My partner is scheduled to have a double valve replacement on the 15th of March 2000. Alex was diagnosed with having mitral stenosis and aortic incompetence in 1992 (8 years ago). He has been managing his health condition with medication for the past three years. However, a recent visit to his cardiologist (Prof. P. Manga)confirmed that his heart had enlargened significantly, necessitating valve replacement asap. We've met with the surgeon, Dr Martin Sussman (Milpark Clinic, Johannesburg, South
Africa), and he has recommended a mechanical valve for the mitral valve and a bioprosthetic (pig)valve in the aortic position. We are concerned about his valve choices as Alex is only 30 years old, and we understand that the prosthetic valve will require replacement in about 5-10 years time, which we would like to avoid if possible. We do understand that Alex will have to be on Waffarin for the rest of his life, but he has been taking this for the past 3 years with no associated problems. Furthermore, this medication will be necessary as he is to have a mechanical valve in the mitral position.
Please answer/comment on the following:
1. The use of two mechanical valves instead of the proposed machanical + bioprosthetic valves.
2. The use of St Judes bileaflet valves for both valve replacements.
3.We are very encouraged by the work done by the Cleveland doctors on minimal invasive surgery and would prefer this method to the standard surgery. But is it advisable in the case of double valve replacement? NB! repair of the mitral seems remote.
4. If he opts for two mechanical valves would the dosages of Waffarin be significantly increased?
Thank you. Looking forward to your response.
The use of two mechanical valves instead of the proposed machanical + bioprosthetic valves. This is commonly done and depends on the anatomic considerations of the valve. For example, given the profile of the left ventricular outflow tract and the mitral valve consideration, it may be more appropriate to use a lower profile bioprosthetic valve rather than mechanical.
You may wish to ask your surgeon about the rationale for the current recommendation.
2. The use of St Judes bileaflet valves for both valve replacements.
This may be technically impossible or provide for poor results due to anatomic considerations. Again, this is best discussed with your surgeon.
3.We are very encouraged by the work done by the Cleveland doctors on minimal invasive surgery and would
prefer this method to the standard surgery. But is it advisable in the case of double valve replacement? NB! repair
of the mitral seems remote.
Minimally invasive surgery may not be appropriate in this case. YOu may wish to ask your surgeon regarding on-pump options for a smaller surgical incision. However, exposure may present a serious problem of this non-standard approach.
4. If he opts for two mechanical valves would the dosages of Waffarin be significantly increased? The dosage of warfarin remains virtually the same.
My mother just had mitral and aorta valve replacement last November at the Cleveland Clinic. Both were replaced with a mechnical valve. It is my understanding that minimal abrasive surgery is not done when two valves are replaced. My mom is 64 years old and she recovered wonderfully. She just finished her rehab today. She told me that if she would have known that she would feel so good that she would have had the surgery years ago.
TO: CCF CARDIO MD JMF on Friday, February 25, 2000:
I am scheduled for an AVR and possible Mitral repair or replace
on April 11-14? under Dr. Cosgrove. I noticed an earlier post of yours that you know his work quite well.
Of all the options and procedures what concerns me most is 1) On-pump time and 2) anesthesia.
You may or may not be able to answer me but which surgeon at CCF is the quickest and best for an AVR using the Baxter C-E Pericardial valve and would my time on-pump be more or less under a Minimally Invasive approach?
I believe I have an aortic stenosis and am followed by a cardiologist under Kaiser P. in S. Calif. My symptoms are minimal at this time but do have scarring and calcium "due to age"! Cardiologist says may need valve surgery in a couple of years albeit she doesn't like surgery as it tends to "replace one problem with another"! Can you suggest sources and current research online or otherwise for my problem??
Dr. Cosgrove is one of the world's expert on valvular repair and will provide you with the absolute best ( shortest) pump time as is possible as well as the best in anesthesia. You are in very good hands!
Dec.98 I needed AVR. During surgery there was extensive hemmoraging which extended surgery time by 2 hours. Since there was a large amount of calcium buildup at the valve damage was done to the electrical nerves and a pacemaker was required. I then suffered blood clots in both legs, and fluid build up in the lungs. This extended recovery time by 3 months. When my first echo was done after surgery it was noted that there was moderate leakage around the artifical valve, (a St.Jude valve). Even though I'm fully recovered from the surgery, I still have moderate leakage around the valve, suffer from exhaustion, shortness of breath, and tightness in the chest which I'm sure if I continued to exert myself would increase to chest pain. Three weeks ago I received a letter from my sergeon that the St. Jude valve installed had been recalled by the manufacterer due to leakage problems. I'm now at the "rock and the hard place", with difficulties suffered in the first surgery being doubled if a second surgery it necessary.
