I'm a scared newbie

[maxximom]

Hi all..I just found out on Thursday that I have to have a aortic valve replacement. I am going for a Cath on Friday. I live in Raleigh NC and will be going to Duke for the Cath and probably there for the surgery.I have been on the computer non stop since Thursday..trying to educate myself. I am very computer illiterate..but can research fairly well. I must say this is all a shock for me. I have known for 10 years that I have had a "trivial" valve problem..and was told just to have an echo every year and that no problems were anticipated..DUH!! My husband and I moved down here to NC 21/2 years ago and about 20 months ago I noyiced I was getting out of breath when I walked and that I was also getting facila pain. I had a Echo and stress test at that time and was told that I had some moderate aortic valve stenosis..and that I was very de-contitioned and needed to excersise and lose weight (what else is new) I gradually was getting worse and I went into a excersise program ..the Doctor was thrilled..I was not. I just kept getting more out of breath when I walked and also started having some mild chest pain as well as the facial pain.I had not had a echo in 14months and the doctor said he would do one at the end of Aug..it was Feb at the time..so I have dragged along getting worse all the time. So last week I decided to see another doctor..they did and Echo and I received the bad news that my stenosis was now severe and that surgery was the only option. I am trying to stay calm and get informed but frankly I am scared out of my mind. I am 70 years old and a type 2 diabetic.om oral meds. I am also very overweight..so all and all..I don't imagine that I'm the greatest candidate for this surgery. I have read that it is important to ask a lot of questions..but what are the RIGHT questions to ask? I know what type of valve I would like(homogrft of tissue) if I have a choice..the Coumidin and clicking would drive me nuts with a mechanical valve..and I would prefer a minnimally invasive proceedure (but I don't think that is a option from what I have read. The surgeon here at Duke Dr. Glower does the procedure..so I will have to wait and see what he says when we meet. The first thing of course is to get through the Cath and make sure that there aaare no blockages. Any advise or help would be very much appreciated. I've been thinking of vgetting another opinion (maybe Cleveland) My kids think that my case is pretty cut and dry and that Duke is a top place..I'm not sure if I need to get another opinion or not. Sorry this is so long..I just had so much to say. Sorry for any misspellings..but if I go bacck to check..I'll never post this.
Thanks again
Joan Seide

 

[BillC]

Welcome Joan

Welcome Joan

Hi Joan ... and welcome to our group. Most of us in this group have been exactly where you are right now.... trying to get over the shock of it all and figure out what to do next. I'll tell you one thing... this part-- the waiting, is the hardest part. Once you get this all done and behind you, it's a breeze.... you'll feel so much better.

A couple of people in our group, Martha.. and Dan O'Brien, both had their surgeries at Duke. It's a top-notch heart facility (I believe it's rated # 5 by US News and World Report). Martha is from Durham and I believe she also used Dr. Glower. I'm sure you'll be hearing from these guys after they've seen your posting.

Since you've chosen your hospital and most importantly, your surgeon... now you need to focus on valve-type. That's perhaps the hardest decision of all. Look thru the current thread on valve-type... there's tons of great info in there.

Please don't hesitate to ask any questions you have. We'll be happy to share any information we have with you.

Take care .. and again, welcome to the group.

 

[Kevin M]

Joan, of course you are nervous and perhaps afraid. You are facing major surgery and this it is perfectly natural to feel this way. I had my share of moments too and I'm not embarrassed to say that sometimes the waiting for surgery and the fear got me to thinking the worst.

Even though it's difficult sometimes, it is really important to try to keep a positive attitude right now. This is one the key things that you can do to make your recovery after surgery fast and safe.

Regarding what questions to ask, I would suggest you already know most of them. Go with your instinct. The most important decision is the choice of valve and it sounds like you've already thought this through.

From what Bill C says, it sounds like Duke is up there in terms of reputation. Personally, I think many of us tend to do that "grass is always greener" thing instead of appreciating what is near to us. If you've got the number 5 cardiac hospital in the country nearby - I wouldn't bother messing around with Cleveland or others. Travelling around is not something you want to mess around with unless it's necessary.

A lot of people like to get second opinions. I know if I'm comfortable with a doctor, that's good enough for me. You can have the best surgeon in the world operating on you, but if you cannot communicate properly with him or her, it does not instill confidence.

It's hard not to worry, but make sure to let yourself think of the good things that this operation will bring you also. Symptoms are not fun, particularly when you are dealing with other health factors. The procedure can change your quality of life substantially for the better - don't forget to think about that too!

Take care and feel free to email me if you have any questions or if you just want to talk: [email protected]

Kev

 

[martha]

Hi Joan,

Glad to see your post. More will come along shortly I'm sure. It was also good to talk to you. I'm here for you, in any way you need. Looking forward to hearing how your cath went. If you need to before hand give me a call.

