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[carista]

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

Thank you! You know, I just have to let everyone know, when I found this website...no lie, I almost started crying I was so happy to be able to talk to other people with the same thing. And the more people that reply and seem so generous and eager to help everyone out makes me want to almost start crying again. YOU GUYS ARE SO AWESOME and I only hope I can return the favor when I have enough knowledge to help you all out.

 

[Ross]

Thank you! You know, I just have to let everyone know, when I found this website...no lie, I almost started crying I was so happy to be able to talk to other people with the same thing. And the more people that reply and seem so generous and eager to help everyone out makes me want to almost start crying again. YOU GUYS ARE SO AWESOME and I only hope I can return the favor when I have enough knowledge to help you all out.

And that is all we ask of you too! Once you get the help you need, please come back and share what you've learned with the next person who comes in scared out of their minds!

 

[tobagotwo]

Nice to have both of you join the site.

Carista: If you have any symptoms, the AHA guidelines discourage the use of stress echoes before surgery. I am a big non-fan of the concept anyway.

Betty (BVDR) evoked a salient point. You should ask your doctors for copies of all of your heart-related files and test results for comparisons and history. They are required by law (HIPAA) to supply it to you, although they may charge you a small fee for the copying. It is important to know where you've been, when things started happening, what's been done, and how your earlier tests compare with your later ones. To some extent, your heart issues will remain with you throughout your life, and I can almost guarantee there will come a day when you'll be incredibly grateful that Betty suggested this.

Mike S:The aortic root and expansion of the ascending aorta develop independent of the valve issue itself, although they are probably generated from the same BAV syndrome.

So you don't need to be mad at your doctors yet. Their waiting didn't cause or allow this to happen. In some ways, it's better it worked out like this, because it's all getting done at once. You wouldn't want to have to go back in for surgery on your aorta a year or two after having surgery for the valve. Some folks here have done that.

While it's a longer procedure, the replacement of portions of the aorta with the valve is not that uncommon within the replaced-valve community. The procedures for it are well-known and fairly routine. Not routine for the one who has to have it done, of course - but fairly routine for the surgeons.

You, too, should take heed of Betty's advice about your records.

Best wishes,

 

[carista]

Just wanted to mention that I have set up an appt for a second opinion at the Mayo Clinic in May. I also will be getting copies of all of my records (thanks for the advice).

I'm curious if anyone knows...is there a way and/or what is the easiest way (other than to ask the surgeon themselves) to find out how many valve replacement surgeries they have performed?

Thank You!

 

[Ross]

Check with the hospital that the surgeon is priviledged at. There are some sources, but you have to pay a fee and really find out nothing more then if you'd just asked to start with. Might as well save some money there.

 

[gadgetman]

Thank you! You know, I just have to let everyone know, when I found this website...no lie, I almost started crying I was so happy to be able to talk to other people with the same thing. And the more people that reply and seem so generous and eager to help everyone out makes me want to almost start crying again. YOU GUYS ARE SO AWESOME and I only hope I can return the favor when I have enough knowledge to help you all out.

Carista,

Welcome aboard and into our family. I was crying "why me" before I found this site. After I was guided here, I found out there are other folks out there, many with far worse trials than I was facing. There are a lot of survivors here and many soon to be survivors. You will find the next few months being here that you will cry, laugh, be surprised, and maybe even disagree with what you read, but just remember we are here as your extended family and will provide you help, guidance, and even the occasional shoulder whenever you ask.

Dinner table is always open. Darn, I like that (inside joke to newbees--check my posts--or better yet, maybe not) .

May God Bless,

Danny

 

[charlie b]

Hi young lady!

Hi young lady!

Although a lot older than you I had my Aortic valve replace last week, if you will go to KIZZY's thread and look at my note to her I hope it helps you. GOD BLESS charlie b

 

[carista]

Thanks Charlie, I'm glad it went well for you.

Question for anyone...it seems like my biggest side effect right now is fatigue and I can hardly stand it. I'm so tired all the time, it makes me crabby and unmotivated and it seems like everything is so unorganized for me right now. Has anyone else had or have fatigue this bad? and if so what did you do to help with it if anything?

