Rosemary 's Journal

Klara Čičić  Dear Rosemary, I am going through exactly the same thing, only 6 months after the surgery. Ha🙈 It's frustrating. I was also so sad when I heard my murmur again. I didn't have it in hospital. And when I saw the "mild regurgitation" in the chart after the "trace" in the hospital... Yuck. "Don't know" is definitely the anwser you don't want to hear, he might've rather said "we are not sure at this moment what caused more leakage in your case, but possible reasons are: a, b,c....". "Don't know" sounds so discouraging after already feeling disappointed. My Barlow's disease was quite complex to repair, leaflets being hard to put "in line" which my surgeon stressed right after the surgery, that it was quite unique situation. My new chords are working hard to close the valve and it was hard to predict how they will act in real life hemodynamics. I was kind of aware of all that so my shock wasn't as big. Still, disappointing.

 The one echo I had after the surgery was from this old cardiologist, he reasurred me that I shouldn't stress over it, that I should focus on relaxation, acceptance, getting help for taking care for three little children, do everything to make my life easier, do breathing exercises, fitness, and that this is the best way of taking care of my new heart...all good points but you want to know why it happened.

In three days I am having my echo from this renewed professor so I will ask her for details and let you all know as soon as I have the results.

Please don't cry, listen to the wonderful advice Susan Lynn wrote you. Read and repeat it in your head to get out of this circle of bad thoughts. I've been there and understand you completely. Get a second opinion and I am sure it will ease your mind. We are here to listen and support through this process. 

Rosemary Panton   Dear Klara - thank you so much for taking the time to send this message and I am sorry to hear that you have had such a complicated situation.  You know exactly how I feel - I was almost triumphant after the operation - I had had dreadful paroxysmal AF for over 15 years and had tried to control it with AADs, then I got the shock diagnosis of the severe leaking valve problem.  When it was all sorted out it was just fantastic and I have been so grateful ever since to the surgeon and the team who did this in London for me.  I had never been in hospital in my life, I hate the places, so it was all pretty awful.  I just need to understand why the consultant said that this change from trace to mild was nothing to worry about and that he was as sure as he could be that it would not change.  Does the annuloplasty ring stop the leak from getting worse?  Or is it the fact that I don't have AF any more?  I had secondary mitral regurgitation - what they are now calling "atrial functional mitral regurgitation" - where the AF causes the left atrium to stretch (mine was at 7.0 before the op), this then causes the mitral annulus to also stretch but luckily the valve itself is absolutely fine.  I am so sorry that you have Barlow's disease and had to have what sounds like a very complicated op.  I would be so grateful if you could tell me anything that you find out.  I am hoping to hear from the surgeon who did my operation and will let you know anything I find out too!  We visited your lovely country Croatia some years ago - I will always remember when the plane flew over the coast and looking down at the crystal clear blue waters - stunningly beautiful.  Thank you for your support - thank you to everyone - only people like us can really understand the fear, loneliness and courage that it takes.  

Susan Lynn  Rosemary - Don't panic - remember, people live their entire lives with mild regurgitation, without symptoms, or need for treatment. I'm surprised that the consultant gave you that information - your cardiologist may read your echo differently. Please keep us posted.

Rosemary Panton   Thanks Susan - I keep trying to tell myself that but it has hit me really hard - it was so perfect when the operation was done - it was only a trace murmur.  Now it looks realistically as if things are deteriorating again as we are now at mild so have gone from trace, trivial and now mild in under a year.  He also said he could hear a murmur which again had gone post operatively.  It all seems to be undoing itself again.  He said that it wouldn't trouble me - but couldn't explain why and couldn't explain why it had deteriorated.  He didn't have the previous echo there either so had no idea that it had been trace only before.  All in all I ended up wishing I hadn't seen him!

Rosemary Panton   I think things work a bit differently over here in the UK - it's the cardiologist who has told me all this - I saw him last week.

Rose Madura  Maybe so, but in your post, you said that he told you it won't be a problem and was not likely to trouble you.  Why not trust his judgement?  I know it's not what you wanted to hear and I don't blame you for being worried though.  Can you send the results to another doctor for a second opinion?

Susan Lynn  Rosemary- Sorry, I misunderstood, but I would still advise you not to panic. I suspect that many of us who had mv surgery have some level of post-op leakage that we're never told about unless it becomes an issue. We frequently remind heart warriors on this site not to borrow any worries - if your condition requires treatment in the future, you'll deal with it with the same courage and optimism as you have exhibited in the past. Until then, enjoy your life - we only get one and it's too short not to make the most out of every day! Stay positive!

Rosemary Panton   Thank you Rose and Susan - I'm getting in touch with the surgeon who did the operation to see what he has to say.  I've had a fairly rough time cardiac wise over the years and this has just hit me so hard - I've been crying a lot, not sleeping - you know the sort of thing.  The cardiologist was just not convincing - when I asked why it has happened he said he didn't know, when I asked how he could be sure that it wouldn't progress he said that he had patients like this and that they hadn't - so no real explanation again.  He didn't have my previous trace echo for comparison either.  I don't think I will be seeing him again to be honest.  I feel just so worried that this is all unravelling.  I hope that the surgeon will give me some information.  That's why I have ended up on this site, half way across the world looking for help - I just can't find anything which backs up his assertions.   Thanks again for your advice and I hope that you are both well too.

Richard Munson  I hate it when they say i don’t know. Thats not an acceptable answer in my book. My eye doctor said that last week regarding my eye blurryness after cataract surgery, hence my plan to visit another doctor. 

Rosemary Panton   Hi Richard - it's the worst thing isn't it?  To say that you don't know - I immediately thought well, if you don't know what it is then how can you tell me that it's all going to be ok?!  I was also very concerned that he hadn't looked at the echo from last year or this, simply having this year's abridged report in his file.  So again, he had no idea that there was a change.  I hope that you have better outcomes with a new doctor.  I'm going to get in touch with the surgeon who did the op and hope that he can help! 

Richard Munson  Not sure i would say i don’t know or i might suggest another person that has more experience in your situation. My over inflated ego would not permit me to say it. Not sure in my 81 years on earth i have ever said i don’t know but i have referred people to others to answer the question. Maybe i did say it once when checking out a very attractive waitress and my wife asked if i was enjoying myself. I might have said i don’t know. Cowards way out. Yes, my eye doctor said it and is doing a test monday but unknown to him it was his swan song. 

Cheryl Bast  I really agree with what Susan Lynn said. I had 10 years of an active life after my mitral valve replacement. Now, it needs replacing again. I am facing the situation with confidence again and peace that my Savior knows the way that is best for me. Keep up a healthy life style and try not to worry about the future. We're all here to encourage one another!