New to site

[carista]

Hi everyone!
I just happened to discover this site and I am very excited about it. I think I could definately benefit talking to people in the same, or close to the same situation as I am in. I've been very stressed and a little scared.

I am 26 years old and I recently found out in February that I have aortic stenosis. I was told most likely somewhere inbetween 6 months to 2 years I will have to have my aortic valve replaced.

When I was 10 they discovered I had a bicuspid aortic valve. However, I don't know if my doctor just wasn't very knowledgeable or if much wasn't known at that time, but my doctor told my mom and I that it was very mild and I MAY have to have surgery sometime but that he thought It would be unlikely. Unfortunately I never thought I actually would have to. I never got my heart checked again until this January when I went in to have a physical and I mentioned that maybe I should get it checked. So I did, and found out that it was already severe. Since I'm so young my surgeon suggested I wait as long as I can to have the surgery.

This is soooo hard for me, because for the past year I have gotten into bodybuilding and I enjoy it very much. I was told I can no longer lift more than 10lbs, no benching, and light cardio. Granted, this isn't the end of the world and once I have the surgery and recover I know I will feel much better. But I just feel like my world got flipped upside down in a matter of days.

I would love to talk to anyone willing to offer their stories and how they got through it. Especially if there is anyone close to my age that had it or is going to. I already know I'll have to have 2 surgeries because I want to have kids, and as I'm sure you all know, once I have the mechanical valve in I'll be on blood thinners and then I can't. So I'll first have a tissue valve or human valve and then I'll have the mechanical valve put in.

Sorry, I didn't mean to write a book here Anyway I would love to see if there is anyone out there close to my age that is in the same situation.

Thanks for listening and nice to meet you all!
Carista

 

[geebee]

Welcome

Welcome

Carista,

Welcome to our family. I had my first surgery at 28 although it was mitral replacement. I think it is a good age if there is a good age to have surgery. You're still young enought to bounce back and old enough to know the seriousness of the surgery.

You are ahead of the game because you know what kind of valve you want. Most people spend more time over that decision than anything else.

You can still stay in shape without weight lifting. Pilates is a great way to tone without putting undo stress on the heart.

I am sure a lot of our aortic valve folks will chime in as I think there are actually more aortic than mitral as members. Of course, I could be wrong

Stick with us - we'll help you through.

 

[gijanet]

Hi, Carista!

Hi, Carista!

Just wanted to welcome you to the group. You will be getting lots of feedback over the next few days from folks who have been in your very situation. Sounds like you have already done some research. Good girl. Welcome and hugs. Janet

 

[BionicRedneck]

Hi and I hope everything turns out well. I know how you feel about being young what to do. I am 24 and in feb had a AVR, aortic root and arch repair due to a 7cm ascending aortic aneurysm.

I kind of disagree with your Dr. about waiting. Your age like mine is one the things that is on your side. It is easier to recover (relatively) at a younger age since your body is in better shape and has less miles on it. I was supposed to be out of the Hospital in 4-6 days instead of 7-8, it ended up being 18 due to complications. I can honestly say that when I got out of the Hospital I was through most of my recovery. Stiffness and soreness was about the only thing left. When I got home i was able to stay up all day and do more physical act then required or prescribed. At 4 weeks everything was gone, doing some unwanted things when i was not being supervised. My grandfather had quadruple bypass and said that I put in awe at my progress.

I didnt know about my problems until a week before my surgery. That is alot to take in about your life and future in 7 days. It felt like I was in a vortex and just kept getting pulled all around. I couldnt hardly even think. My mind was racing out of control and my world felt like it was on the bumper following my mind to never never land. Lots of talking with God and I talked to my Pastor (happens to be my mentor) alot.

My cariologist said that it didnt just pop up a month before and has no idea how it went 24 years unnoticed. I was born with a underdeveloped epiglottis and was in and out of Texas childrens and Pediatricians due to pneumonia until about age 4. At 17 I had shoulder surgery and at 22 went to the emergency room with severe chest pains deemed a panic attack or really bad fluid regurgitation due to my bad epiglottis. I think someone should have seen that I had a problem and it needed attention. So Dr's when we were small didnt have the sense of urgency nore information available they do now. I hope more kids dont just have somehting like this pop up when they are 24 or 26.