I'm at the point I think where I just want to get the surgery done already and I thought I'd never say that.

Thank you all!

 

[Ross]

Thanks Charlie, I'm glad it went well for you.

Question for anyone...it seems like my biggest side effect right now is fatigue and I can hardly stand it. I'm so tired all the time, it makes me crabby and unmotivated and it seems like everything is so unorganized for me right now. Has anyone else had or have fatigue this bad? and if so what did you do to help with it if anything?

I'm at the point I think where I just want to get the surgery done already and I thought I'd never say that.

Thank you all!

There is very little you can do except get repaired and hope for the best. It's one of the most common complaints.

 

[perkicar]

Just wanted to mention that I have set up an appt for a second opinion at the Mayo Clinic in May. I also will be getting copies of all of my records (thanks for the advice).

I'm curious if anyone knows...is there a way and/or what is the easiest way (other than to ask the surgeon themselves) to find out how many valve replacement surgeries they have performed?

Thank You!

You might look in the mayo clinic website. I know Cleveland Clinic has lots of data in theirs about how many surgerys and what their success rates are. I'm having Aortic Valve replacement (mechanical) there on May 10.
I'm glad you found this website, it's been a great help to me!

 

[Kathleen]

Abbott Northwestern Hospital

Abbott Northwestern Hospital

Let me know if you need info on Abbott. I was released on Sunday. I have had all my surgeries and procedures at Abbott.

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.

 

[Guest]

Question for anyone...it seems like my biggest side effect right now is fatigue and I can hardly stand it. I'm so tired all the time, it makes me crabby and unmotivated and it seems like everything is so unorganized for me right now. Has anyone else had or have fatigue this bad? and if so what did you do to help with it if anything?

Sleep. Sleep. Sleep.

Yeah, I know...not very exciting, but it works .

Or, pick up a hobby/interest that doesn't require a lot ... reading, driving, etc.

*shrugs*

I hated feeling tired/fatigued. Course, I still feel that way sometimes now, when I push myself too far.... I also dislike having to be productive at work, then come home and not do anything because I feel too drained/exhausted from work .

 

[Dirk]

Thanks Charlie, I'm glad it went well for you.

Question for anyone...it seems like my biggest side effect right now is fatigue and I can hardly stand it. I'm so tired all the time, it makes me crabby and unmotivated and it seems like everything is so unorganized for me right now. Has anyone else had or have fatigue this bad? and if so what did you do to help with it if anything?

I'm at the point I think where I just want to get the surgery done already and I thought I'd never say that.

Thank you all!

This could be a symptom of the disease, but not necessarily.

I am experiencing the same, and after having had a discussion with a 35 year old lady with aortic stenosis who also was so tired all times and who felt so much better days after surgery, I believe that my fatigueness is also due the stenosis.

Greetings

Dirk

 

[carista]

Sleep. Sleep. Sleep.

Yeah, I know...not very exciting, but it works .

Or, pick up a hobby/interest that doesn't require a lot ... reading, driving, etc.

*shrugs*

I hated feeling tired/fatigued. Course, I still feel that way sometimes now, when I push myself too far.... I also dislike having to be productive at work, then come home and not do anything because I feel too drained/exhausted from work .

Yeah, I figured there wasn't much I could do about it, but unfortunately I don't get the chance to sleep too often. I get my 8 hours at night at least, but I run a gym and put an awful lot of hours into it and don't have any time for naps which I'm sure would help out a lot.
I know about the feeling too drained from work to do anything once you come home...you should see my house right now ....if anyone came over right now I think I'd die from embarrassment.

 

[geebee]

I know about the feeling too drained from work to do anything once you come home...you should see my house right now ....if anyone came over right now I think I'd die from embarrassment.

The nice thing about getting past surgery is you learn, all over again, what is important and what is not. If you are anything like me (hopefully not too much ), once you recover from surgery, you won't really care too much about things like a mussy house. You will be too busy weightlifting again , "smelling the roses" and all that other happy stuff that kind of falls by the wayside until we are faced with losing it.

