New Here

[RayinSF]

Hello everyone,


Well I have been lurking around here for a few weeks now, so I figured its about time to introduce myself. My name is Ray, and I am 35 yrs. young and live in San Francisco Ca.

About 10 yrs ago I was diagnoised with Aoritc Stenosis. For the first 7 yrs there was very little change in my condition, and it seemed that surgery was years and years away, if at all. Over the last 3 yrs the condition has progressed to the point of needing valve replacement surgery. I am very active, {snowboarding, mountainbiking etc..} and have had absolutely no signs of valve problems, other than the echos of course. My cardio and surgeon both agree that it is time for surgery, and it appears that I'll be going under the blade around July 1st, so I have plenty of time to prepare myself. {Although I can see why people say the waiting is the hardest part!} Anyways... I'm sure that over the next few months I'll have a TON of questions for all of you, so forgive me now if I become a pain in the ass! I cant even begin to tell you how happy I was to find this site, as it is nice to know there are plenty of other people who have undergone this procedure. Well, I guess that all for now. Thanks for letting me babble on here, and I hope I get to know some of you!
~Ray

P.S.~ After I posted this I realized that it was posted in the valve selection forum!

 

[Nancy]

Hi Ray-

Welcome to the site. You've come to the right place for support and information. Just pop in any time. This is a very active site, and there's always people who will try to help you with answers.

 

[bethanne]

Hi Ray,
Your story is not unusual. Many have posted they have been asymptomatic while leading very active lives. The good news is they, the active ones, seem to rebound from surgery very quickly.
Sounds like you have attentive doctors who know the value of having your valve replace before your heart shows signs of damage.

What helps me from panicking over it all is realizing that I have much to be grateful for... Having something that can be fixed.

I am fairly new and waiting on a surgery date myself. Everyone here has been encouraging and been willing to share valueable information. I have learned alot.

Glad you found your way here and jumped in with both feet ...

P.S. Don't worry. The vr.com fairy will be by to make any adjustment to your post. They'll get you to the right forum
I've had a few minor adjustments mysel LOL.

 

[LoriSue]

Hi Ray and welcome!

Bethanne has got a point. It seems those who go through the surgery that were only slightly symptomatic beforehand seem to do very well during the recovery process. My mom had her aortic valve replaced Feb 2003 and really didn't have much in the way of symptoms beforehand. She did exceptionally well after surgery. She was back at work in 6 weeks, was a little tired but I would say that is pretty good for having your chest cut open. Within 4 months she called me one Sunday to tell me she went on a hike in the mountains with some friends. I asked her how she did and she told me that there were some people that couldn't keep up with her. I was thinking to myself that she must have only hiked a mile or so but when I asked her she proudly informed me that she hiked 5 miles..........and then she added "one way". Now, I think that is a little excessive for 4 months post op but I guess she is an adult ( 60 years old) and I would like to think she would have enough common sense to stop if she felt she needed to. So I guess my point is that even though everyone is different, I think you will find that it is better to have the surgery while you are still strong as opposed to trying to recuperate after your condition has degenrated to the point where your overall stamina and muscle tone has weakened. These are just some thoughts I had....others can probably give you better first hand knowledge.
Again, Welcome!

Lori

 

[ccrawford]

Hi Ray - Welcome to the site. You are encouraged to read as much of the current and past posts as possible and certainly to ask as many questions as you need. Some of us were nervous about some aspects of surgery and the question/answer dialogue can sure help. The individuals here are an invaluable source of information because they have all been there and done that and truly know more about some aspects of the process than the physicians do. Keep an eye on those symptoms and if you note anything changing pretty rapidly, DO NOT be bashful about contacting your doc. I went for many years with minor symtoms and then saw some big changes in only a couple of months.

 

[Tom F.]

Welcome. Please post whenever you wish. I learned about this site just before my surgery, learned a lot, then joined actually right after. This site contains an amazing group of people that just wan to help others, like you, through their open heart surgery. Ask anything you wish !

 

[SJJ]

Hi Ray,
Welcome to what may come to seem like your "home away from home" over the next several weeks/months while you await and then recover from your surgery. You'll find many knowledgable people here willing to share their expertise and experience and more than enough caring and compassion to support you through the whole process. I just had my aortic valve replaced with a St. Jude two weeks ago yesterday and am doing just fine! I'm amazed at how well I feel and am sleeping pretty well in bed, on my side as of 3 nights ago. Kept going in and out of afib for about a week (every 3-4 hours and lasting 3-4 hours on average) but I haven't had an episode for over two days now so I'm feeling more reassured they're the transient, rather than chronic type. One of the most useful things I learned by reading almost all of the past posts in the weeks preceding my surgery was that complications, of whatever kind, are not that unusual and most important, can almost certainly be resolved. I made sure my family understood that as well so they could be prepared. I credit this site as being the most important and influential guide through this whole process and urge you to participate as much as you'd like. Keep us posted on your thoughts, concerns, questions, etc as we're more than happy to be of assistance.
Sue

 

[RayinSF]

Thank you all for your greetings and kind words! This site has made dealing w/ this so much easier!