 

[Old clicker]

Your'e story sounds a lot like mine. Except that I didn't find out about the bicuspid valve untill i was 48, and I am not into body building. Looks like the only thing the same is the aortic valve. Just to let you know it might take 6 or 8 months, but you should be able to go back to you're body building same as before.

 

[Karlynn]

Welcome to our family. We have all ages here, so you'll fit right in. Not knowing your specifics, has any Dr. mentioned the Ross Procedure for you? It's where they replace your Aortic valve with your own Pulmonary valve and then put a tissue valve in the Pulmonary spot. To be very simple, they believe that since the Pulmonary valve isn't the hardest working valve in the bunch , a tissue valve there might last indefinately and with your own valve inthe Aortic position they are banking on a long timeline for it. Mara is one of our younger members who has had this procedure. I haven't seen her on in a while, but maybe she'll get the vibes and pop in.

I'm also sure more knowledgable members will be along to fill in the huge blanks I left.

The best news is that you should be fixed up good as new, no matter which route you choose.

 

[hensylee]

Welcome, Carista - we have lots who are so very young. We are glad you came to the site because there is a lot of information here for you. More from actual patients (members) than a dr can tell you. Experiences are shared here that you can't find elsewhere.

Our ILoveNY (Nicole) and Brad are two very young ones who have gone through all of this. They were teens when they had VR. You can search them out in the members list, if you want.

You will get many answers to all your questions. Hang with VR.

 

[Marguerite53]

Welcome!

Welcome!

Hello Christa! Welcome to a great place. I'm twice your age, have known about my bicuspid since I was your age and recently was told I had developed moderate aortic stenosis and AVR could be within 1 to 3 years (about 30 years sooner than they anticipated). If you are already at severe, I suspect they will want to intervene sooner than later. I see you are in Minnesota. If you are near Rochester at all, you could get to the Mayo Clinic for a second opinion. Do not hesitate to garner a second opinion -- they can be very important.

Good luck. Start new threads with new questions anytime you feel the need. There is so much experience here.

Marguerite

 

[bvdr]

Hi, and welcome to this on-line family. It may take a little while to get used to manuevering around this site but once you have it mastered there is a wealth of information to be had. Our resource forum is great, (thanks, Ross!), and the answers to many of your questions will be found there. We have well over a thousand members and the combined knowledge, experience, and history forms a very deep well from which information can be drawn.

This is a tough time for you as you adjust to this unwelcome news but we are here to help you wherever possible.

I echo what has already been said about early intervention being preferable to waiting until symptoms are severe and permament damage has been done.

 

[carista]

Thank you so much for all of your feedback!

I was thinking about getting a second opinion and I probably will, I just wanted a little break between doctor visits. I was actually relieved when the surgeon said to wait 6 months and get it checked again because I'm just so nervous about the whole situation. But I do know the sooner I get it done the better I will feel. Really my main side affect is fatigue. I'm so tired all the time it seems and its very frustrating.

I was actually thinking about trying pilates, maybe i'll do that. I have anxiety which I usually have under control until I get really stressed. So I've been having problems with that lately and I heard pilates might help with that also. I'm not much of a drug person, so if I can avoid taking them I will.

My doctor never mentioned the Ross Procedure, but I did come across it on the internet. I think I'll start researching more and get a second opinion as well.

Thank you all for the input and advice. I feel better already!

 

[inlaguna]

Hello Carista,

I am coming off my AVR and I was pretty active during my childhood and early adulthood even though I knew of the bicuspid valve. The doctors watched the size and pressure gradients and advised me what they thought I could and could not do. While I never did any body building, I did lift and do aerobic exercises quite a bit before surgery. I was exercising up to a week before surgery and started back again up about 8 days after ( walking etc).

I would definitely get a second opinion and do some research on what are the key things to look at. Is your stenosis, moderate, severe, critical? What are your mean and peak pressure gradients etc.......Also take a look a the hospitals you would consider and the surgeon you would choose. All these things are very important and will help you figure out what is best for you.

Welcome

Dan

 

[carista]

Hello Carista,

I am coming off my AVR and I was pretty active during my childhood and early adulthood even though I knew of the bicuspid valve. The doctors watched the size and pressure gradients and advised me what they thought I could and could not do. While I never did any body building, I did lift and do aerobic exercises quite a bit before surgery. I was exercising up to a week before surgery and started back again up about 8 days after ( walking etc).

