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 ...Read more
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. ...Read more
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.
Susan Lynn Cathy - You might want to get a few consultations. First, most mitral valves are repaired rather t ... Read more
Susan Lynn Cathy - You might want to get a few consultations. First, most mitral valves are repaired rather than replaced by experienced mv surgeons and 70 is the new 50! There are lots of great places to go and things to do. If your conditions place you at that much risk, you will get the same answer from other surgeons. If not, you'll be back to living your active life in a few months. It's certainly worth a bit of time and a little travel to find out. Best of luck!
Steven Methot I agree with Susan. You don't want someone who'll risk your life, but you also want to make sure tha ... Read more
Steven Methot I agree with Susan. You don't want someone who'll risk your life, but you also want to make sure that you get someone who knows the latest techniques. If after another consult or two you have the same answer then that isn't the permanent answer either - the science advances by leaps and bounds every year.
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 ...Read more
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!
Susan Lynn Cathy - Medicine is certainly not an exact science, but you sound youthful and active. We have heard ... Read more
Susan Lynn Cathy - Medicine is certainly not an exact science, but you sound youthful and active. We have heard about surgeons' conflicting opinions on the sooner rather than later, and vice versa, conundrum. I would think about getting another consultation, or two, and make an informed choice. Good luck with your research and decision!
Barbara Wood That's interesting... my cardiologist, who has since retired, wanted me to wait for my mitral repair. ... Read more
Barbara Wood That's interesting... my cardiologist, who has since retired, wanted me to wait for my mitral repair. And I did, for a year. When I saw the surgeon he said earlier would have been better, there was some left atrium enlargement at that point. I had some afib, is that your heart rhythm issue? My surgery risk was rated a little higher too - it was my first but because I had an irradiated heart, it was like a 2nd surgery according to the surgeon - there's a scar tissue issue with both surgeries. Anyway, I agree with Susan & think I'd go for another opinion. Best wishes:).
Lee Wright Personally I would get two more opinions and I say that only because I got different advice from my d ... Read more
Lee Wright Personally I would get two more opinions and I say that only because I got different advice from my different consults.
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 ...Read more
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 ...Read more
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 ...Read more
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.
Kelly Stoll If you click on Main Menu (top of page), there is a drop-down option you can use called "Surgeon Find ... Read more
Kelly Stoll If you click on Main Menu (top of page), there is a drop-down option you can use called "Surgeon Finder"
Anna Jones Hi Cathy, since you are looking for someone with very specific areas of interest, first and foremost ... Read more
Anna Jones Hi Cathy, since you are looking for someone with very specific areas of interest, first and foremost I would ask my cardiologist for a recommendation. Then I would use this site: https://health.usnews.com/best-hospitals/search to review which are the top cardiac hospitals. I would call the hospitals and I would ask for a referral. Then I would also look at this site: https://www.checkbook.org/surgeonratings/ to compare the surgeons.
Helen Daw I agree with Anna totally. Once he/she recommends one, then you can do your research. My cardiologist ... Read more
Helen Daw I agree with Anna totally. Once he/she recommends one, then you can do your research. My cardiologist recommended Dr David Adams at Mount Sinai and I looked no further after I researched him. Good luck
Cathy Moseley Thanks so much! I'll check into those sites.
Rose Madura Your cardiologist should be able to recommend the best one. He/she will know who does the most of th ... Read more
Rose Madura Your cardiologist should be able to recommend the best one. He/she will know who does the most of these surgeries. Then you can check out the doctor on your own. As far as I'm concerned, I ended up with the best.
Susan Lynn My cardiologist recommended several, but I did my own research and picked my own surgeon. My doc is ... Read more
Susan Lynn My cardiologist recommended several, but I did my own research and picked my own surgeon. My doc is now sending all his surgical patients to the facility I used because of their outstanding results. Be your own advocate - question EVERYTHING.
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 ...Read more
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 ...Read more
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!
I feel the same way. I could not have made it through my surgery and still be sane without the awesom ... Read more
I feel the same way. I could not have made it through my surgery and still be sane without the awesome folks on this site. You got this!!
Paul Doria Have you been given a date for surgery yet
Cathy Moseley Thursday I consult with the valve clinic and Monday I talk with a surgeon.
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 ...Read more
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?
W. Carter Things go straight to hell fast with heart disease. One week i'm working just fine, the next week I s ... Read more
W. Carter Things go straight to hell fast with heart disease. One week i'm working just fine, the next week I start getting out of breath easy. I couldn't sleep laying down because of breathing problems. Then I have a heart attack and get admitted into the hospital. That is when they found all the heart problems that I have. I was 57 y.o., 6 foot tall and weighed 165 pounds and worked construction. I would say that at that time I was in the top 10% of people in a health category. So to look at me I looked healthy and fit, I didn't have an ounce of fat and my cholesterol was perfect, so there goes the theory about fat people and heart disease. :-)
Sophia Ridley When I found out I needed surgery, the only symptom I had was a little puffed when climbed a couple o ... Read more
Sophia Ridley When I found out I needed surgery, the only symptom I had was a little puffed when climbed a couple of flights of stairs. By the time of my surgery, I was noticing more and more that I couldn't do things so glad to have the surgery when I did. My two Echos, 3 months apart, showed it had got worse. It's best to have the surgery when the heart is in good condition. Please discuss with your surgeon your condition.
