I guess no one has an answer...

[maka]

to my question......
For those who had their mitral valve repair fail, how did you find out about it? Did you have any symptons? I appreciate your comments
as I have received no answers.....or are my posts being ignored?

 

[WayneGM]

I'm hoping it's because nobody here has had one fail.

 

[swim mom]

I am sorry, I don't have any awnsers for you.

 

[joanne6]

don't know

don't know

Not ignoring you. I haven't been around much lately. Mine was done 15 months ago and at last check was holding up well.

 

[gijanet]

Nope, not ignoring you..............

Nope, not ignoring you..............

Just didnt think our situation was relevant. Unfortunately, Katie has had two failed valve repairs, Maka, but her anatomy is so unique - I mean truly unique - that you couldn't use it as a basis for comparison. Her "mitral" valve is actually her common Atrioventricular Valve (mitral and tricuspid merged). We knew going in that there was a real possibility that her repair would not hold up, but at her age (3 at the time of the 1st repair) we had to give it a shot. It looked good immediately post-op, but we sadly found out at our one month post-op checkup that it wasn't holding up. The second one was when she was four and we never made it out of the OR before they had to open her back up and replace it. In order to get a good repair that would hold, the surgeon had to make it extra tight and her heart simply couldn't handle the new pressure. Katie had the fontan procedure performed, too, and this combined with the valve repair was just too much...................sigh!

Anyway, I hope you get some answers. I did a quick search for you and found this controversial thread. http://www.valvereplacement.com/forums/showthread.php?t=15060&highlight=mitral+valve+repair+failure

I have to confess I don't know what has happened to this poster, as I have been pretty scarce as of late too. (hope everything is okay). You might try PMing her or e-mailing her. Also, if you do another search with "mitral valve repair failure" you should come up with some more threads. Take care. Hugs. J. P.S. Randy (Robyn and Randy)still pops in and out on occasion. You might try giving him a shout, even though it was his aortic valve repair that failed.

 

[maka]

Thank you Wayne, Swim Mom, Joanne and Gijanet for getting back to me. I guess I was feeling "funny" a couple of days ago and I got a little paranoic.
Thanks Gijanet for all the information. My mitral was also a little "tricky" to repair and my Cardio mention that now it is a little "narrower" although she also said not to worry.....but....easy to say. I guess I'm now paying more attention to just about every "tick and "tack"
I have an appointment with her early Dec for a FU echo
Maka

 

[gijanet]

It's good to know.........

It's good to know.........

that you're not experiencing some concerning symptoms. I felt bad after I posted because I got to wondering if you were just pondering or if you had some symptoms that you were concerned about. I'm relieved that you are just in a "let's monitor this mode" and not a panic mode. I know you are concerned. Who wouldn't be? But, hopefully, this repair will last you a long, long time and the stenosis will not get worse.

Keep your eyes peeled as I know we have had some others on here with failed repairs, but fortunately they are few and far between. Many hugs and good wishes. J. P.S. Let us know how that follow up goes.

 

[MikeHeim]

I started a very similar thread a few months back. Here it is:

http://www.valvereplacement.com/forums/showthread.php?t=15831

There have been a few people on this site who have had repairs fail. Unfortunately, I can't remember any of their names right now. If memory serves, many of the failures have to do with issues with the annuloplasty (sp?) ring. Also, most people who have repairs fail have them fail very quickly. Some within a few days. People who are able to get through the first few months tend to have repairs that last for a VERY long time.

As far as finding out that it was failing, I would assume that your pre-surgery symptoms would come back - but that's just an assumption on my part.

 

[Christina L]

Maka -

Maka -

I guess it is something that I personally do not like to think about - my mitral valve repair failing.

However, IF a repair were to fail, I would guess that it would show up on an annual echo which a person gets yearly after their surgery. Also, I would guess you would start to be symptomatic - shortness of breath and such.

My cardio told me that most repairs fail very early (within a year) after surgery. There is over a 90% 10-year success rate with mitral valve repairs, so the odds are good.

I am trying to be hopeful regarding my own situation, but I know realistically that there is a good chance I will be having heart surgery again in my lifetime even though my doctor told me my repair would last my lifetime!! I am going with his words and saying lots of prayers and just trying to live each day and enjoy my life now, which as everyone knows here, is kind of difficult to do sometimes.

Christina L

 

[Mary]

to my question......
For those who had their mitral valve repair fail, how did you find out about it? Did you have any symptons? I appreciate your comments
as I have received no answers.....or are my posts being ignored?

I don't think anyone's posts are ever ignored, but I understand how it feels to need answers and there are none forthcoming.

I have found that using the search feature on VR is very helpful in tracking down threads that are relevant. Another feature I use, and I don't know how many are aware of it, are the archives. If you look at the very bottom of a page, you will see the word archive. When you click on it, it will bring up a list of all threads ever started in each forum. I run down the lists looking for thread titles that might have posts that contain information that I'm seeking.

I hope this is of some help.

 

[Adrienne]

Mary, I have been looking for the word "archive" at the bottom of a page, as you mentioned, and I do not see it.

 

[Nancy]

Go to the Forums page, pick the forum you want to see, like Heart Talk, then scroll down to the bottom of the page and find "Display options" you will see something like "from" and then a selection list which will show up, then choose "from the beginning". Every post from the start of the site from that forum will be displayed.

 

[Adrienne]

Thank you, Nancy. This forum is so complete and has so many things that I have not yet figured it all out!