I would definitely get a second opinion and do some research on what are the key things to look at. Is your stenosis, moderate, severe, critical? What are your mean and peak pressure gradients etc.......Also take a look a the hospitals you would consider and the surgeon you would choose. All these things are very important and will help you figure out what is best for you.

Welcome

Dan

They told me my stenosis is just under severe. I have no idea about the mean and peak pressure gradients. I think I would be wise to go to see someone again, when I was first being told about all this all I heard was...no more bodybuilding, very light cardio, and that i'd have to have surgery soon. This was enough for me to take in. I mean I listened to everything being said but I didn't ask a whole lot of questions.

I did talk to a surgeon that my cardiologist said he would go to if he had to have heart surgery and he pretty much said the same things my cardiologist told me. I 'm going to do some more poking around but I checked into him a bit I think I would like him to perform my surgery. I'm pretty sure I want to go to Abbott Northwestern in Minneapolis to have the surgery, they perform a lot of valve replacement surgeries and are one of the top hospitals in the US. But I think I should get a second opinion on when to have the surgery. I wasn't going to, but after reading some other posts I think I probably should.

I'm very worried about not being able to bodybuild. I'm not a huge buff chick or anything but I've gotten pretty strong and I enjoy it a lot. Especially benching which I really enjoy, and that's one of the things my doctor said especially to not do anymore. Oh well, life goes on.

 

[bvdr]

Carista,

I think you may want to start your own personal medical file. Many of us here have found it to be extremely helpful. You are entitled to have copies of all your tests and other pertinent medical results. On your echo report you will most likely find out about your gradients. Most of it won't make a lot of sense now but little by little it will as you become more informed about your condition.

 

[Guest]

Our ILoveNY (Nicole) and Brad are two very young ones who have gone through all of this. They were teens when they had VR.

*eyes our beloved hensylee*

What am I, chopped liver? LOL! Just kidding, you, of course... .

I'm a youngin' too...sorta.

Or not.

I'm 31 and have had 3 valve replacement surgeries...at ages 4, 14 and 29...and so far, so good.

Carista, welcome to VR.com. You have received some great info/advice thus far and I'm sure you will receive more .


Cort, "Mr MC" / "Mr Road Trip", 31swm/pig valve/pacemaker
'72,6,9/'81,7.hobbies.chdQB = http://www.chevyasylum.com/cort/
MC Guide = http://www.chevyasylum.com/mcspotter/main.html
To buy Dodge Charger or to buy Ford Mustang...THAT is the Q
What's it like to buy your favorite car brand new? Wish I knew...

 

[hensylee]

Cort - slap me with Rain's wet noodles. But I don't recall knowing you were 14!!!!! (and 4!!!) I must've known it, tho, because I have read nearly all your posts. Sorry - you go into the memory banks (again). Chopped liver? Not in a million!

 

[Guest]

Cort - slap me with Rain's wet noodles.

LOL! Hecka no! I would never slap you!

But I don't recall knowing you were 14!!!!! (and 4!!!) I must've known it, tho, because I have read nearly all your posts. Sorry - you go into the memory banks (again).

My dearest hensylee...no worries . No need to apologize. I hope you know I was just kidding with you....I couldn't resist a little fun .

Chopped liver? Not in a million!

*grins*

Awesome ... Thank you!!!

 

[Mike S]

Hey Carista!

I to am new on this forum. I joined a day ago and have found it very helpfull.
I am 30 years old and had a mechanical aortic valve installed on Feb. 14, 2005. (St Judes) I first had open heart surgery when I was 5 years old to repair my aortic valve and to close a hole between my left and right ventricle.
For the last 25 years I have gone yearly for tests and more tests to monitor that repair. In December I found out that not only my vlave had to be repaired, but also my aortic root (6cm) and part of my ascending aorta (Bentall Procedure). My heart was also regurgitating at 45% and not the usual 55%-70%. Needless to say I was very concerned about all that had to be done, and a little upset that so much had to be done since I was constantly monitored. Did the doctors wait to long to replace the valve????

Anyhow to make a long story short, I had all of that done 6 weeks ago and feel great. I was in hospital for 5 days, and found only the first day to be rather difficult. I have truly found out that the anxiety leading up to the surgery is much, much worse than the actual experience.

