Please Help-Hubby has endocarditis now! Needs to choose valve!

[Natanni]

Hi guys.

I introduced my hubby here around a month ago and have been lurking mostly since. We need serious help fast because he is having a very hard time with valve selection. Here is his story;

He was born with murmer and had no problems in childhood. At around 27 during DOT physical he was found to have AV regurg and was followed by a cardio every 6 month with echos/stress tests. Now 34, they thought time to do cardiac cath, no good visual with nuclear stress test. No real symtoms....just increase in fatigue but we thought could be age/work related but left vent getting larger. Cardiac cath was a nightmare, won't go into all details but he went home sweating, violent shaking and pain. Those symptoms never went away. Brought to ER one week post cath, deemed fine and sent home. Still didn't get better. 4 weeks later he spiked a fever on Sunday and away to the Mayo he went. He has endocarditis due to strep. Nothing seen on valve yet but another TEE will be done Monday. I ran home today to do a few more things and I am heading back tomorrow. If all looks good Monday we don't need surgery and he will come home with antiobiotcs IV 4 weeks and then 2 weeks with cultures negative then he will have surgery. If anything seen Monday he goes to surgery.

He is having a nightmare of a time and sent me here for help. He is very very active person. Motorcycles, ATV, uses a chainsaw at home. Scary to be on coumadin but he very very much does NOT like the idea of more surgery to come. He is hating the hosptial now, hates these IVs now, everything about it. He is afraid of coumadin and his lifestyle although he would have no problem wearing helmets or leathers etc. He is being told by family that when a St Jude (or any artifical valve) starts having problems there is no warning, it will just quit and that is it. He was very very interested in the On-X valve, but his surgeon only uses the ?Carbonmedix (not sure if that is right word) and St Jude.

We have a thousand more questions but I need to get this off so I can get responses to bring him tomorrow. We have asked the docs (but not the surgeon yet) and they all say it is up to him and I have yet to ask them if it will change things now that he has had this infection if that will affect valve selection. They did say that Nathan will always be very predisposed to this infection now that he has had it, even more so than having a bicuspid valve.

Thanks for your replies, Ann

 

[Mary]

Ann,
If you've been lurking and reading, then you've heard both sides to valve choice. You probably already have enough information to make an informed choice.
It basically comes down to how seriously the thought of another surgery bothers him. If he doesn't want another OHS, the safest course is to get the mechanical. I think that is a bigger determining factor than thoughts about how he will or won't do on the coumadin.
I'm a person who was willing to take an educated, calculated risk. I went with the bovine, and I am happy with my choice.
Nathan will have to make this decision himself, because ultimately, he is the one who will have to live with it.
I wish you good luck with getting him through this episode of endocarditis. I know you will have a hard time until you get him safely through this journey.
Mary

 

[coryp]

Hi guys.

I introduced my hubby here around a month ago and have been lurking mostly since. We need serious help fast because he is having a very hard time with valve selection. Here is his story;

He was born with murmer and had no problems in childhood. At around 27 during DOT physical he was found to have AV regurg and was followed by a cardio every 6 month with echos/stress tests. Now 34, they thought time to do cardiac cath, no good visual with nuclear stress test. No real symtoms....just increase in fatigue but we thought could be age/work related but left vent getting larger. Cardiac cath was a nightmare, won't go into all details but he went home sweating, violent shaking and pain. Those symptoms never went away. Brought to ER one week post cath, deemed fine and sent home. Still didn't get better. 4 weeks later he spiked a fever on Sunday and away to the Mayo he went. He has endocarditis due to strep. Nothing seen on valve yet but another TEE will be done Monday. I ran home today to do a few more things and I am heading back tomorrow. If all looks good Monday we don't need surgery and he will come home with antiobiotcs IV 4 weeks and then 2 weeks with cultures negative then he will have surgery. If anything seen Monday he goes to surgery.