Tom, I also had my mitral valve replaced 12/21/98 a St. Jude Model (New). I had fluid on the lungs that had to be drain through my back with a huge needle! I continue to have a lot of the same symptoms but, now I am told it's in my head. I also was contacted a few weeks ago because of my valve was recalled. I went Fri. 2/25/00 for an echo to see if I have leakage and 4 days later I still have not received the results. To be quite frank I have not heard from my Dr. at all! Do anyone know if you have your testing at a Hosp. not your Dr. office, how long will it take to get results. I am at this point nervously waiting. This forum is truly a Blessing, Thank You.
Following our latest consultation with the surgeon he has informed us that he will be using Medtronic-Hall valves for both the mitral and aortic valve replacements. Can anyone provide comment on the use of these valves and any post-operative problems that may be associated with them.
I had an AVR June 99 and seem to be doing fine my question is concerning coumadin and bleeding. I am on active duty in the USAF; I have been in the service for 18 years with the valve problem the whole time. The problem now is now I have had the valve replaced (in great shape no problems)the Air Force wants to discharge me due to the use of comadin 3mg day, they state as I am aware that I am at an excessive risk for bleeding. Is there any kind of stats on death rate from bleading/injury for non medicated people verses people on coumadin.
MY mother, age 63, underwent 6 way bypass 10 years ago. She also has had several angioplasties since, as well as cartoid surgery. She has done pretty well over the years, but has had aortic stenosis, I believe diagnosed when she had the bypasses. She stayed at a fairly low percentage I guess for a long time, but now are saying that it has gotten much worse. I don't know the percentage, but her cardiologist is recommending surgery to replace the valve. She has been getting very tired and short of breath. She saw the surgeon that did her bypasses to get his opinion and he told her that in her case the surgery is very risky because he had used the mammary artery when doing her bypasses 10 years ago. Could you tell me why the risk is so much greater because of this factor. He is saying that if she doesn't have the surgery it will be down hill from now on. I do not know how quickly this means, but that her quality of life will be down hill from here. If she has tha surgery, he is saying that there is a 1 in 5 chance of survival because of this mammary factor. He also is saying that she has congeative heart failure because she has swelling of her ankles, and has put on about 5 pounds. I have not talked with her doctor personally yet, but plan on doing so.
I have AS, and an ecg put me at a 1.1 cm valve opening, with no enlargement, and no noted pressure problem. I have no real symptoms, but I do have a loud murmer. My MD said that the cardiologist didn't even want ot see me until I reached 0.8 cm.
I have questions.
I go back for another ecg in June. I am concerned because I have read that many people have the AVR (no, I don't want to rush it) when they are at 1.0 cm. I also read that AS holds steady, then tends to go south fast. As the doctor hadn't picked up the murmur six months before that, I am concerned with the possible rate of progression. I am not sure what the criteria are for making the decision to go ahead. Does 0.8 seem a late starting point for a 47-year-old?
I don't want to suddenly be told I need an AVR and not be ready with a valve decision and a plan. I don't want to have it done in a local hospital by a local cardiologist. No offence to them, but I want the best odds I can get - such as CCHC. I don't know how to go about setting up such a thing when I don't know when it may happen and don't have any info to forward from a cardiologist. Is there someone at CCF who can help me be prepared when it does happen?
Who can I go to to help me decide what kind of valve might be best for me? I lean toward a homograft, but I'm sure there would be a waiting time due to a small supply. Is there a "list" that you need to be on?
Is it worth a second operation (porcine valve) to hold out for the bioengineered grow-your-owns that are being researched now? And does the type of valve I get determine what I will be able to get later if I need a future operation?
I am one of the many on this site who have gone the same route you are facing and if nothing else can offer some "I understand what you are feeling " comments but also offer a little info and thoughts from one who has been there.
