Bradley White
Well-known member
It's time to find new doctors. period.
Help Support Valve Replacement Forums:
G
geebee
You need to be fighting. I would want to know why a surgeon who decided you needed to be on coumadin anyway would not use mechanical valves. Your cardio seems behind the times. Yep - gotta get new ones.Thriell said:Believe me, I've had more than one heated discussion with more than one doctor about that very subject.
When Dr. Watkins first did the surgery, he told me very plainly that I'd be on blood thinners for six months. Six months later, I had to beg and plead to get a cardiologist to call him and verify that statement because I had been in the hospital without coumadin and I didn't want to go back on it. When I finally DID convince someone to call Dr. Watkins, he changed his story to say that if I had only had ONE valve replaced, I wouldn't need the blood thinners, but since it was, in fact, two valves, then he felt I should be on the blood thinners as a precautionary measure.
I didn't agree then, and I don't agree now, but I got tired of fighting about it with every one I know.
I agree with everyone here, I think you need to find some new doctors, some of the things you have been told are pretty scarey.
A lso my 19 year old son will be having his 5th surgery next week. I'm certainly not saying 5 OHS is common, but I know many people, especially children & adult w/ congenital heart defects that have had 3 or more surgeries. As for coumadin because you have 2 tissue valves, honestly I have been involved w/ heart support boards for about 7,8 years and i have never heard of another patient being on coum for that reason.
I also would get hard copies of all of my charts. Good luck, Lyn
A lso my 19 year old son will be having his 5th surgery next week. I'm certainly not saying 5 OHS is common, but I know many people, especially children & adult w/ congenital heart defects that have had 3 or more surgeries. As for coumadin because you have 2 tissue valves, honestly I have been involved w/ heart support boards for about 7,8 years and i have never heard of another patient being on coum for that reason.
I also would get hard copies of all of my charts. Good luck, Lyn
T
Thriell
geebee said:
Well, like I said, originally he talked about coumadin for six months and then he changed his tune when it was time to come off of it. He said the coumadin was because of the Rheumatoid Arthritis I have.
I had the arthritis way before the surgery - it probably CAUSED the damage to my valves - so if he was going to leave me on blood thinners because of the arthritis, then he should have gone ahead and used a mechanical valve. I would have appreciated the 30-year life expectancy of the mechanical valve a lot better than the 10-year life expectancy of the valves I have (which don't seem to have lasted TWO years! *GROWL*
)lynlw said:
I'll start looking around next week.
lynlw said:
Just to be sure before I go off on somebody, does the fact that I have Rheumatoid Arthritis make any difference in whether or not I need blood thinners?
I've thought long and hard over the last two years and I keep coming to the same conclusion: I should have had mechanical valves. I just wish I knew then what I know now.
Thriell,
I am just going to be blunt - many cardiologists do not know enough to make the assessment you have been given. I have found myself wondering since my surgery why they (cardios) don't spend some time in surgery observing the actual surgeries of their patients. I had been going to the same cardiologist for 13 years - until after my surgery and found out he really didn't know as much as I thought he did. Anyway, my surgeon, Dr Ryan, said he views the 1st 3 surgeries with the same level of risk. The 4th surgery is where he said it gets more complicated. From what I have heard since my consultation with Dr Ryan, he tends to get referrals for re-ops because of his skill level. (My vote's still out on my new cardiologist until I get further along in my treatment with him. I am not as naive as I was before the surgery!)
I am just going to be blunt - many cardiologists do not know enough to make the assessment you have been given. I have found myself wondering since my surgery why they (cardios) don't spend some time in surgery observing the actual surgeries of their patients. I had been going to the same cardiologist for 13 years - until after my surgery and found out he really didn't know as much as I thought he did. Anyway, my surgeon, Dr Ryan, said he views the 1st 3 surgeries with the same level of risk. The 4th surgery is where he said it gets more complicated. From what I have heard since my consultation with Dr Ryan, he tends to get referrals for re-ops because of his skill level. (My vote's still out on my new cardiologist until I get further along in my treatment with him. I am not as naive as I was before the surgery!)
G
geebee
Thriell,
Try not to get too upset about things that cannot be changed. The tissue valves have kept you alive so you are ahead of the game. Just make sure you have the best team available to make the next choice. Even with a mechanical there are no guarantees. I had to have my second OHS only 2 years after the first because of scar tissue encroachment on the valve and it was a mechanical.
We can only do our homework and make the best choice with the information in front of us. Just remember that you need a team of doctors that will allow you to make choices, then you will know you are in good hands.
