New to site

[Michael]

Hi, my name's Michael and I only joined this site a couple days ago. I am very glad I discovered this site. It appears to have a whole lot of good information not mention a whole lot of good people.

I was diagnosed with AS a little over a year and half ago. At the time my cardiologist said it was mild (area = 2.4 sq cm) and that we just needed to keep an eye on it. In the last few months I have been feeling lightheaded all the time, so I went to my cardiologist and told him of my lightheadedness. He had me go in for an echo and found the AV area had reduce to 1.2 sq cm and the pressure gradient had increased to 38 mm Hg putting me in the moderate range of AS but I was no longer asymtomatic. And by the way I have a bicuspid valve.

My cardiologist said I may need a valve replacement within a year. He said the hardest part of his job is when to recommend valve replacement. He said AS tends to plateau then rapidly deteriorates only to plateau for a while again. But he says for me he says valve replacement is not question of if; it's a question of when.

I have begun my quest of seeking information on valve replacement which is how I stumpled across this site. I leaning toward the Ross Procedure because of my age (I'm 52) and I'm in relatively good shape and lead an active lifestyle. My wife and I do a lot of back country horseback riding in addition to lots of hiking. Also I thinking getting the surgery sooner than later because it has already restricting my lifestyle (I was supposed to do a 100 mile endurance ride in July that my cardiologist suggested I don't do).

Anyway I have only just begun to reap the information that is here. And I appreciate any guidence in finding more information. Thanks to all.

Michael

 

[Ross]

Hello Michael and welcome to the forums.

It would probably be best for you to just start reading in the Valve selection forum and perhaps do a search on the Ross procedure if you haven't already.

Bear is mind, what you want is not necessarily what you'll get. Make a first, second and third choice and be happy with those choices.

If you need anything, just yell.

 

[fyrfytr]

Hey Michael,
Just want to Welcome you also to this Great Site. Like Ross said, you might want to do a lot of reading. You will find a lot of very nice and helpful people on the site. Welcome to the family!
Take Care

 

[ALCapshaw2]

Welcome to our world Michael,

TIMING is a BIG issue in these Forums.

I highly recommend you ask for a referral to a SURGEON ASAP (since you are already symptomatic). Note that Ross Procedure Surgeons are a special breed, not always available close to home.

Surgeon's generally like to operate sooner rather than later to minimize damage to the heart muscles and walls. Since surgery is inevitible in your case, I see no benefit in 'milking out' the last gasp from your valves. Several of us found that we got to the surgeon 'just in time' and that our valve condition was worse than predicted by the echo results.

'AL'

 

[epstns]

Hello Michael and welcome to The Waiting Room -- the virtual room in which many of us await our turns in surgery. There are many of us here pre- and post-surgery, so I'm sure you can get answers to most (if not all) of your questions from people who have first-hand experience.

I'm another AS patient who is "watching and waiting." A couple of years older (57) and pretty much asymptomatic -- but my time WILL come. As most AS patients ultimately find out, if yours is an "active" case, it is not a question of "if" but one of "when." I'm glad you've got a cardio who is not afraid to admit "this may be the time. . . " As Al mentioned, there are numerous members here who found out after surgery that they were "almost late."

Make yourself comfortable, read a lot and ask any questions that come to mind. We're glad you're here, too.

 

[ALCapshaw2]

One more note on timing.

One of our members (Bob H I believe) coined the phrase:

"The worse it gets, the faster it gets worse"

This may be especially pertinent in your case, going from 2.4 sq cm to 1.2 sq cm in only 18 months. That is a HUGE change in a fairly short time. One of the 'time for surgery indicators' is when the area is under 0.8 sq cm.

'AL'

 

[Wise]

Welcome!

Welcome!

Michael, I also want to welcome you to the site. I'm not at the stage to be giving advice yet, being a new member myself. It seems the more I read, the more I have to learn. I received such a warm welcome from these nice and knowledgeable people, that I just had to extend my welcome coming from a heart warmed by the pleasure of such good company. I have a bicuspid aortic valve as well. At my last echo my cardio found me to be asymptomatic, but feels that I will certainly face surgery at some point. Maybe I'll be lucky. Just in case, I so happy to have the support in this forum to depend on. Wise

 

[Mary]

Michael,
Welcome to VR! I'm also 52 and I should undergo the Ross Procedure around the first day of June--however, like Ross said, until the surgeon actually gets in there and looks at the condition of my valve--nothing is certain

Several members have had the Ross Procedure,and although it's not as common, it is a viable option for some.

You should have enough time to read the different threads and see what members have experienced with different valves so you can make up your own mind. Remember, what you decide is the right decision for YOU!
Mary

 

[geebee]

Michael,
Welcome.
I am a mitral valve replacement survivor so I can't help you with your particulat situation other than moral support. You will get a lot of that at VR.com.
Best of luck to you and I hope everything goes smoothly.

 

[Michael]

Thanks to all for your kind greetings. Al, I'm thinking the same way your thinking. I pressing my cardiologist to get a heart cath and he is amiable to the idea. He has a surgeon in Sacramento that does RP's and he says he is very good. As soon as we do the heart cath the better we'll know how to proceed. Again this is a great site and I am so glad I found it. Mary let me know how things go with your RP in June.

