Kim's Journal

Richard Munson  I suspect a leak always affects things elsewhere. The atrium enlargement is pretty common as it tries to compensate for the leak. No sense being bitter about the past, its the past. Look to the future and approach your doctor with a “ what are you waiting for” line. Or get another opinion. Btw, my chamber reduced its size post surgery and i was 79. 

Kim Owen  I did get another opinion when my left ventricle was in mild dysfunction.  He sent me back to my current doctor.  I have been asking about repair for years.  I’m going to say what you suggested what are you waiting for next month.  I value your opinion about bitterness.  I know God would not approve.  That’s where I’m at though right now. I’m 69.   Thank you.  

Richard Munson  First off, have a nice thanksgiving. When you were in mild stage, they never get worked up. But as my cardiologist once said, the valve does not get better on its own. I was then at the moderate to severe border stage and i wanted a repair as my # 1 choice. If you wait too long they can’t do it. Plus i was going to a mitral valve guru at mass general. He has written papers on mitral valves. He is very good btw. So, i said to him after an echo exactly what i told  you, which was, what are you waiting for, i’m 79.  Come back in 6 months was not what i wanted to hear at that point. I was asymptomatic as well. . ( i don’t mince words when it comes to my health). Sometimes even doctors need a little nudge. The next day, i had a call from the minimally invasive trained surgeon and also his buddy basically setting up the surgery right in the middle of covid. On the phone. No visitors, everyone in masks but it got done and knock on wood i am still kicking at 83. And yes, i was scared. Hope this helps. Good luck at you next appt. 

Robert Miller  Sounds too familiar... You want to act quickly. Based on your description, this seems to be somewhat acute, i.e. a sudden worsening. If your valve malfunctions, your heart will try to compensate to keep you alive but with considerable side effects. You don't want those side effects to worsen. I suspect you won't get around a surgery within 2-3 months. Don't delay it. 


Could it have been recognized earlier? Maybe. No point in dwelling about it. Make the best out of your current situation. 

Two items:
* Make sure they remove the appendix.
* If your left atrium was enlarged a lot and the surgeon tries to fix it with cords, make sure the surgeon knows what he is doing.

If you want to talk about details, send me a PM. 

Robert Miller  I contacted Adam a while ago and I think it's still not possible to send a PM, unfortunately. I don't like to share too much personal information on a semi-public forum but your situation is pretty similar to mine. Hence, if you have any question, let me know. 

Richard Munson  Boy, if anyone ever needed a second opinion, its you. Someone in california on this site can give you some ideas. Adam lives in california. 

Grace Mason   I agree with Richard. I always recommend a second opinion even if you feel you comfortable with a first opinion.
Your heart is your life engine, don't trust it to one professional opinion.

Yumiko Ishida  Do get a second opinion. It is possible that all you need is close monitoring for now, but make sure you monitor for any signs of symptoms. I had mild mitral valve stenosis for decades, was monitoring it regularly, lapsed during covid, went into afib, thought I was just out of shape, didn’t seek any medical attention, and had a stroke. Looking back at my records, I was told about the risk of afib when I was first diagnosed with the stenosis (1992) and the last echo before covid (2019) indicated my LA was enlarged. Stroke was in 2022. It could be years before you need any intervention, but be aware of your risks and the minute you have unexplained heart palpitations, get it checked out. There is no urgency while you are asymptomatic.

Maggie Ma  I would recommend to consult with surgeon. Early intervention can avoid risk of unrecoverable heart damage per my experience. 

  My left atrium was severely enlarged and my heart had been monitored annually. It eventually led to AFib and blood clots in heart. That made my heart EF dropped to below 30 and had heart failure. I’m very lucky my heart function has fully recovered, EF back to 60, and heart size is back to normal after mitral valve replacement.

I still remembered: when I asked Dr Bolling whether I should delay my surgery after cardioversion to treat my AFib ( I tried to delay my surgery as long as possible, so I don’t need second OHS). Dr Bolling said my heart was screaming for help and he would drag me upstairs to get surgery if I would be his family member. 

Rose Madura  Hi Kim, when you are told to wait, it can be disheartening. My "now retired" former cardiologist always said wait for symptoms. But when I sent my echo result that was a year old to two other doctors, they both said surgery should have been recommended long ago. So it might make you feel better to get a 2nd opinion. Best wishes and hang in there.

Kim Owen  Thanks for your reply and good wishes. That is exactly what I’m doing. It’s not like I want surgery, but I don’t want to wait until it’s too late. The dilemma is what to do if one says wait and the other doesn’t? Maybe a third. Did you end up up having surgery? If so how did it go? You had a mitro valve problem. Blessings to you.

Susan Lynn  Kim - There are different opinions, but the trend seems to be to have surgery sooner rather than later. Apparently, prolonged strain on the heart required to pump blood forward can result in enlargement of the left ventricle - and, depending on the situation, it can be irreversible. The TEE will give you a better idea of what's going on. My cardiologist and surgeon were able to tell me with certainty that a repair was possible. I had a minimally invasive mini-thoracotomy and it worked out just fine.

I strongly suggest that you do as much research as necessary to make your decision with confidence. It's important to be your own advocate. I wish you all the best! ❤

Kim Owen  Thank you so much for your reply. That is what I have been reading. That when the leak is severe do surgery without symptoms. I’ve had it 15 years and it started mild went mild to moderate now moderate to severe. What grade was yours? How long can a repair last? How long was the recovery period?