I discovered I had the congenital bicuspid aortic valve when I was 36...not bad then and was told it may never get so bad I would have to have anything done...let them know if I got bad shortness of breath etc. Well, it happens slow, and in the meantime you know you get older. I didn't really think about it until it really dumped me last July. Family doctor thought it was my asthma and tried a couple of things for that. Went into congestive heart failure. Finally insisted I see a cardiologist. He got that bout of chf under control and found my aorta working at about 25% or less. SURGERY. I chose the Cleveland Clinic for just the same reasons you did, plus my cardiologist was all for it. I am 56 now and am basically pretty fit other than the heart deal.
I dug into all the knowledge I could find on the situation and remedies and choices. I always knew that I did not want a mechanical -- coumadin is rat poison -- my life style, I eat veggies, have wine, and farm and ride a motorcycle. I didn't think I would be willing to make the lifestyle changes a mechanical would require , plus I knew people often had to have resurgeries even with mechanical valves. I opted for a homograft. I too was worried about the availability, had no problems. They are cleansed and cyrogenically (?) stored at the facilities that have them. The CC is a fantastic place to go to...the people from technicians up to surgeons are fantastic and the facilities are wonderful.
Get all the info you can now...just be a resource hog. Settle on a plan A and a plan B, trust in your higher power, get the best medical team you can and relax as much as you can. I know that is the hardest thing for you to do right now. But it is what everyone told me and THEY WERE RIGHT. The pain is managed so well that it is really low, low on the list of problems. Sneezes were my bit buggaboo. I was released from the Clinic on day 5 with only Tylenol for pain. Never had a bod problem. When you are home, take it very easy but do WALK, WALK, WALK like they tell you to. I am 9 weeks post surgery and virtually doing everything only even better because I can breath and have no pain. I'm on some blood pressure medicine to help my heart realize it doesn't have to work so hard. I hope that will pass too and I can be like my 77 year old Dad and take only a daily vitamin.
I'd say go for the homo like you're thinking, find a place to do it and worry about resurgery in 20 years...who knows what the options will be then...maybe the grow your own will be commonplace by then...maybe they can zap us with their fixer and not even have to operate!
Good luck. If you'd like to chat my Email is ***@****
I have been diagnosed with endocoditis and I am currently being treated with antibiodic every 4 hours, for the next 6 weeks. After I had an ecocardiogram, the doctor found that I had a murmur on the aortic vale. The recommendation is that I will need a valve replacement of the aortic valve, since my valve is at.8.
I also have the infection on the Mital valve.
A friend of mine had surgery done by Dr.Cosgrove, I believe last year and he is doing very well.
I would like to get your thoughts on my condition and if I can make an oppointment with Dr. Cosgrove for his opinion.
Bob, Jean gave you good advice. I too had a homograft put in 5 weeks ago, I didnt have a waiting period at all. The new stentless porcine valve is the only other valve that I would have picked if I didnt get the Homograft. The mechanicals I hear are noisey. And you have to take blood thinner for the rest of your life. I am 45 and I am back to work already. It is not as bad as you think. Harvey, ***@****.
Thank you for responding, Jean and Harvey. I very much appreciate it. It doesn't seem possible to post questions any longer - the site always seems to say it can't take any more questions. I guess they just can't have time for everything.
I've been to many places on the Web for information, and a lot of it is contradictory. However, I think I'm looking at a homograft or other biological, regardless of the reoperation. I don't think I'd thrive on the warfarin, although I can see why many people might choose the mechanical. I guess it's the lack of connection to expert help and advice (cardiologist/clinic) and the unknown of the rate of progression that keep me off-balance.
I'm not thrilled that the Dr. and (apparently) the cardiologist are looking at this as *ho-hum*, no big deal. It IS a big deal. I need to be as prepared as possible to make those decisions that I will need to make. I don't want to wind up taking a certain path just because that's what that particular doctor is used to doing, and just assumes will be best for you. Some doctors seem to feel that if you are under 50, you should automatically go for the mechanical, and just adjust your life to the coumadin. All fixed. Go home.
Interestingly, apart from those who found out at a very early age, or who have age-related heart problems, there seems to be a common thread of people who are very active, perhaps used to carrying heavy weights, etc. This would seem to be a factor in abusing the valve, particularly if it were bicuspid. I wonder what the percentage is of bicuspid vs. tricuspid valves found in initial surgery.