Michael

 

[Randy'38]

Sooner or later

Sooner or later

Hey Michael:

Welcome to the site. When I first discovered my AS in '93, I had a x-section of 1.4 cm. It slowly decreased to 0.9 by Sep '03. By March '04 it was down to 0.7. That's when I made my decision to replace my valve. I originally was going to go with a St. Jude Mechanical valve, but after researching I decided to go with a bovine (I was 65). The projected life of the valve was 18+ years so I decided I could live with that. I don't think you have that choice, but do look into the ON-X valve. I wasn't aware of it at the time I made my decision. I, too, am very active and didn't want to put up with the hassle of the mechanical valve. You've come to the right place. Keep us informed. We care.

Randy

 

[catwoman]

One of our members (Bob H I believe) coined the phrase:

"The worse it gets, the faster it gets worse"

'AL'

I'll second that!!!!

 

[Marguerite53]

Welcome!

Welcome!

Hello, Michael.

Welcome to this great place. Nice to have another person on Pacific time (it doesn't seem like there are that many of us). I'm 51, and in the "waiting room" with a .95 Aortic measure (gradual drop from 1.9 in 1998) and have been told that I'm too healthy, currently, to worry about surgery! I have my next echo in June (gratefully after 2 children graduate, one college, one high school) and it will be interesting to see where I'm "at" at that point.

My only symptoms are shortness of breath (SOB) and my stenosis is categorized as moderate.

I found that gathering all my echo reports, listening and asking questions here about the numbers, going in with a typed list of questions for the cardio and relaxing about the whole situation have been the most helpful in this experience so far. Reading people's accounts, successes, concerns, hindsights, etc. has been incredibly helpful. I feel like I'd be ready tomorrow if some unlikely emergency were to occur. I just searched, followed links and read and read. There is a marvelous list of links in the resources section.

Again, welcome! and visit often. Take care!

Marguerite

 

[ALCapshaw2]

Marguerite,

Do you you have all of your echo reports?

If so, I recommend that you also chart your
chamber dimensions (LAD, LVD, etc) to look
for ENLARGEMENT which often (usually?)
occurs BEFORE your valve area becomes
severe.

Some people are fortunate and their enlargement
returns to normal size after surgery. MANY of us
are NOT so fortunate and this can lead to problems
with arrhythmias (A-Fib, PAC's, PVC's). SURGEONS
are well aware of these problems and prefer to
operate sooner than later which tends to produce
better surgical results. Personally, I don't 'buy'
the argument to 'squeeze the last bit of life out
of your native valve(s)'. Some of us have learned
that our valves are in much worse condition than
the echos would suggest. To my mind, earlier is
better.

'AL'

 

[McCln]

Best to do as suggested on this post, get studing on the different valves and techniques. You have quite a bit to do here. We share our own experiences. I had aortic valve replaced at age 36 with St. Jude's valve and on warafin. My activies have increased since and not restricted from anything. I do not do marathons, but love being able to be active and get the heart stronger. Good luck and come in as often as you need and ask questions. Have a great day.

 

[SHerrin Hutt]

Welcome Michael
I am 52 also. This a hard thng to except but believe me you can get through it and there are alot of great people here they can help you. My thoughts and prayers are with you. There is a great book you can read befor your surgergy. My Dr. suggested it to me It is THE HEALING HEART by Dr. OZ. He has been on Oprah. It is a really good book.

 

[Marguerite53]

for AL

for AL

Thanks, Al, for your concern. I don't want to hijack Michael's thread so I'll email you privately with other info that may not be pertinent to Michael's questions.

The LV enlargement is an issue which I've brought up with my cardio as there is, actually, evidence of minor enlargement. She is aware and unimpressed. She is more concerned that I am overweight (about 40 pounds) and haven't been exercising enough and we are working on that issue now. (Obviously not a concern of Michael's!!) It took awhile, but I have decided to trust her due to her incredible status/respect in our metro health community and, again, because at this point, I really want to make it at least to summer without any interruptions! (she knows this) She has insisted that she has lots of patients who maintain at this level of stenosis for years. She insists that my situation will never be a sudden one, that even when I "reach" her threshhold of .75 aortic valve dimension, we will probably still not be in a major hurry. (I asked at what point she calls in the surgeon).

Truly, the hardest part of waiting is learning to trust the person you're waiting with! I just had to decide to stop trying to control something I had no control over! Choice, yes. Control, no. That was very difficult for me. If I were feeling like I was going to pass out, we would both be responding differently. At one point, I was put on a diuretic by my GP (BP was somewhat elevated at 135-140). Simultaneously I started experiencing heavy pressure in my chest. I reported it to my cardio. She was all over it, scheduling tests, etc. She switched me to Diovan 80mg. (low dose) and the pressure went away immediately. We met and decided to wait until June for anything else unless new symptoms developed. If I haven't lost a bunch of weight by then, I'll be in the dog house, I know!!

Ok, enough of me!! Michael, I rambled on because I felt that it is important to know that the more you learn, the more questions you will come up with. The relationship with your doctors is so important and everyone here will attest to that. Don't hesitate to ask your doctor anything. You are responsible for being comfortable with the decisions that are made which affect your future. With that said, and knowing that everyone's situation is different, Al Capshaw and others have strong feelings about earlier intervention being better and I personally think they are probably right!! Whether or not we maneuver our paths to suit our instincts and purported knowledge is a very personal decision. What is wonderful about this forum is that everyone?s experience is different and so many facets of this major event can be explored.

Keep at it. Michael! Marguerite