Were You Asymptomatic Upon Diagnosis Like Sherri?

I only went to the cardiologist to get my wife to quit bugging me about it. I met him at a softball tournament and figured “what the heck, seems like a nice guy and Wendy will quit bugging me.” I had not symptoms and was lifting weights three times a weeks, logging an hour in the pool a week and 20 miles of running. The minute my cardiologist put the stethoscope to my chest he asked if anyone had told me I had a heart murmur, severe at that. Never been told that!

After all of the tests, and a second opinion, I am set with Dr. Starnes at USC for aortic valve replacement of a bicuspid valve with severe regurgitation on Sept 2. None of the doctors, techs or even Dr. Starnes can believe I have no symptoms considering the severity of the regurgitation. They had me listen to it and compare it to my wife’s heartbeat and it sounds more like running water than a heart beat! But still no symptoms.

Both my cardiologist and surgeon told me I would have met them in the ER within the next two years if I hadn’t come in to satisfy my wife’s concerns. An older internal medicine doctor I saw recommended I wait until symptoms appeared, but even he became a believer after my last echo. So after the Labor Day barbeque, its off to Keck Hopsital!

Glad to hear that they identified the problem and you are scheduled for the operatiion. I also had no symptoms and found it hard to believe there was a need for replacement of the Aortic Valve. My regurgitation was severe but without complications. The doctors all said I would feel much better after the surgery and I was not sure what they meant. However, I was having some physical limitations I was not aware of, and now I have much more strength and vitality. I am 10 weeks post-operation. I am back at work and back in the gym and things are great.
You will do fine and be back in the game before you know it.
Bill
fly-guy@comcast.net

I am now facing surgery for aortic regurgitation sometime this fall, and have also been asymptomatic. It really helps to read about so many people doing well. I’m still in the process of deciding on a surgeon, but Adam’s book is proving very helpful on so many levels.
Thank you all!

Hey, all,
I, too, was asymptomatic with aortic stenosis. Last May 21st, I got an echo and then a heart cath because my regular doctor heard a murmur. I had no shortness of breath or any other symptoms. They diagnosed aortic steniois, but said it was not severe enough to replace the valve. I was told to report any symptoms but otherwise come back a year later. My husband and friends had heard me puffing a bit upon strenuous movement, but I was still able to walk 2=3 miles, just not very fast! Talk about denial! On July 1 of this year the cath revealed it had gotten markedly worse. Seems my tricuspid valve had become a bicuspid somehow fused together. No explanation for that. I was scheduled for surgery July 22nd. I’m now writing this from my hospital room! I say git er done”! I am seriously in favor of surgigal repair. It’s not fun – kinda like having an elephant jump on your chest – but I am going to be seriously in shape this time next year! Take care, and Adam’s book really helped!
Becca

Becca !
I am facing Mitral Valve surgery soon and your reply only 3 days after your surgry has given me renewed hope of not having to spend so much time in recovery. I can do parts of my job by computer hook-up at home.
I am 62 and get so tired……last echo showed 3+ regurgitaion. Next echo is in August, and I fear that will be the one that tips the decision to operate.
Good luck to you and I hope you keep recovering quickly.
p.s. — Loved the comment about the elephant !

I too was asymptomatic for six years following the diagnosis of mitral valve prolapse with moderate leakiness. At the time, my doctors advised that it was likekly that someday I would require surgery to replace or repair the valve. They could not tell me how I would know when the time had come. Six weeks ago while on a business trip, my feet started swelling and I was suffering with severe shortness of breath. The leakiness of my mitral valve went from moderate to severe as evidenced by an echo, with mild enlargement of the heart being apparent. I was a candidate for repair vs. replacement and I set out to find the best reference surgeon that I could here in NYC. Luckily I found him, had both my mitral and tricuspid valves reconstructed, spent five days in the hospital and I’ll be going back to work this week; three weeks after my surgery. Sherri is lucky and blessed to know what she knows. Together with her doctors she’ll be able to find the right path for her successful treatment.

