I'm kind of sad or something...

[Susan BAV]

Hello - I'm relatively new to this forum (some members here refer to ones like me as "newbies" but I don't feel like a newbie because I've always had to deal with this congenital heart defect, for all of my 41 years). My husband and I saw the specialist this week. And since the news wasn't good I'd like to take this opportunity to whine a little here anonymously so maybe I can keep up a brave front with my family and friends. I'm at a place that many of you have been but will you please bear with me? The news is: My prognosis is 2-3 years without surgery. From the research that my husband and I had done, we kind of suspected this but it is a shock to actually hear the doctor say it. My bicuspid needs replaced and the aorta is in an aneurysm stage. I have to get the BP down further and have the PVC's and V-Tach studied first. Surgery within the next few months. Another "stinking" (and itchy) scar. But on the bright side, I am really looking forward to feeling better. That's all. Except that I'm a bit depressed about the whole thing. That's probably obvious. ~Susan

 

[Nancy]

Hi Susan-

You just go right on and whine all you want. This is the place to do that. Hearing that surgery will be necessary sooner rather than later is never something anyone wants to hear.

But you're right, you will be feeling better, physically and also you won't have this problem hanging over your head any more. You've got just enough time to gear up physically and mentally for the surgery. It's a little bit away yet. Everyone here will help to prepare you for your big day, and you know we are all here for you whenever you want to visit, vent, whine or whatever. We understand.

Sending you some hugs for your difficult week.

 

[hensylee]

Hey Susan - we have been waitin for you. You will be one of the family now and I think you will be more comfortable with your situation after a few members come along to welcome you. We are a pretty good bunch and happy you found our home. You just vent all you want and we will listen every single moment of it. Stick around and visit. God bless

 

[bvdr]

Hi Susan,

You're right, you arn't really a newbie and we are real glad you are joining in with us. You are just having to deal with some new issues again thats all. Give yourself a little while to adjust to it and you will probably feel alot better. We are really fortunate that most of our problems can be fixed with meds or surgery. If we had been born even 30 years earlier we wouldn't be thinking about our surgical choices because there wouldn't have been any.

Just think though...in the not too distant future you may be feeling much much better. It's rather like Ann (henslyee) said on another thread today, after seeing much better following catarract surgery, she hadn't realized how much she had been missing. I think we go downhill so gradually sometimes that we don't truly recognize how much we too are missing.

Stick around and we'll get through this thing together. Take care now and make yourself really at home.

 

[Gnusgal]

Hi, Susan. I just wanted to lend my support. And say that I also had Dr. Cooley for my surgeon MANY years ago. He did my first two surgeries as a child (age 5 and 7). I had my valve replaced a little over a year ago by his son-in-law (and the new head of cardiology at Texas Children's) Dr. Charles Frasier. He was wonderful. Where are you planning your valve surgery?

I know what you mean about dealing with this all your life, yet being struck down by it when surgery finally comes up. I had thought, for years, that there was no "corrective" surgery for me. But then in 1997 a doc said it was possible, so I had my ASD and VSD patched. I thought I was "cured" and wouldn't have any more problems for a really long time. However, I slowly slid downhill and ended up needing surgery again a short 5 years later. Who knows when the "next" one might be, or what it will entail (could be transplant), but I figure I ought to enjoy the time I've got and not focus on the fact that I'll never be "cured." If you want to talk to another CHDer, I'm here for you. I undestand what you're going though and I'm willing to offer a shoulder to lean on.

 

[ALCapshaw2]

OK Susan, finish your cry, but then LOOK ON THE BRIGHT SIDE...

Your Doctors have IDENTIFIED the problems
and there IS a solution.

Yes, Heart Surgery IS a BIG DEAL,
but it is a HIGHLY REFINED ART
with Very High SUCCESS rates
(typically 97% or better for first surgeries).

Everyone on this board has either survived their heart surgery or has a friend or family member who has. REMEMBER THAT.

If we can do it, SO CAN YOU !

Keep that thought. A Positive Mental Attitude plays a BIG part in your successful recovery. YOU CAN MAKE IT, just like we did.

Best wishes,

'AL'

 

[Yokena]

Welcome

Welcome

Hi Susan, and welcome to the group. I'm relatively new myself. I guess finding out about the surgery is one of those things we kind of think we're prepared for and then we really aren't. Like someone said, tho, you have some time to get ready which should help.

I'm a fellow adult with congenital heart disease and also have a bicuspid aortic valve. That will be my next surgery, but so far I am not needing it soon - I think. Had surgery 2 years ago (age 46) for Ebstein's Anomaly (tricuspid valve). Anyway, I suggest you check out the site for the Adult Congenital Heart Association, too, at:http://www.achaheart.org.

Best of luck to you!

Joyce in Mississippi

 

[alicia]

Hello Susan and welcome! We are all here for you at this time in your life. Like Al and others have said, we have been there and we can be compasionate and give you advise or tips along the way. I never thought I would end up with so many heart problems from taking Redux 6 years ago for only taking the drug for 2 months but I was determined to loose weight and I thought or was lead to believe it was safe. Boy was I wrong! Well 2 open heart surgeries later and cardiomyopathy,heart failure,etc. etc. Im still here and kicking girlfriend and so will you. Please know that we will be here for you anytime. Best of luck to a fellow heart
patient. Stay strong, but feel free to whine anytime. God knows I do LOL......

