New here--Mitral Valve Replacement very soon...

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Ella4hubby

Well-known member
Joined
Oct 14, 2012
Messages
55
Location
Montreal, Canada
Hello all! I am new to this forum...been reading and learning for several weeks now. My husband has a prolapsed Mitral Valve with severe regurgitation and is due for a Mitral Valve Replacement in about a week. Well, actually we're not sure exactly when. Basically he is "on-call" sometime after the 8th of November--yup--that's this coming Thursday. We're guessing it will be the week of the 12th or the week of the 17th. As many have said here, I think it's the waiting that's the worst! Feels like we're holding our breath, waiting for a big accident to occur. On the one hand, I guess it's good that we can prepare for it, but on the other hand, I am a nurse so I must say that my imagination has had lots of time and tons of fodder for dreaming up all kinds of nasty possibilities, complications, and bad scenarios!

Strangely enough, I have been suddenly motivated to do all kinds of cleaning, organizing cupboards, fixing things that have been waiting months....OK years...to get done. Not much of these things are really necessary for us to be ready for the surgery, but it kind of feels like when I was expecting our first child--that nesting instinct kicking in perhaps--guess it may be a woman thing, or just a me-thing! :)

My husband is 60 years old, and other than the serious valve problem, he is in good health with no other health issues and on no meds. That has kind of made it harder for him to accept the need for surgery now, but the cardiologist and surgeon agree that now is the time before he develops symptoms and decreased heart function.

We are still in the throws of trying to decide on what kind of valve to go for...have found lots of good info and patient experience on that whole question on these forums.

I just want to say I've so appreciated having a place where others know what we're going through. And I certainly appreciate all that I've learned here from an obviously great group of people!
 
Welcome fellow Canuk. I too was put on the waiting list and it was said and done within a week.......yep it was a shocker, as we all know how our Canadian waiting list works. Although it worked rather fast for me.

As for valve choice, talk to your surgeon. In may case, my surgeon said, "if I can repair it I will, if I can't, I'll install a mechanical valve.......cause I don't think you'll want to go through this again".

For your own peace of mind, ask questions to your surgeon. (you can ask here too)
 
Did they give you a reason that they couldn't repair it? Repair would be the best of both worlds...like with mechanical you shouldn't need a re-op and like with tissue you shouldn't need warfarin.

I also had prolapse mitral valve with severe regurgitation (asymptomatic for 40 years...right up until surgery) that was repaired 8 months ago. It also had a pretty hefty amount of calcification. My surgeon was so sure that he could repair it that he didn't even ask me what valve type I wanted.

I don't know the rules in Canada about getting second opinions or choosing different surgeons, but I would look into repair. My surgeon actually published some research indicating that the biggest factor to determine whether a mitral valve is repaired or replaced is the experience level of the surgeon (not the condition of the valve).
 
Welcome Elle4hubby. I had a mitral valve repair at the age of 60 at the Montreal Heart Institute. I was also "on call" and had to wait for them to call me. May I ask which hospital your hubby is supposed to have his surgery at?

As was just mentioned, is there a reason he cannot have a repair?

Best of luck, and keep us informed.
 
Hello all--Appreciate your questions and sharing of experiences. In my husband's case, unfortunately this was not caught early enough...at least that is my view of it. Sorry, this is a long story but if you are brave, here goes:

About 3 1/2 years ago, in 2009, DH suddenly had an episode of shortness of breath, unusual fatigue, and a strange cough if he breathed deeply and especially at night when lying down. We thought it was a virus and he was checked briefly by a doctor at the walk-in clinic...we didn't have a family doctor at the time. Doc ordered x rays that showed serious problem--infiltration of fluid in the lungs, fluid around the base of the lungs,and other stuff--radiologist's assessment: cardiac decompensation with edema (!) I was concerned but the doctor didn't think DH fit the description, so he just treated it as a viral lung infection and prescribed puffers (which of course didn't really do anything).

Looking back we see that probably at that moment in time, several of the chords that support the mitral valve broke suddenly and thus caused a back up of fluid in the lungs, shortness of breath, etc. His heart slowly compensated and he became "better" after several weeks...He sometimes gets the funny cough when he gets a cold, but none of the really serious symptoms of 2009. I think (and we'll never know now) that if it had been investigated more thoroughly at the time, we may very well have been able to go for a repair at that point.

