Nervous Newbie No Valve Choice Yet

[Jay F]

Hello everyone, it's a huge relief to not feel so alone after seeing all of you together sharing thoughts and experiences. I just stumbled on to this site yesterday with a little over a week till surgery. I am scheduled for AVR on Wed. 9/28/06 at NYU with Dr. Stephen B Colvin. Minimally Invasive. I am 44 and had no symptoms till about a month ago which consisted of constant Palpitations only.

Since all the EK's EC's and Cath etc, I barely even Palpitate. I dont feel bad. Hard to believe that this is going on. Out of all my friends and family I have always been considered the "in shape" person....... I guess a little denial is normal. Anyway, I still have not yet decided on which valve to go with although my first inclination was tissue. Uncertainty of ACT was a main concern. After reading everyone elses situations, I feel more relaxed and at least thankful that I have a chance to live longer.

I would think that future technology is promising where going tissue and expecting more surgery's is possible and even easier. Before I came to this forum I was dead set AGAINST Mechanical, but now It does not seem so bad, nor does ACT. Well that's it for now, I hope that my inner voice or god or some supernatural force guides me to make the right decision for It is more about what will be right for my wife and 3 Children 11, 14, 17..........I'll keep you all posted. Thank You Peace Jay

AI Mod - Sev
50 - 55 %
3+

 

[bvdr]

Jay, welcome to this site. I know you have a lot going on in your head concerning your upcoming surgery. Make yourself totally at home around here and if you can't find something just ask and someone is sure to respond quite promptly. We have other members who have used Dr. Colvin so they may chime in before long too. Many of us think the wait before surgery is the hardest time and that will soon be behind you!

 

[Mary]

Welcome to the jungle, Jay!

I've put your surgery date on the Calendar, and I'm happy to welcome you to the VR family.
Relax and take some deep breaths. You're going to do fine, and you will be in even better health post AVR for your wife and three children.
Mary

 

[Lotti]

Welcome

Welcome

Welcome Jay
I hope you find this site as friendly and helpful as I did when going through the same. The chat room is good fun too. valvereplacement.com/chat.
All the best for your upcoming surgery from a valver who also could not make up her mind.
Take care
everyone here is brill

Lotti

 

[Jay F]

I am blown away

I am blown away

I cant believe how fast you guys responded and welcomed me. I think a tear just fell out of one of my eyes...........

Maybe that inner voice will start to speak.... J

 

[pipersmith]

Welcome Aboard...

Welcome Aboard...

Welcome to this supportive family. I am new, in the waiting room - so others will fill in all of the technical information better than I. I also was blindsighted by the diagnosis - also AI - I am 34 (today) with four kiddos (12, 11, 9, 3). I have also found this an invaluable resource. I have to say, I am always surprised at how many young people are having heart problems!!

I am leaning toward mechanical. I would chose no additional operations if possible. I am young - so mechanical seems logical. Others have different, very valid reasons for different choices. Sor some reason, my gut has always leaned toward mechanical.

I am so glad that you found the site. Best of luck with your health and surgery. Read what you can - information is a valuable tool.

Take care - and again - welcome!!

 

[geebee]

Welcome Jay,

You have made the hardest choice and that is to accept the fact that you need surgery. While the choice of a valve is necessary by someone, if you feel uncomfortable making that decision, you can leave it up to your surgeon. You have a great one doing your surgery and I think trusting him would be fine.

As Ross likes to say, "The only bad choice is no choice."

Talk to your surgeon and discuss your indecision and concerns. I am sure you will end up feeling okay whatever direction you go. We will also help you with questions, support and by just plain being here. Someone is usually around 24/7 (a lot of us have trouble sleeping) so, if you are up late and need something drop on by and let us know.

 

[Karlynn]

Welcome Jay!

In case you didn't run across it, this thread http://valvereplacement.com/forums/showthread.php?t=17116 gives a brief overview of ACT (warfarin/Coumadin) from some of us that have used it for a while. It's just intended to highlight the most often asked questions and address the most often sited misconceptions.

Here is also a link to a thread by one of our more research-minded members http://valvereplacement.com/forums/showthread.php?t=14330 and it may help you become a little more informed too.

Has your surgeon made a suggestion on valves?

Make your choice, but be comfortable with all choices and then (in my opinion) ask the surgeon to abide by your choice unless he gets in there and sees a strong argument for using another.

Wishing you the best!

 

[susieq14]

Welcome however, I'm sorry that you had to join this wonderful "family"

I can't offer any technical advice on selecting your valve or how to prepare for your surgery or cope afterwards since I'm in the waiting room and have no knowledge of what you are going through so I will just offer you my sincere best wishes as you get ready for your surgery and prayers for a successful surgery and uneventful recovery.

Susie

 

[sylviayasgur]

hi jay,
welcome! you've come to the best place for support, info, and just plain hand holding. everyone here is so amazingly warm and as you can see, welcoming.

my husband had a ross procedure done exactly 5 years ago tomorrow by dr. paul stelzer at beth israel hospital, nyc.
my father had an avr at st. francis hospital on long island by dr. paul damus done about 7 years ago (mechanical valve)
and, my father had a mitral valve repair done 5 days ago by dr. stephen colvin at nyu.

interestingly, all were very different experiences, surgeon, hospital, nurses, length of time left sedated after surgery with breathing tube in, how soon patient was encouraged to sit in chair and/or walk.
i learned a lot this week.

if i could give you one bit of advice it would be to meet several surgeons (and not rush into things)_ especially for their specialties. dr. colvin is known for minimally invasive surgery , dr. stelzer is know for doing the ross procedure, and there are numerous amazing surgeons right in your backyard at st. francis who are more than capable at replacing aortic valves_ it's a spectacular hospital.

if i can answer any questions, please feel free to email me or PM me; i'd be happy to help in any way i can.
read the threads karlynn recommended, especially tobabotwo's. very helpful!
wishing you all the best,
sylvia

 

[Matt]

I am 46 and like you have had my world spun upside down in the last 3 weeks from a yearly check up to open heart surgery. I am now 8 day post op with a new AVR (St Judes) and a MV repair. My two cents at this point.....do whatever you can to not have to go back to open heart surgery or as is used around here "back on the table" I went mechanic because of age and again after surgery.... I never want to have to go through that again. By the way, my surgery was the "full monty". You might ask about other type of cuts that might be able to be used in your case. I did not have a choice but the other methods sound less painful...

