Another newbie to this site

[ottawagal]

Hi,
My name is Wanda and I am so grateful to have found this site! It is a God send. In my 20's I was diagnosed with mild aortic stenosis (bicuspid aortic valve) and was followed every 3 years. I am a very active person in my early 40's. Unfortunately, I was told at a routine follow up this past spring that the stenosis had progressed to being severe and that I would likely require OHS in the upcoming months to years (his words were 6 months to 2 years based on my test results). It came as a shock as I am asymptomatic (or at least think I am). I am now playing the "waiting game". I am scheduled for a follow up in early October and am fearful as to what the cardiologist is going to say. It is comforting to know that what I have been experiencing has been shared with others on this site i.e. fear of dropping dead, anxiety, sleepless nights, shock, denial etc. Anyhow...enough rambling...just glad to be a part of this forum. I have read many of your posts and they have certainly helped. Blessings,

[Freddie]

Welcome Wanda to what some of us sometimes refer to the zoo:D
Sorry for the circumstances, but your right this site "is a God send".
Don't be shy on asking questions, there are many who are better in answering your questions than myself.

I just wanted to say "Hi" and Welcome to the Family.

[BDMc]

Hi Wanda! Welcome aboard! Glad you found us, and have seen how "normal" your feelings/reactions are. Our mantra is "Knowledge is power". Try to deal with your anxiety by forming real questions. Then focus on getting the answers (getting the tests, and results, consultations etc...). Try to take care of yourself, diet, sleep, and exercise as the docs allow. If you have no symptoms, you are in better shape than many that have made the trip over the mountain! You should do very well! Blessings to you too. Brian Mc

[ottawagal]

Hi Freddie and Brian,

Wow! What a nice surprise to get a warm welcome so quickly. I do have lots of questions going through my head and will be most likely be posting them soon.
Thank you again...it means alot.
Wanda:)

[dcat96]

Hi Wanda..I also am new and played the waiting game until yesterday and now am 4-6 weeks out before surgery. I have learned a tremendous amount on sight so far.

[ricks399]

I am also new to this site and about 2 1/2 weeks post-surgery. This is certainly the right place for information, comfort and encouragement! This may be easy for me to say but try and postpone most of your worrying until your stenosis gets severe to critical and you are told that you are definitely ready for surgery. Then there will be plenty of time for worrying!

Did your cardio tell you anything else other than 6 months to 2 years? Did s/he base the time estimate on echo results? Anything mentioned about a heart cath? My cardiologist is rather blunt and as he was going through things he told me I could always drop dead before the surgery but I figured why do that and spoil all the fun of surgery, recovery and rehab!:D I really think you should expect nothing but a successful outcome when the time is right.

Anyway, look at the number of registered users on this site - all going through or have gone through what you are. And all are still here!

[hensylee]

welcome to all three of you! This is the best place to be when it's about VR. Plus we hve other stuff goin on - like some fun. Hang w/us to travel your walk to the mountain trek ahead. We are here just for you! Blessins, y'all............

[WayneGM]

Welcome to VR from a fellow Canuck. Sorry for the circumstances, but glad you found us. I was asympotomatic, too, with no history of any heart issues, so I know how shocking it can be when you feel fine but are told you need OHS. Best wishes and good luck.

[epstns]

Hi, Wanda, and welcome to The Waiting Room -- the virtual room where many of us await our own turns at valve surgery. I, too, am watching and waiting for the right time to replace a seriously stenotic aortic valve. I've been watching it for a number of years, and like yours, we believe my valve is bicuspid. (That was the best explanation as to why someone as "young" as I was should have stenosis.)

Anyway, I too, seem to be asymptomatic. At 60 years of age, I still work 50-60 hours a week (office professional position) and jog 20 miles a week as well. My cardio and I have been watching, and as long as things stay where they are, I shall wait. You may (or may not) have a similar experience. It all depends on how quickly your stenosis progresses. That's why they want to see you and do tests so often. Just bear with them, and then do your best to get on with your life. That's how I've managed so far, and it seems to work.