Try not to get too upset about things that cannot be changed. The tissue valves have kept you alive so you are ahead of the game. Just make sure you have the best team available to make the next choice. Even with a mechanical there are no guarantees. I had to have my second OHS only 2 years after the first because of scar tissue encroachment on the valve and it was a mechanical.
We can only do our homework and make the best choice with the information in front of us. Just remember that you need a team of doctors that will allow you to make choices, then you will know you are in good hands.
temp69
Well-known member
sending good vibes your way
sending good vibes your way
i'm just no expert and can't think of a damn thing to say except listen to the advice given so far, find new doctor, and think good thoughts about your body and if you need another surgery, they're pretty competent about these things so it will go well and you will be fine.
good luck and god bless.
sending good vibes your way
i'm just no expert and can't think of a damn thing to say except listen to the advice given so far, find new doctor, and think good thoughts about your body and if you need another surgery, they're pretty competent about these things so it will go well and you will be fine.
good luck and god bless.
Just to be sure before I go off on somebody, does the fact that I have Rheumatoid Arthritis make any difference in whether or not I need blood thinners?
Here is a lik to one of the leading experts (and Members here)in Coumadin http://www.warfarinfo.com/indications.htm this pages goes to why you use coum.
I am just curious, who is managing your coumadin? and how you been staying in what range they want you to be in?
I've thought long and hard over the last two years and I keep coming to the same conclusion: I should have had mechanical valves. I just wish I knew then what I know now.[/QUOTE]
I wouldn't worry about the fact you have the tissue valves, now as others said, but I would try to find out why you are taking coum,and IF you can stop, since most often the reasons people choose to get tissue valves, knowing it will mean more surgeries, is because they don't want to take coum.
Here is a lik to one of the leading experts (and Members here)in Coumadin http://www.warfarinfo.com/indications.htm this pages goes to why you use coum.
I am just curious, who is managing your coumadin? and how you been staying in what range they want you to be in?
I've thought long and hard over the last two years and I keep coming to the same conclusion: I should have had mechanical valves. I just wish I knew then what I know now.[/QUOTE]
I wouldn't worry about the fact you have the tissue valves, now as others said, but I would try to find out why you are taking coum,and IF you can stop, since most often the reasons people choose to get tissue valves, knowing it will mean more surgeries, is because they don't want to take coum.
Ross
Well-known member
Thriell said:I would have appreciated the 30-year life expectancy of the mechanical valve a lot better than the 10-year life expectancy of the valves I have (which don't seem to have lasted TWO years! *GROWL*
The life expectancy of mechanical valves are lifetime. Sure some get replaced due to infection or overgrowth of tissue, but not valve failure.
Thriell,
This could have nothing to do with the tissue valve. Katie D's and my sister had to have a 2nd open heart surgery on her St Jude mechancial valve 2 yrs after her original surgery. The surgeon thought going into the surgery he was going to have to put another mechanical valve but ended up tightening the valve into place better. The surgeon was not sure what caused the need for a second surgery. Your best plan is to first find a doctor you have confidence in to give you correct information about your status.
This could have nothing to do with the tissue valve. Katie D's and my sister had to have a 2nd open heart surgery on her St Jude mechancial valve 2 yrs after her original surgery. The surgeon thought going into the surgery he was going to have to put another mechanical valve but ended up tightening the valve into place better. The surgeon was not sure what caused the need for a second surgery. Your best plan is to first find a doctor you have confidence in to give you correct information about your status.
RCB said:If the surgeon didn't know why the second surgery was needed, what reason did he give for doing the surgery again?
The reason they did the 2nd surgery was basically my sister was back where she was before her 1st surgery, SOB, tirednessed etc. The doctors could tell the valve was leaking but were unsure of the specifics until the surgeon got in there and determined he could tighten the valve and not replace it. (Our sister did not have insurance for her first surgery and, to be honest, we always felt the care she got the first time was sub-standard. Everything from the condition of the hospital, staff etc. She came home with a staph infection from that surgery.
)
T
Thriell
MaryC said:(Our sister did not have insurance for her first surgery and, to be honest, we always felt the care she got the first time was sub-standard. Everything from the condition of the hospital, staff etc. She came home with a staph infection from that surgery.
I didn't have insurance for my surgery either, but the people in the hospital's business office were more than happy to help me with the paperwork to get Medicaid to pay for it. All $105,000 of it.
Thriell,
I think my sister did end up getting a lot of the bill taken care of - not sure if it was written off or covered by medicaid or both. She plugged away for years paying on it as best she could. She's had insurance since then - thank goodness. Unfortunately she has more than heart issues to deal with. Good luck with your situation. Once you find the right doctor things will be clearer in terms of what you need to do.