 

[aussigal]

Hi Jay
Welcome to the family....
I had my AVR 5 months ago now and I consider myself young at 41...I didnt really get a choice, I was given a mechanical valve. Life on Warfarin for me is no different than it was before warfarin (except for the tablet and an itty-bitty blood-test ). I have no regrets and no troubles, even after my initial OOOPS in hospital.
Trust your Cardio & Surgeon and ask us lots of questions...chances are someone here knows the answer...

 

[gijanet]

Jay...........

Jay...........

Just wanted to welcome you to the group. You do have a big decision to make, but you are just where you need to be to get the information you need to make an informed decision.

My daughter is five years old and has been on coumadin for fourteen months now. Before I found this group, I was terrified of ACT and feared that I was going to turn my child into a hemophiliac. This group squared me away and helped to appease my fears. Although I can hardly say that I am thrilled that Katie is on coumadin, it is not nearly as bad as I thought it would be. Katie seems to be tolerating it well, it doesn't slow her down a bit (she is, in fact, a terror), and her INR remains fairly stable.................and this is just our experience with it. Although in the minority, others have had problems with it. And we still don't know what the long terms effects of being on coumadin does to a developing body, but that is our problem not yours.

Do all of your research (check out Tobagatwo's thread on valve selection) and then weigh what is right for you. Good luck on making your choice. We are here if you need us. Hugs. J.

 

[ALCapshaw2]

Greetings Jay,

I had my AVR while in my late 50's. I told my surgeon I wanted a Bovine Pericardial Tissue Valve which he agreed to implant. Unfortunately, once inside, he found extensive scar tissue (from radiation damage) and concluded that a (St. Jude) mechanical valve was the best and safest choice.

Bottom Line: It is wise to have make a First AND Second choice.

Advancements in both Tissue Valves (coatings to prevent / slow down calcification) and Mechanical Valves (improved hemodynamics and reduced clot forming potential) give patients even better choices today.

I'm very impressed by the third generation mechanical valves (ATS, On-X, Sorin, St. Jude Regent) which offer the possibility of reduced ACT levels or even Aspirin Only therapy. Studies are currently underway to investigate these options. I would probably go with the On-X valve.

You can find LOTS of discussion of these valves in the Valve Secection Forum. Also see the manufacturer's websites.

Many people select their surgeon based on the surgeon's experience with their "Valve of choice".

'AL Capshaw'

 

[Jay F]

Very Thankful

Very Thankful

You guys are the best. I Thank each and every one of you for all the replies and kind calming words. You all have my sincere thanks and prayers. Peace Jay

 

[Marguerite53]

Welcome to the club!! Valve choice is the hardest part....that and the waiting! Go with your best advice and your gut. Then don't look back. You're gonna wake up with something that will keep you alive for a nice long time. That's the best part!

You have a wonderful attitude already. Keep that. No need to change it! Ask any and all questions....start new threads. We're a responsive bunch here....with big, mended hearts!!

Good luck. Use these next few weeks to stop and smell the roses, hug your wife and kids and breathe.....you'll do great!!

Marguerite

 

[catwoman]

Jay:
Welcome to the Zipper Club! (Even if you're getting a teeny-weeny zipper )

You're probably going to spend quite a bit of time here the next couple of days, learning what's ahead and how to clear the hurdles. That will help you IMMENSELY post-op.

 

[JohnnyV_46]

Glad you found us here before your Surgery Jay. I didn't find out about it til after my surgery was over. Yesterday was 13 months post surgery for me..I feel fantastic...The surgery was not too bad for me...I'm happy with my decision...ask me again in 12-13-however many years this valve lasts.

http://www.edwards.com/products/heartvalves/pericardialaorticmodels.htm

I have the 3000 TFX. My Doctor was skeptical and really wanted me to go with mechanical but changed his mind when the 3000 TFX was available.

Maybe I'm a bit of a Gambler? If the valve lasts 12, and they're predicting 20years, I'll be 58 if I have to have it replaced....Really not old by today's standards...Who says what a lifetime is? When they tell you that a mech will last you the rest of your life? Just how long is that? I gotta tell you that even tho those who are on Coumadin are happy with it, I'm glad I'm not one of them.
There are definite reasons why the majority posting here are Mechanical Valvers. One is that they've all become friends. One of the others is to discuss there coumadin regimens and troubles keeping there levels right,what to do before minor procedures...I'm not saying that those things aren't dealt with. I'm just glad I'm not dealing...Ok All you mechanical valvers, You gotta know I love ya's. Just presenting my case.

JohnnyV....MOOOooooOOo...

JohnnyV

P.S. I forgot another Very important reason they are here and that is to help people like Me and you!

 

[kodi]

Welcome Jay. I'm really kind of new here too but they have one heck of a welcoming committee. I've learned quite a bit from this site and you will too. I'm still pre-op and really can't comment on too much. My suggestion is to absorb as much as you can and ask lots of questions.

 

[marciemarine]

Wow, Jay! I am abot to schedule my surgery too and I'm new to the great site. I was reading all of the great replys you got and I'm glad to have such great company! I hope all goes well for you! Marcie Marine