Mitral Valve leaking..5 years post op...anxious...

[offwego]

Hi Everyone

I am hoping I can get some good suggestions and comments on my situation. Thanks for reading this thread..

I am 50 years old and almost 5 years post op after having my Mitral Valve repaired (minimally invasive).

I just went in for my scheduled checkup with my cardiologist and my valve is now moderately leaking…my left ventricle is enlarged and my doctor had me call the cardiac surgeon and set up an appointment for a TEE in about 3 weeks.

Unfortunately, I got these results the day before leaving on a 3 week cross country driving vacation and of course I am stressed and anxious about this.

My bp is perfect and blood tests were all fine..But I do have trouble taking fulfilling deep breathes and my heart has not felt really ‘right’ in quite some time (if ever since the operation)..I recently started aeobic workouts and get my heart rate between 145 and 165 for 30 minutes..

Here are my questions (and fears)…My doctor spoke to the surgeon and said that they usually do not perform OHS on moderately leaking Mitral Valves..if this is the case what treatment can I expect and how much could it help? I don’t love the way my heart feels and it freaks me out..it reminds me of how it felt a few months before severely leaking 5 years ago….

I’ve read that diuretics and Ace Inhibitors are often prescribed for leaking valves..how much can these help?

As much as I fear another OHS..I do want my heart to work as it should! I am pretty active and a young 50 year old..

I didn’t yet get a copy of the report so I don’t know the numbers of the results…my cardiologist didn’t seem too freaked out but he def wanted me to get the TEE..

Any comments appreciated!

Thanks for reading.

 

[Phyllis]

It sounds like you have a cardiologist who is on top of things. The tee will give him and you a lot more information. If you get a copy of the results and post them here, I'm sure many will give you a better understanding of the results. Best wishes to you!

 

[AgilityDog]

I have a leaky aortic valve, in addition to my St Jude's mitral valve. No need for a second replacement, yet. Maybe never.
I'm on an ARB, atacand (because ACE inhibitors exacerbate my migraines), and spironolactone, a mild diuretic, and lasix as needed. By reducing the BP and fluid load, it helps with the leaking-takes pressure off the heart and the valve. I can feel the difference, and it would probably be a good thing to try if your doctors recommend it.

 

[offwego]

Thanks for the responses...Yes, I remember taking Lasix when my valve was leaking severely and with it was able to take good deep breaths...

I wish I would have had time to discuss all this with the cardiologist before I left for vacation..Overall my health is excellent..BP was 112/78 and cholesterol was 153...I was very happy with all the results until...the echo...I definitely feel my heart working harder..I can take deep breaths sometimes but not that often and it's worse at night (lying down I guess)..

I suppose I just have to hang tough and try not to think about it so much..I am facing a 3500 mile road trip in a small sports car..from Portland to NY..leaving tomorrow am..

Guess I'll just take the Xanax as needed (every night it seems)...

My mind starts working overtime as all this is as Yogi Berra said, "Deja Vu, all over again"..

thanks again for the replies!

 

[ruth]

Hey there, welcome!

First off, ENJOY your vacation! Heck, life is too short as it is, and whatever is going on w/ the valve can wait a few weeks while you have some fun.

When you're travelling you might feel better if you can watch the salt (yikes, how on restaurant food?) maybe by trying to enjoy as many raw fruits/veggies as you can (tis the season for that). Also taking breaks and walking can help with circulation and don't get dehydrated which is easy to do when on the road.

The timing stinks but it's not worth worrying too much until you know you've definately got something to worry about. And, if it turns out that you do need to take action to fix your valve, what a nice thing to have a great vacation under your belt.

I wish you all the best.

Peace,
Ruth

 

[ALCapshaw2]

The operative word in your report is MODERATE.

That means that yes, there is some leakage there but NOT in the Worrysome Range. Your Cardio picked up on it at a time when it can and should be managed Medically. You can discuss that with him when you get back home. It sounds like you have an astute cardiologist and he is on top of you situation (and isn't overly worried at this time). I expect he will want to monitor your condition more frequently than before (probably annually, maybe semi-annually).

ENJOY your trip. Try not to worry about your heart.
(and yeah, minimize the salt, and don't get dehydrated).

Bon Voyage!

 

[offwego]

Thanks so much for the responses and yes I agree that the key word is MODERATE...yet of course, past experience has scared the pants off of me..I have been seeing the doctor for tests 2x a year and skipped the last exam as I wanted to get into better shape...I know that sounds nuts but I lost 15 lbs, joined a gym and have been working out 3x a week...I am feeling overall very good but the heart is clearly working harder and the breathing is not as good as it should be..

I went to the gym today..I will try to eat better, lay off the salt (hard on a trip like this)...and try not to think about this too much..

thanks again for the responses..It means a great deal to me!

 

[offwego]

The operative word in your report is MODERATE.