Hi,
I am new to this blog. I also did not think I had symptoms of my mitral valve prolapse worsening. I have had a murmur all my life, and was always told that my heart was not diseased, I just had MVP. After Tenormin helped the PVC’s and “elephant sitting on my chest” discomfort, I just continued living my life, and have recently even been building stone walls and making new rock gardens. I have been noticing for the past several months that my energy level would fluctuate. No more SOB than always had, which had never slowed me down, I walked, no problem with stairs, etc.
I requested a referral to a cardiologist from my PCP for an echocardiogram in June because I had been researching online about cholesteral management, and that being 70 yo added another risk factor re heart health.
My new cardiologist was himself surprised by the echo report of significant MV regurgitation, and told me I needed MV repair! He said that he did not hear a murmur when he first saw me. (The report calls the MR “very eccentric”, tracking along the left atrial wall, so maybe that is why he couldn’t hear a murmur.)
The recommended followup TEE showed severe MV regurgitation, moderate pulmonary hypertension, moderate tricuspid valve regurg, and moderate prolapse of both MV leaflets, which both need to be repaired. I was able today to get the report of my last echo which was 8 years ago. (Did you know that hospitals purge all records after 7 years? I didn’t.) At that time I had only “at least a moderate degree of MV regurgitation”, of only the posterior leaflet.
Interestingly, after the 1st echo and the TEE, I developed symptoms of bothersome SOB, chest pressure, “brain fog”, lightheadedness, feeling like I was losing my balance, and difficulty focusing to do math like balancing my checkbook. My cardiologist said that maybe I had torn a cord inbetween the echo tests.
So tomorrow I have a cardiac catherization locally here in NH. At my request my records will then be sent to Cleveland Clinic for review, as they are the #1 heart treatment center in the US for several years running, according to USNews and World Report. They also have surgeons who do robot assisted minimally invasie MV repair, which I hope I can have.
I have ordered Adam’s book, and expect to have it tomorrow or the next day.
Am eager to read it, as he appears to have a lot of good information to help us through this new pathway.
Will be back on this blog in a day or two. Good to know you all are out there for support.
Winona Blake

Regarding second opinions, one reason I really like my primary care physician is that when I came back to him with my diagnosis from an ER visit, the first words out of his mouth, were “let’s get you a second opinion.”

I wanted one, but I have discovered that lots of doctors don’t really like them, and I don’t know if it’s because they feel challenged or threatened or they don’t like to lose business….

I wasn’t asymptomatic though. I’ve known about my murmur since getting an FAA waiver for it in college, and had had it checked out a few years back at my primary physician’s recommendation. But it did turn out much much sooner than anyone though. Asymptomatic? Not really. More like denial on my part.

(I was told there would be no math.)

Rosie,
I do wish you a speedy recovery! It can be done. I refer to myself as a tough old broad. The keys to my speedy recovery seem to be:
1. Positive attitude – get it done, change the part and I’ll be great.
2. A great support group – plus being on several prayer lists!
3. Stubbornness – like when they get you up to walk, doing all the laps you can. Space them out, of course but do not sit around!!
4. Hug your cough pillow and cough, suck the air out of the breathing thing – it will hurt some, but not as bad as pneumonia!
5. Take the pain pills as directed, learning to identify the kind of tightness that signals it’s wearing off. Keep the pain at bay the first few weeks and you will move more, and exercise is really important. then taper off the pain meds.
6. When you are up and feel like typing, do so, and when you get stiff, do something else. Take a nap as needed but don’t stay down too long!
7. Did I say stubbornness?
I wish all of you great success with your ops! Today, one week after surgery, I went with my husband and son to the grocery store – the darlings are cooking for me, and they are good at it – and wondered how long I’d last walking around. I had taken a Vicodin just before. Guess what! I felt better than I usually did at the store before surgery! We walked around for an hour and a half. So anybody still in that river (De Nial), get out and go for it.
By the way, I can highly recommend Huntsville Hospital in Huntsville, AL and Dr. T. Benton Washburn as surgeon.
I’ll check on you guys and cheer you on! thanks, Adam, for the opportunity here!
Love,
Becca

WOW !! One week post surgery and you sound wonderful. Thank you for the encouragement !!! I am NOT a sitter, so I am sure after surgery, I will be up and moving soon also. I am sure dragging my posterior at the present time !!! Thank you for all of the suggestions. I have printed them and will put them in my reminder notebook when I go in for surgery as it is great information.
Glad you are doing so well and hope you continue to improve daily !

