New member

[alpage]

Hello, I'm Alan from Toronto. I've searching the Internet regarding valve replacement and stumbled on this site. Much better than newsgroups, which are full of spam.

Anyway, I've have a congenital bicuspid Aortic valve. To keep the story short, I first saw a cardiologist about 5 years ago and was told surgery likely within 5-7 years. At that time I was in great shape and had no symptoms. About a year ago I started to feel I had less energy. Still doing aerobics, but at a lower level. Then I started to slowly get a more tired, especially in the evenings. I cut out aerobics, but still in pretty good shape.

The past few months I have had quite a bit of fatigue and very low exercise tolerance. I'm just worn out at work, even though it's a desk job and not all that stressful. Given that, and my Aortic Stenosis progressing to 'severe', it's time to get a surgical consult. The name of Dr. Tirone David from Toronto keeps popping up in my Internet searches as a very good surgeon, so I've asked my cardiologist to refer me to him. I hope he can offer a wider choice of surgery (Ross, homograft, biograft, mechanical) and he's supposed to be a top surgeon. On the other hand, he will have a fairly long waiting list but my cardiologist and I think it'll be okay.

I'm booked for an angiogram November 6th, then off to see the surgeon. BTW, before I switched careers I was a Registered Nurse (for about 3 years). That was over 20 years ago, but it helps me understand what's going on with my heart and surgery.

I've been searching for ways to reduce fatigue, and found many references to CoEnzyme Q10. I've been taking it for about a week and it just may be reducing fatigue a bit - hard to tell. Any suggestions to deal with fatigue would be very welcome.

Many years ago in school I spent a week on a cardiac surgery ward, even saw an angiogram being done and talked to some valve patients. Little did I know that one day I would be the patient.

Alan

 

[Zazzy]

Alan, Welcome to the group! You will find this site not only informative, but the people here are great as well! They are very understanding and caring.

Good luck with your appointment.
Take care,
Zazzy
Mitral Valve Repair 10/3/00
CHF
CML (leukemia)
Breast cancer
Mastecomy

 

[Nancy]

Welcome Alan-

Welcome Alan-

This is just the greatest site. You'll love it. Everyone here knows what you're talking about and can relate to your symptoms. It's fortunate that with your medical background you have a good understanding of what's going on with your particular problem, but having it yourself can be a little daunting to say the least.

The symptoms you are experiencing are just about classic and are the most prevalent symptoms expressed here prior to surgery.

My husband Joe is the patient here, and I do his research on line for him because he hates the computer. He's had 3 open heart surgeries, an aortic and mitral valve replacement and also a repair on the mitral valve. In addition, he has a pacemaker and has had 2 thoracotomies, so he's been through lots of tough stuff. You'll find many others here who've been through lots of tough stuff and they are all inspirations.

Can't help you too much with the fatigue, unfortunately it goes with the territory and surgery will take care of it. Your cardiologist will keep it to a minimum until your surgical date, but in the meantime, be our friend and we'll do our best to help you.

 

[Perrster]

Another Hearty Welcome!

Another Hearty Welcome!

Greetings, Alan:

I agree with Nancy and vr.com people will support you in many ways.

Best of luck with your upcoming stages to better health.

What kind of digital camera system do you have? I'm about to venture into digital video for personal use. Earlier this year I had the pleasure of doing a catalog shoot at a studio shooting the job on a $30K Leaf camera. Awesome quality.

Keep in touch.

Cheers!

 

[Bob Gleason]

Hi Alan!

Hi Alan!

Welcome to our Group! We have a mixed bunch here but with a caring for each other that is unlike anything I have ever experienced.

If you haven't already, check out our personal stories......

..........and, contribute! With your questions, feelings, opinions and emotions, and prayers. Our goal, like Hank has said from the beginning, is to help one another.........and that never changes.

 

[JBriau]

Hi Alan

I also have a bicuspid aortic valve. I had a mitral valve
replaced two years ago. Understand how you feel lately.
I have some shortness of breath and tire easily. I find if
I get plenty of rest (bed early) I can function most of the
day. I watch what I do and try not to overdue things.
I had an angiogram last week and am now waiting for my
surgery. Dr Modry at the U of Alberta will do my surgery.
He did my first one. He has done many valve surgeries
and is one of the best. When no one else can do the
job they call him. He is a very busy man. I will have a
mechanical valve because I already have one. My
mechanical valve seems to be doing well. I hear it
tick and haveto take coumadin.
Take Care and Best Wishes!
Judy

 

[alpage]

Thank you all for the friendly reception.

Perry, I was using a Nikon Coolpix 950, but I just sold it and plan to buy a new camera soon. www.dpreview.com. is a great site for information on digital still cameras from all manufacturers. I haven't yet gotten into digital video, but the company I work for (MGI Software) creates software for digital video editing. I work on the photo editing side, however.

Judy, that's exactly how I feel. I've cut down a lot on activity - even taking the occasional Friday off to sleep in and recover energy. It's funny how it slowly creeps up on you and one day you realize how much your lifestyle has changed. I'm hoping to feel a lot better eventually after I recover from surgery. I am a little concerned about the wait before surgery and how much my symptoms will progress over the months.

