Surgery in the offing andI don't feel ill at all

[Tam]

Hi everyone

My name is Tam and I live in Scotland. I'm 48 years old and I was diagnosed with aortic stenosis some 18 months ago. This was discovered purely by chance during a routine check up. Since then the valve has narrowed considerably and my cardiologist now tells me that it's time to consider surgery.

He took a lot of time over my last echo scan and he is absolutely sure of his findings - no doubt about it. I can get a bit short of breath when climbing stairs but nothing really drastic - and apart from that I feel really well. I'm not doubting my cardiologist's advice and I've known for a time now that I'd need surgery at some stage to replace my aortic valve.

My question at this stage is whether any of you guys had a similar feeling in the months before surgery. Feeling welll and nearly symptom free. Did anyone go to surgery feeling totally well, knowing that they'd wake up feeling much worse than they did before?

I'm not railing against the idea of surgery and I'm trying very hard not to wallow in self pity over this. I'd be very grateful indeed for folks sharing their experience of this with me, and I look forward to posting regularly as the time of my op approaches - some time before Christmas I'm told.

I have a wife and a 17 year old daughter - I have everything to live for and I'm determined to stay positive. This site is a great source of comfort to me already as I can see that my medical problem is far less uncommon than I initially thought.

Cheers, Tam Cook

 

[Ross]

Tam this is the beautiful thing about heart disease. Some people never have any symptoms, but when they finally do, it's general catastrophic. Those with the symptoms beforehand, usually have care up to and including surgery, so that the heart is not damaged. Damage is the largest concern for those that are symptom free for the most part. Breathlessness, however small, is definately a symptom that I think everyone of us can relate too.

Please don't sound so down about it all. You'll have the surgery and be back better then ever and life will go on. I promise, your not heading to slaughter. Look how many of us are here to talk to you--We've been there and some of us, more then once.

Perhaps you could tell us a little more about the findings that lead them to believe that replacement is necessary?

 

[aussiemember]

Tam, I also am symptom free but have been told I will need surgery in the not to distant future. I can relate to you questioning the idea of surgery when you feel totally fine. My cardiologist believes, as Ross has said, that it is important that things are repaired BEFORE the heart is damaged. I just want to welcome you to this fabulous site and feel free to ask any questions you may have as I'm sure someone will be able to help. - Jeanne

 

[Karlynn]

Welcome Tam!
We have had some members report that they were symptom free prior to surgery and then after surgery and recovery, say that they felt so much better. Sometimes changes are so slow that the body adjusts to them without you consciously realizing it.

This is a highly perfected surgery. As in all surgery, there are risks, but valve surgery is done quite often. It does take some time to recover, but I know'll you'll feel great after all is said and done.

 

[Phyllis]

Welcome, Tam. Dick was very active and symptom free until he had one big symptom about two months before surgery- he fainted on the tennis court. You will do fine and it is important to get the surgery before any damage to the heart occurs.

 

[dkapuscik]

Hi Tam

Hi Tam

I was for all practical purposes symptom free other that I seemed to be getting tired easier than normal. Then my GP noticed a murmur that wouldn't go away as before in my life. Then I got a tooth infection that led to endocarditus, almost killed me in Jan 06. Had to have a damaged valve replaced 3 weeks ago. Its not as bad as you think, however, as Ross said, it all works out in the end. If you stick your head in the sand you could head for disaster.

 

[TikTak]

Hi there,

I was undiagnosed and totally unaware that I had a heart condition before "things started to happen". Although I just months before my OHS started to have symptoms that I, now looking back, can link to a failing heart(-valve) function. I was in total denial and thought that it might be something benign that will go away (as it always does). Well the symptoms got better for a while but never really went away. Quite suddenly I started feeling worse and though I still had better and worse days I soon was trapped in what I now understand was a downward spiral of heart failure. When I finally sought medical attention they could no longer tell if my failing heart function was caused by the aortic valve regurgitation or a condition of its own. When they told me that I would need OHS for an AVR it was easy for me to agree considering the mess I was in when I came in.

The risks of AVR surgery are quite low and based on overall condition of the of the patient, the patients HEART FUNCTION and other medical conditions. If you're feeling well going into surgery, the chances for a good recovery should be great.