 

[Gillian (in UK)]

Hello Joan. I am 67 and had my aortic valve replaced on 13 March this year. Its wonderful to have it behind me because, I can tell you (like everyone else), what you are going through now was for me the worst part. All the worry and anxiety and imagination running riot.

You will get wonderful support from the people here, and it sounds like you have good facilities not too far from you. We're all here gunning for you.

 

[Zazzy]

Joan,
Good luck with your cath and your surgery and welcome to our little group.

Duke is a good hospital... you are in good hands.

The cath is nothing to be afraid of..... just a few minutes and you're all done.

You children are probably more worried than you think..... just trying to be brave for their mom.

Take care and please keep us posted.

Zazzy

 

[hensylee]

Hi Joan - glad to have you amongst us. You are right now facing the worst part of the procedure and this is when you need the members in this site because we just hang in with you, give you our experiences (tho mine was quad bypass, not valve replacement) and just walk along with you til you are a "ticker" like the rest of the bunch (except Billy and me).

Duke has an excellent reputation and maybe a good idea to stick around your home place. I went to Pensacola, it's small comparatively, but has wonderful cardiac unit, isn't too far from home and all went very well. God bless

 

[steve c]

Hi Joan!

I'm new here too and these people are GREAT!

Last Thursday was my day as well to receive the "you need an new aortic valve" news. I was always on the alert that this would happen "someday". Well, it's here and now we face it. I have alot of motivation going for me: two beatiful daughters (Catherine, age 19-months; and Elizabeth, age 11 weeks) as well as the fact that my father faced numerous surgeries (unrelated to mine) in his life and always looked them straight in the eye and beat 'em!

So here we go! All the best to you! Take Care!

Steve

 

[John & Joann]

Hi Joan

Hi Joan

Hi Joan and Welcome,

I am 60 and had both valves replaced in 1971. The valves (mechanical were again replaced in 1998. I also had 3 bypass and a pacemaker several years earlier.

Duke is a great facility. All my surgeries were doe at Cleveland and I feel it is the best. If you are in the area, I would stay with Duke.

Let me know how we can help.

John & Joann

 

[RobThatsMe]

Hi Joan,

Welcome to the board. I hope you continue to ask all the questions you have, and also just post to vent if you feel the need. We have all been there, and understand. As someone once said, the only stupid question is the one never asked.

There are so many people on here now, that have made many different choices, making the combined wealth of information available here truly astounding. There are no doctors or nurses monitoring the site as paid employees, only those that have found us and occationally comment. the rest are people like you and me that are either deciding on surgery, or have already had it.

I had an emergency aortic valve replacement last yr, 3/23/00. I am 51 yrs old.

Wishing you good health,

Rob

 

[ALCapshaw]

Hi Joan,

I understand your concern! I was scared out of my mind when I faced my first catheterization. It was a breeze. When I finally needed bypass surgery, I was anxious, but knowing 10 coworkers who had all been through it successfully gave me confidence that I would make it too. Yes, it is MAJOR surgery, but the technology is very good and survival rates are excellent.

I urge you to read the thread on Making the Decision about valve selection. Mechanical valves will last 'forever' but require anticoagulent (Coumadin, also known as rat poison) therapy for the rest of your life. Tissue valves have finite durability but typically do NOT require coumadin after the first few months. There are several to choose from: Cow Valves (Carpentier-Edwards Pericardial), Stentless Porcine Valves, and various Homografts (human valves). Durability appears to be in the 12 to 15 year range and counting. One thing in your favor is your age. Tissue valves seem to last longer the older you are when they are installed. Durability is best when installed after age 65.

Remember, there are hundreds of survivors here on this board who have all been through this. I've not read of anyone regretting the surgery. It will improve your life so much you will have no regrets.

Keep the faith!

'AL'

 

[Jean]

Welcome!

Welcome!

Joan,

I just wish I could hug you and we could talk over a cold ice tea, but at least this site is here for us.
Like everybody has already said, you are going through the worst part...we all had the same panic and terror. Some of us had longer to work through it and some just had it smacked in their face pronto.
You have a top facility and doctor, you seem set on the homograft (which I have also and thoroughly recommend) and now you just have to get ready to leave it in God's hands.
The cath was totally interesting to me and they let me watch most of it except when I had to lay a different way...then they reshowed the film to me. The hardest part of operation day way that I was scheduled early am, so had nothing to eat or drink and due to an emergency with somebody else they didn't get to me until late afternoon. I was starving and parched! Complain , complain. The biggest thrill was when I went walking on day three and suddenly realized how good I felt...I could breathe! Good luck and keep us posted. We are here to help.