I could probably have surgery sooner if I settled for a surgeon with a short waiting list, but that might mean accepting someone with less skill and expertise. If at all possible, I would like the best and most experienced surgeon.

Alan

 

[sylviayasgur]

hi alan!
welcome to this site. it has been a savior for me! my husband, joey, 49, just had an RP 2 weeks ago. he was supposed to have it done the week before he actually did, but it was postponed due to the WTC attack. yes, the wait is the worst part of it all (you'll find many postings confirming that). however, if the dr. is worth the wait, there's nothing to talk about.
i found joey's surgeon on the internet and when we consulted with him we both knew we'd be totally comfortable with him doing the surgery.

joey was (will be again) a runner and biker and very fit. he , like you , started tiring easily. his condition deteriorated very quickly over the last 6 months prior to the surgery. he was even told by his cardio not to work out at all anymore.
the surgeon was surprised that he could even work out at all based on how calcified his valve was!

so, i guess although everyone is different, these things can creep up on you quickly.
i wish you all the best. as everyone before me said, we are here, use us. we have all been in your shoes and totally understand how you must be feeling. there is a great deal of research and info on this site as well.
good luck and be well. please keep us posted.
-sylvia

 

[Freddie24]

Hi Alan,

I can definitely vouch for Dr. Tyrone David. He did my surgery in May. I flew up to Toronto and am VERY glad I did. He is an incredible surgeon. I had a different procedure than you are looking into but I'm sure the results will be similar. If you have the choice, I would definitely suggest making the trip to Toronto - it will be well worth your time!!

 

[alpage]

Hi Freddie,
I live in Toronto, so I won't have to travel very far to see Dr. David - maybe 10 - 12 miles at most. How long did you have to wait for surgery? Did you come from the U.S.?

Sylvia,
It's hard to be completely objective, but I do think that the rate of deterioration has accelerated. Or, it's possible that my valve reached a certain threshold where the effect became more noticable. There was a period a few months ago where I wondered if I was overreacting to fairly mild symptoms or if I was in denial about the significance of the symptoms. There were some days when, late in the afternoon, I would be hit with a wave of fatigue and hardly be able to concentrate on work. Nowadays I'm quite sure that I have significant, but not life threatening, symptoms. I realized quite a while ago that I was not going to be able to exercise my way out of needing surgery, so as my condition progressed I accepted the reduction in exercise tolerance.

I've seriously considered trying to work four days a week instead of five, and management at my company will work with me on that should it prove necessary. I've worked long enough at this company that I have four weeks vacation, so from now to the end of the year I can take the occasional Friday off to rest.

I was a little disappointed that neither my cardiologist nor my family doctor gave any suggestions about how to deal with my symptoms. My condition is apparently not severe enough that any cardiac medications are required. The only suggestion I found on the Internet was Coenzyme Q10, so I'm going to see if it relieves the fatigue a bit.

I'm going to have a lot of questions for Dr. David, but the more I know about the various options, the more I will understand the consequences of whatever approach he suggests. His name appears on quite a few studies on valves, so I expect he has a pretty good idea about the benefits and disadvantages of different valves and surgeries.

My ideal valve (which may not yet exist) would be one that would last at least 15 years and not require anticoagulation. I'm also very interested to know if the Ross procedure would be appropriate for me. But if a mechanical valve is the best option, I'm prepared to live with that choice as well.

Alan

 

[Peter Easton]

Surgery

Surgery

Hi Alan --

I had a bicuspid aortic valve and underwent surgery on September 4th down here at the University of Florida Medical Center. I had symptoms much like yours, though in my case they were deceptively mild, despite the fact that my aortic valve (from what the surgeon later said) was nearly completely closed down. Though all went very well, I came out feeling that I might have done better to get the operation a bit earlier, since the effort of pushing blood through the remaining pinhole evidently caused my heart to develop a good deal of unwanted muscle. But my cardiologist was/is of the school "wait till severe symptoms appear, then act quick."

I had a Hancock Medtronics Mosaic porcine valve put in. Its performance is much like the Carpentier-Edwards bovine Pericardium valve. Both have a track record of lasting around or in excess of 15 years and -- under normal circumstances -- do not require Coumadin. I went with the Hancock option because my surgeon -- Dr. Tomas Martin -- said that the latest model is treated to ****** calcification in ways that give it an edge over the C-E Pericardium. Time will tell!

Best of luck with your decisions and treatment!

Peter

 

[sylviayasgur]

hey alan!
i forgot to mention the thread on (i think it's in heart talk or small talk) entitled "making the choice".
we found it to be so helpful in making decisions. peter easton and others contributed to it and i truly recommend it for anyone/everyone who has to make that decision.

there are also a bunch of RP's on this website. my husband, mara, ben, and i think on or two others.
please pick our brains as much as you like_ we are all here to help and support.

peter's valve was joey's back up valve to the RP. many new valves are treated (washed) to remove dna in order to allow the recipients cells to take over. many are treated with anti-calcification chemicals,etc.

again, we are here for you.
good luck and please keep us informed.
-sylvia

 

[Freddie24]

Hi Alan,

I am from the US. I had to wait about 6 months for surgery but most of that time was due to my insurance not wanting to cover Canadian surgery. Had my insurance not delayed anything, I could have gotten in after about 2 months.