Alicia

 

[McCln]

Welcome Susan

Welcome Susan

Welcome to the greatest place for information and place to whine. I am one of the ones also with congential heart problem. I was born with a heart murmur, repair at age eight and aortic valve replaced at age 36. I am still here and kicking. You will fell better once the surgery comes and goes. I also now have diabetes, which had its own set of problems. But I am feeling better and have lost 50 ponds since May. Just take your time and get educated before surgery, it makes the future better in knowing possibly of what to expect. You have friends to talk to here. And we can refer you to information also. Welcome and be good.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve

 

[sylviayasgur]

hi susan!
i must be reading something wrong in your post, but on one line it says no surgery for 2-3 years and later it says surgery within the next few months.
is it that as they look into your pvc's, etc. and condition right now they may change their minds and suggest surgery b e done sooner than later?

this is a wonderful and supportive place. please feel free to bring your troubles here_ we all do.
the initial shock of imminent surgery is a big one. all here can certainly relate.
i'm sorry you have to go through this, but you will see how much better you will feel after the surgery.

sometimes i wonder what is worse/better...... going into surgery for the first time (ignorance is bliss) or knowing what to expect the second/third time going into surgery. is it better not knowing what is coming or is it better knowing?

either way, i wish you all the best. please let us know what happens.
be well, sylvia

 

[Georgia]

Welcome, Susan

Welcome, Susan

Glad you joined us - we have a very nice waiting room that's been seriously depopulated in the last few months and that makes Steve nervous, so he'll be happy to have you there.

Congrats for finding us prior to surgery; I could have used such a wonderful supportive and knowledgeable group. Please whine away (as they say, we have the cheese). And read everything on old posts, etc.

Some of the stuff may make you more leery of surgery; but keep going. Since surgery's a given in your case, I think that you'll find that familiarity breeds confidence where your condition and surgery are concerned.

Welcome again.

 

[EVELYN]

Hi Susan

Welcome here......you have every right to feel down and vent on this forum.....it's a wonderful place!!!

However, this group is not going to let you feel down for very long. You certainly know that your surgery is soon and that there's alot more good years post op......keep that in your mind and you'll get through it with the help of everyone on this list.

Evelyn

 

[Susan BAV]

Thank you everyone; thank you so much for your kind comfort. I'm already feeling a bit better than when I started this thread; I really felt the need to express my feelings when I wrote what I did a few days ago. And, Sylvia, I probably didn't write that line out clearly; I was a bit emotional. What the doctor said was that I would not survive another 2-3 years without surgery. That was the big shock. Thank you again, everyone. I know most of you have been here, or love someone who has been here, and it really does help (me anyway) to know that you can understand. I reread this and it sounds a bit whiney so I apologize again for that. The best of wishes to you all, ~Susan

 

[Nancy]

Hi Susan-

Nothing sounds whiney to us here. We all know how hearing something like that can impact a person. Once you get over the initial shock, then you can start to plan for your future, which looks bright, because you can be fixed.

Just take it one day at a time and try to hop over the surgery part for now, and start concentrating on how wonderful it will feel to have this problem gone, and to be feeling better. Picture yourself in the recovery phase, and try to start planning for that aspect of your life. Let your cardiologist and surgeon do the worrying about the surgery from now on, that's his/her job.

Best wishes.

 

[Ross]

Susan you can never out whine me! I am the Executive Chief Whiner here. (As well as part of the comic relief committee)

The whole purpose of this web site is to help people with all aspects of surgery and support. That includes the feeling of a ton of bricks smacking you square in the head. I think most all of us have felt that at least once and some, a couple of times.

We need to get you fixed up. We have the technology. We can rebuild you, make you faster, stronger, and.........Oh wait a minute, that's the 6 million dollar Woman. Hey, the bright side is that you can be fixed. Don't even think about what could happen 2 or 3 years from now.

 

[Karlynn]

Dear Susan,
Like you, I'm new to this list. (Found it today and just can't get enough. Like a woman lost for years in the desert with only a small canteen of water, suddenly finding herself at a beautiful oasis.)

Whine away. You are in good company. I'm so glad you have heard you have options. Be hopeful and positive and if you are having a hard time with doing that, why we will be hopeful and positive for you.

God Bless,
Karlynn

 

[Jane]

You're in very good company

You're in very good company

I also remember well how desperate and alone I felt until I found this site by chance. ( All the lovely people here "held my hand" in a cyber sort of way, with support and advice, until I had the surgery and were there for me every step of the way through a couple of set backs afterwards. (I too had a bicuspid aortic valve which became stenotic.) When my surgery arrived, I felt I knew exactly what to expect, from what I had read here, and this gave me a lot of confidence.

I continue to stay around this site, now that I am over my surgery, because I have come to regard the people here as very dear friends, and because their positive outlook, even when times are hard for them, is a constant inspiration to me.

Stay with us. This is a good place to be.