Rosie,
Glad to be helpful! Those of us with mended hearts should stick together! There is an organization called Mended Hearts whose members give out heart-shaped red pillows with a white stitch line across them that you can hug when you need to cough! After surgery, you get to join these nice people and help others. Look them up under “Mended Hearts”.
I’m sure you’ll do great with your positive attitude. Let us know when your surgery is and I’ll certainly pray for you and watch for your return to this blog!!
Love,
Becca

Hi everyone!

Thanks for all the helpful info as well as the great support and encouragement. It is really appreciated.

Hi Everyone, I also am still asymptomatic even though my cardiac surgeon indicated that I had aortic valve stenosis in the severe critical stage. I am scheduling surgery for November 2008 unless I get symptoms prior to that date. I am enjoying the summer and playing lots of golf. I think there are alot of people that are asymptomatic and then find out just prior to needing surgery. I had a heart murmur my whole life but only went to a cardiologist after I complained about hearing my heart beating loudly in my ears at nighttime. Glad I went to the cardiologist and will end up having the surgery almost 1 year to the date of being diagnosed. Still no symptoms. I agree with get it done before any damage occurs. Take care everyone and good luck to those having the surgery soon!!

Hi all – I had an echo done to rule out a hole in my heart for another issue and that’s when the Dr found that I had a bicuspid aortic valve. She said that there is a little of blood leakage, but not too much to be worried about. I have a little arrhythmia, but she said that was normal. I go back in a year to get another echo. I’m 30. Is this something to worry about, or get a 2nd opinion about?

Hi All

I’m now 8weeks after my surgery for a mitral valve replacement. I had no idea that there was any heart problem until I ent to see my General Practitioner (GP) because I had noticed mised hert beats when checkin mypulse rate at the gym. I am a nurse and know that this is not necessarily a problem. On checking my heart my GP asked if I knew I had a murmur – I did not – and she was concerned about this but not the pulse rate. I made an appointment with a cardiologist but 2 days before I was lifting several parcels of books onto the Post Office counter and experienced some weakness; recovering while the postage was worked out. However I felt tightness in my chest which conrinued until after I had been at work for nearly an hour so my boss, also a GP, sent me in to hospital as an emergency. I was admitted for 2 days during which time most of the tests were run. The Dr then came and told me that I had a moderate/severe mitral regurgitation ahich needed replacement but I was too fit to get it done in the public system! I was to be sent home with 6 monthly checkups and further decisions would be made accordingly.
Thank goodness for insurance! I made another appointment with the private cardiologist who followed up with a stress echo. This showed my heart would not cope with the degree of leakage so I went on to have a cardiogram. This confirmed the degree of leakage and also showed my coronary arteries are fine.
I experienced the roller coaster ride of first diagnosis to surgery in less than four months! I had been feeling tired before seeing my GP, but had also been busier than usual the previous year. After the episode with the book parcels I started to develop some breathlessness and lack of energy but nothing that was much of a problem.
I have been very grateful for Adam’s book which I found really helpful though there are a number of differences here in New Zealand. A big one being the two systems, private and public. Without insurance there can be a realy long wait for non urgent surgery.
Sherri, you may not read this until after your surgery, I wish you well for your recovery period. You will soon be back with more energy than ever.
Marion

Dear Adam
As you will see by my response to Sherri I am recovering from mitral valve replacement. I found your book really helpful and have shown it to my specialists. I would like to produce something similar for New Zealand conditions, as there are a number of differences in our systems and also with the types of surgery available here. We have not yet developed the less invasive techniques which are becoming available in the USA, our population being so much smaller.
It has recently been big news that an aortic valve has been replaced like a stent but this procedure is only likely to be used for older or frail people who would not be candidates for stenotomy.

