Introducing myself, this will probablly be long!

[Gemma]

Also, could someone tell me what a chest pain caused by your heart condition and not anxiety is like? Is it a sudden pang like an electric shock? Is it a dull pressure that is slightly irritating but not painful or distressing?

Jim described it as like having someone stamping on his chest with a stiletto heel. How he knew what that felt like I decided not to ask!
As for the breathlessness, I think you'd probably know if it was your heart. It sounds like you're not currently having any problems in that respect - I'm sure most healthy people get a little winded after running upstairs or walking a big hill. With Jim I noticed that by about 6 months before his surgery he was occasionally having to stop to catch his breath if we walked up a long hill or several flights of stairs. But even this was fairly minor compared to the "breathlessness" many heart patients experience. His surgeon suggested if he'd waited another 5 years without having the surgery (bearing in mind he was already at a reasonably urgent stage) he wouldn't be able to manage even one flight of stairs.
It's certainly worth talking to your GP about your depression/anxiety over this though - they may be able to put you in touch with someone who you could talk things through with. You're probably going through the stage where you have to digest everything and work it through in your head but trust me, if you keep on for 10 years (assuming that's when your valve actually needs replacing) you will be a basket case! Don't mean to offend - but please try to remember that you're at the "wait and see" stage at the moment . Which is a good place to be in terms of getting educated on all your options, but not necessarily so good for your own peace of mind unless you can figure out a way to put it out of your mind at least most of the time.
Gemma.

 

[SacredHeart]

Jim described it as like having someone stamping on his chest with a stiletto heel. How he knew what that felt like I decided not to ask!

HAHAHA!!

It's certainly worth talking to your GP about your depression/anxiety over this though - they may be able to put you in touch with someone who you could talk things through with. You're probably going through the stage where you have to digest everything and work it through in your head but trust me, if you keep on for 10 years (assuming that's when your valve actually needs replacing) you will be a basket case! Don't mean to offend - but please try to remember that you're at the "wait and see" stage at the moment . Which is a good place to be in terms of getting educated on all your options, but not necessarily so good for your own peace of mind unless you can figure out a way to put it out of your mind at least most of the time.
Gemma.

Not an ounce of offence taken, you speak incredible sense. I love reading what you have to say. Right now I'm not dealing with this thing particularly well but I've always been a paranoid stress head. Those close to me who know about this are being awfully positive and keep telling me exactly what you mentioned above: to LIVE and carry on as normal. I agree with it, I am not doing myself ANY favours stressing and worrying like I am. I do have a rational voice in my head which is telling me to calm down and relax, though this is a scary thing to face it really is not THAT much of a big deal! Right now I'm fine, I've got every chance of living a full and active life, technology is advancing in leaps and bound, I may well be easy to fix, when I am fixed I'll feel super etc.......sadly that rational voice keeps getting overshadowed by this stupid paranoia and depression of mine. I wish I could turn it off like a switch!

 

[Mary]

Kris,
In terms of getting your fears under control about eventual vavle replacement, ask yourself this question.
Is my worrying a means of improving my valve situation?
If it is, then worry away.
If it isn't, then why are you wasting your time?

That's how I try to look at it, and I've done a pretty good job of it so far.
Mary

 

[McCln]

Sacredheart

Sacredheart

You are quite young, scared and full of questions. You were not totally educated from the cardio from childhood. My doctor's from my childhood made sure I was informed of what to expect years for a repair done at age eight in 1973. I had been told that someday, I would need a replacement. Never was told about the coumadin then. It was years later, when I started to have insurance and got with cardio's when I got a good one and checked me out good. He announced that surgery was not avoidable, it was time. I was 35 at the time. At 36, had replacement and on warafin(soumadin) and lead a normal, active, life. Having a replacement, St. Jude's valve and on warafin is not crippling at all. Just slight changes in activites and daily diet modifications. Otherwise, a person can live a normal, active life. Most important is the regular checkups with the cardio is very important in keep yourself heathly. But here's hoping it is ten years before replacement. But get educated on your heart issue is a key to good heath, as well as keeping as active as possible. The depression may subside as well as you keep getting educated and establish with a cardio. Good luck and keep getting those checkups, living with murmur is not as bad as you think. I was born with mine and have to remember it could come back. And welcome, come in with your quesations, but be sure to ask your cardio questions also. Come in when you need to, we are all here to help.