My 77 year-old mother-in-law was informed several months ago that her mitral valve is severely clogged. She had rheumatic fever as a child. She is very frightened about valve replacement and doesn't know what to do. What exactly is involved with mitral valve replacement, how long is recovery time, and how long will she need to be on blood thinners after surgery. Mind you, my mother-in-law would just like to let things be and she hopes nothing bad happens to her in the meantime. Can anyone help by letting me know what I should tell her?
Thanks so much!
I am a 78 year old male & had an aortic valve replaced with a pigs valve in March 1984. I am told by my cardiologist there is now a considerable amount of leaking. What are my chances and how urgent is surgery at this time? Thank you.
I had an aortic Valve replaced with a pigs valve 16 years ago. Now I am told,there is considerable leakage and I am in need for replacement surgery. What are my chances and how soon should this be done. I am a 78 years old male and have been playing tennis until now. Thank you.
Julius, Only your cardiologist can help tell you how badly you need surgery and how soon it must be done.
Sixteen years is a pretty good run for a porcine valve from what I've read, so it wouldn't be unusual for you to need repeat surgery around this time. Especially if you're active. Also note that once they start to leak and fail, the valve failure process seems to go fairly rapidly.
As far as your age, most sources don't seem to feel it to be as much of a risk factor as you might think, assuming there are not other health problems that would be factors. The concensus appears to be that the benefits greatly outweigh the risks. Granted, surgeons may have a different slant on what is an acceptable risk than patients do.
If you're starting to have symptoms and limitations, a new valve is probably the only realistic answer in the long run. The real question is when would be the best time to do it. That is between you and your doctor.
I am a 36 year old male about to have aortic valve replacement surgery at the Royal Brompton Hospital in London. My surgeon advises me that a mechanical valve is probably the best, though he admits that others might advise a 'Ross Procedure' - he thinks that this is somewhat risky and that the advantages are only potential ones, or 'conceptual' as he puts it.
I haven't got much time to make my decision but I'm really unsure.
What are the disadvantages of warfarin? (is this the same as Coumadin?) Do you have to moderate alchohol intake with it? And, in particular, is a mechanical valve noisy? - How noisy, I'm a very light sleeper!! This might sound trivial but it's really troubling me.
Some of your correspondents say; don't worry about re-operation and choose a homograft, and that they might last 20 years. Is this sensible advice, can someone evaluate it?
Dear Sean. I have had a mechanical valve put in to replace my leaking bicuspid aortic valve. First Warfarin is the same as Coumadin and you do have to limit your consumption of alcohol. Lucky for me I didn't drink anyway so it didn't affect me. But I know of others who can only have a couple of beers before it starts getting to them. When before they just drank all they wanted. To answer your question about the valve and how noisy it is. Let me tell you it can be noisy. When I'm alone in a room I can hear it quite loud and others can as well if they are near me. It sounds a lot like the ticking of a clock as the valve opens and closes. But it's also something you get use to quickly. Sometimes I won't notice it at all and will have to think about it and listen hard just to hear it myself. It does grow on you. But overall you have to be the one to decide whether or not you want a homograft or a mechanical valve. Both have their pros and cons and it's up to you to decide. I hope I've helped you a little. Later.
i am 46 yrs old .i have had quad bypass surgery at 29 yrs old and again at 35 years old. i now haveaorta valve that is .07 according to cc,i need new valve and 2 more bypass. dr tells me mechanical is the way to go,cant afford to go back again and replace pig valve. how much is a mechanical valve going to change my life hoping of course i can live thru the operation ,,this being no.3 time
I had a wonderful Doctor that told me that he wouldnt do the ross procegure on anyone older than a teen ager. He said it just doesnt work as well on older people. I beleived him. I have a Homograft and I dont take any medicine other than a baby asprin a day. If you want to take rat poisan every day for the rest of your life to thin your blood, I guess the mech. is for you. It seems that even the mech. vales dont always last a lifetime like they say they do. Remember that a blood thinner will restrict you if your lifestyle is at all active, and most 36 year olds are. And also remember the noise factor. There is no guarantee no matter what valve you get but you have to decide and then come to piece with yourself about your decision .
I know that things have been rough for you but you WILL make it .
Dont pick the mech. valve just for monetary reasons. Look around on this site and you will see that it doesnt always last a lifetime. Your life is at stake. Money should not be what you are thinking about now. Homograft is also an option, not just a pig valve. Also, as I have said before there is the noise factor with the Mech. Valve. Im sure you will make the right desision, I too am 46. 8 Weeks Post Op.