I would appreciate permission to use some of the information in your book with acknowledgement to you. I haven’t yet started to plan how I would approach this task but I will have access to personal stories from NZ patients. I discussed my desire for this project with a cardiac nurse specialist here in Christchurch.

You may be interested to know that in the South Isalnd of NZ there are cardio-thoracic nurses who work on the district following up and caring for patients in their own homes. I had several visits from my local nurse during the first 2 weeks after discharge from hospital. This was really helpful for encouragement and advice for myself and my carers. She assessed the level of my pain relief at her first visit, the day after arriving home, and arranged further medication with my GP. That made a huge difference to my ability to get moving. Her regular visits included a check on blood pressure, heart rate, lungs and asking whether there were any problems, how was my INR level and warfarin dosage. The weather was so wintry and wet that outdoor exercise was almost impossible – so walking up and down the hallway was the only exercise available until I returned to my own home with the loan of an exercycle. We are now beginning to see some warmer weather with Spring approaching and I am enjoying being able to do some gardening for the first time since before Chrstmas. I am planning to return to work in 3 weeks as a part time administrator.

Thank you again for you helpful book and blog.
Marion

Hi everyone,

Thanks for all your valuable input! Just an update, I have been referred to a surgeon due to my MVP status. An Echo in September revealed that the leak has increased from 4.2 to 4.4 in 3 months. My cardiologist feels that now is the time for the repair. Said in general my heart is in good shape and had not started to dialate. The chamber however is starting to show signs in enlargement. With that being said, he stated I was a good candidate for the Da Vinci procedure which is what I had preferred if at all was possible. I am now working on my appointment w/ a surgeon my cardiologist recommended for this procedures. I’m lucky because at this point I am going in for a repair (pending surgeon’s review) and not a replacement. My cardiologist feels that fixing the valve now before it becomes too damaged to repair is a good thing. And I couldn’t agree w/ him more. My Biscupid aortic valve is still functioning normally. No leakage or sticking. I feel truly blessed – for that and all of you as well as Adam. Thanks to everyone.

Sherri

Hello everyone!!
Like all of you, I have been asymptomatic although I have had aortic stenosis since birth. I have not followed up with a cardio for 30 yrs due to some traumatic issues as a child, but when I was in the hospital in March for what seems to be endocarditis, they did an echo and found that my stenosis was critical. I have seen 4 cardios, who all gave different opinions of when I should have surgery (immediately, the next year or two, wait for symptoms, whenever I wanted). I have decided to have it in 2 wks at the Cleveland Clinic, mostly because everyone is telling me I will need to eventually, so why not now while I am otherwise healthy.
What I want to know is, will I feel any differently after? I probably have been limiting myself physically for years, but I haven’t been limiting myself any more recently, and I am able to do whatever I want to do (I can’t run a marathon, but I’m able to walk on my treadmill at a good pace for an hour, and that’s just fine for me). People will say that you won’t believe how much better you feel, but it seems like an awfully big, complicated, risky surgery if nobody can be TOTALLY sure of the benefits. For all anyone knows, I may have had this level of stenosis forever.
Anyway, glad to get that off my chest. If anyone can understand where I’m coming from, it’s you guys. Good luck to everyone. It’s great to hear such positive things from you all.
Nancy

I am 35 years old and very active. I was diagnosed with MVP with regurgitation at the age of 12. I have never noticed any syptoms, but am now facing either MV repair or replacement depending on what the surgeon can make work. I am an ER nurse at a busy county hospital, a snowboarder, and a cyclist, and never have had anything slow me down until I found out I need surgery. The anxiety is almost unbearable. My heart fuction is down and some dilation was noted on a CT scan and TEE. I do not want to have any further damage to my heart, and I know recovery is better when people are more fit… but it is a lot to absorb. Looks like surgery possibly in December. There does not really seem to be much available in this area for minimally invasive surgeries in this area, and I do not think I want to travel, I want to have as many friends and family as I can. Really glad to have found this site and I read the entire book the moment it hit my doorstep. Thanks to all. -Lisa