 

[Teresa UK]

Thanks, Gemma

Thanks, Gemma

Thanks, Gemma, for your comment that not all British Cardiologists are terrible! I was starting to get a bit freaked out by the comments that they're "primitive". My only option is to use the National Health Service - where obviously you don't get to choose your physician, you just get whoever is based at your local hospital.
Kris, I'm guessing you're still in a "knee-jerk" reaction to all this - as am I since I first learnt I had a problem, just a few weeks ago. I'm trying my best to come to terms with it. The most difficult part is that for the last 20 years my life has been "restricted" while I cared for my father, sister and mother through their chronic illnesses and disabilities (heart disease, cancer and multiple sclerosis), and as my dad and sister have passed away in the last couple of years and my mother is now being looked after by carers, my life had just become so much more my own in the last year and I started enjoying my new-found sense of freedom: and then this. And they say God doesn't have a sense of humour. Some days I feel really sorry for myself, and some days I'm thankful for all the good and positive things in my life - of which there are many. It's not easy is it? I doubt there's one person on this forum who, on being told they have heart problem, thought "oh, jolly good, bring it on", but so very many of them seem to have found a way to deal with it all with dignity and humour - perhaps we'll get to that one day!
Teresa

 

[tobagotwo]

Kris,

Glad you developed the chutzpah to make yourself known. Your concerns and fears just mean that you are facing open heart surgery, not that you are weak.

You are not likely to be having any heart symptoms at this point. Your valve issues are mild, and you have not shown enlargement of the heart. Symptoms in most people show up after those items show change.

It is, as you say, very difficult to tell, once your judgement is clouded by knowing what to expect. We've all had that question run through our minds. Was that my heart or my brain? It goes the other way, too. Some people have to wonder whether they are truly symptomless, or somehow in denial or oblivious to their own symptoms.

Ten years was only a guess on the part of your physician. It was probably just to answer teh question that he assumed would come next. He knows it's coming, because the process has begun. The symbols of that are the rise in your mean and peak gradients, and the fact that your estimated valve opening size is getting smaller. However, the speed at which this happens is different for each person.

Your body has reacted to a chemical signature on the valve leaflets that indicates your valve has been damaged, and it is coating the valve to try to protect it. The opening size is being reduced due to that calcification forming on the valve leaflets and cusps. Once this coating and depositing process starts, it may take time to complete, but it doesn't stop.

The effective circumference of your valve opening gets smaller as calcification continues, and as time passes, it takes less and less further calcification to narrow the valve further. This is like frosting the inside hole of a bundt cake. The hole starts to fill, and it takes less frosting each layer to make the hole much smaller. The axiom is "The worse it gets, the faster it gets worse."

The pressure gradients fit into this like a thumb on a garden hose. If you run water through a hose slowly, it trickles to the ground. If you place your thumb over the end of the hose, and make the hole smaller, the water builds up pressure and spurts through the smaller opening in a stream. The smaller the hole, the farther the stream shoots out, and the more pressure you have to put on your thumb to keep it in place on the hose's end.

The pressure of the water going through that smaller hole is like the pressure of your blood passing through the smaller aortic opening. As the heart is trying to push the same amount of blood through each beat, the smaller the aortic valve hole, the faster the blood passes through, and the greater the pressure required to do it - pressure that your heart muscle has to provide.

Surprisingly, descriptions of a "normal" valve opening vary. The usual range given for a normal aortic valve opening size is between 1.5cm and 3.5cm, with most people in the 2cm-3cm range. However, normal varies for the size of the person and the size of the heart. In any case, at about 1.5cm (give or take some echo variation), you are now leaving the normal range.

Although you're not really ready to address this fully yet, you should get full copies of your echo reports, including the prior ones. One reason is to establish your heart's own norms, as well as you can.

Cardiologists often don't consider a heart enlarged until its size is greater than a standard. However, your own heart may enlarge quite a bit before it reaches that standard. As such, it may be important for you to bring up how much your heart chamber sizes have enlarged from your own norm, rather than whether they have exceeded a general standard. This would be the case if the doctors get to a point where you have strong symptoms and they seem to be dragging their feet.

Keeping your heart records can only help you, especially if you need leverage. Having it now means you can produce it instantly, vs. trying to get the records from various doctors in a hurry later, when you may not see time as your friend.