He is having a nightmare of a time and sent me here for help. He is very very active person. Motorcycles, ATV, uses a chainsaw at home. Scary to be on coumadin but he very very much does NOT like the idea of more surgery to come. He is hating the hosptial now, hates these IVs now, everything about it. He is afraid of coumadin and his lifestyle although he would have no problem wearing helmets or leathers etc. He is being told by family that when a St Jude (or any artifical valve) starts having problems there is no warning, it will just quit and that is it. He was very very interested in the On-X valve, but his surgeon only uses the ?Carbonmedix (not sure if that is right word) and St Jude.

We have a thousand more questions but I need to get this off so I can get responses to bring him tomorrow. We have asked the docs (but not the surgeon yet) and they all say it is up to him and I have yet to ask them if it will change things now that he has had this infection if that will affect valve selection. They did say that Nathan will always be very predisposed to this infection now that he has had it, even more so than having a bicuspid valve.

Thanks for your replies, Ann

HI,

I too decided on a Bovine Valve and I am the same age as your husband (Mary & I had surgery the same day and same valve!!). I will not say that I am happy with my choice just yet (I want to keep it for 15-20 yrs first then I will make that assesment). I do however feel that it is essential for both of you to understand that risks for additional surgeries do exist with the mechanical, especially at his young age. In all likelyhood he will need another surgery. Just remember that the valve itself (mechanism) is guarenteed for like (200 yrs or something) but the body may opt out and reject the valve in 5,10 or 30yrs perhaps. I have not read of many cases where people keep going with the mechanical after 40 yrs (which would only make him 74). Maybe it is just my lack of good info but I beleive if he does choose either valve he will still need at least one more surgery in his lifetime.

Just my 2 cents

Regards,

Cory

 

[tommy]

At the age of 46 I chose mechanical because I didn't want OHS again. Even at that, there is still no guarantee. I've had some coumadin issues, but have not looked back. Thqat is the advice of my cardio at the time and I guess that's the best advice I pass on..........make an informed decision and don't look back. I wish both of you well.

 

[hensylee]

Hi Ann from Mn - this is Ann from Fl.

Your question is probably the most common one asked in VR. There will be many posts to you because everyone has his/her own preferences - as your hubby will after it's over and done. I can't help, tho. I don't have a VR, but I wanted to welcome you to VR and tell you how nice it is to have you with us. Blessins.......

 

[TjCarpenter]

Hi Ann from Mn - this is Ann from Fl.

Your question is probably the most common one asked in VR. There will be many posts to you because everyone has his/her own preferences - as your hubby will after it's over and done. I can't help, tho. I don't have a VR, but I wanted to welcome you to VR and tell you how nice it is to have you with us. Blessins.......

Hello, Sorry to hear of your recent troubles. The valve question is the most frequently asked question around here for sure. Everyone, at the end of the day, chooses the lesser of evils for them. I am 45, very active and did not want to be dependent on coumadin. Less is more in my life and I realize that there are no guarantees either way. I have a Freestyle stentless porcine aortic valve and so far ( 4 weeks ) it is working flawlessly. I pray each day that it will keep me going for as long as it can. We will see. I know that OHS will only improve as time passes and I do not expect it to be any worse than what I just went through. I can deal with that. Things happen to us in life that we can't control. "Man plans and God laughs". For now I wanted the simplest, low maintenance way to go and that is what I believe I got. Best of luck to you in dealing with your current challenges.. I pray that all will work out real soon.

Regards,

Tom%0

 

[Ross]

He is being told by family that when a St Jude (or any artificial valve) starts having problems there is no warning, it will just quit and that is it.

Someone is misinforming him! A bad mechanical valve acts the same as a bad natural valve. All the symptoms are the same and there is definitely a warning sign of failure. The only exception would be a clot that develops and gets thrown, causing a stroke. That is why he'd need to be properly anticoagulated.

http://people.hofstra.edu/faculty/sina_y_rabbany/engg81/prostheticheartvalves.html

 

[Old clicker]

At the age of 46 I chose mechanical because I didn't want OHS again. Even at that, there is still no guarantee. I've had some coumadin issues, but have not looked back. Thqat is the advice of my cardio at the time and I guess that's the best advice I pass on..........make an informed decision and don't look back. I wish both of you well.