This spring on DH's 60th birthday, he finally decided to pay and go to a private doctor to get a full checkup (first time in about 8 years!). The doctor heard a heart murmur and referred DH to a cardiologist, with the resulting diagnosis of prolapsed mitral valve and flail (broken chords). Initially after the echocardiogram, the cardiologist thought that the valve might be able to be repaired, but after doing a TEE--he was less certain, leaving it to the surgeon to decide. I was able to watch the echocardiogram, saw the general report from the TEE and a more detailed report given to the surgeon--the mitral valve is in very bad shape.

We are very happy with the surgeon--he is one of the top cardiothoracic surgeons at the Royal Victoria Hospital (one of the McGill University teaching hospitals here in Montreal), with years of experience. Our cardiologist is very demanding--a real perfectionist and he only likes to work with 2 specific surgeons at this hospital, because of their experience and their track record of good patient outcomes.

As to our consult with the surgeon--he was thoroughly prepared and had studied DH's file. We asked about repair but he said that there are too many things wrong--the leaflet tissue itself is not sound, several chords (support structure) are over stretched and several have broken, the posterior leaflet is displaced backwards and a portion of the anterior leaflet is prolapsed. This all causes severe regurgitation both backwards and forwards involving both chambers. Basically DH's valve is pretty much "shot."

The surgeon said he could try to repair but in his experience using DH's basic material in such bad shape would most likely lead to a failed repair in a very short time. We are not thrilled about the situation, but are satisfied with the surgeon's assessment, and are willing to go ahead with the valve replacement.


PS: DH's younger brother (53) just went through a similar scenario this past year. His problem was caught much sooner, and he was able to have Mitral Valve Repair by minimally invasive approach (London, Ontario). He is 5 months post surgery and is doing great.
 
Waiting is the hardest part. My DH was in the "waiting room for about 10 years" - worrying about both an aortic root dilation/aneurysm and MVR. We were told back then that OHS with valve replacement(s) would be inevitable. That's a long time to always have that in the back of one's mind. Still, when he was told last summer that it was actually time to do it the anxiety rose to new heights. Once the date was set we both felt much more at peace - finally realizing that something was going to be done. He had his surgery on Sep 12 (8 weeks ago!) He was completely asymptomatic before and is gradually regaining strength and weight. It's hard to recognize that he is actually healthier now than he was before but the fact is, he really is better off. Hang in there. Let us know how it goes. This forum helped me a lot.
 
Royal Vic is in fact one of the top hospitals but have you cansidered a trip up the road to the Ottawa Heart Institute ? Ground breaking stuff gowing on there with portal and robotic surgery even some transcath work

FROM Institude web page

Valve Repair
We specialize in heart valve surgical techniques--for reconstruction of valves instead of replacement--including mitral valve repair. Surgeons also perform complex aortic valve procedures using minimally invasive surgical techniques. The comprehensive Valve Surgery Clinic follows patients after surgery to ensure thorough follow-up care.
 
The Royal Vic is indeed a very good hospital. Another one of our members, Bina, had an aortic valve replacement at the Royal Vic. It does sound like your husband's valve might be even in worse shape than mine was, although I did have two ruptured chordae and calcification around the annulus as well as on part of the posterior leaflet. My surgeon could not do the ordinary type of repair where they cut out some of the posterior leaflet and then sew the two ends together. He had to replace the chordae with Goretex neo-chordae, put a ring around the annulus and do a few other things. In hindsight, I should have had the operation a few years earlier, but that's another story.

Anyhow, good luck to your hubby. I hope they call him soon because waiting is horrible - I remember!!
 
Hello Ella, and welcome to the forum.
My situation was different, I knew about my heart "murmur" for many many years and was being followed by a cardio, but when
symptoms presented I thought it was just part of aging and I was only 45 at the time. After stalling for another year I entered the
danger zone and when I re-visited with a chief surgeon he booked me for 2 weeks later.
My surgery was at the Royal Vic in 2005.
I'm sure that your husband will do fine especially since he is in otherwise good health. Replace that useless valve ;-)
Best wishes.
 
Greg thanks for the suggestion re the Ottawa Heart Institute. We have been mulling this over since last June, consulting un-officially with several doctors who are friends and our former GP from Ontario (an amazing guy--miss him!), had extended conversations with our cardiologist who is also a gem, consult with the surgeon, scouring the internet for info as well as comparing notes with DH's younger brother who as I mentioned above, just went through similar thing but had his mitral valve repaired by minimally invasive technique.

Only really found this site about a month ago, so all of these suggestions may have been helpful earlier in this process. All this to say, at this point we have decided to go ahead with the surgery here in Montreal.

