living with a monkey on my back

[youngmom]

I was told in March I have moderate to serve aortic reguritation. I will have to under go yearly exams to monitor this disease. I can't stand lying down at night thinking one day i will be told this is my year. How long does it usually take to progress to the point of replacement. I get scared when I exercise or sleep on my left side because I can feel my heart beating fast. Sometimes it is like my heart beats in my neck. My child is six, will I be able to postpone this surgery 2, 5, 10 years? It sucks knowing one day I will have to face my biggest fear. I know it's there, in the dark, just when it's coming drives me crazy. Can anyone give me on some insight on how soon this could progress? Thanks

 

[tprice54]

Welcome...many here will tell you waiting is the hardest thing for sure! There is no real time frame as to how you progress...each person is different. I went from running a half marathon in September to surgery in January, so you never know.

 

[Mentu]

Welcome, YM

Welcome, YM

Welcome to VR where most of us have waited. I was diagnosed ten years ago with aortic stenosis and reacted much the same as you. Surgery! Next year? Next month? Can this be happening to me?

There are some things you can do to ease your mind. First, get a copy of your test results and do so each time the tests are repeated. The most common test is an echo-cardiogram. It is not hard to learn what the results mean with respect your heart. You can use the tools and the experiences of your friends here in VR to help you with that. Once you have an idea of where you fall with respect to the severity of your condition, I think it is easier to live with it. It is possible that it will never actually cause you any problem. Most Cardiologists seem to rely on test results until symptoms become pronounced so you also need to learn the basic symptoms in order to recognize the warning signs that things are changing.

Not everyone experiences change in the same time frame. Some may experience change in their condition slowly over many years. Last year I went to China in June and had a good time and did lots of walking. A month later I was experiencing severe symptoms and couldn't walk a hundred feet without panting. A couple of weeks after that I had my first visit with my surgeon. It is pretty common for a valve to go for quite some time and then degenerate rather quickly but there is no rule that it must happen that way.

The thing that should give you comfort is that you know that you have a problem. Imagine all of the people who have similar valves who do not know there is anything wrong. You have the benefit of knowledge and here in VR a community of people whose shoes you are now walking in. You are not alone. Finally, keep in mind that for most people there will be warning signs as symptoms appear that indicate changes are taking place and you will probably be the first to notice them. In all likelihood, you will not be surprised by the time surgery is required if that ever happens.

Again, welcome to VR.

Larry

 

[dick0236]

Continue seeing your cardio on a regular basis.....and when its time, have the surgery. The waiting for the surgery can be worse than the surgery itself. You will be following a long list of folks who have gone thru this and came out the other side living a healthier and happier life. BTW, I also had a six and eight year old when my surgery was done. They are now 49 and 51. I also have four grandkids and one great grandson. I guarantee that without the surgery, I would not have seen them grow up. Welcome to this site.....you will find much GOOD info here.

 

[Kathy McCain]

Hi young mom,

I am sure everyone here on this forum can relate to what you are going through! My reaction was the same. I can tell you how long I had to wait before my surgery. Four years. However mine was more moderate. It took four years from that time to progress to a more severe stenosis, and surgery. Everyone is different. The best adivise I can give you (and I know it is difficult) is to stay busy, and focus on other things. Again it is very normal for you to be feeling these emotions. The worst thing you could do however, is to dwell on it.

Any other questions, please feel free to ask.

 

[Cooker]

Welcome, and although I take a bit of exception with the title to your thread I just want you to know you have come to the right place ... lots of great info to get and friends to be made ... waiting is hard and scary ... I was in the waiting room about five years but I want to say I agree with Dick that the wait is much worse than the surgery, at least in my case and I know many others that feel the same ... stick around and sit back and soak it all in, hard but you can do it ....

 

[Superbob]

I don't know if our situations are entirely comparable or not, but when I was in my 20s a very attentive internist was the first to detect my heart murmur, and he explained I had aortic regurgitation, and some day would have to have surgery.

That day of surgery did not come until I was 63 years old. In the meantime, I had a busy career, played industrial league softball, even ran a few marathons. My wife and I also were blessed with two great kids, and I coached their teams.

Obviously, I don't know if your condition is more advanced than mine was in my 20s, but the point is that you can be monitored and in a state of waiting for a long time. There is a good chance that your time for surgery will not come til your 6-year-old has done a lot of growing. And if the day does come earlier, there is every reason to believe that you will recover smoothly and have all the more energy and zest for life to share with your family afterwards. Try to find some cheer in the fact that you have been diagnosed, and will be monitored, and will have the needed remedy when you need it -- as opposed to the unfortunate folks who never know they have this problem and pass away too soon and without warning.