That means that yes, there is some leakage there but NOT in the Worrysome Range. Your Cardio picked up on it at a time when it can and should be managed Medically. You can discuss that with him when you get back home.

Bon Voyage!

Can there be long term medical solutions that make me feel like the heart is working 'right' or better? Without many side effects that is...I immediately went into the mindset that my valve will needs to be repaired or replaced again,, suddenly and soon...of course none of these feelings is based on any thing other than fear ...but the fear is real to me of course..

Would be nice if Lasix could do the job and be taken without many side effects..I have no idea what to expect..I know I'll find out soon enough...ok..time for the Xanax! Leaving early from POrtland to Idaho! Time to throw out the chips and salty nuts for the snacks!

 

[Curtsmum]

My son as been living with a leaking mitral valve for 8 years and only in the last couple of months as he been put on diuretics, he is doing really well, although he will be having his second surgery on the 16th. Hope everything goes well for you, try to relax untill you get your results and have a great trip, all the best.

 

[ALCapshaw2]

It's been my *impression* that Mitral Valve problems tend to progress more slowly than Aortic Valve problems.

I thought I was going to need MVR a few years ago and everything just 'stopped changing' at a level where 'waiting and watching' was the recommendation from cardiologists and surgeons alike. Fluid Balance seems to be the Key.

 

[Jkm7]

Not in my case. When my mitral valve went bad, it went bad FAST. Second OHS was scheduled and done within the month.

But that is just my case. I have no idea about anyone else's.
Go enjoy your vacation and keep "MODERATE' in your mind. A moderately leaking valve does not require surgery.

 

[hall]

Glad your cardiologist is on top of this. Enjoy your vacation!

Deb

 

[Lisa in Katy]

Until you get the diuretic, drink lots of water. It is a natural diuretic and will flush your system. Although I'm not good at home, I find it pretty easy to drink water on vacation. Down a glass while you are waiting in a restaurant for your food and then drink another glass or two while you are eating. Always have a bottle nearby and drink it every time you think about it. Of course, it goes without saying, but I'll say it anyway - make sure you have a restroom nearby before following this advice!

I lived for 22 years with severe leakage, treated medically. This was in the days when the thinking was to wait for the heart to fail before surgery. There are lots of people on this site with moderate leakage. Try not to worry and enjoy your vacation. Plan on having many more before your next surgery!

 

[offwego]

Well thanks for the replies! I am now in Butte Montana and driving 300-500 miles a day and for the most part having a great time...I feel like I am gasping for air on most breaths and it's quite disturbing...Overall energy and health is excellent but the heart is working oddly and walking up steps really makes it pound!

I called my card and he would not prescribe Lasix util he sees me again...too bad I am gonna be on the road two more weeks..

I am so curious if these meds could 'cure' me or make me feel normal? I have to gasp for air sometimes jusdt moving around for a few mintues in the bed...its weird as I can walk and run on a treadmill for 30 minutes at HR of 145-165...Very weird...seems to have card baffled a bit as well.

Anyone know if a reop to repair the valve can be done minimally invasive? I had it fixed that way 5 years ago...wonder if it's possible again?

Sorry I am babbling...passing a few minutes before falling asleep and waking up for another long trek out there.

Hope all are well and thanks for reading and putting up with me!

 

[Nancy]

Do your best to stay low sodium while you're away and w/o diuretics. Even one sodium loaded meal can cause problems with fluid retention. So stay safe.

 

[bvdr]

I don't know if the term "moderate" is the most important factor here. I don't know if your enlarged left ventricle is a new or old finding. I think the total picture needs to be evaluated. My mitral valve was replaced when it was technically "moderate" in insufficientcy and "moderately" stenosed. It was the combination that resulted in very poor function and CHF. I'm glad you are getting the surgical evaluation and the TEE. The more information they have here the better. I do hope you have a wonderful vacation though. Do take it easier than normal at those high elevations since that is an added cardiac stress.

 

[offwego]

Thanks again for the great posts...I am having lots of trouble finding low salt food, have to be even more careful...I am in Butte Montana now and was just planing the next leg of our trip...I do think the altitude is effecting my breathing..I am panting quite easily..We were considering heading towards Yellowstone and through Wyoming but after considering the altitude we will continue east and avoid going any higher..I have been feeling more breathless as we have gone higher but haven't really thought much about it...

As far as the enlargement of the left ventricle, it may have been slightly enlarged since the surgery..I think it may be more enlarged now but really it's pointless to guess as I don't have the results of the last echo and am going for the TEE...

Mentally I have been slowly preparing myself for the worst (yet reasonable) case scenario...maybe a surgery in the future...sooner or later...could be...The shock of the news of any problem has started to wear off and I am resolute in accepting whatever needs to be done..

Could be worse...(could be better too!..lol)..

Well, off for some low salt breakfast and to plan as rapid a descent asap!