We talked at length with our cardiologist about some of the newer techniques as you mention, Greg. The main issue he has with the minimally invasive and robotic approaches is that they are quite new and long term success rates are not yet available. Also in my DH's situation, we're not just talking about one small problem with the valve; just about everything is wrong with it!--both the cardiologist and the surgeon agree that the best approach would be to actually visualize his heart and work on it directly. We have come to agree with them on this.

Thanks anyway for the good info--there are some interesting and even amazing things being done in the whole area of cardiac surgery!
 
Thanks Adrienne for your comments. I did a bit of research on mitral valve repair and interestingly if only the posterior leaflet is dysfunctional it is fairly straightforward to repair, but if it involves the anterior leaflet it is much more complicated...and yes it can be done, but according to our surgeon, in DH's case the chance of a successful repair is rather slim. We are going with the surgeon's assessment--he's done this thousands of times...

And yes, the waiting is very stressful...
 
Hello Bina. Thanks for sharing a bit of your story...I think my DH may have just a bit of the fatigue issues and as you say just chalking it up to aging. Our cardiologist mentioned that the fatigue with cardiac problems comes on very gradually. He described it like stair steps...for each year you drop down one step, but it is so gradual you don't realize it...till down the road you look back and see that you've gone down quite a few steps! Interesting analogy.

Just curious, may I ask which surgeon did your surgery? There are several very good surgeons at the Royal Vic.
 
Ella4hubby said:
Hello Bina. Thanks for sharing a bit of your story...I think my DH may have just a bit of the fatigue issues and as you say just chalking it up to aging. Our cardiologist mentioned that the fatigue with cardiac problems comes on very gradually. He described it like stair steps...for each year you drop down one step, but it is so gradual you don't realize it...till down the road you look back and see that you've gone down quite a few steps! Interesting analogy.

Just curious, may I ask which surgeon did your surgery? There are several very good surgeons at the Royal Vic.
Click to expand...

Yes, the progression of fatigue was very slow, but when I started to almost pass out when cleaning my barn, and then had sternum
pressure things got scary. The aortic valve is the "work horse" valve and it doesn't like to be restricted.
I showed up for surgery in a wheelchair because even slow walking was too difficult.
Anyway:
I was previously living in Quebec so had all my docs there already. My cardio from the West Island recommended that I visit with
Dr. de Varennes, the chief of surgery at the Vic. Even in my state of panic I got a really good vibe with his quiet confident manner.
If I ever need a repeat, chances are that I would go to the Ottawa Heart Institute since I live here now, but I hope to not need that ;-)
 
Ella4hubby said:
Thanks Adrienne for your comments. I did a bit of research on mitral valve repair and interestingly if only the posterior leaflet is dysfunctional it is fairly straightforward to repair, but if it involves the anterior leaflet it is much more complicated...and yes it can be done, but according to our surgeon, in DH's case the chance of a successful repair is rather slim. We are going with the surgeon's assessment--he's done this thousands of times...

And yes, the waiting is very stressful...
Click to expand...


I had one of the finest cardiothoracic surgeons at Mass General which is always listed in the top five heart centers for U.S. He hoped to do a repair for my mitral valve but knew it would be very complicated. It was my second OHS and he had done my first OHS, four years earlier, which was not valve surgery.

He knew my biggest nightmare was a failed repair (as that would win me a third OHS) but I agreed to let him attempt it. Seeing I had gone through surgery with him once, I had ultimate faith he would not leave anything but a perfect repair. We discussed my choice of valve prior to the surgery (bovine tissue). He worked on the repair for a long time I was told but in the end was not satisfied it would hold. He went ahead and did the replacement with my bovine valve. When I woke and was told I got the replacement, I have to tell you my first feeling was relief. I just had a bad feeling about a repair.

For anyone here to make a statement that the ability to do a repair is solely dependent upon the skill of the surgeon is woefully inaccurate. My Mass General Surgeon, senior in the department, a prof at Harvard Medical School could not be called anything but extremely experienced, talented and dedicated. I feel it necessary to make a correction about such sweeping, generalized statements which simply are not true in all cases. Some valves are not fixable.

Just last week, I had my ECHO and met with my cardiologist. He tells me all is well. :) For Me, tissue valve was my first choice and I am so happy that is what I received.
 
Thanks anutherbuddy for sharing you and your husband's experience...10 years! That would be such a long time with that shadow hanging over you...can't imagine it. And yes, waiting for the call is definitely stressful...would actually be so happy to have a specific date--seems it would give us focus and a sense of known, rather than unknown.