What he said, except I was 48. I am happy with my decision. Coumidin is no big deal for me. I didn't find this site until after my surgery, and if I had I think it would have made my decision harder to make because of all the different opinions and reasons for going either way. In my case I guess ignorance is bliss.

 

[tobagotwo]

He can handle most of the lifestyle on Coumadin, with a few precautions here and there.

At 34, it would be difficult to say that he would not have at least one more surgery, whichever type of valve he chooses. However, with a mechanical, he would likely have only one more (some possibility of none). With tissue valves, he would have to have at least two more, assuming current technology.

It is possible that there may be good percutaneous (catheter-placed) valves down the road, but they are not close to the functionality of valves implanted in the standard way, and may never be. Conversely, it is unlikely a mechanical could be replaced later with a catheter-placed valve at all.

While his friend's advice about sudden failures had some truth to it once, it isn't accurate with today's products. The type of failures he is discussing are from long-discontinued technologies. Very few mechanical valves fail suddenly, and by far most that did were much older varieties of valves. Current mechanical valves are manufactured from pyrolytic carbon and variations thereof, and don't have the liabilities that some earlier valves exhibited. Most mechanical valves that "fail" today, are not actually failures of the valve itself, but other tissue failures or problems in the heart instead. That type of failure is slow%2, not sudden.

In this forum, we find that nothing's impossible, but you still have to consider things in terms of the most probable result.

It is a terrible choice to have to make, and I wish him success with his decision. Whatever his choice, he should make peace with it, and never look back.

Best wishes,

 

[Ross]

For his age, I'm for mechanical. Coumadin is not the big ugly ogre that many make it out to be and you'll see that around here too. Call us the Myth Busters. I'm all for anyone really having to go through this surgery, to do it only one time. Granted, there are no guarantees that even with a mechanical, he won't need another surgery down the road, but that is much more acceptable to me then planning to have two or three more later. This is major surgery and though the risks are small, they are still risks.

I say this to everyone because I nearly lost my life in both of my surgeries. I do not want someone else experiencing what I did if it can be helped. Here again, just because I had a really bad time, doesn't mean that he will, but the potential is definately there.

Whatever his choice maybe, be comfortable with it once it's made and don't look back at the "What ifs".

 

[Karlynn]

Short and sweet.
Had St. Jude mitral valve installed over 13 years ago at the age of 32. While Coumadin is a serious medication, it has not stopped my activity. Raised 2 very busy, active children from early grade school to, now, college. Traveled to Europe twice (planning on more). Cleaned out my garden area with chain saw this spring. Valve is still seated well and working fine. Life is good.

Best wishes and many prayers.

 

[Gemma]

Someone is misinforming him! A bad mechanical valve acts the same as a bad natural valve. All the symptoms are the same and there is definitely a warning sign of failure. The only exception would be a clot that develops and gets thrown, causing a stroke. That is why he'd need to be properly anticoagulated.

http://people.hofstra.edu/faculty/sina_y_rabbany/engg81/prostheticheartvalves.html

Jim's cardio told us a story about a patient who came to see him saying his mechanical valve had stopped working - he knew because it wasn't ticking anymore. Turned out he had stopped taking his warfarin, and a clot had formed on the valve. Fortunately, it had stuck open rather than closed he wouldn't have walked into the consulting room otherwise!
And the moral of the story is - keep taking your warfarin!!!

 

[tobagotwo]

Gemma, some valves manufactured years ago did have rare instances of actually shattering in vitro.

However, they were not manufactured with today's materials, nor in today's configurations. Current valves generally exceed a mechanical function test rating of over 200 use-years.