Welcome to the family. We may become a bit dysfunctional at times, but this has been the absolute best place I've found for real-life information about the whole valve disease and surgery arena.

[Superbob]

Hi Wanda, and welcome. No matter how long ago a doc recognized the stenosis, it's a difficult time when a doc says the time has drawn near to have the surgery. But really the good news is that the problem is recognized, is being monitored, and will be corrected, giving you a new lease on life. Welcome to this great place where you will find lots of support.

[Phyllis]

Just wanted to add my welcome, Wanda. Looking forward to helping you as much as we can through this journey.

[Mary]

One of our sons is involved in the same waiting game. He was diagnosed with a BAV when he was 18 and currently sees the cardiologist every three years for checkups. As a mother, I probably worry more about him than I do myself.
Welcome, and as a new member, I'm going to ask a favor of you.
I'm including the link to our "Where in the World are valve members from" thread and ask you to cast your vote. I'm interested in seeing how many members we have from Canada.
Once again, welcome!
http://www.valvereplacement.com/forums/showthread.php?t=12627&highlight=world+members

[Bina]

Howdy Wanda from Ottawa....(city or suburb?)
I was diagnosed at around age 20 with a murmur, in my thirties it was slight stenosis, in my early forties it was "surgery coming your way". I started to faint right in front of the cardio.....how embarrassing.
You will do much better than that, because you have found this group and you will be well armed with info and shared experiences.
I sense a mini-reunion for eastern Ontario coming up!

[Lionheart]

I am asymptomatic (or at least think I am).

Hi Wanda,
I too thought I was asymptomatic and while fairly active (e.g. cross-country skiing); I had slowed down over the last few years which I attributed to aging.

Well in hindsight now that I have my new valve-I can look back and know that my stenosis was the cause of my gradual loss of stamina. I feel a million times better physically and I am doing things that I could not do before. For example now I am jogging regularly and working out three times a week. My body seems to process oxygen more efficiently than before.

When my Cardio told me it was time last August it was almost a relief because in my heart (both emotionally and physically) I knew it was time. To help me get through that emotional; roller coaster I spent my time learning everything I could about the condition and surgery and trying to organize my life in preparation for it all. It helped me to stay focused on controlling the things that I could control and accepting those that I couldn't.

You will do well - good luck,
John

[Dawn-Marie]

Hi Wanda and welcome to this site. I'm, too, waiting. Not for surgery, since i guess what i'm possibly having is not actual surgery, but more similar to a heart cath...it's called a percutaneous aortic valve. All your feelings are normal...i get nervous every time i feel chest pain. My dr. said my aortic valve is so bad i could have a major heart attack anytime, yet i've been stuck waiting since mid-November to get it taken care of and it looks like it will be another 5-6 weeks for Cleveland Clinic to review everything my dr. sent them. So it's the waiting game for me too for a bit longer. It's nice to have you here, but i wish it were under different circumstances.

[SHEEPDOG]

I have a question for you? You say you are ASYMPTOMATIC. Have you noticed that you get winded a little easier than you did not too long ago? Perhaps you have told yourself that you have not been doing as much as you did and therefore are a bit out of shape? I was doing that for a while then , due to a series of events, I was forced to find out EXACTLY how bad my aortic valve was. (I had known about the SOMEDAY replacement since I was 14 y/o, and I am 43 now) After a stress ekg said my heart was OK and an ECHO showed the valve was at 1.2cm, I had a cardiac cath. That showed the valve at .8-.9cm. Thats when I started to realize that i was a bit SYMPTOMATIC and not just OUT OF SHAPE. After the cath, the dr. handed me a card for a surgeon with an appointment date on it. :eek: WOW! This was unexpected! but then it wasn't! You should ask about what the numbers were that made your doctor step things up. You should also know that a Nurse Practitioner that set the ball rolling said from her experience on a CARDIAC FLOOR "the patients that do the best have the surgery BEFORE they are SYMPTOMATIC. I could have waited a while to get my AVR done, but why? I just did it! Got it over with and now I can get on with life. You may want to discuss the options with a Surgeon before too long. Just food for thought and just my opinion so take it for what it's worth. Please don't hesitate top ask questions on ANY subject from US as a group. Im sure someone can help you!