Glad to hear your husband is getting better--I know that it will be worse before it gets better, but as you say it is for the best and for the long-term outcome. When we suggested waiting to have the surgery, our cardiologist just said over the next 4-5 years, my DH's heart muscle would be stretching, thickening and weakening. If we waited to do surgery based on the arrival of more serious symptoms, then the outcome would likely not be optimal...As they say: "Now is the time!"
 
Hi Bina. those symptoms do sound scarey! Dr. De Varennes is the other surgeon that our cardiologist recommends...He too has a very good reputation and plenty of experience. I've also heard he has a very human approach to patients and is well-liked for that reason.

Our surgeon, Dr. Cecere, is perhaps not super warm but I found him approachable and open to our questions which he answered very clearly--he also didn't seem rushed and allowed us to take the time to ask our many questions. Surgeons are not always good "people persons" but you have to realize that they are highly specialized in techniques of surgery--that is where they excel...and in our cases that is definitely where we want them to excel!! :)

I'm glad that your surgery went well and hoping too for you that you will not need a repeat surgery...
 
Hi Jkm7

Thanks for your added experience. I agree with you--and at least in our case and apparently yours also, our surgeons are extremely experienced and capable. When we questioned the surgeon on the possibility of a repair, he reiterated that he has seen this kind of scenario many, many times and with these givens (present state of DH's valve) the possibility for a positive outcome for a repair is very poor. We are going with our surgeon's expertise and experience--we too do not at all like the idea of a re-do in the near future!

Just a personal question and no need to respond if you do not want to: how old were you when you had the bovine tissue valve put in? Part of our decision process is the whole idea of needing to replace a tissue valve in 10-15 years. My DH would be 70-75 yrs old at that point....
 
Hi Ella,

I was (give or take) around 60 when I got my valve and both my surgeon and cardiologist, at the time, indicated there is every expectation my valve should last in the area of 20 or more years. I saw my cardio for my check up just last week and when he reviewed my ECHO, he said it looks great.

The valves they are implanting now are the newest generation of valves that lasted in the range of 18-20 years in people 60 years and older. Each generation of valve they have created has lasted longer than those they are replacing. My cardio told me last week, while no one has yet had these valves long enough to know for sure, all signs they are seeing makes him think mine could well last more than 20 years.

BUT even if not, they have perfected traditional OHS to such a point it is not unusual for a 70 year old to have valve replacement. We personally know two ladies who got valves late in their eighties. They were otherwise healthy and they tolerated the surgery well and recovered fine from the surgery.

By the time your DH might need a replacement, it is extremely likely they will be doing them percutaneously. As we speak, they are now doing transcatheter aortic valve replacements in patients too ill to have traditional OHS. My surgeon was of the firm belief the future is now and Mass General is among hospitals perfecting the procedure. There are a number throughout the world doing such work.

If tissue valve is your DH's choice, he might agree that his age is a plus in terms of likely longevity and his thinking about being 70 or 75 when he might need another, is not a major stumble according to most surgeons and cardiologists.

This is a highly stressful time and most of us would agree the wait really is the worst part of the whole experience.

Wishing you the very best.
 
Jkm7,

Thanks again for your information....that is really interesting. Glad to hear that your valve is doing well. There is so much discussion about the longevity of the different valves...and as was said elsewhere, it really does depend on so many factors, age being one of them.

I am leaning towards a tissue valve, mainly because of concerns on Coumadin effects--more in the long-range view--interactions with so many other medications, constant concern re: bleeding and strokes, and also the long-range possibility of other medical conditions coming on where Coumadin can definitely complicate the treatment and outcome...Unfortunately I am a nurse so I see many negative possibilities. Of course, many people do very well with a mechanical valve and on Coumadin, so it's all a bit of a toss up--you really can't predict your own future, can you?! :)

Only thing of what you said that I might question would be on the transcatheter approach being an option in the near future, at least for mitral valve replacement...I watched a very interesting youtube interview Adam Pick had mid October 2012, with Dr. Stephen Bolling of Univ. of Michigan...very interesting discussion of the difference between aortic valves and mitral valves and his prediction that transcatheter replacement of mitral valve is very far in the future...like 20 years. But maybe he is wrong, and science and research will advance farther and faster than we think. Let's hope so!

Check out this link for the interview with Dr. Stephen Bolling: http://www.heart-valve-surgery.com/heart-surgery-blog/2012/10/19/catheter-mitral-valve-repair-replacement-steven-bolling-md/
 
Interesting..... one opinion.
Always worth seeking varied opinions. Not all agree, all the time. :)
Thanks for the link.
 
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