 

[Georgia]

Hi, Tam - welcome to the site. I'm sorry you're dealing with this, but the good thing is that you have a mechanical problem that can be repaired by a good mechanic.

As everyone has said, the time to have surgery is before your heart's damaged. There are those who can't seem to get a diagnosis to save their souls, and go into surgery in poor shape, deconditioned, and destined to have a very long recovery. It sounds like you've had great medical care and a good doc who's on top of everything.

Hang in here; search through the threads for information, and ask any questions you want. This is a very scary time for you; I'm sure it feels surreal. And probably the first thing you want to do is run away (I sure wanted to).

Your family is welcome, too, should they have questions.

 

[Marguerite53]

Hello, Tam. And welcome!

Please do let us know some more of the particulars so we can guage our responses more accurately.

For me, AVR was "easy". I had no other medical conditions, my heart had not started to change dramatically. I had severe (possibly critical) narrowing of the valve due to AS (aortic stenosis) but only moderate calcification. My arteries were clear. No other maladies in my body whatsoever. Good strong lungs. (however, I'm 52 and not particularly an active/athletic person, so I guess being quite overweight was not in my favor). My surgery was less than 3 hours long and I have had no complications during recovery (knock on wood....I'm 12 weeks out).

If you have other medical conditions - asthma, narrowing arteries, an aneurysm, etc., your experience may have a bit more involvement, but it can certainly still be what they love to call, "textbook". As in....just like it's written with no problems or surprises.

It's lovely to have you among us. Please let us help you with your fears and concerns. Everyone is different, of course. But the combined information here is wonderfully helpful.

Marguerite

 

[EVELYN]

Hi Tam and Welcome to a great site!!

I'm Evelyn, whose husband, Tyce, had AVR in June '02. Tyce was under the care of our cardio only because he had opted to give blood years back and they said his heartbeat was irregular (pvc's). From that time on he had his annual echos and that was about it. He was TOTALLY asymptomatic on his last echo...March, I think. In May he was having trouble sleeping....THAT WAS ALL! I didn't like his color and said...."We're going to the hospital." Well, they found he was in afib 196 beats per minute, kept him there for a week, and our cardio said...."That's your sign." He got out of the hospital the end of May and had surgery three weeks or so later.

It can come on VERY quickly, or not at all. The most important thing is that there is no damage to your heart muscles. I'm sure if your cardio says it's time, it probably is. Personally I think cardio's wait as long as they can and surgeons would rather have people come in before they have signs, but that's my opinion.

Good luck, and glad you're here.

Evelyn

 

[Leah35]

Welcome Tam

Welcome Tam

Hi there,

I'm sorry to hear that you're in this situation, but as I'm sure you can tell already, it's really not too bad. I've had my first surgery at five weeks, so I've dealt with this my who life. I always consider myself lucky to have a heart condition that is closely monitored. Some people never know they have one and then Bam.....it comes on too quickly!

you'll find lots of great information on this site, not to mention great people as well.

Good luck to you and again, welcome!

 

[MikeHeim]

Tam-
The replies above have all been excellent and I totally agree with them. It is not normal to get SOB when climbing stairs. Some people have no symptoms with very severe valve problems, other people have very severe symptoms with only minor/moderate valve problems. In my case, I only had SOB and some chest pressure during heavy physical exersion. I was completely fine climbing stairs and had no symptoms at all while at rest. It turns out that I had very severe mitral regurgitation and my left ventricle was significantly enlarged as a result.

You are far too young at this point to allow your self to deteriorate and possibly cause permanent damage to your heart. Cardiologists are notoriously conservative, so if yours says it's time for surgery, you should realize that he's not suggesting this lightly. I wish you the best as you go through this and know that you traveling a path that is well-beaten at this point.

Mike

 

[temp69]

Go for it

Go for it

Hi there:

I, too had stenosis, and was told my one cardiologist to just walk uphill on treadmill for an hour a day and I'd be fine.

But I was gradually feeling "off my feed." But no symptoms like shortness of breath and fainting.

I was gold by two other cardiologits that the surgery was INEVITABLE so, not being the kind of person who likes to wait, I went ahead, having a mechanical valve put in (I'm 55 and didn't want to have to have surgery twice)

I am now 17 days out post op and feeling a little better every day. I think I'll be better because of the surgery, though I don't feel any different.