For my case, I was asymptomatic,but the tests showed sever regurgitation. I could feel something going on in my heart.
It's hard to "volunteer" to go into a big surgery. I went ahead. The timing of the surgery was probably harder on my wife than me. I am happy I went ahead. Carrying the burden of a declining heart I think adds up over time as well.
If you need another surgery, take all the health you can into it.
pino correale Yesterday was exactly one month since my OHS for a valve replacement. On the physical front i never h ... Read more
pino correale Yesterday was exactly one month since my OHS for a valve replacement. On the physical front i never had any problems post surgery recovery. But it kind of hit me on the psychologic side mainly because i could not sleep a wink(nada). Finally i listened to some of you people and decided to take my meds and now thank God i am feeling much better. Today i walked 4k in 35 min.
Happy Holidays to all.
Anne Walpole Please check with your doctor about whether you should still be doing weights, etched, and, if so, wh ... Read more
Anne Walpole Please check with your doctor about whether you should still be doing weights, etched, and, if so, what limits you might need (like how many pounds).
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 ...Read more
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?
Question: How long did you have to wait from the time of knowing you'd need surgery until the surgery? Thanks!
Cheryl Smith I found out Nov 19 and mine is Jan 6. EEEEK
Clare Auten I found out Dec 26 2013 and surgery was Jan 9 2014.
I was given a 6 month window (with up to a year but possible heart damage the longer I waited). I lea ... Read more
I was given a 6 month window (with up to a year but possible heart damage the longer I waited). I learned early Oct and had surgery Dec. 1. Good luck.
Jeff Oswald I just got my date it will be February 2nd ground hog day
Sophia Ridley Found out at end of July that i had a severely leaky valve. Met surgeon couple of weeks later who sa ... Read more
Sophia Ridley Found out at end of July that i had a severely leaky valve. Met surgeon couple of weeks later who said it needed to be done within 6 months and I opted for 18th November. By that date, I was glad that it was being done.
Kelly Weisgarber Found out in February 2015, surgery to repair aortic valve and also repair aneurysm Nov. 16th.
Cathy Moseley This info is helpful bc I'm trying to buy a little more time with my old old dog if at all possible. ... Read more
Cathy Moseley This info is helpful bc I'm trying to buy a little more time with my old old dog if at all possible. I've heard that with mitral valve there is usually a window. I'll know more Jan 14 when I talk with them. But for today...all of this info makes me feel a little bit 'calmer'. Thanks so much!
Eddie Patton Three months. They wanted to do it within a month but I had a commitment to my daughter so I put it ... Read more
Eddie Patton Three months. They wanted to do it within a month but I had a commitment to my daughter so I put it off a bit.
Sophia Ridley Best to have it when heart is in good condition. I've read through your story and am sorry to hear ab ... Read more
Sophia Ridley Best to have it when heart is in good condition. I've read through your story and am sorry to hear about your dog. Both that and OHS are very emotional so please give yourself space but mindful of your condition.
Steven A Husted I WAS TOLD IN JAN 2014 AND WAS SCARED TO DEATH OF OHS SO I TRIED TO PUT IT OFF BUT BY AUG 2014 THINGS ... Read more
Steven A Husted I WAS TOLD IN JAN 2014 AND WAS SCARED TO DEATH OF OHS SO I TRIED TO PUT IT OFF BUT BY AUG 2014 THINGS GOT SO I COULD NOT DO ANYTHING WITH OUT GETTING OUT OF BREATH SO MY CARDIOLOGIST SENT ME TO HOSPITAL RIGHT AWAY AND THREE DAYS LATER I HAD OHS ON AUG 19 2014 I AM GLAD I HAD IT DONE AND IT WAS REALLY NOT ALL THAT BAD IT IS VERY DOABLE
W. Carter I waited for a year and a half due to money commitments that wouldn't allow recovery time and the V.A ... Read more
W. Carter I waited for a year and a half due to money commitments that wouldn't allow recovery time and the V.A. Hospital dragging their feet. I had a leaky aortic valve, chf, 5.7 cm aneurysm and kept right on working, heavy lifting, climbing, construction work with no fear. I believe God will take you when it is your turn to go, no sooner. It wasn't my time yet. It all hit home though when the Surgeon came in to talk with me the day after surgery how dangerous an aneurysm is. He told me they replaced the ascending vein just in time, it had stretch marks on it. :-)
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? ...Read more
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?
Tom Elliott Hi Cathy,
I had been seeing a therapist for several years before my mitral valve repair last year. It ... Read more
Tom Elliott Hi Cathy,
I had been seeing a therapist for several years before my mitral valve repair last year. It was extremely helpful to have someone to listen to my fears, doubts, anger etc. I definitely think it's worth doing. This is a pretty big deal, this heart surgery thing, and you need all the people you can get in your corner.