I absolutely agree with Gemma and many others above, who said that now is certainly not the time to stop living and wait for this to happen. Now is the time to get really good at the things you will want to continue to do after your surgery.

I would definitely take on that next horse...

Best wishes,

 

[SacredHeart]

Firstly Teresa, I'm really sorry to have worried you I seriously doubt that all british cardiologists are rubbish, I've only seen two, the last one just upset me with his lack of tact is all! You are right, my head is spinning and I am having alot of kneejerk reactions. Mixed amongst all these feelings of mine is a huge deal of anger and when you have anger you usually try to release it by directing it at someone. In my case the most likely candidate is the cardiologist who gave me the bad news in a untactful manner, I probablly shouldn't be shooting the messanger although I didn't appreciate being treated the way he treated me when I had every right to be upset, ask questions and the like (and with the exception of a few tears welling up in my eyes I did so with composure.)

Mary, I totally agree with you. Worrying is most certainly not a way to improve my condition but, as I keep telling my close friends and family, as hard as I try I just can't stop or turn it off. As I also have a history of anxiety and depression (as opposed to being someone who has become depressed after learning about their condition) its not going to be an easy task for me to shake it. I'm certainly going to make every effort to become positive about this though!

Tobagoto, thank you for your super post! I really do appreciate it (and thanks to you I have FINALLY worked out how to spell chutzpah!! )

Thank you all for your posts! I am VERY grateful. this is a really great forum!

 

[SacredHeart]

Exercise???

Exercise???

Sorry, ANOTHER question! My cardiologist told me to go ahead and do all the exercise I wanted with the exception of regular heavy stress exercise such as lifting weights everyday or extreme exertion such as running a major marathon! I'm very happy with this but considering my specifics does this sound right? Can I only do cardiovascular exercise? Do resistance based exercises such as sit ups and push ups count as lifting weights? I should probablly take this over to the exercise forum but seeing as all my specifics are posted here I thought I could squeeze the question in! I'm certainly not as fit as I should be and want to get much fitter, I'm just feeling a bit scared of my body's capabilities right now and don't know what would be considered over exertion.

 

[Nan]

Hi Kris, Don't have an answer about the exercise, but I am sure that someone will soon. Just wanted to welcome you aboard....and glad you felt comfortable to post.

Wonderful that you are seeking second opinions. Especially if you can get to Cleveland Clinic, although Columbia Presbyterian/Cornell Weill in NYC is certainly also a well known place. I think you will feel much better after you have talked to another cardio.

Good Luck!

 

[Barry]

Coumadin really is little more than an annoyance, at least that's been my experience. Gotta avoid blood sports & stay out of fights, which isn't exactly a major limitation on my lifestyle.

Wondering if you've got atrial fibrillation: Many folks experience that as anxiety.

And wondering if the piercings have closed up. One thing I always thought that piercings had over tats was that piercings aren't forever - that if you just remove the jewlery the piercing closes up over time. Izzat right?

I'm not big on piercings, limited to a pierced ear. Really like tats but never saw one I wanted to live with for the rest of my life.

Good luck!

 

[Limp_Anzac_Bizkit]

The most important thing to rememeber with any cardiac surgery is the younger, fitter and healthier you are, the lower chances of any complications and a much speedier recovery will be had.

By the sounds of it your LV is not enlarged, therefore no reason why you shouldn't be able to exercise sensibly up to your surgery, and in all honesty is best thing to do.

Me personally i would just concentrate on CV and forget any serious weights or other anaerobic exercise .... the cardio is probobly steering you away from those sorts of exercises as with stenosis ( the narrowing and hardening ) of the valve is you are prob already suffering increased pressure on the valve/aorta, and adding heavy weights training would add a huge relative pressure spike ( think of a rusting water pipe ... add heaps of pressure suddenly in constant short bursts over time and eventually it will break ), and thats something you want to avoid at all costs.

I'd prob just see if the cardio is happy doing the stock standard 30 - 60 mins aerobic exercise 3-4 times a week, or maybe less if ya havent exercised for a while.

And don't worry about pommy cardio's and surgeons .... my surgeon is a pommy and i wouldn't have anyone else work on me at all, not while he still can hold a scalpal in his hand ( unless i got the only good one, which i very much doubt ).

All the best and welcome to the group!