I would like to know if you know how many children have had mitral valve replacements. My daughter was 14 months old when she had her 1st. mitral valve put in. She was 5 years old when she had her 2nd mitral valve put in. She will be 8 years old this year and she is doing very well.
My partner (30 years) has had double valve replacement (mitral and aortic) and had mechanical valves put in, because he didn't want to have the op again and his surgeon was going to put in a mechanical in the mitral position anyway. He is almost 4 weeks post-op and on Waffarin (same as Coumadin). Being on Waffarin can be taxing since you will need to have PI and INR counts done regularly (i.e. need to take blood samples) so that the dosage of Waffarin can be altered accordingly. He needs to have his PI between 35-40%. Yes, the valves are noisy but you do get used to them. In terms of lifestyle changes his cardiologist hasn't restricted his diet/alcohol intake but I guess alcohol should be taken in moderation. While mechanical valves often seem to be the choice in younger patients it is worthwhile to note that a lot of research is being done on valves, especially to improve the life of bioprothetic valves. Who knows in a few years time you may even be able to grow your own valve. Also not much data on life expectencies on homografts is available, but it does look very promising. All in all it appears that with valve replacement (provided their are no major complications) allows the heart muscle to be much stronger and while there are risks associated with re-operation it is usually quite successful. Whichever valve you decide to go with, make an informed decision not a hasty one.
I know how you feel. My daughter was born with a Truncus
Arteriosis and had her first open heart surgery at 2 months (that
was when they reconstructed her heart). Since then, she has had a total of 5 cariac caths, stents placed, and her 2nd open heart at 6 years old. She is now almost 11 and you would never know all the problems she has had just by looking at her. We know that she still has at least 2 more open hearts and numerus caths to go through; one of them being an aortic valve replacement due
to at this point moderate regurgitation. The main reason I am responing to your comment is that I am well aware of what it is like to raise a child that has chronic cardiac problems. In case you have not already heard about it, there is a place in Great Barrington, Ma.; called The Edward J Madden Memorial, Open Hearts Camp. The only price of admission is having open heart surgery. It is for children 7-13 years old. They go for 2 weeks during the summer and get to meet other kids like them so they know they are not so "different" than other kids. Kids come there from all over the US. If your interested, all I have is there phone # (413)528-2229 and ask for Ken. Good luck.
My son had surgery to replace his aortic valve 5 years ago. The only options we were given were mechanical or pig and the mechanical was highly suggested. My son is 19 and having alot of problems dealing with taking coumadin. What is the Ross procedure and why wasn't it given as a choice for my son. He is also experiencing hair loss and I feel that this is because of the coumadin.
Had an aortic valve repplacement with St. Jude (Mechanical Valve) 9+ years ago. Noise is only a problem if one lets it be. About the same as a watch ticking. NO BIG DEAL!
Wafrin and Coumadin are same family, but not always same, i.e. Coumadin and generic wafrin not accepted as same by some cardiologists. Anyway, been on Coumadin since valve replacement. Yes, it requires monitoring, but again not a huge problem. Blood tests sometimes monthly, sometimes as often as weekly depeding upon what has changed. Have had other surgeries, broken arm, and CABG since valve replacement. Management of blood thinners done well and again not a big deal.
Get a great surgeon and cardiologist, go to major cnter that does lots of valve inplants and plan for a long and good life.
Its been about 12 months since I had my Mitral valve replaced by a St Judes. Brought on by Endocarditis. I'm on Warfarin but check my own INR with a finger ***** portable system. I didnt fancy the idea of having a needle shoved in my arm once a week or month for the rest of my life. Its also useful to take on overseas trips. Veins harden after a while. I have noticed Alcohol affects my INR so moderation is a factor here.
I would be interested to hear about other experiences of endocarditis and what their causes were.
Teresa, My daughter had openheart surgery at 18mos. She had an atrial ventricular septal defect repaired and replacement of her mitral valve. She did very well. At 9 years she had to have her prosthetic valve replaced because she outgrew her first valve. They were able to put in an adult size valve and we were told that unless there are problems this valve could last for life. She continues to do well. She is now 16 years old. I was told that when she first had surgery,at that time, there were not many success stories. Well we are very happy to be a member of the success stories. Technology changes quickly! Hope your child continues to do well.
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