I hope you have surgery sooner rather than later so you can get on with such things.

 

[PapaHappyStar]

Hi Carista,

I am 32 and had surgery for severe aortic stenosis in Dec. last year -- I had the Ross Procedure, which transplants the pulmonary valve into the aortic position and replaces the pulmonary with a human donor pulmonary valve. This is a bit more durable than a tissue valve especially in younger people and does not require coumadin for anti-coagulation.

I had issues with excessive fatigue over some years preceding my diagnosis and had a strange problem with a persistant, bright floating curtain in my field of vision. The fatigue is much better now ( 3 months + since surgery ) and the eye problem has also disappeared. I think the effects of severe stenosis that is not yet causing critical symptoms due to serious circulation problems can be subtle and you may not completely realize what you were going through until you get the problem fixed. This is especially true for younger, fitter individuals.

Hope all goes well for you, keep posting updates -- we are all pulling for you.

Burair

 

[Granbonny]

Hi

Hi

Welcome to our family.. I see where you live in Mn....The winter has been so bad this past year. Especially for members living in Boston, New Hampshire ect... I'm sure they will be glad when Spring comes so they can get back outside....Lack of exercise can make one weary We just had a very rainy day here in Georgia..and I feel tired...Not being able to get outside. I,m bringing weather up..because it is so important to be able to get outside after your surgery to Walk, walk,..helps get the nasty meds out of your body.... You will need to stay inside the first week after surgery..but, then try to get outside...It's better to have the surgery in the spring or summer... 8 weeks after surgery..you will be on the way to full recovery. Bonnie

 

[Guest]

Yeah, I figured there wasn't much I could do about it, but unfortunately I don't get the chance to sleep too often. I get my 8 hours at night at least,

*raises eyebrow*

I wish I could get that much...sleep.

*shakes head*

I'm lucky to get 5 hours a night.... It's called way too many interests .

but I run a gym and put an awful lot of hours into it and don't have any time for naps which I'm sure would help out a lot.

They DO! I've been able to take naps in the Wellness Center at work during part of my lunch hours.... That's been nice.....

I know about the feeling too drained from work to do anything once you come home...you should see my house right now ....if anyone came over right now I think I'd die from embarrassment.

Oh? I bet mine is messier than yours...he he eh.

I've come to learn that people don't mind a messy house...they'd much rather visit. I had some friends from NJ here last night and met them for lunch today before they left town...they didn't seem to blink an eye at the house. And, I've found, in my many travels, that people I stay with are like me ... don't mind the house being messy, and that actually puts me at ease in my friends' homes .

 

[carista]

*raises eyebrow*

Oh? I bet mine is messier than yours...he he eh.

I've come to learn that people don't mind a messy house...they'd much rather visit. I had some friends from NJ here last night and met them for lunch today before they left town...they didn't seem to blink an eye at the house. And, I've found, in my many travels, that people I stay with are like me ... don't mind the house being messy, and that actually puts me at ease in my friends' homes .

I think I may have to challenge you on that one...don't know if it's quite possible to have a messier house than mine. But, I get caught up on Sundays so you know...usually by Monday it's a pit again. And you're right most people don't care, but I can't stand it. I've never minded going to someone else's house thats a pit but I just can't stand people coming to mine.

 

[Karlynn]

I think I may have to challenge you on that one...don't know if it's quite possible to have a messier house than mine. But, I get caught up on Sundays so you know...usually by Monday it's a pit again. And you're right most people don't care, but I can't stand it. I've never minded going to someone else's house thats a pit but I just can't stand people coming to mine.

I know exactly what you mean. I am not the worlds best housekeeper. My Mom once gave me a plaque that said "My house is just messy enough to look lived in and comfortable and just clean enough to be healthy."

One of my friend's has a house that Better Homes and Gardens could barge into any time of the day or night and take cover photos for their magazine. She once told me "Karlynn, I feel more comfortable at your house than my own." I haven't worried about a perfect house ever since then.