Carbomedic Valve

[AngelaR]

Hello All. My husband has an insufficient aortic bicuspid valve that needs to be replaced. They are telling us we can stretch it 3-6 months but surgery is imminent.

He is 32 years old and a Police Officer. We have been researching the different procedures and types of valves. Our surgeon is Dr. Trachiotis (VADC and GWU) and he is advising on a Carbomedic mechanical valve. We have tossed the tissue valves around and the prospect of having to have OHS again sits very uneasy with us.

We have looked into the Ross Procedure and because his aortic valve is insufficient he is not a good candidate. And not to offend anyone that has had this procedure done but I haven't seen anyone that has gone more than 7 years without having to have some sort of re-do, even in the children. That scares us. Ruining the pulmonary valve for 7 small years. (Again not trying to belittle those who have had it, just my first instincts after my research).

Does anyone have this valve and have information on their experience? We were very nervous about the prospect of the coumadin however, the more research we do on that it seems the lesser of having another OHS.

Thank you for your time.

 

[Ross]

Angela don't fear the Coumadin thing. It's not as bad as it's made to sound. The valve itself is a good one. My only question is, how will taking Coumadin be seen by the agency he works for?

As part of your learning experience, please go to http://www.warfarinfo.com/warfarinfo.com2.htm and read everything you can about Coumadin. The site is run by one of our retired members, Al Lodwick, who ran his own Coumadin clinic until just recently, now he's on to teaching others the technic in INR management.

Just remember, there are no guarantees that you won't have to have another surgery, but mechanical will certainly limit future surgery.

 

[ALCapshaw2]

You may want to continue your research by looking at the websites for the various valve manufacturers.

The 'big four' mechanical valves available in the USA are made by ATS Medical, Carbomedics, On-X, and St. Jude. You can find their websites with GOOGLE.

I am impressed with the technological advancements available from On-X (see www.onxvalves.com and www.heartvalvechoice.com). The Ox-X valves have been approved by the FDA for a study using LOW and NO Anti-coagulation in Low and Mild Risk patients. This study will continue until 2015. The benefits (lower risk of clot formation and lower risk of damage to blood cells) come with the valve, regardless of the results of the anti-coagulation studies.

The Gold Standard for Longevity belongs to St. Jude whose valves have been around for 30 years. (see www.SJM.com).

ATS and Carbomedics are 'spinnoffs' of the St. Jude Valves.

ALL 4 use Pyrolytic Carbon for the leaflets which was designed for use in the Nuclear Power industry by the same person (my mind has gone blank!....) who subsequently has made a career out of designing Heart Valves. He is the founder of On-X which produces his 'latest and greatest' design.

'AL Capshaw'

 

[John & Joann]

Joann has Carbomedic valves and has had a great experience. Would be glad to answer questions.

 

[ctyguy]

Biscupid Aortic Valve Replacee

Biscupid Aortic Valve Replacee

AngelaR...Im two weeks post-op, 42 yrs old and live a pretty active lifestyle. I went mechanical for the reason your leaning that way, I wanted this procedure once and hopefully only once. I had my procedure at the Cleveland Clinic and the surgeon implanted an On-X valve. Google it for comparison purposes. I was also Biscuspid with pretty severe stenosis. I was nervous about the coumadin also but I would rather give a blood draw every few weeks and take a pill than deal with the prospect of multiple OHS. Doesn't mean it won't happen, Im sure it still could but if this valve works as advertised I should be good to go, my heart is fully healthy other than that valve. There are also studies going on currently with the On-X valve where coumadin isn't in the mix, baby aspirin only. Im not in that study but there are a few folks on here who are and can tell you about their experiences as well. The On-X is supposably technically more difficult to put in because it has a higher side profile. My surgeon had done 50+ of these before and said if he needed a mechanical valve, this was the one he would have chosen. His name is Gosta Pettersson, you can google him also and see his name pop up on alot of literature. You may want to at least ask your surgeon about his thoughts of the On-X if your going to go mechanical. Send me a private message if you have other questions, I'd be happy to answer any. Good luck to you and your husband, given his age he is gonna breeze through this !