I talked with my surgeon today {Dr. Scot Merrick} and he agreeed that a tissue valve is best for me. Looks like I'll be getting a homograft. This was quite a relief. So I guess now, there is nothing left to do until June, except prepare myself. I have to agree with another poster that said they were very excited to finally get a date. I already feel like a big weight has been lifted of my shoulders. Anyways, thanks again for welcoming me, and I look foward to talking with you all!

~Ray

Aortic Stenosis
D-Day is July 1st. 2004

 

[Marge]

<< I talked with my surgeon today {Dr. Scot Merrick} >>

Hey, Ray, you have got a good 'un there!!! Merrick is, by all accounts, topnotch. (Homograft is his specialty.)

One of the things I found very reassuring about my own surgeon is that he had trained to do valve surgery at UCSF with Merrick.

Stick around -- a lot of us have been through the dreaded waiting period & we'll try to help as much as we can.

 

[sylviayasgur]

hi ray!
welcome! glad to see you have a date and have chosen a surgeon and a valve... now, just try and keep yourself very busy. most folks here have found the waiting to be the hardest part.
atleast you have an end in sight...

my husband, joey's symptoms progressed very rapidly over the last year prior to his surgery. he went from feeling fine to not being able to make it upstairs to our bedroom without stopping to catch his breath!!
now, 2 1/2 years post surgery, he is doing very well.

in the meantime, please keep coming back... if you have questions, ask away... we'll keep you (and some others) company while you await your big day.
be well, sylvia

 

[bvdr]

Welcome Ray,

I was one who found waiting to be extremely hard but somehow here I am now over 6 months post-op! Before long, you may well be looking backwards and saying the same...."the wait is the hardest".

I paid my bills ahead and stocked deeper in my pantry and did some things ahead of time to make things easier later. I think it all helped and let me concentrate just on healing when I got home.

This site is very special to many of us. It is a place where you can ask questions and get answers from people who truly do know what you are talking about. Vent here when you need to and come back often.

 

[epstns]

Hi, Ray, and welcome to The Waiting Room!

There are lots of us out here who know we're in line for valve surgery in the future. Some, like yourself, already have their dates. Others (like me) only know that there WILL be valve replacement in their futures. Bottom line -- there are many on this board who have had the exact same concerns that you are dealing with, and they are not a bit bashful about telling you the truth from their own experiences. Tremendous value in that, as the collective experience here is greater than the secondhand knowledge gathered by most doctors over a whole career.

I'm a bit older than you -- 56 now, but pretty active. I run about 20 miles a week and work out 4 or 5 days a week with light weights. I have aortic stenosis, diagnosed about 18 months ago as moderate. We don't know how long it has been an issue, but the only symptom I have is slightly reduced energy levels late in the day and slightly reduced exercise tolerance (slowed from 7:30 miles to 9:00 miles over the past 5 years). My internist attributed both to aging, and just said "deal with it." A visit to another doc for another reason brought up the question of "How long have you had that heart murmur?" He sternly advised me to have it evaluated, and the rest is an evolving history.

Welcome to the wait. Ask all the questions you can think of, and we'll try to think of those you missed!

 

[Marvin]

Ray

Just wanted to say welcome to the site also. Marvin didn't really have to many symptoms until right before he was told it was time to have the surgery. In Dec 2003 he started to get alittle tired each day around 11:30am and he started getting just a little short of breath climbing stairs. We had known about the valve for the past 3yrs and they keep watching it. But when the symptoms hit then we knew it was close. Marvin was lucky in the fact that he had his heart cath done around jan 20 and they said we need to get it done within the next month, well we didnt have long to wait the surgeon got us in Feb 6. Marvin is glad to have the surgery behind him and be on the road to recovery now. He will be starting his rehab on Monday.

 

[Debrinha GT]

welcome

welcome

Hi Ray, this site has been a blessing to everybody whose lives have changed drastically due to heart trouble. I turned 39 just the other day and I have been having these operations since I was ten because of rheumatic fever and to tell you the truth I'm so tired of having to go through this over and over again. I do hope this will be my fourth and last time though. Well, one thing I can tell you for sure: I don't think I'd be coping with it emotionally if I hadn't found out about this site because the average person isn't really willing to listen to you all the time and even the ones who do, well, what can they do or say apart from the words we usually want to hear? You'll see that here you'll find people who will only tell you the truth based on what they know or have been through no matter how painfull it may be. Everybody is very caring and eager to help but nobody omits information just to spare each other from fear. So, feel free to ask anything that might be bothering you without hesitating but one thing is for sure: we all have to be prepared to hear the honest answers however, bear in mind that what applies to others, doesn't necessarily have to apply to you. I hope you'll enjoy sharing your experiences with us and I hope you'll find this forum discussion useful. Good luck and welcome to the site! Débora