 

[hensylee]

Well,hey there, Alan. Come on in, sit awhile and have a cuppa. Lots of reading here.

I am the 'old one' in here and didn't have valve replacement, had quad bypass and like you, I stumbled upon this site after my surgery and they finally let me stick around. Been about a yr and a half ago and it has been so great. You meet so many with different situations and all have support for each other from beginning to 'over the mountaintop' (that means 'after the surgery') and then after. But we always hope that after surg, folks will continue to stick with us to share experiences for new ones like you.

You will find answers to all of your questions and information that you don't even know to ask.

Welcome. God bless

 

[PhilCraun]

Hey, Alan

Hey, Alan

I had my AVR on July 6th (13 weeks ago). I found the surgery remarkably easy to handle. If I had pain, it must have been taken care of in my IV, because, for the most part, I had a comfortable recovery. I had a St. Jude mechanical implant, and unfortunately I just found that it is leaking. The cardio must not be too concerned because he says we'll look at it (via echocardiogram) in about 6 months. I understand most St. Jude valves do not leak, so I wouldn't worry about the lower probabilities if I were you.
I have been taking coumadin since the surgery, and I have had absolutely no problem with it. The dosage has changed a couple times, but they keep a close eye on it and do not allow it to get to the point where bleeding is a problem.
I wish you the best of luck and there are a lot of us here who are on your side.

 

[Tammy]

Welcome Alan

Welcome Alan

Good Morning -
I have moderate AS, last echo it was at 1.04. Below 1.0 is considered severe. Lately, like you, I have been experiencing late day fatigue accompanied by lack of concentration. I actually got lost driving home one day last week - well not so much lost as missed a turn and didn't notice for several miles. I did manage to get Fridays off and it has been a great help.
I had my Mitral valve replaced 12 years ago and feel I may be in denial on this one at times yet maybe I'm not. It is like you said -
Am I overreacting or underreacting? My theory is better safe than sorry so I take all my symptoms seriously. I am off to the cardiologist today.
Welcome aboard and be assured this is a great place to be.

Tammy
MVR 04/06/89
AS

 

[LUVMyBirman]

Hi Tammy

Best wishes today at your appointment.

Bring us some good news this weekend in Nashville. will you

Chin up girlfriend.

See you soon!

 

[alpage]

Thanks for all the suggestions and encouragement. I continue to research the available options. It's not my intention to second-guess the surgeon. Rather, I want to know the risks and benefits of all options so that I can make intelligent choices. There are many factors to consider. I also need to get the angiogram over with as well, to gather what additional information it can provide.

At the very least I want to know if the Ross procedure is an option for me. I understand it's not necessarily suitable for everyone. Age and condition of the pulmonary valve are some of the factors that come into play. I've also been hearing that you don't always get your 'first choice' if, when your heart is opened up, the 'first choice' turns out to be a bad choice for some reason or other.

It's still early in the process, as I won't be referred to the surgeon until after my Angiogram Nov. 6th. Then the discussion will get really serious.

Alan

 

[sylviayasgur]

hi alan!
my husband, joey, had an RP 3 weeks ago. he is 49. joey's surgeon said that he primarily does rp's on patients between the ages of adolescence to mid to late 50's. he has done some on older patients, but finds the success rate is highest among his choice of population. his youngest patients were 18. there are surgeons who do rp on mostly children (one is at columbia presbyterian in nyc_ dr. quaggerbeur).

from what we were told, you want this more complicated surgery done by a surgeon who has done quite a few of them.
in addition, your cath results will make a huge difference in whether you do a rp or not. coronary artery disease (besides the valve needing replacement) would complicate matters and lengthen an already long procedure. i know joey's surgeon would have been willing to do a rp under those circumstances, but he made it clear that it would make it a looooong surgery and lots of time on the pump (which he didn't love).

in peter easton's thread "making the choice" you will find tons of info regarding different valves, pluses,minuses,etc.
check it out; we found it to be unbelievably helpful to us. (even in selecting a back-up valve incase the rp didn't go).
good luck and let us know what happens.
-sylvia

 

[Peter Easton]

I believe the "centers of excellence" in RP surgery include -- in addition to Beth Israel in New York -- Dr. Elkins at the University of Oklahoma; Dr. Oury and others at the International Heart Institute in Missoula, Montana (where the Ross Procedure Registry is also located); Dr. Doty in Salt Lake City; Dr. Pacifico at University of Alabama-Birmingham; and a fellow in Dallas whose name I forget! Much of this info is probably spread throughout the "Making the Choice" thread -- but it is probably easier to go to the MyRossProcedure website (<myrossprocedure.com>) and contact the people in charge of the Registry, either by phone or by e-mail. They are very helpful.

Peter