 year old male who had a porcine valve replacement in 1991. The valve has now started to deteriorate and it is time for the second decision. As I understand it, the Ross procedure is only applicable for those with an Aortic valve problem - and with a mitral, I did not have the choice.

Anyway, the last 11 years of my life were the best that I have every had - I am delighted with my choice for a porcine. I am now thinking strongly of doing another biological (bovine this time).

I am available anytime to chat via e-mail or phone.

Relax, either choice is a good one

 

[Zipper#5]

Decision time

Decision time

Gero- I don't know whether you have made your decision or not but my advise is to read up on the different types and listen to your doctors. Everyone is different and it depends on your age, lifestyle, etc. I'm presently looking at my 5th open heart having had three by age 12 to correct congenital defects. Had a bovine valve inserted as a result of endocarditis two yrs ago and it started leaking right away.
Imagine my surprise to learn that this thing that was to last 10-15 yrs didn't make it to it's 1 yr anniversay! My doc and I are at a standstill now for they insist on a mechanical and I want another bovine (lightning couldn't strike twice- right?) Anyway the point I want to make is that although I am not looking forward to another surgery, compared to the surgeries I had as a child-it was easy. When I tell my early surgery stories to the docs and residents, they look at me like I'm from another planet- so foreign are past methodology. Technology changes so rapidly now, that ten yrs from now heart surgery will be so much improved, including the recoup period. I know from experience it will! Focus on the present surgery and your decision will fall into place. Best of luck!

Maureen
ACHD, PDA, AS, VSD, Pacemaker, Bovine valve

 

[ddarsch]

Maureen you are incredible

Maureen you are incredible

Maureen:

Five open heart surgeries and still leaning toward bovine, you are incredible. Sorry to hear about the less-than-success with the recent bovine implant :<(

I live in Barcelona and am talking with THE mitral valve specialist in Europe. Based upon my life styel, he told me that he would recommend a bovine for my second (thus there will be a third operation). He told me that he has put a porcine/bovine in come people three times, and sometimes even a forth.

 

[ALCapshaw]

Maureeen,

Did anyone offer an explanation of why your Bovine Pericardial Valve was leaking? If not, you may want to obtain a copy of the Lab Report to see what was found.

You may also want to ask your surgeon if he thinks he (or any other surgeon) would be able to place yet another valve when the time comes. It is my understanding they would need some 'good' tissue to sew into. This becomes more and more difficult with each successive valve.

Best wishes,

'AL'

 

[Zipper#5]

So many!!

So many!!

Thanks for your note! how are things in Spain? It must be that you are so young that you wil lneed so many replacements. In the states- they like the mechanical valve to avoid all the surgery repeats. You had your first valve surgery young- wow! Not fun!! Ugh!! Best of luck! Maureen

 

[ddarsch]

In States for August

In States for August

Maureen:

Spain/Barcelona is an incredible place, I moved there for a couple of months in August 1998, and never came back. I had my first procedure at Fairfax Hospital in Virginia in Nov 1991 (I was 34). So, after 11 years, I will do it again at 45.

I am in the States, are you available next week for a chat on the phone? You can send me an e-mail directly ([email protected]).

Stay positive

 

[Zipper#5]

reply

reply

Prefer to use email Is there something in particular you need to know that you don't want to use this format? Use the private message (PM) no else can read it. Maureen

 

[ddarsch]

This medium is fine

This medium is fine

Maureen:

This medium is fine if this is what you prefer. In the prior response, I had indicated the possibility of a phone call as I am in the States - no six hour time zone difference.

Did the docs give you an explanation on the cause of the leak of the bovine?

Dave

 

[gary48]

Valve Choice

Valve Choice

Like every body out there I believe there is no wrong choice-in that age, personal preference and all the other factors make it a personal choice-in addition to hearing such positive reports on all sides-it is a win-win situation-once you make a choice -make sure your physician of choice is well versed on the procedure and is behind your choice--Dr. Deeb at U of M is a firm believer in tissue valves-fortunately my aorta was dialated and my valve was spared (Trauma induced anuerysm-car accident) I wanted a tissue valve (47 years old)-I am a runner-and suprisingly -there are several runners-some marathoners with artificial valves-so it wasn't an easy decision-making contigiencies for what type of valve I would have gotten.

 

[bobm193]

Valve replacement choices

Valve replacement choices

I am a new member too and need my Aortic valve replaced soon. I am leaning toward the Ross procedure also. At 43 i do not want Coumadin and i don't want to have a reop as with pig or cow valves. There is different opinions on the Ross and how long the valves actually last. My original cardiologist and the surgeon he sent me to do not believe in it and advised against it. They said there is more risk due to 2 valve operation and complexity and pump time. Also, they said the chances are one of the valves will need to be replaced anyway. Despite their opinion i saw Dr. Steltzer in NY at Beth Israel Hospital and liked his results with the Ross.

I don't think i will ever be sure which is the best option (and i have been thinking and researching for over a month) but i have a cardiac cath scheduled for next wednesday and i need to decide by then what to do.

I would appreciate any help anyone can give on choices also.

Bob

 

[ddarsch]

Mitral not aortic

Mitral not aortic

Bob:

I am a mitral valve guy (replaced with a porcine in Nov 1991), so I cannot provide any insight into the Ross procedure. I can however, tell you that having a porcine for 11 years has been a wonderful dream. I have never thought about heart problems, and aside from seeing the scar, I never had an impact on my lifestyle. I have been told that in 2003 it may need to be replaced, but I have never regreted my decision.

Remember, whatever decision you make is the correct decision, and good luck with the test next week

 

[gary48]

Ross Procedure

Ross Procedure

I have read good and bad about this procedure-There was a proffessional fooball player Jesse Sapolou (linemean) who had the Ross procedure and continued his football career. I have read a lot about the the long term durability of tissue valves being related to exercise and healthy lifestyle also.