 

[AngelaR]

I'm having problems posting. I just typed a huge post and it didn't take. I can't stay logged in for some reason. So I will type up my response in word and then try and re-post it without losing it a 2nd time. geesh!

 

[Ross]

Angela I just switched you to a different theme. See it that take care of the problem. If not, log out, then when you go to log in again, check the box for "remember me" and then try it.

 

[AngelaR]

After a lengthy search for a surgeon I don't plan to start a hunt for a new one at this point. I will ask about On-X again but he didn't have a very strong opinion about it and has used the Carbomedic with great success. I really feel comfortable with this Dr and like I said it was a lengthy search.

I am a fitness and nutritionist fanatic with all the fancy education and experience to back it up. I was a firm believer that there was nothing diet and exercise couldn't cure. So you can imagine how this rocked our world

We only take a multi and garlic and neither of us has been to the doctors in years other than hubby's 6 month echo and mri. we have little faith in the medical community and even less in the pharacutical so the coumadin was a scary prospect but we are learning as we go here.

I saw the clinical trials on the On-X with plavix and asprin and didn't see much difference and advantage at this point in the study. still no contact sports and can still have bleeding problems

Hubby will continue to be a cop. When you are a cop it is who you are not what you do. the risk is there whether he is on meds or not and the department cannot take that choice away from him. he signed a waiver when he got hired because of his heart condition anyway. releasing them of any responsibility if anything should happen while he is on duty related to his heart. so the risk is there without the surgery or with the surgery.

perhaps when he puts a few years under his belt he will go out to the academy and train or become a professor at a college. its a risk we acknowledge as a family. we are both prior Marine's. some may look at it as being selfish but we look at it as serving the community and country. some can do and most can't.

John - has Joann had any problems or difficulties with her vavle? How long has she had it now?

 

[AngelaR]

Angela I just switched you to a different theme. See it that take care of the problem. If not, log out, then when you go to log in again, check the box for "remember me" and then try it.

Thank you, Ross! We will see if this works now!

 

[sknydave]

I am also curious to know what his department's take on the coumadin is? I know someone who had to go with a tissue valve in order to stay with the fire department.

 

[ctyguy]

Finding a surgeon your comfortable with is a big battle for sure. I only spoke with a few (all at Cleveland Clinic) and Pettersson was the guy I decided I wanted based on his overall experience. I was in a bad way and needed to be on the table sooner rather than later (15 days from initial diagnosis). Im optimistic about the ongoing study but it will be another 7 years before it bears any fruit so that really didn't factor into my choice. For me the big thing was hopefully no re-operations, sounds like you guys are the same way. If your comfortable with your surgeon and valve choice then blaze ahead and don't look back, you guys sound like your in great shape so you should breeze through this.

 

[AngelaR]

I am also curious to know what his department's take on the coumadin is? I know someone who had to go with a tissue valve in order to stay with the fire department.

When he first got hired on at his current department (this is his 3rd, he followed me around in the military for a few years) he was 4 years into the diagnosis. They made him sign a waiver saying they couldn't be held accountable for anything that happened to him on duty related to his heart. I still would get the life insurance, but I couldn't sue the department for negligence.

There are guys on the department that have hip replacements and restructured knees that have problems walking and can't wear the duty belt because of the extra weight. They sit at the desk and will draw a pension. There are woman there that get pregnant (and some that stay pregnant 5, 6 kids later, almost their entire career). There are cops with diabetes and take meds for that. A wide range of cops with disabilities (not that pregnancy is, but it does put them behind a desk rather than on the road) and they still choose to be cops and their contribution to the department is little. I am confident the coumadin will slow him down nill. Actually, he'll probably be MORE active as he won't be so dang tired all the time like he is now.