 

[JohnCalderwood]

Hi youngmom,

My heart murmer from a defective AV was discovered about nine years ago. I went for routine echo's every year and my cardioologist said I probably wont need the operation until I am 70. I was 33 then. Well about 9 months ago, at 42 he said my Av was opening more and my heart was getting bigger. Back in October he said I needed the AVR as soon as possible. ,I received my mechanical valve on March 30. By far the worst part about the whole thing is waiting to get it done. I had never been under before and was sure I was going to die. In reality that was probably the farthest thing from happening. Bottom line is you don't have a choice. Well I geuss you do. You could not have the operation and be sure to die. Try to take it one day at a time. Your imagination is far worse than anything you will face. It would be a blessing to just get it done and overwith but unfortunatly things dont always work out that way. Keep us up to date with your fears. Lord know we have had them.

 

[dan777]

I was born with a bicuspid aortic valve, which was only diagnosed as a heart murmur when I was 16. No problems until I was 48 and nearly passed out while running on a treadmill. Went for an echo and was told my condition was moderate. It took 6-7 years to progress to severe, and I delayed my operation another three years. Just another example for how everyones experience is different. I'm pretty good at denial so don't suggest you wait too long as I nearly did. Bottom line is for most people the whole operation recovery ordeal is not as bad as you fear and techniques keep improving. If your cardio has you in a yearly cycle it would certainly seem that your are looking at several year before you need to make a decision. Your challenge is to put it in the back of your mind and live your life to the fullest... I gave me fears a specific time when I would give in to them (every third Tuesday at 7am)... when they tried to interrupt my life at other times I would remind them that it was not time for their appointment yet

 

[traveler]

my wife has been moderate to severe since 1984. I on the other hand got about 10 minutes notice. So we'll hope and pray that you are in her group and not mine.

 

[Philip B]

How much time?

How much time?

Sure, waiting is hard; actually it really sucks if you let is stress you out. I spent about a year letting it bug me. When I was in my twenties a cardiologist told me I wouldn't live past thirty unless I had my valve replaced. I had my valve replaced in 2007; I was 52. That was something like 27 years after that conversation with that particular cardiologist. All but one year of that 27 years was spent getting on with my life and not worrying about when circumstances would catch up with me and surgery would be necessary.

I wouldn't suggest totally ignoring a bad valve like I did. Rather, common sense, regular monitoring should be the rule. The problem only becomes the proverbial "monkey on your back" if you let it. You can let this consume you or let it settle in, accept it, and adopt a positive attitude.

While there are never guarantees, keep in mind that the odds of making it through surgery with a good outcome if you are in fairly decent shape are hugely in your favor.

Save the worrying until you actually set a date for surgery. No one here can accurately predict how long you'll be able to go before surgery is necessary. The members here provide a great support system and can really help you get your brain wrapped around the situation you're facing down the road.

-Philip

 

[Johan]

Just look at my signature below!! I always had a strong murmer and since they started measuring it about 25 years ago my AV stenosis was moderate to severe. But I still had a full, active and very sporty life, except for the last 4 odd years when symptoms became restrictive. Now after the surgery I have my old life back, what a blessing!

You may be years away from surgery but the main thing is you know about the problem, it can and will be monitored and you can get from your dr's and from us here, a very good idea about symptoms. Try to forget about the monkey, let Cooker worry about where the next banana will come from

 

[Jeanie]

I agree with all the other good advice, and join them in welcoming you to the forum! It is indeed a good thing that you already have a diagnosis and are being monitored. Medical science has improved so much, an aortic valve replacement is a surgery with a very high rate of success. Just do not wait too long, as you do not want other parts of your heart being unduly overworked whilst trying to compensate for the aortic valve problem.

 

[retiredmls]

I was diagnosed 12 years ago. Every year my echo showed no change until this February. Went through the catheterization last Tues and went into afib (that's a new one). Got a call from my cardiologist that it is time to talk repair/replacement options. She already gave me names of surgeons - what a decision that is!! I'm very anxious myself - for some reason I thought I would go on forever with no change. Glad I found this forum so I can be as informed as possible. Just take it one echo at a time!!

 

[Lanicet]

I had the same problem and did not know about it until a few months ago. I can very much relate to you being scared!!!! You are not alone...but I have to tell you that I went ahead and got a valve replacement because mine was at a critical stage, and had to do it within the next couple of months - and I had no idea anything was wrong. I am young and other than my heart...am in great health. Yes, it is very scary, but it will be the best thing you can do! I'm still recovering, and it is hard, but it will save your life. I don't know how long your doctor will have you wait -- everyone is different. I too, used to feel like my heart was beating in my neck...but I can tell you now that outside of the regular aches and pains of recovering from heart surgery, I have had no other symptoms. Please be assured that you are not alone! You are lucky your doctor caught it! Waiting is the hardest part...I know I only had to wait a week from the time I knew I had to have the surgery to surgery day, but am glad I got it over with. Follow your doctor's orders and you will be fine! Keep us posted.