Terrie Syvertsen Hi Cathy- I didn't see anyone nor have family to bounce things off of so was extremely lucky to find ... Read more
Terrie Syvertsen Hi Cathy- I didn't see anyone nor have family to bounce things off of so was extremely lucky to find this community of heart brothers and sisters. I realized for me that having a community of people experiencing surgeries of their own that we were all able to share this adventure from diagnosis to recovery where their stories, journals were a large benefit to making sense of the type of valves and problems and how to make choices on hospitals and choosing the right Cardiologist and Surgeon for me. I liked the honesty from all those going in and in their recoveries as it lessend my fears, bolstered my spirits and renewed my faith in the direction I was headed. Each person who is a part of this community fully understands from experience and is happy to share experiences with one another and lend support and comfort as you begin this life saving journey. There are so many personal mental ups and downs when wading through what lies ahead and after that for me, this is where most of my pre-surgery questions were asked and answered by a community of caring, knowledgeable people so I encourage you to reach out and reap the benefits. Good luck with this and I hope you find what you need.
Sophia Ridley This site has been a wonderful source of information, compassion and support and I am truly thankful ... Read more
Sophia Ridley This site has been a wonderful source of information, compassion and support and I am truly thankful that I found it.
In addition, my husband and I spoke with a cardiac psychologist three times prior to operation and she came to visit me twice whilst I was post op. I found it very useful for both of us to talk with her, and I'm glad that we've established the relationship as my emotions are taking a battering as I try to get through post-surgery AF which I hadn't bargained on happening to this extent.
W. Carter Who better to talk with than 100's of folks that have made it through valve and aneurysm surgeries. A ... Read more
W. Carter Who better to talk with than 100's of folks that have made it through valve and aneurysm surgeries. A lot of the people here will gladly talk to you about the surgery and what to expect. How can someone help you that hasn't been there?
Jean Raber Cathy, slightly different take: While this is a great site for information, some of us don't "click" ... Read more
Jean Raber Cathy, slightly different take: While this is a great site for information, some of us don't "click" with the virtual world. It's not a substitute for "live" friends and relatives who are sympathetic. And if, like me, you have multiple health problems that your "live" friends don't want to hear about, a counselor can be extremely helpful. I have a bad mitral valve, though surgery is iffy because I also have a rare form of blood cancer. All of this bad news came over the course of six months, so I felt pretty overwhelmed, sometimes angry, was not acting like myself, and I felt very alone, even with the good people on this site. This fall I was on the verge of leaving my husband of 31 years. I visited a therapist for a few months to help me cope with end of life fears and to help me think about where I go from here. It was very helpful in keep the bad stuff at bay and refocusing me on what I still have to contribute to life. Follow your instincts, and bless you.
Jean Raber Sophia, I'm so glad you had someone coming in to deal with the "mental" aspects of your surgery. My m ... Read more
Jean Raber Sophia, I'm so glad you had someone coming in to deal with the "mental" aspects of your surgery. My mother really could have used something like this. I asked doctors and nurses, and they basically said she wasn't psychotic, so what did she need a shrink for? Oy!
Cathy Moseley All of your comments help a lot. I have never heard of a cardiac psychologist so I'll have to check i ... Read more
Cathy Moseley All of your comments help a lot. I have never heard of a cardiac psychologist so I'll have to check into that. Your comments also have made me recognize that I seem to have a pretty extensive support system ( church, friends, an exercise instructor who had her mitral valve repaired a few years ago,etc). What's kind of interesting is that I had my aortic valve replaced over 20 years ago so I've been through this before. My cardiologist once told me that people who go through a 2nd surgery don't seem to fear it like the first time. That's definitely true for me. Life has been completely better since surgery and I've been able to physically do things that I never hoped to do. I don't fear the surgery and I hope for a good outcome. The concern now is more with fear of complications ( and then my mind starts working overtime with 'awful-izing' what 'could' happen). I agree that friends aren't the ones who want to hear about that. that's where a counselor ( church or psychologist) could help. Thanks so much for your comments! This is an awesome site!
Jean Raber Yes, if you want to keep your friends and family, you really have to pay someone to listen to your "a ... Read more
Jean Raber Yes, if you want to keep your friends and family, you really have to pay someone to listen to your "awful-izing" (great word) or find a resource in your faith community.
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 ...Read more
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!
Steven A Husted you can do it turn it over to the lord and tell him your concerns and he will give you a peace that w ... Read more
Steven A Husted you can do it turn it over to the lord and tell him your concerns and he will give you a peace that will help you thru it plus you will have a lot of prayers here on this site for you
Cathy Moseley Thank you! From three different groups in my life I've received the same theme of turning it over to ... Read more
Cathy Moseley Thank you! From three different groups in my life I've received the same theme of turning it over to the Lord. I need to keep remembering and practicing that. I really believe in prayer. Thanks for praying! I know it will work out.