One other note, the surgeon told me that my stenosis was much worse than the tests indicated -- he thought it was really great that I did it when I did.

hope this helps. You'll be fine.

temp69

 

[Tam]

A great big thank you to everyone who has taken the trouble to reply to my posting. My wife and I were just reading through them and it is indeed reassuring to know that so many others are positive about this procedure. Already I feel very lucky that my problem has been diagnosed - I guess the patron saint of blasé patients was on duty that day!

If I had gone on happily with my life in blissful ignorance, I npw realise that I might have been on a crashcourse for disaster. Count your blessings indeed.

In the UK we have both private and state funded medical cover - by luck we have private cover via my wife's employer and just this afternoon they confirmed that my treatment will be funded in full. Another weight off my mind!

It's quite remarkable to think that people 1000's of miles away are taking time to reply in a considered, compassionate way - I really appreciate it. I'll be here regularly and I will certainly post all of my experiences too in the hope that I can help someone else in turn.

Tam

 

[SpoDeb]

New Member

New Member

Hi

My name is Debbie and I'm pretty much in the same boat as a number of other members I've read on this thread.
I was diagnosed with BAV when I was a teenager and told that "someday" I would have to have valve replacement, but in the interim to get annual echos and take antibiotics when I went to the dentist. For 20 years nothing changed.

When I went for my annual echo/cardiologist appountment 5 weeks ago I was shocked to find out out that I've had significant changes to my valve and increased regurgitation in the past year...I'd had 0 symptoms and worked out 4-5 times a week...so much so that they are recommending surgery this year...and next month if I want to be feeling good for my wedding November 11.
I still am feeling no syptoms (other than stress about my impending surgery, whether to go with tissue or mechanical and which surgeon to go with- Laks (UCLA) or Trento (Cedars Sinai) here in LA.)

But I guess the cardiologists and surgeons know what to look for.

I'm really thankful for this site and everyone's postings since it gives me much more of an idea what I can expect in the days and weeks after surgery, as well as moral support.

I'm probably looking at AVR the middle of August.

Debbie

 

[Georgia]

Welcome, Debbie! Even when you know it's coming "some day" it's a huge kick in the gut when "soon" is the "some day."

Mostly it's better to get the work done prior to having damage to your heart. If your cardiologist is recommending surgery, take him/her seriously. Cardios tend to be conservative.

Look through the posts on the forum and feel free to ask any questions you may have.

 

[lopearredlady]

Personal Decision for Surgery

Personal Decision for Surgery

Tam,
It truly is a personal decision. I had very few symptoms prior to my surgery July 5th, 2006. All I can tell you is that they discovered further abnormalities during the surgery and I am quite thankful I opted to go ahead and get it done, rather than waiting for symptoms to get worse, as my cardiologist advised (reasonably so in most cases).

I asked the question, also, many times prior to my meeting with a surgeon.
It's your decision, and you have to make it and stand by it. I'm not back 100% and better yet---ha ha---but I plan to get there!!!!

Just some thoughts,
Terry

 

[Liz]

Welcome to the site!

Welcome to the site!

Hi Tam - So glad you found your way to this site. My problem was with the mitral valve, not the aortic, but I'll share my experience anyway in case it helps. When I was first diagnosed in January of this year my only symptom was unusual fatigue (which is why I went to the doctor). It stayed that way for a couple months, and then seemingly overnight my symptoms started to escalate and from then until surgery it felt like I was getting a little (and sometimes a lot) worse day by day. My cardiologist explained that the heart can compensate for a leaky valve for a long time, but once it can't compensate any longer the symptoms can really accelerate.

Being pretty symptomatic before surgery helped me emotionally come to terms with needing surgery, but I also was aware that every day I was losing muscle tone, aerobic capacity, etc. because of my diminished ability to exercise. I knew that recovery would take me longer because I was starting from a more depleted state. If you are able to go into surgery without having to experience months of being physically limited, you will be in that much better shape to tolerate surgery and recovery quickly and fully.

Hope this helps. Again, welcome to the forum. Feel free to ask any questions, there is a wealth of information available here.

Take care,
Liz

 

[Mary]

Welcome Tam,
As you've heard by now, being SOB after walking up stairs is considered to be a symptom.
Keep reading and asking questions.
We're here when you need us.
Mary