Rose Madura  Hi kim. I had aortic valve replacement, arch repair and ascending aorta replacement. I had four opinions, two from local cardiologists, one from my brother who is a doctor and a final one from his friend who happens to be a thoracic surgeon. Fortunately for me, all four said I needed surgery ASAP.

Susan Lynn  Kim - I really didn't know what was going on with my mitral valve and never saw a cardiologist until a few months before surgery. My murmur was worse with exertion and being the couch potato that I was, I barely noticed until I was winded climbing stairs.

I had a TEE and cardiac catheterization before surgery - both easy peezy lemon squeezy! No worries about that. The surgery itself, was also a piece of cake, but I did have a side entry, minimally-invasive mini-thoractomy. It's a painless procedure because the surgeon freezes the nerves in the area. The scar is about 3 inches (hidden in my right breast curve) and there's no sternum cut. However, there is an entry for by-pass right above the right thigh, so you need to be aware. I went in on a Friday morning for surgery, was released by Monday at lunchtime. With the exception of being tired for awhile, I had an extremely uneventful recovery. It didn't feel like I had heart surgery at all.

I will say, there was numbness and pins and needles on my right side and back near the incisions in the months/years to follow. I barely notice it, but it's there. Also, I think the post-op medications were partially responsible for my fatigue. I felt better once I was off metoprolol (a beta-blocker) often given to heart patients. I don't take any medication now.

Every patient's experience is different, but there are two things that I think make all the difference. First, do your research. Select the doctor, facility, and procedure that's right for you. Secondly, maintain a positive attitude. Think about everything going exactly as planned. If something does come up, you'll cross that bridge when you come to it. There's plenty of worry just waiting for game day to arrive without agonizing over every possible complication - especially, if you're like me, you may never experience any of them!

I can assure you, every test and procedure before, during, and after was very tolerable. I am still amazed at the advances in medicine and the dedication of the skilled, knowledgeable professionals who make heart surgery feel like a non-event. You'll be fine - if I can do this, you can!

Rose Madura  I actually got four opinions! Two cardiologists and the my brother who is a doctor and his friend who is a thoracic surgeon. They all agreed that I needed surgery and the sooner the better.

Rose Madura  I'm doing great! I had a rough recovery but once everything settled down, I started feeling much better. I'd say it was about a year before I felt at 100% but that's ok. Everybody heals and recovers differently.

Karen ShirIey  PVCs are common with mitral valve issues. I had them from my teen age years forward. I would have trigeminy with my PVCs. Not sure if you have that variant or not. I learned to ignore them over time and eventually didn't notice them much. Your cardiologist will give you indication if the leakage needs fixing or if it is still in an acceptable range.

Vanessa Corwin  I had a mitral valve repair--in March it will be 3 years ago! I also have PVCs, according to my cardiologist not of concern for me. Re your regurgitation, keep following up with your cardiologist. I had surgery when my regurg was severe but I would keep on top of it if I were you.

Marie Myers  Until the valve function deteriorates to a certain level, you can go along safely as you are. Maybe it will not progress and you might not need surgery, who knows?

Kim Owen  Karen Shirley thank you for your encouragement. I do not know what trigeminy is? You have a mitro valve leakage?

Kim Owen  Thank you Marie Myers for your comment. That’s what they say. I started out with a mild leakage and have progressed to a moderate (if that’s where I am still at). I guess my thinking is why not fix it now so hopefully it doesn’t progress. Do you have this ailment?

Kim Owen  Thank you Vanessa Corwin for your input. I do see my cardio regularly and do an echo once a year. Did your regulation start out mild? Did your repair help a lot?

Marie Myers  No. For me, the issue was an aortic aneurysm. I knew about my bicuspid aortic valve since my 20’’s, but the valve did not cause any issues or symptoms. It was the development of the aneurysm that pushed me to surgery. Hopefully you will get the information you need from tests, and then proceed accordingly.

Karen ShirIey  Kim, trigeminy is when the PVCs are grouped together without normal beats in-between. Kind of like a coughing fit of the heart. I was born with heart defects with a hole, a bad valve and some shape abnormalities. I also have an autoimmune clotting disorder called antiphospolipid syndrome which caused a series of strokes when I was 30. My mitral valve was replaced Nov 21 2019 with a st Jude mechanical one, the hole fixed and some shaping repairs to reduce further stroke potential. My mitral valve had the tendons that attach it to my heart rupture while laying in bed doing nothing strenuous. The entire valve came off and caused emergency need of repair.

Karen ShirIey  Because of the extent of regurgitation it resulted in congestive heart failure and damage to the wall of my heart. I still have the congestive heart failure and may for the rest of my life or I may be lucky and recover. Surgeon identified that the injury was likely due to the auto immune disorder damaging the tissue.

Susan Lynn  Kim - I agree with Marie. You may never need surgery. Take it one day at a time. If you have to have a procedure in the future, you'll be fine. Medicine only improves over time. All the best! ❤

Kim Owen  Karen Shirley bless your heart. You have overcome some hurdles. Your ability to encourage others is a gift. I love the responses from the group. I don’t feel alone.

Kim Owen  Susan Lynn thank you for your kind words. It is awesome to be able to be able to talk with people who know how it is. I wish the best for you.