[ottawagal]

First of all I am overwhelmed by your warm welcomes, words of encouragement and sage advice. Thank you all so much! It is hard to believe how many of us are in the same boat. I can't believe that I have only been a member for less than 24 hours!
To answer some of your questions.
My echo showed that the valve area was .84 cm2 and the gradient across the valve had increased substantially from 3 years ag. However, it was not indexed to my small body size.
I can't deny that it has been a real head game trying to figure out whether I am symptomatic or not. I certainly have not been passing out, nor really feeling a real shortness of breath.But, I have always been active (aerobics, biking, swimming etc). and I have to admit that I had changed my exercise routine to less strenuous activities the past 5 years. When my cardiologist saw me and asked how I was feeling I told him fine. He had me walk a number of flights of stairs with him and then took my blood pressure. Apparently, it was normal. I have heard that if you have an abnormal blood pressure response (low bp) in response to exercise, this places you in the higher risk category.
He told me in April 6 months to 2 years would be typical time for me to become symptomatic based on statistics. I have to admit that it seems a little counterintuitive to wait until I get worse, but he said that these are the guidelines as indicated by the AHA. What I find the most difficult is that he has also asked me to limit activity (no volleyball, no running, no heavy lifting etc.) and did use that dreadful term about the small group having the first symptom of sudden death. I ended up going out and buying a medic alert bracelet after that! Hope this sheds light on my current situation. Thank you all again.

[ottawagal]

My cardiologist also asked about my family history of cardiac disease. My father had an MI before 60 and and a number of relatives also had CAD. He has suggested that I go for at least a persantine myoview or coronary angiogram before consideration for valve replacement. I am not sure 'when' that would be.
Certainly lots to think about. I was also informed that I have a mild pulmonary valve stenosis. I certainly would hate to get the aortic replaced and then end up with needing a pulmonary replacement shortly after. Anyone else out there diagnosed with the mild pulmonary stenosis and mild regurgitation? I wonder if this could be related to the connective tissue disorder that has been discussed?
Any insight would be greatly appreciated

[Bina]

Hello again!
When my valve area was .8 cm I was having terrible symptoms. I had to put a chair outside my horse stall so that when I was cleaning it and got dizzy there was somewhere for me to park until it passed. I always had a phone in my pocket.
You would be wise to go for the angiogram, that is a much more accurate test and its not a big deal. We have a couple of informative and amusing threads on it.

[Duff Man]

Wanda, welcome to the forum. It sounds like you should begin selecting/consulting a surgeon and valve type.

[ALCapshaw2]

Many Cardiologists (including mine) and Surgeons use 0.8 sq cm as a 'trigger point' for recommending Aortic Valve Replacement.

Weight Lifting is a definite Risk Factor with Aortic Stenosis, but I am a little surprised by your Doctor's advice to stop running. Many of our members were allowed to continue *moderate* aerobic exercise.

We have an expression on VR.com that goes:
"The Worse it Gets, the Faster it gets Worse"
so you might be wise to start Surgeon Shopping
just to "Be Prepared". You really do NOT want
to be selecting a Heart Surgeon from a gurney
in an ER somewhere!

BTW, It is not uncommon for active / fit individuals to 'think' they are non-symptomatic. Most of them say 'oh yea, I guess I really was symptomatic' after having surgery and getting back in shape.

Welcome Aboard!

'AL Capshaw'

[ottawagal]

Hi Al,
Thanks for the good recommendation. I am going to ask my cardiologist in the fall to meet with a surgeon for the very reason that you explained. I did ask my cardiologist about surgeons at the last visit, but he felt I was "jumping ahead". I agree that I don't want to be in an emergency situation when choosing one. Regarding exercise, he told me that I could walk, take one to two flights of stairs (up until my visit I was taking 8 flights of stairs every mornig at work), and I could go for leisurely bike rides. I think that he was concerned that I might maintain my same level of physical activity and perhaps is being extra strict. Who knows...
Glad to be on board!

