Cathy's Journal

Had rheumatic fever as a child, Severe asymptomatic mitral regurgitation, 71 years, aortic valve replacement in 1993. I feel in good hand with a cardiologist who continues the 6 month check with resting echo one time then stress echo the following six months. EF still 65 % and walls ok. I exercise daily walking, doing weight program 2-3 x week, yoga 1x. Had eval by surgeon last year but at this point they're holding off until there is a change and hopefully will do transcathether valve replacement because surgery is too high risk. I feel very good and have lots of energy. I'm thankful and hope the transcath procedure improves and gets FDA approval before I need it.

I got clarification on the heart surgeon's opinion of no surgery because risk outweighs benefit. He based it on STS risk scale. No is no now, next year, etc. It's not the surgery as much as complications afterwards. I looked at details of the STS risk scale. This would be 2nd surgery, rheumatic background, cancer in last 5 years, age 70, mitral replacement, some aflutter/fib, medicare. The surgeon recommended 'medical management' until the TMVR gets better ( in clinical trial stage ), then that could be a possibility. To me finding a surgeon who would do surgery knowing risks like stroke, interfering afib, kidney or respiratory issues, or a mitral replacement that doesn't function as well as a repair as possibilities isn't worth it to me. I just want to walk with my dog, hike, exercise with my friends, cook, get fluent in Spanish for as long as I can. Quality of life over quantity.

Had a surgical evaluation by the heart surgeon today. His recommendation: no surgery at this time because the risk outweighs the benefit. Risk: it would be a second open heart surgery and issues associated with it. He said first surgery risk for mitral valve 2% and this would be 7-9 %. I'm still asymptomatic as far as I can tell but I'm on a little medicine for heart rhythm issues that occur periodically. My first valve ( aortic) is 27 years old and doing fine. Mitral is severe and has been for several years. OK, here's my 'over thinking it' question: If the risk outweighs the benefit now, wouldn't waiting until I have symptoms and get older ( just about 70 now) increase my risk more? I'm not sure how the benefit would be equal to or better than the risk. Is that over thinking it? I know that the heart field is getting better each year and that transcatheter clinical trials are going on but still have a ways to go. I'm glad I can wait and live life like I have it but I wonder if the reality of having an operation may not be in the future, that medical management or maybe transcatheter will be in my future instead. PS--I did walk 4 miles this morning at 5:30am in a little rain. The dr just shook his head and smiled and said to keep it up!

Has anyone been in a clinical trial for a trans catheter mitral valve replacement? If they fail or malfunction, do you still have options? What are key questions to ask the doctor when discussing trans catheter vs mitral valve replacement ( had aortic valve replacement 27 years ago plus hx of rheumatic fever). Thanks!

It looks like 'watchful waiting' time is at an end. I've have a severe mitral valve prolapse that after almost 10 years of waiting is starting to change. I've had two incidents of a flutter/afib since January so the dr wants me to have the discussion with the surgeon. This will be a second surgery so I'd like to get feedback from anyone, but especially those who have had a second surgery. I have a great surgeon, highly recommended and rated, but there is also the possibility of being a candidate for a study using transcatheter mitral valve replacement. My history: rheumatic fever at 10, aortic replacement in 1993 at age 43. Mitral has been watched since then but surgery wasn't needed at that time. I am healthy, daily exercise with weights, stair climb, fast walk, tabata, or yoga. Walk about 4 or more miles a day. Asymptomatic and lots of energy and involved in lots of outside activities. After first surgery my life completely changed better than I could have imagined! What should I expect now? Will I have a stroke? Will I die in two years? Will I end up in a nursing home soon? Will life and energy continue? My emotions are all over the board right now.. Thanks! Cathy

How do I go about finding surgeon info? Would like to find one who has had lots of experience with mitral valve repair/replacement for patients with a history of rheumatic fever. I'm 25 years past my aortic replacement surgery and have been on the watchful wait list for mitral valve ( probably a replacement) for 7 years. I'm still asymptomatic but am checked every 6months. This go round will be the stress echo. Every year I've been getting either a resting echo, stress echo, or the MVO2 test and have been stable. Just trying to be prepared in case my test next week shows any change signs.