My advice is don't wait to long to have surgery done, and try put the thought of having surgery out of your head. If surgery is 6 months away let it be 6 months away and don't re enact it in your mind every day before.

Welcome and keep us informed.

Mike S

 

[ALCapshaw2]

Welcome to our world Carista!

The first thing I would recommend is to get copies of ALL your test reports, especially the ECHO-cardiograms. There you should find your effective valve areas, pressure gradients, and chamber dimensions.

IF your chambers show signs of enlargement, then having surgery SOONER would be wise to prevent further enlargement and possible permanent heart muscle damage.

IF you are interested in the ROSS Procedure, then you will want to search out a surgeon who specializes in that procedure. Generally speaking, the more procedures of the specific type you desire that a surgeon and his team perform, the better the outcome. Survival rates for young first time patients is over 99% when performed by skilled and experienced teams.

You should also know that the MAYO Clinic is the #2 rated Heart Hospital on the US News Hospital rating list for Heart procedures.

Do your homework and then decide what/who/where in regard to your surgery.

Best wishes,

'AL Capshaw'

 

[Dirk]

Carista,

I have also aortic stenosis and I am getting surgery soon.

The most critical thing with aortic stenosis is the timing of the surgery. There are numerous publications on specialists on that topic and the recommendations are so far:

Surgery should be made very soon if symptoms occur. These symptoms are syncope, angina pectoris or being out of breath. The problem is that these symptoms start very imperceptibly and the body gets adjusted to them.
Also it is recommended to get a stress electrocardiogram, if this is abnormal concerning pulse or blood pressure or the workload you can deliver, surgery should also be done very soon. However, some cardiologists do not want to recommend a stress test because they think that the risk is too high.
So if your heart size is still normal and the pumping function is o.k., and you do not have symptoms, you should wait with the surgery.

However it gets more complicated if you have additional aortic insufficiency.

You may want to read the recommendations oft the American College of Cardiologists:

http://www.acc.org/clinical/guidelines/valvular/dirIndex.htm

There are very good recommendations for the different conditions when surgery should be performed.

Greetings

Dirk

 

[carista]

Welcome to our world Carista!

The first thing I would recommend is to get copies of ALL your test reports, especially the ECHO-cardiograms. There you should find your effective valve areas, pressure gradients, and chamber dimensions.

IF your chambers show signs of enlargement, then having surgery SOONER would be wise to prevent further enlargement and possible permanent heart muscle damage.

IF you are interested in the ROSS Procedure, then you will want to search out a surgeon who specializes in that procedure. Generally speaking, the more procedures of the specific type you desire that a surgeon and his team perform, the better the outcome. Survival rates for young first time patients is over 99% when performed by skilled and experienced teams.

You should also know that the MAYO Clinic is the #2 rated Heart Hospital on the US News Hospital rating list for Heart procedures.

Do your homework and then decide what/who/where in regard to your surgery.

Best wishes,

'AL Capshaw'

Thanks for the advice...and yes I knew the Mayo Clinic is supposed to be one of the best hospitals, and I haven't completely decided against Mayo yet. I do think I will have my second opinion there. Maybe that will help me decide between Abbott and Mayo. Which by the way, did you look that up for me? If so, thank you very very much. And trust me, I am a research-aholic so I will definately do my homework.

Also, I am very nervous and scared about having the surgery but that is NOT a factor in my deciding when to have it. I will listen to what the doctors tell me. If they tell me to have it tomorrow, I'll have it tomorrow. If they tell me to wait, I'll wait. My cardiologist said he thought I should wait at least 3 months and check it again and my surgeon said to wait 6 months and check again. I'm calling tomorrow to set up an appt for a second opinion and then I'll go from there. I had an MRI done and they did tell me that nothing else in my heart was damaged, which I was very nervous about when waiting for the results so that was a relief.

And in reply Mike S's comments - I'm happy it went very well for you, and I thank you for telling me about it. I had a feeling the anxiety is the worst part, and everytime I hear that it helps me to believe it more
By the way, that is EXACTLY what I just know I will want to do in the days leading up to the surgery - re enact it over and over in my head. I already have a couple of times but I've learned now to knock it off