Kim's Journal

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.