I am a 54 year old RN with moderate Mitral and Tricuspid valve regurgitation…just diagnosed today. I’ve been dealing with slight nausea and occasional dizziness and feeling fatigued. The fatigue has been for years as I was diagnosed with fibromyalgia..now I’m wondering how long I’ve had this. I still have the muscle weakness and tenderness attributed to the fibromyalgia, but the fatigue is all encompassing recently. I think I’m in denial and I know my finances can’t take major surgery. Even with insurance since it’s HUGE deductible and out of pocket first.
The PACs and slightly higher blood pressure recently is what brought me into the cardiologist. Holter Monitor confirmed occ-freq PACs but nothing else. They also seen a thin atrial septal wall and are concerned about PDA. But I don’t know why they couldn’t diagnose that on echocardiogram? Any feedback about that? Thanks for listening. I’m freaked and I thought I was so calm…

I am 64. I had AVR in late October 2010. My valve was replaced with St. Judes Mechanical Valve. I am on coumadin and I am not going bald. I have great energy. I am attending aerobic water exercise class for an hour 3 times a week and I walk as weather permits. I can do an hour easily. I have a full time busy job. I babysit my busy twin grandsons on the weekends.
Approximately five years prior to surgery I found out that my “heart murmur” was actually Aortic Stenosis. My doctor included echocardiograms annually until it had progressed to a point that she thought I should go to cardiologist for further diagnosis. We discussed symptoms and my activity level. He indicated the symptoms he wanted to know about like more breathlessness, inability to do usually normal activities. I was in denial for quite some time and stayed active. I reached the point where I would go for a walk and had to stop and wait so I could catch my breath. I actually was trying to force myself to keep exercising when the symptoms were profoundly obvious. (I was practicing denial.) As soon as I told him my symptoms, he followed up and they scheduled surgery. I had a great surgeon (Dr. Jeffrey Swanson)at St. Vncent’s Providence Hospital Portland, Oregon. I felt awful for several weeks and I was off work for about eight weeks. The worst soreness was from the muscles being cut and it hurt a lot. I did not get comfortable wearing a bra for some weeks. I did have some success after about three weeks with a loose cotton exercise bra. My surgery was through the sternum. I had help at home for the first three weeks and I needed the help. I had one day that seemed like depression but I have found exercising and getting enough sleep to be profoundly helpful at keeping myself peaceful. Rest if you are tired and watch your diet. Your body tells you if you are overdoing it. I feel so much better than I did before this surgery and I am glad I did it. I am so very grateful for an excellent doctor at a good facility and modern science.

So the doctor finally returned my call regarding concern about infection causing the mitral valve problems. He just said see your GP and it is probably nothing. And oh by the way Mitral Valve prolapse is very common and nothing to worry about! So now I’m worried about nothing? And I also feel more short of breath than usual, but again not sure if it’s just nerves. I’m going to watch my diet and make sure the sodium is low. My B/P is already fine again and I have not peripheral edema so I’ll wait the 6 months he suggested for a recheck….
And Lisa D, did you have the surgery? Could they repair or did they have to replace the valve? I would rather have repaired so I’m not sure about waiting too long with mine issue.

Approx, 5 yrs ago, I had an aortic valve replacement using a procine valve, It now seems that I am a candidate for another replacement due to calcification. I am now 71 yrs old.
A couple of questions, has the femoral artery technique using a bovine valve been used on “redo” surgeries?
And approx 36 hrs after my first surgery, I had fears that the nursing staff was going to kill me. My surgeon attributed this to sleep deprivation after the surgery, but I felt it was over medication. Anyone else have these thoughts?
Thanks, Allen