I think my sister did end up getting a lot of the bill taken care of - not sure if it was written off or covered by medicaid or both. She plugged away for years paying on it as best she could. She's had insurance since then - thank goodness. Unfortunately she has more than heart issues to deal with. Good luck with your situation. Once you find the right doctor things will be clearer in terms of what you need to do.
Dehiscence
Dehiscence
If you care to know more, do a med search for "dehiscence echo heart valve",
you may learn more in afternoon of reading than most doctors know. Maybe even some cardiologists.
The question now is what cause this to happen?
Dehiscence
What you have described as "tighten the valve" sounds like classic dehiscence, which is when the suture ring separates from the tissue around the valve seat. It is very much like having to repair a repair in fabric that has come loose. This happens in all surgeries both mech and tissue. However, I have seen several studies where it is quite easy to observe this effect (called jets as high speed blood flows into slower speed blood that pools in the heart chambers) on a color Doppler echo. By the time it starts causing SOB, there is serious separation and the valve can be observed "rocking" back and forth, pivoting on the attached stitches as the heart beats. This observation would be completely different than if the jets were cause by a stuck leaflet. I would be very surprised if an ordinary echo wouldn't show the difference, much less a TEE where it would be a certainty.MaryC said:The reason they did the 2nd surgery was basically my sister was back where she was before her 1st surgery, SOB, tirednessed etc. The doctors could tell the valve was leaking but were unsure of the specifics until the surgeon got in there and determined he could tighten the valve and not replace it. (Our sister did not have insurance for her first surgery and, to be honest, we always felt the care she got the first time was sub-standard. Everything from the condition of the hospital, staff etc. She came home with a staph infection from that surgery.
If you care to know more, do a med search for "dehiscence echo heart valve",
you may learn more in afternoon of reading than most doctors know. Maybe even some cardiologists.
The question now is what cause this to happen?
briansmom
Well-known member
I hope that 2 is not the limit!!!! My son just had his 2nd and while a 3rd is not ideal, there is nothing that says it can't be done. Good luck with your 2nd opinions. Keep us posted.
gijanet
Well-known member
(((hugs)))
(((hugs)))
I'm so sorry that you are having to deal with all this. I can relate to your frustration and disappointment as we have experienced a similar situation with my daughter's valve. Her repair didn't hold up. We found out one month post-op. It definitely was a blow.
I can't offer any new info/advice - just reiterate what the others have said about getting a new card ASAP! My daughter has had five heart surgeries, three involving her valve, so that bit of info about two surgeries is definitely a crock. While fewer is better, definitely a crock. I hope you get some good answers soon. Keep us posted. Many hugs. J>
(((hugs)))
I'm so sorry that you are having to deal with all this. I can relate to your frustration and disappointment as we have experienced a similar situation with my daughter's valve. Her repair didn't hold up. We found out one month post-op. It definitely was a blow.
I can't offer any new info/advice - just reiterate what the others have said about getting a new card ASAP! My daughter has had five heart surgeries, three involving her valve, so that bit of info about two surgeries is definitely a crock. While fewer is better, definitely a crock. I hope you get some good answers soon. Keep us posted. Many hugs. J>
T
Thriell
Here's the latest
Here's the latest
When I saw the Cardio a week ago, he put me on Diovan and gave me orders for my family doc to do a blood test today. While I was there, I spoke with my family doc about what the cardio had to say (or NOT say, as the case may be). Apparently, the cardio send my family doctor the test results, 'cause he was reading the cardio's notes to me while I was there today.
The cardio told me "You've got a valve leaking" and quickly mentioned something I couldn't quite hear about a valve having a small blockage. I thought that was bizarre, because 3 weeks ago they did all kinds of tests looking for blockages in my arteries and found nothing.
Anyway, what his notes had to say was severe mitral regurg and severe (Mitral? don't remember 100%) Stenosis.
When I told my family doc that I wasn't overly impressed with that cardio, he pointed out that there is a very limited selection of cardios within a 200 mile radius and, instead of taking another blind shot at finding one who's worth a damn, he referred me back to Dr. Watkins, the surgeon who put these valves in.
Actually, I'm okay with that. My only issue with Dr. Watkins is this bit about the blood thinners and I intend to speak with him about that. Either I'll get a good reason for taking blood thinners with tissue valves or I'll get the okay to quit them.
I looked up an old post of mine from before the surgery, and I was reminded that the reason he didn't use Mechanical valves was because of the Rheumatoid Arthritis and the medication associated with it. He didn't use the mechanical valves because he didn't want me on the blood thinners, so he used tissue valves and told me to keep taking blood thinners anyway?
It also occurrs to me that Dr. Watkins wasn't the one who gave me the song and dance about needing coumadin because I had two valves. That message was delivered by a doctor whom I had to beg for three days to call Dr. Watkins and, frankly, I'm seriously wondering if that was what Dr. Watkins said or if I was told that Dr. Watkins said it just to make me shut up.