Best wshes,

 

[Gemma]

Bob, thank goodness for progress! I think the guy in question was afraid of bleeding risks, so opted for the rather stupid alternative of needing another OHS! Ask me in 198 years and 4 months, and I'll tell you if Jim made it to the 200 year mark

Ann, my boyfriend Jim has a mechanical valve. He's now 28. He rides motorbikes, fixes his 30-year-old Mini and assorted motorbikes, works with heavy machinery, and has so far been fine. If he cuts his finger it takes a little while longer to stop bleeding, but we're talking a matter of seconds. His surgeon and cardio both told us the mechanical valve will last a lifetime, and that's what we're hoping for. Jim has a Sorin valve (not available in the USA, but I think it's comparable to Carbomedics or On-X).

It's a tough and scary decision to make, but the main thing is that this is a condition that can be fixed and whatever decision you make, it's the right one .

Best wishes,
%
Gemma.

 

[Natanni]

Thank you all

Thank you all

Thanks to you all for your replies. He will appreciate them so much. He hopefully will be able to move around the hospital more this weekend and we can go up to the internet area so he can read and talk himself. I am going to print off what is here before I leave to take to him. Does anyone have any feedback on the coumadin home monitoring system? It would appear our insurnace would cover a good portion. I am wondering how accurate it is compared to the office testing, how often is needed to still get it checked in an office setting, etc.

Thanks again.

Ann

 

[Ross]

Ann I beleve home testing to be more accurate then the lab, but that's not proven, so don't take it for fact. I test weekly, so I have very good control of my INR. Some people like to stop in once every six months and get a lab draw to see how their machine correlates with the lab, but I don't think it's necessary. I think it's done more for peace of mind then anything.

 

[Karlynn]

Thanks to you all for your replies. He will appreciate them so much. He hopefully will be able to move around the hospital more this weekend and we can go up to the internet area so he can read and talk himself. I am going to print off what is here before I leave to take to him. Does anyone have any feedback on the coumadin home monitoring system? It would appear our insurnace would cover a good portion. I am wondering how accurate it is compared to the office testing, how often is needed to still get it checked in an office setting, etc.

Thanks again.

Ann

Home testing is the way to go, IMHO. Many of the drs. and Coumadin clinics use the testing machines that we have at home - maybe with a few more complicated computer issues that allows them to directly connect to their data base. But the testing is the same.

I don't recall if anyone has mentioned our wonderful, esteemed , member Al Lodwick. Al is a Coumadin (warfarin) expert that runs his own clinic and travels the world speaking to physicians and other medical professionals on the use of Coumadin. Al helps dispell much of the fear and fable surrounding the use of Coumadin and keeps us all current (more current than a lot of doctors) on the use of warfain. His site is full of valuable information. www.warfarinfo.com. Al is worth 10 times his weight in gold to those of us who use Coumadin.

With Al's help, and the knowledge of the people on this site, I have been home testing and self-dosing, with the blessings of my cardiologist. I don't call her unless my numbers are way off - which they rarely are.

 

[Lynlw]

BE experience

BE experience

Ann, I'm not going to suggest which valve But I do want you to know Justin had endocarditis when he was 11, hopefully since it was caught pretty early and noting showed up on the valve yet his valve won't be damaged, I'll say a few prayers for that. I wanted to suggest tho that you start working on insurance and the home IV's NOW tho. we have very good insurance (Blue cross/shield) and even tho Justin's hospital bills have been way over a million dollars over the years, we never had a poblem or had to pay anything for hosp stays, BUT we really had to fight for days to get them to cover his 6 weeks of IV at home, IF he stayed in the hospital they would cover 100%, if he came home it was mostly on us. We called the social workers called the doctor even called it took several extra days of him staying in the hospital just for the IVs for them to understand just one or 2 days of being inpatient would have paid for the month of IVs at home, it was just so frustrating and stressful.
Once again , I'll say a prayer there is no valve damage, so your husband doesn't have to go thru surgery. Justin is 17 and just got a pulm valve for the first time in his life, we chose tissue,(bovine) but there were alot of reasons why this was the right choice for Justin. Lyn www.caringbridge.org/nj/justinw

 

[Natanni]