 

[maka]

Thank you all for the responses. Mike thanks for the thread, it really has a wealth of information and although I read it quickly I plan to go back to read all the links to the articles.
Christina, when I asked my surgeon how long the repair should last, he told me ?a life time?. I?m hoping that will be the case. It was just that I felt a little ?different?a couple of days ago ... hard to explain, except that I felt my heart ?flutter? and my BP was higher than usual to about 123/90 (yes I know, quite normal but I?m in the 90/60 range most of the time) and the pulse raced to about 90 (my range is in the 70) and I guess I panicked.
Thanks for the tips on getting previous threats, I didn?t know about the ?archive? or how to get the information.

 

[Christina L]

Maka -

Maka -

I think that is great that your surgeon told you that your repair will last a lifetime. Take that statement and hold onto it!!

As for your heart fluttering, etc. - mine does that also every now and then. I recently stopped taking my Armour Thyroid for hypothyroidism and the fluttering went away although I did have the fluttering before starting on the Armour.

I choose to believe (make myself) that when I have arrhythmias and funny feelings, that it is because of other things going on with my body. That helps me cope. The main thing is to realize that your heart dealt with a faulty valve all it's life and now it is adjusting - there are bound to be adjustments made in size and rhythm of the heart. It's getting used to being "perfect."

I think you're gonna be okay!

Christina L

 

[maka]

Thank you Christina

Thank you Christina

Thank you Christina. Funny I also take Synthroid and before the operation I was getting ?skipping beats? ( I guess that qualifies for arrhythmia) and the doctor lower the dose and the number of days to take it to 5 days a week...and it helped. Thanks for mention this.
I?m also trying to tell myself that the valve is in the mending and the heart getting used to the new way of ?pumping?...but sometimes the mind has a mind of itself and takes over.
Thanks for reminding me of the thyroid and reassuring words
PS. Did you doctor agree for you to stop taking the thyroid drug or is it just that you changed brand?
I believe this is a drug to be taken for life and should not be stopped unless under doctor?s watch. It may result in some other symptoms that you don?t want. By the way, I always ask for Synthroid (brand) as I don?t trust the reliability of the generic for this condition

 

[Christina L]

Maka

Maka

That is very interesting that you, also, have hypothyroidism. There are many-many here on VR.com who suffer from that malady along with their valve problem. I was found to be mildly hypo in April and was put on a very low dose of Armour Thyroid - had only made it up to 1.5 grains and started having heart fluttering, so I backed down to 1 grain, then 0.5 and stopped it. The fluttering has stopped also and most of the PACs.

I did not ask my doctor if I could do this. Not right to do, but I did it.

I had come to believe that Armour Thyroid was the only way to go, but my new PCP says he only uses Synthroid and some on this board have mentioned that the heart is sensitive to T3 and Synthroid is only T4 (I believe this is how it is anyway). Armour has the full spectrum of "T's".

Your low blood pressure is definitely from your hypothyroidism. Your heart rate is good, though. My blood pressure is in the 110s/70s-80s but my heart rate is in the low 60s. I am tired a lot. Also I was found to be desaturating at night and my heart rate gets oh so low while sleeping. I am now trying to get used to a nasal CPAP machine. I choose to believe that the sleep apnea is from the hypothyroidism and not my heart - that helps me to cope, I guess.

I just had a new thyroid panel drawn and will be waiting to hear the results of that, so I can go from there on getting new medication. Thyroid replacement is the one thing that I don't mind taking - however, I am trying to clean up my digestive system to see if that helps some.

Again, it sounds as if your valve is going to go the distance!! Best wishes all around!

Christina L

 

[twinmaker]

Maka, I've been out of town for a couple of weeks and just saw this thread. I had a mitral valve repair back in 1974 and was told that it would very likely fail and that I would need a replacement down the road. I had my replacement in 1981. I became symptomatic again (shortness of breath) which is how I knew something was going on. Of course, my repair was many, many years ago, and I know things have come a long way since then. Plus, my repair was a commissurotomy which meant that the surgeon went in and removed the scar tissue (caused by Rheumatic Fever) from my mitral valve. The need for the repair may have had something to do with them knowing that I would eventually need the valve replacement. Hope this helps some. LINDA

 

[maka]

Thanks Linda and Christina

Thanks Linda and Christina

Linda, thank you for your time in responding to my question. I guess like everything nothing is 100% sure and the same way that a ?healthy? valve becomes faulty, a repaired one could also have problems. As I never had any real symptoms before my OHS and didn?t know how an individual feels if a repair fails. As I mentioned before, I guess a panicked a little a few days ago and needed some reassuring. Thank you

Christina, I?m glad that you are having a thyroid panel drawn. Your being so tired could also be as a result of hypothyroidism. If you need to take medication, I?d would ask the doctor about Synthroid. As I mentioned I don?t feel the same taking generic..
You mentioned about found ?being desaturated at night?. What do you mean with this?
Is funny that you mention sleep apnea as a result of hypothyroidism, something I did not know could happen. I have never been tested for sleep apnea but sometimes I think that I may suffer from this as I feel like I stop breathing while sleeping and momentarily waking up. It is interesting how many similar symptoms we have, some that I never connected with each other before

 

[cam4est]

Maka, I have not been online in a while but wanted to respond to your post. I realize this is not exactly the same thing but I think it will give you some peace of mind. I had a PVR(homograph) in '04. At the time I was extremely symptomatic. From there I became healthy again and was able to exercise vigorously, and was completely asymptomatic. A little over a year later I began to be short of breath and noticed that I did not have the stamina I had been having. I tired easily and didnt feel "right". So those were the symptoms that sent me back to the cardio to discover that the valve was indeed failing and ultimately had to be replaced. Having "funny" heartbeats is in and of itself not abnormal. But if it is paired with other new symptoms it is worth a visit just to check things out. So hang in there and never feel bad about going in and asking for an opinin even if you were told you are good for life. Take care, Karen