Again, I'll be talking to Dr. Watkins about it.
Okay, I have one question then I'm gonna give my arthritic fingers and your eyes a rest.
1) In December I had a nasty Staph infection. My temp was 105 when they put me in the abmulance and my blood pressure was "practically nonexistant" (to quote my favorite Starfleet Medical Officer). They determined that this was a stronger variation of Staph, MSRA. I was on some awesome antibiotics for the two weeks I was in the hospital and another 2 weeks after I got out. Is there a chance, in spite of all the antibiotics, that this infection got to my valves and screwed them up? My Family doc says that if that was the case, I'd have had to have the surgery several months ago. Opinions?
Here's the latest
When I saw the Cardio a week ago, he put me on Diovan and gave me orders for my family doc to do a blood test today. While I was there, I spoke with my family doc about what the cardio had to say (or NOT say, as the case may be). Apparently, the cardio send my family doctor the test results, 'cause he was reading the cardio's notes to me while I was there today.
The cardio told me "You've got a valve leaking" and quickly mentioned something I couldn't quite hear about a valve having a small blockage. I thought that was bizarre, because 3 weeks ago they did all kinds of tests looking for blockages in my arteries and found nothing.
Anyway, what his notes had to say was severe mitral regurg and severe (Mitral? don't remember 100%) Stenosis.
When I told my family doc that I wasn't overly impressed with that cardio, he pointed out that there is a very limited selection of cardios within a 200 mile radius and, instead of taking another blind shot at finding one who's worth a damn, he referred me back to Dr. Watkins, the surgeon who put these valves in.
Actually, I'm okay with that. My only issue with Dr. Watkins is this bit about the blood thinners and I intend to speak with him about that. Either I'll get a good reason for taking blood thinners with tissue valves or I'll get the okay to quit them.
I looked up an old post of mine from before the surgery, and I was reminded that the reason he didn't use Mechanical valves was because of the Rheumatoid Arthritis and the medication associated with it. He didn't use the mechanical valves because he didn't want me on the blood thinners, so he used tissue valves and told me to keep taking blood thinners anyway?
It also occurrs to me that Dr. Watkins wasn't the one who gave me the song and dance about needing coumadin because I had two valves. That message was delivered by a doctor whom I had to beg for three days to call Dr. Watkins and, frankly, I'm seriously wondering if that was what Dr. Watkins said or if I was told that Dr. Watkins said it just to make me shut up.
Again, I'll be talking to Dr. Watkins about it.
Okay, I have one question then I'm gonna give my arthritic fingers and your eyes a rest.
1) In December I had a nasty Staph infection. My temp was 105 when they put me in the abmulance and my blood pressure was "practically nonexistant" (to quote my favorite Starfleet Medical Officer). They determined that this was a stronger variation of Staph, MSRA. I was on some awesome antibiotics for the two weeks I was in the hospital and another 2 weeks after I got out. Is there a chance, in spite of all the antibiotics, that this infection got to my valves and screwed them up? My Family doc says that if that was the case, I'd have had to have the surgery several months ago. Opinions?
Thriell:
Have you been tested for other autoimmune diseases?
My youngest sister (now 50) was diagnosed with lupus in 1999 & fibromyalgia and within the last year was diagnosed with RA. (She's on disability as a result of the lupus.) She's on an infusion treatment for the RA, can't remember the drug but it starts with an R and is I believe for severe RA that has been resistant to other drugs.
I'm sure your rheumatologist has been brought into all of this by your cardiologist. What has he/she said?
Have you been tested for other autoimmune diseases?
My youngest sister (now 50) was diagnosed with lupus in 1999 & fibromyalgia and within the last year was diagnosed with RA. (She's on disability as a result of the lupus.) She's on an infusion treatment for the RA, can't remember the drug but it starts with an R and is I believe for severe RA that has been resistant to other drugs.
I'm sure your rheumatologist has been brought into all of this by your cardiologist. What has he/she said?
T
Thriell
catwoman said:
When I first started showing symptoms from the RA - particularly the red spots caused by the vasculitis that goes with my RA - I was tested for Lupus, Fibromyalgia, and every kind of cancer known to mankind. I've seen parts of my own body which no man should see.
I've heard of that, but the name escapes me at the moment. I was taking Embrel (home injections twice/week) for a while, but at $1200/month, I had to give it up when I got laid off and lost my insurance. I've since gone on disability because of what the RA has done to my hands.
I'm sorry to report that the rheumatologist went the way of the Embrel. No job ... no insurance ... no rheumatologist.