 

[ALCapshaw2]

Welcome YoungMom -

As you can tell from your responses, there is a Wide Variation in how rapidly Aortic Stenosis may progress in any individual.

The Best thing for you to do is have regular Echocardiograms (I would suggest every year) and keep copies of those reports. I transcribe my results to a Spread Sheet for easy comparison which makes it easy to spot changes that may not raise flags as being 'out of the normal range'. Three parameters of interest are Effective Valve Area, Pressure Gradient across each Valve, and Chamber Size.

Many Surgeons use an Effective Valve Area of 0.8 sq cm or less as the Trigger Point for recommending Aortic Valve Replacement. I've forgotten the trigger level for gradients, but they correlate with the EVA. Heart Chamber Enlargement can be a sign that the Heart is compensating for a narrowing valve.

I hope that you will take some relief in the fact that Valve Replacement is a Highly Refined Art with an extremely High Rate of Success versus almost certain demise if you do NOT get a defective valve replaced once it becomes critical. Nationally, First Time Heart Surgeries have a 1% risk of Morbidity and a 1% risk of Mortality. Those numbers are even less when performed by Highly Experienced Surgeons at High Volume Heart Centers such as you have available at Duke in NC.

You may also find some relief in knowing the hierarchy of Medical Modifiers:
No / None
Trace
Mild
Moderate
Severe
Critical

As many have indicated, Waiting is the Hardest Part of this ordeal.
Hopefully you will come to a feeling of Peace as you learn to accept your condition,
knowing that it can be FIXED and return you to a long and productive life.

'AL Capshaw'

 

[drivetopless]

Welcome!!! Everyone is different, but I've been waiting/watching 13 years. I do recall the first year was the most stressful because I didn't know what to expect and didn't really understand the ramifications. I wish I had this forum at that time. Using this time to learn what you can about your condition will help. As you come to terms with your diagnosis, hopefully, you will find some peace in knowing that you are being monitored and that you will likely have time to plan and get ready just in case. You may have many years of watching and waiting. If so, the technology for repair will only get better with time, which is comforting. If not, there's never been a better time than today for a surgical intervention. We are so luck to be having this issue today vs 50 years ago. Good luck and Welcome again!

 

[Broken Hearted]

I'd just like to tell you all that this site, and you, are so good - and have certainly made me feel a whole lot less like I'm doing this alone!
I also was diagnosed with BAV about 15 years ago and have been watching and waiting with annual echos since then. Now it's reached surgery time (0.6-0.7 cm), even though I'm still really symptomless. I hope you're all right when you say that the anticipation is the hardest part, because it really is awful! I have ups and downs but am trying not to indulge in too many pity parties. Guess I'll decide on a date soon....
Thank you so much to those who have written with support.

 

[youngmom]

Thank you all for your responses. I read each response to my mom and she started crying. Like her, I am so glad I found this site because you guys have made me feel a little more empowered. I have gotten my medical records and trying to understand the jargon so I can better tell just how close I am to surgery. I do know my EF is 55%. Later I will post the actual numbers and maybe you guys can help me understand. Thank you sooooo much.

 

[Rick]

Youngmom,
I am a young dad (40 is still young I think) and have a 6 year old also. I also was diagnosed with moderate to severe aortic regurgitation two years ago. The emotional process was as difficult as I have encountered thus far in my life.

In my case, I lost wight to get to slender, thereby making it easier on my heart. I also take Altace 10mg per day (understand its a good one for people with what we have); small dose of Coreg; 81mg aspirin; and I started walking 30 minutes threee times a week. I also cut out all stimulants: coffee, coke. And I reduced my sodium intake somewhat. All of the life changes to improve the odds of lengthening the time to surgery as I also want to see my son grow up and be there for him.

Two years later, my situation is stable. I know it may degenerate and I may need surgery anytime or I may be able to wait as long as some others have. The most difficult part for me was that I had actually never thought of my own mortality for real. Acceptance of my condition and that I am doing what I can to improve my odds helps me relax some. Feel free to write me if you are ever so inclined.

In my particular case, my diagnosis also was part of what trigerred a divorce a later that same year. "Please dont talk to me about it because it stresses me out" is not exactly the support I expected. And it was a tough divorce.

But now, I can honestly say that I am a happier person because of all of this. I appreciate some things in life that I did pay more attention to in the past. Know that many here have experienced the fear and in my case, panic, upon diagnosis. But also, you can feel lucky that (i) we have been born in an era were this has a medical treatment that can keep you alive longr - if we were born 60 years ago, many of us would have lived less; (ii) we have been diagnosed -- many worldwide never know and simply die, wither of an aortic dissection (i.e John Ritter) or cannot received the necessary cafre and (iii) we have been given a message by life: our time is finite an we can use it more wisely. These are some of the thoughts I have sometimes which help me out; though I admit there are times, I am scared as well.

Best wishes,

Rick