Todd

 

[Cooper]

Hi Kris,

Glad you decided to post. We have already spoken a little so I won't go into redundant details. However, this quote...

I have just been so dramatically bombarded with bad news that I am desperate for some sort of good news, or something that will enable me to think positively. The level of depression I have been experiencing the past 5 months has been unbearable and gradually increasing and I am utterly desperate for some relief. I guess what is depressing me most of all is the possible negative implications this is having on my equestrian career.

...made me think of something I heard recently, and it was:

"You become who you really are when you bear what you couldn't bear, and do what you did not know you could do."

Whatever happens, I believe you are going to be fine.

 

[SacredHeart]

Coumadin really is little more than an annoyance, at least that's been my experience. Gotta avoid blood sports & stay out of fights, which isn't exactly a major limitation on my lifestyle.

Wondering if you've got atrial fibrillation: Many folks experience that as anxiety.

And wondering if the piercings have closed up. One thing I always thought that piercings had over tats was that piercings aren't forever - that if you just remove the jewlery the piercing closes up over time. Izzat right?

I'm not big on piercings, limited to a pierced ear. Really like tats but never saw one I wanted to live with for the rest of my life.

Good luck!

Hi Barry! I'm lucky to know about my condition as hopefully I'll be able to catch it in time (AND hopefully have an extended period before anything needs to be done) in which case technology will have improved and I can avoid Coumadin at all costs!

The piercings have pretty much closed up. I'm left with some tiny dots here and there and that is about it! You may be able to take out the jewelry but if you put a piercing in a really obvious place you may get left with a little scar.

How does one know when they have Afib?????

all the best,

Kris

 

[SacredHeart]

I saw another cardio and......

I saw another cardio and......

Hi Guys,

I saw another Cardiologist yesterday and had another echocardiogram. He was a very nice guy and had been studying bicuspid aortic valves in particular for many, many years. He was one of the first to see photographs of Leonardo DiVinci's drawings of BAC's and start writing about the fact that DiVinci was the first to discover the condition.

Right now I have decided that there is no definite time span that anyone can give me BUT this guy has an entirely different look on the whole thing. From my records and the echo he firmly feels that it would be unusual for valve replacement to be necessary before 45-50 years old, and he said even that was pessimistic. He felt the 10 year time span the previous cardio gave me was extremely unlikely! He told me that if I were his own daughter he would not feel it necessary to give me an another echo for THREE years unless I started experiencing symptoms. He said my regurgitation was so minor that he'd hardly consider it necessary to mention! WHOOPY DO! I WILL take this with a pinch of salt, its very easy to disregard bad news in favour of good news but I feel a great deal more confident about this cardiologist and the fact HE did the echo and looked at everything himself rather than looking at a piece of paper from the echo lab and saying "Your valve has 10 years Kris, no ifs, no buts."

The echo results will be sent to NYU and CC for several more opinions and so I have the confidence to know that IF anything should go wrong early than suspected then I have experienced surgeons who are familiar with my particulars and the type of surgery/valve I want at the ready. If a top surgeon tells me they can pop in a new type of long lasting biological valve (as is being pioneered at the CC) so that there is a high chance I can beat the need for coumadin and keep riding horses, and do it by a small incision under my breast so I can go to the beach and wear evening dresses with confidence then I CAN and I WILL face this with positivity and acceptance.

I think this is sinking in a little, I feel much better today!

 

[Barry]

...How does one know when they have Afib?????

all the best,

Kris

I'd apparantly had it for quite some time and didn't know about it. But with most folks it's experienced as anxiety or as a fluttering in your chest, your heart doing flip-flops. I'm in nearly constant Afib, so it shows up immediately when they hook me up to monitors at the cardiologist; I'd think with most folks it would take a halter monitor to find it. A halter monitor is a gizmo you wear while you've got electrodes from it stuck to you, and it makes a record of your heart over a 24-hour period. When I was hooked up to a halter monitor they found that I was going into extreme Afib when I was asleep.

I've only been aware of it once, when I was post-op from getting my mechanical valve put in, and it was really creepy: Felt like there was a little bird in my chest flapping frantically to get out.

Treatment for Afib is Coumadin (when your heart flutters it can throw clots), so if you've got Afib you may want to consider a mechanical valve since you'll be stuck on Coumadin anyway and mechanical valves generally last longer than you will.