He is a good cop and I don't forsee this slowing him down at all. He will probably think a little more going into rough scenario's that before he busted into without a care to the wind, but perhaps that will be a good thing.

 

[AngelaR]

ctyguy - I couldn't imagine your dilema. No prep! Kudos to you for dealing so well on short notice. Glad to hear you are doing so well post op. Everyone here that is doing great boosts our confidence for our success.

I am not so much worried about the procedure itself but the recovery. As you are probably grasping from my posting Ray (hubby) is a full force ahead kind of guy. Never really relies on anyone for assistance. Him being dependent on me and his friends and family for a few weeks may drive him into insanity. So I am glad we have this mental prep time. He is already stressing and having trouble eating.....of course, I can't lie I am too.

The more information we get and the more we talk to the surgeon the better this is getting. Now that we have a surgeon and decided on a procedure we both feel better but there is still all the what if's. Which I know you can't let them eat you alive.

We were hoping to get one more year out before the surgery but the surgeon told me on the phone this morning, 3-6 months or we risk the integrity of the heart function.

It's been kind of all consuming right now. Which I am sure you are all familiar with.

 

[Ross]

Hey I fully understand. Some of our fireman/paramedics weren't allowed back on the squad afterwards and there really isn't any reason for it.
As a matter of fact, I think Al Lodwick testifed on behalf of a New York Policeman because he was let go because of Coumadin. There shouldn't be any such legislation on the books, but were still fighting the system.

 

[ctyguy]

I honestly couldn't have taken waiting 6 months for this to get taken care of. Once I knew I needed it, it was game on. Plus that fact that I REALLY needed it. I could have waited a few more weeks but I thought if I gotta do it, lets role. Im like your hubby, Im ex-Army and am VERY self sufficient. My wife doted on me for the first two weeks post op but this week she went back to work and Im managing at home pretty well by myself. I have two pooches to keep me company. At two weeks post op Im off the pain meds and moving around pretty well. Gotta sleep on my back due to the breastbone so the recliner is my best friend. Best advice I can give is to try to get off the pain meds as soon as possible after the procedure. They mess with your digestive system and quite frankly I think they were giving me a false sense of security. I was trying to do more than I really should have been doing when I first got home. Once I kicked them to the curb and it was only Tylenol my body let me know what the real deal was. Im still doing some (I can make a sandwich, let animals in and out) but lifting things is out of the question for a while. On the meds a gallon of milk was a stretch but ok, with the Tylenol only I've asked my wife to put a few cold glasses in the fridge before she leaves. The discomfort is a bit more but not THAT much more. The more muscle you have supposably the more discomfort you may feel. I was/am a weight lifter so I can say its uncomfortable, but I can still snooze in the recliner without issue. Once your Hubby is home he will be suprised at the recovery, its not nearly as bad as I thought it was going to be.

 

[Troy]

I am 40 year old recipient of a carbomedic heartvalve (aortic). I actually wanted the ONX, new different better..... Tell your husband to relax. My heart surgery was a breeze. Recently I had carpal tunnel surgery and it was much more painful. There are some lifestyle changes with a mechanical heartvalve, including taking Coumadin, but even that is not a big deal if you monitor it. (I have a home testing machine.) I lived a healthy lifestyle, herbs fresh food and natural approaches to health maintainence. However, I had a bi leaf aortic valve was wore out. Tell your husband I would be glad to visit with him or answer any questions he may have.

Troy Splawn

 

[mmarshall]

Angela,
The waiting is probably the worse part of the whole process. If your husband is in shape and does not have any other health issues...which it does not sound like he does...then the recovery should not be too bad. He will get a bad case of cabin fever and hate the fact that he has to rely on someone to do the the heavy stuff for him after surgery since he is always on the go and active. But hopefully he will take advantage of you taking care of him.
I would think that the day to day duties of a policeman would be a bigger risk than dealing with coumadin on a daily basis.