Wow! I got some excellent news today! This morning I went to the valve clinic and the doctor reviewed the test results and explained the current thinking about valves and talked about the risk\benefit,etc. He said that there is not enough evidence to recommend surgery at this point. He said to get a stress echo in 6 months and then see him and we'd go from there. He said to come see him before if I noticed things getting worse and he listed what to look for. He said to continue doing the exercise that I"m doing and that I don't need to cut back unless I start noticing symptoms. He's in the same cardiology group as my current cardiologist but his area of expertise is with valves so I'm going to continue seeing him. So, now I'm ready to get back to a normal life! Yeah!

This is really such a therapeutic site! Last night I was driving my dogs around the neighborhood & listening to music when suddenly I started getting scared about the possible/probable valve surgery. When I got home I started reading posts on this site and heard the encouragement and read the before/after outcomes. My stress level evened out and today I'm feeling upbeat. Reading encouraging words is so helpful!

In October I mentioned to my doctor that I possibly was noticing some heart symptoms. It's odd but it seemed like I started noticing them more after mentioning it. Then in November I said the same thing to my cardiologist. He ran me through the battery of tests and now I'm headed for a consult with the valve clinic and the surgeon. Since seeing him and since having enough issues on a stress test that I lowered my resistance & weights on cycling and weight classes I have really been noticing symptoms....irregular heartbeats and the need to maybe breath deeper or maybe noticing that I may be breathing heavier than I think I should. Do things go downhill quickly .....can I suddenly be 'out of denial'....can stress and worry about all of this make the problem more noticeable? Sometimes I think that if I could just forget about all of this then I'd get back to normal.....what's going on? What have you all experienced?

Another question now that I've got a little more info. On Jan 14 I go to the valve clinic for a consult to hear my options. Then on Jan 18 l get to have a consult with the surgeon. So, I'll have a more complete picture at that point. HOWEVER, big question: has anyone had a MitraClip procedure? i'm hearing a few things such as you don't have the mitraclip as an option unless the surgeon has denied you. From what i've read ( at Abbott Lab site) the MitraClip is contraindicated if you have rheumatic valvular disease. I have all the valve damage because of having rheumatic fever as a child. I also understand that having a second surgery which mine would be ( had aortic valve replaced 22 years ago) and having to have a mitral valve replacement as opposed to a repair are two big risk factors. So, I'm thinking that you could be denied for those risks, I'll find out. Could it be that the MitraClip might be an only option? Would Cleveland clinic look at things the same way?

Have any of you worked with a counselor or person like that to help you work through your concerns, worries,etc before your operation and also during your recovery? If so, was it helpful?

I had rheumatic fever as a child which resulted in several of my heart valves being damaged. When I was 43 I had my aortic valve replaced and my life has been a total night and day difference!!!!! I can run, I do weight and spin classes 6 days a week, my toes and fingers are pink ( didn't know that was the normal color),etc. Now, 22 years later I have started showing signs at the extremes of exercise that my mitral valve is faltering. Four years ago they were going to do surgery but said I could wait but the minute things started to change I'd have surgery. I'm in the process right now of testing. I lasted 8 minutes on the mvo2 stress test but then my heart started having pvcs so I stopped. Next week I get the echo. Here is the issue and my question. Issue: mitral valve problem with probable heart surgery BUT this is coinciding with my 15 year old dog ( she's like my 3rd child) on the verge of needing to be put down. I want to be in the best physical and mental state before going into surgery. How can I process all of this ( all the issues related to resurgery, possible mv replacement rather than repair & implications of that, worries about complications, pet loss, etc) so that I'm not harming my recovery? Probably making an effort to 'stay in the present' rather than all the speculations of the future....would help. Any input would be greatly appreciated!