Kim's Journal

Rose Madura  Kim, I had rheumatic fever when I was 6 which damaged my bicuspid aortic valve.  My parents found out when I was 7 so I knew for most of my life that I would someday need OHS. I had replacement surgery, ascending aorta repair and root and arch repair at age 59. Had some complications but am feeling great now. It's been 7 years since my surgery.  

Yumiko Ishida  I was diagnosed with rheumatic mitral valve stenosis when I was in college. Do not remember having rheumatic fever as a child but apparently I did. No symptoms, but a nurse heard a murmur and sent me to see a doctor. The murmur was so faint the doctor wasn’t sure what it was, but they ordered an echocardiogram and got the diagnosis. Stenosis was mild for 30 years but my left atrium enlarged over time, I went into afib, developed a clot, had a stroke, and have been dealing with the aftermath of it for the last two years.

I was reading your story, Kim, and you mention transcatheter repair in 2016. Did you get a valvuloplasty? Are you considering a replacement now? I had a valvuloplasty last year and it didn’t help much, so I got a tissue valve this year. Many complications along the way, but I feel so much better now. Let me know if I can help!

Peggy Whitecotton  Yes I did and so did my sister. We both had surgery and did fine. My sister had her mitral valve repaired and I had to have my aortic replaced with a Bovine (cow) valve. I don’t have to take any blood thinners only a baby aspirin. My sister ended up on Coumadin because she went into Afib.

Barbara Laurie  Kim, you really are stronger than you think, ask your loved ones! I bet they know you to be strong. I've known about my Cardiac defect since birth, but it didn't make the news easier😄 I cried on Dave's shoulder often just saying, no, I don't want to do this. But, I do want a path that may bring me a healthier outcome than doing nothing❤️🌹❤️ Keep us updated and hang out with us, may your anxiety decrease as you get your questions answered🌻Best Regards.

Kate Watson  That sounds so much like my story, Kim. They say mine is rheumatic though I have no recollection of being so sick as a child nor do my parents. It's also something doctors say they see in 70 year olds, though mine was diagnosed at 18. It's really puzzling. I am scheduled to get a double valve replacement in just a few weeks. It's a scary thing to go through for sure, and being scared is normal. Hang in there. Hope you get some answers and find the right surgeon.

Kim Murray  Hey there, I know I read your story and we are very much alike. I am headed to Cleveland clinic this morning to finally meet with a surgeon, I'm hopping I can wait until summer😀

Denise Campbell  Me too. They say rheumatic but I don't remember being sick and my mother has passed so there isn't anyone to ask. I had surgery in March and mine is a mechanical.

  Hi Kim. I agree. Mitral stenosis doesn't seem to be as common but I was diagnosed five years ago when I had an echo for arrhythmia and a heart murmer. I had rheumatic fever when I was a young girl. I was able to have a balloon valvuloplasty several weeks ago because the regurgitation wasn't severe and the stenosis was moderately-severe. 'A good candidate for valvuloplasty.'
My symptoms included increasing shortness of breath, fatigue and with exertion, chest pain. I understand the valvuloplasty (PMBV) isn't a permanent fix and because I'm still having some shortness of breath, I will be having a stress echo soon. I'll be having regular echos to monitor; it was also mentioned at my last appointment that it may 'take some time for the enlarged atrium to remodel and for symptoms to improve.'
But I hope you can get some answers soon. Best regards. Janet

Rita Savelis  Yes I had both aortic and mitral valve stenosis due to radiation I had as a teenager in the 70's for cancer treatment. I had both valves replaced and a third valve repaired (tricuspid) 6 months ago. It's true that aortic valve problems are more common than mitral. I'm sorry that you have to go through this Kim - you are not the only one.

Kim Murray  Thank you both for writing me back, I have not gotten a second opinion yet about my mitral valve stenosis. I would love to get the valvuplasty but my cardiologist said mine is severe, which I kind of doubt because I really do not have any symptoms. Except for a little shortness of breathe, if you do not mind would you please tell me your surgeons and hospitals, thank you again, I just feel so alone, and I just do not want to trust this one doctor with my life.

Rita Savelis  One can be "severe" and not have symptoms. Some patients look the same on an ultrasound but have different symptoms. I live in France so my surgeon and hospital won't work for you...

  Hi Kim. I live in Canada so it wouldn't work for surgeon and hospital either but the American College of Cardiology (ACC) and the American Heart Association (AHA) have set up guidelines for Percutaneous Mitral Balloon Valvuloplasty. (PMBV) There are no doubt guidelines for repair vs replacement guidelines as well and I would encourage you to get a second opinion. I did just that when the first cardiologist told me that I 'couldn't possibly be having symptoms (SOB, debilitating fatigue, chest pain) which I was; a second opinion based on right and left heart cath report and repeat echo showed mod/severe stenosis with pulmonary hypertension. I understand that one can be classed as 'severe' with no symptoms, while someone with mod/severe CAN have symptoms. That's why it's important to get a second opinion if you can. Hope you can get some answers soon.

Kate Watson  I'm in the same boat too. I have already had an aortic valve replacement that is declining now (10 1/2 years later) but additionally my mitral stenosis is progressing to the moderate/severe category. You are definitely not alone in this! They also think mine was from rheumatic fever as a child, though I certainly never remember being sick enough to have had that and my parents always took me to the doctor when needed. So it's a mystery as to how that could be. I would also recommend several surgical consults to be sure you learn of all the treatment options available. I am going to my third consult tomorrow.

Renee Merrill  Kim i really hope you are feeling better reading some of these stories. I would definetly get a second opinion I did.

Erin Hannum  Hi Kim! Yes, I have just had surgery to replace my aortic valve and repair my mitral valve. I called it a "two for one special" at the Cleveland Clinic because the mitral valve problem wasn't diagnosed until the last minute. If you are a west side Clevelander and need to talk, I'm happy to go through this with you. I'm 48 and had surgery on February 10th. I can't wait for my new life to start! Also, please be comforted to know that it is so true what the hype is at the Cleveland Clinic - I couldn't have asked for better treatment and my surgeon is incredible.

Kim Murray  I am really looking forward to my consult at clevland clinic , I do hope all the hype is true, thank you