 

[sknydave]

When he first got hired on at his current department (this is his 3rd, he followed me around in the military for a few years) he was 4 years into the diagnosis. They made him sign a waiver saying they couldn't be held accountable for anything that happened to him on duty related to his heart. I still would get the life insurance, but I couldn't sue the department for negligence.

There are guys on the department that have hip replacements and restructured knees that have problems walking and can't wear the duty belt because of the extra weight. They sit at the desk and will draw a pension. There are woman there that get pregnant (and some that stay pregnant 5, 6 kids later, almost their entire career). There are cops with diabetes and take meds for that. A wide range of cops with disabilities (not that pregnancy is, but it does put them behind a desk rather than on the road) and they still choose to be cops and their contribution to the department is little. I am confident the coumadin will slow him down nill. Actually, he'll probably be MORE active as he won't be so dang tired all the time like he is now.

He is a good cop and I don't forsee this slowing him down at all. He will probably think a little more going into rough scenario's that before he busted into without a care to the wind, but perhaps that will be a good thing.

It's not a matter of slowing down. If anything, he's probably going to speed up once he's healed.

Here is an interesting write-up by an officer who went through the same thing: http://stu.westga.edu/~wmaples/blair_christopher.html

 

[Freddie]

Well hello there Angela and Welcome.

I have a carbomedics mechanical valve and did not have a choice in receiving it. My surgeon just said to me " I'll repair the valve if I can, if not, I'll be replacing it with a mechanical....cause I don't think you would want to go thorough this again" My fate was in his hands. I didn't realize there were different valves out there, and this one is keeping up with me with NO problems .

As far as the warfrin goes, I know it will be tough, because I was like you regarding taking med's of any kind. I've come to except that taking these pills, and they are no different than taking your vitamins at the same time every day. Honest!

You DON'T have to adjust your diet when your on warfrin you adjust the dosage of warfrin, and that will come during the recovery.

Please if there any other questions you have......ask away. We are here to help you and your Hubby out.

Good Luck and Take care

 

[AngelaR]

Hi Freddie and Troy - thank you for sharing your experiences. As I've said the more I learn the easier this gets and mmarshall you are right the waiting is the worst part.

Yes, Ray is in very good shape. He is about 245lbs at 6'1" and about 13% body fat. He powerlifts and jogs. I expect his powerlifting days are over, but that's OK. He played in a basketball tournament a few weekends ago and 245 was a lot crashing down on the knees. And he is interested in being a threat on the court again. He played in college and has always been very good until he put on about 30lbs. Over the last few years he has a vertical of about an inch! HA!

We had a half marathon planned to celebrate my 30th birthday in August. August 31st is the run. It's already paid for so I am hoping worse case scenario we can walk it.

The surgeon called me yesterday and we see him Tuesday but I told him we were hoping to put this off until Feb next year and he gave me that ohhhhhh. So we talked it over last night and we are looking more at May now. We physically see him again on Tuesday to discuss what valve we have decided on for sure and see the cardiac floor, the ICU, he is also going to talk to our daughters. Our 8 year old is the one that is very scared. She is the epitome of a daddy's girl. She waits on him hand and foot, follows him around and when she over heard us talking to the cardiologist on Saturday she freaked out.

We weren't planning on keeping it a secret, we just didn't know WHEN he was going to have the surgery. Like I said previously, we were hoping this would go away on it's own.

I am very confident the surgery will go well. I am most nervous about the recovery. As someone said him asking for assistance is going to be something new to him. I am just hoping that he takes it easy and doesn't push himself too fast. As for the medication, I'm not actually worried about the coumadin but him changing his lifestyle. He is a good hardy Irish man who likes to drink Guiness, and I'm not talking about one or two. He doesn't drink often maybe once or twice a month but when he does he goes for it. I don't drink so I don't understand why he was a little upset about this. But I am trying to be sympathetic.

We have some awesome friends. Police Officers are not only friends but family. I've been getting text messages and emails all week about taking "Ray shifts" when I have to go back to work and he is still home. So that makes me feel better. He won't be bored.

Hope you are all having a good day.