[ottawagal]

Wanda, welcome to the forum. It sounds like you should begin selecting/consulting a surgeon and valve type.
Thanks Aaron.
As you can see from my post response to Al, I will be doing exactly that!
Appreciate the warm welcome.

Wanda

[Bina]

Wanda, I know 3 people who have had VR at Ottawa H.I.
2 had St.Jude mechanicals, and 1 had a tissue valve.
I'll try to get some references for surgeons, just in case you want more options.

[ottawagal]

That would be fantastic! Thanks you for that!

[ALCapshaw2]

Hi Al,
Thanks for the good recommendation. I am going to ask my cardiologist in the fall to meet with a surgeon for the very reason that you explained. I did ask my cardiologist about surgeons at the last visit, but he felt I was "jumping ahead". I agree that I don't want to be in an emergency situation when choosing one. Regarding exercise, he told me that I could walk, take one to two flights of stairs (up until my visit I was taking 8 flights of stairs every mornig at work), and I could go for leisurely bike rides. I think that he was concerned that I might maintain my same level of physical activity and perhaps is being extra strict. Who knows...
Glad to be on board!

Just to be on the Safe Side, I'd recommend starting your surgeon search sooner rather than later. The Really Good Surgeons are often booked for several weeks in advance and with BAV, your surgeon may want some more tests (Chest CT or MRI) not to mention the usual Cardiac Catheterizaton / Angiogram to look for signs of Connective Tissue Disorder (i.e. aneurisms).

You may want to check out Dr. Tyrone David, head of Cardiothoracic Surgery at Toronto General Hospital (see http://en.wikipedia.org/wiki/Tirone_E._David)

He is a World Renowned Heart Surgeon and has operated on several of our members, all with glowing reports. You may even be able to do a 'self referal', just call his office and tell them your diagnosis. (That works in the USA anyway). They will want to see you latest Test Results and actual Tapes for review.

FWIW, my Cardio recommended AVR when I was at 0.8 sq cm. It took a month to get in to meet his recommended surgeon and another month to get surgery scheduled. I won't go into the details, BUT, I believe I got into surgery 'just in time'.

Good Hunting!

[pamela]

Another question you need to address is how long has it been since your cardio has been to a seminar. I know most docs try to stay current but if they've been busy, or if he's been ill or otherwise unable to keep up, then his information may be a bit dated. Many doctors who are in practice only see heart attack patients and not valvers, you are unique, and if you're bicuspid, there is a lot of new information about the disease out there.

So, don't wait for your doc to ask experts for you. Know your questions in advance and then you'll have the answers on time. The best thing you can do is to test your doctor with the question: If you were me, what would you do and who would you see?

[emc07]

Welcome Wanda,
This site is invaluable to people going through what we are. People here are very knowledgeable and encouraging. I thank God every day that I found a site like this.

I was training for a half marathon when I found out I needed surgery... Of course the Dr. said I should stop the training, but that I could run 2-3 times a week, but just make sure not to overdo it. I was surprised as anyone that I needed surgery. I figured someone training for a half-marathon wouldn't need it so soon. I was wrong. I thought I was Asymptomatic up to that point. I was wrong about that too. It's weird how this creeps up on ya. I guess I was always going to have it, it was just a matter of time.

Anyhoo, welcome and know that there are many people here that will help you through this whole experience.

[netmiff]

Welcome Ottawagirl! you've found a good place to be. You can ask anything that's on your mind, and you will (a) find a zillion people who have had it happen or have some experience and (b) will always be taken seriously, no matter how stupid it seems.

I had murmur detected in 1985; referred to a cardiologist about 8 years ago for annual followup; three and a half years ago, my cardio said it had gone from "sometime . . " to "sometime soon"; then 18 months ago it was, "now". Well, both times I just about fell out my chair with shock! No, it's not me, must be someone else's echo or something, I feel fine, really, etc, etc. etc. But I got it done within 6 months and feel better. Must admit, it takes some getting used to, though!

[hall]

Hi Wanda and Welcome! Please keep us updated.

[Cooker]

Wanda ... Welcome to the zoo ... wishing you the best!!!:)