Ann, I'm not going to suggest which valve But I do want you to know Justin had endocarditis when he was 11, hopefully since it was caught pretty early and noting showed up on the valve yet his valve won't be damaged, I'll say a few prayers for that. I wanted to suggest tho that you start working on insurance and the home IV's NOW tho. we have very good insurance (Blue cross/shield) and even tho Justin's hospital bills have been way over a million dollars over the years, we never had a poblem or had to pay anything for hosp stays, BUT we really had to fight for days to get them to cover his 6 weeks of IV at home, IF he stayed in the hospital they would cover 100%, if he came home it was mostly on us. We called the social workers called the doctor even called it took several extra days of him staying in the hospital just for the IVs for them to understand just one or 2 days of being inpatient would have paid for the month of IVs at home, it was just so frustrating and stressful.
Once again , I'll say a prayer there is no valve damage, so your husband doesn't have to go thru surgery. Justin is 17 and just got a pulm valve for the first time in his life, we chose tissue,(bovine) but there were alot of reasons why this was the right choice for Justin. Lyn www.caringbridge.org/nj/justinw

Lyn-Thanks for the heads up. The infusion clinic called about an hour ago. Nathan may be discharged tomorrow and we will stay at our hotel and they will set up someone to educate us about the Gentamycin and PCN pump. The rep was getting in contact with our insurance. Now I am not sure how all this is going to work out, but so far it sounds like as long as the doc prior authorizes, we should be okay. But with insurance, you never know!

Thank you for Al's link. The more info the better!

 

[Dennis S]

Valve Choice

Valve Choice

I am 48 years old, and in the process of deciding which valve to choose, with replacement of the Aorta valve in my immediate future. I have noticed two things: As the surgery date approaches, the surgery itself has become more real to me. I am thinking a lot more about how much I don't want to do this again than I was a few weeks ago. And, the doctors have consistently recommended the mechanical valve. I have always stressed thinking for myself, but the closer this thing gets, the more influence they have on my thinking. But I have a few more days to fuss with my choice.

Hi guys.

I introduced my hubby here around a month ago and have been lurking mostly since. We need serious help fast because he is having a very hard time with valve selection. Here is his story;

He was born with murmer and had no problems in childhood. At around 27 during DOT physical he was found to have AV regurg and was followed by a cardio every 6 month with echos/stress tests. Now 34, they thought time to do cardiac cath, no good visual with nuclear stress test. No real symtoms....just increase in fatigue but we thought could be age/work related but left vent getting larger. Cardiac cath was a nightmare, won't go into all details but he went home sweating, violent shaking and pain. Those symptoms never went away. Brought to ER one week post cath, deemed fine and sent home. Still didn't get better. 4 weeks later he spiked a fever on Sunday and away to the Mayo he went. He has endocarditis due to strep. Nothing seen on valve yet but another TEE will be done Monday. I ran home today to do a few more things and I am heading back tomorrow. If all looks good Monday we don't need surgery and he will come home with antiobiotcs IV 4 weeks and then 2 weeks with cultures negative then he will have surgery. If anything seen Monday he goes to surgery.

He is having a nightmare of a time and sent me here for help. He is very very active person. Motorcycles, ATV, uses a chainsaw at home. Scary to be on coumadin but he very very much does NOT like the idea of more surgery to come. He is hating the hosptial now, hates these IVs now, everything about it. He is afraid of coumadin and his lifestyle although he would have no problem wearing helmets or leathers etc. He is being told by family that when a St Jude (or any artifical valve) starts having problems there is no warning, it will just quit and that is it. He was very very interested in the On-X valve, but his surgeon only uses the ?Carbonmedix (not sure if that is right word) and St Jude.

We have a thousand more questions but I need to get this off so I can get responses to bring him tomorrow. We have asked the docs (but not the surgeon yet) and they all say it is up to him and I have yet to ask them if it will change things now that he has had this infection if that will affect valve selection. They did say that Nathan will always be very predisposed to this infection now that he has had it, even more so than having a bicuspid valve.

Thanks for your replies, Ann