Homograph AVR scheduled WED 12/18/02

[conk]

UPDATE UPDATE UPDATE

Dr. Starnes is doing some emergency surgeries today, therefore today's surgeries are sliding to tomorrow and mine is being moved to Friday. Not all bad, since it allows me more time to get this in order, but now it's touch and go whether I will be out of the Hospital by Christmas. I will do my best, but I realize it's not all up to me. - Update posted 12/17/02

Hi All,
I just joined the site tonight. I'm in a mad scramble for information since my surgery is scheduled in 3 days. This site looks like a great wealth of information. Here's my situation.

I was diagnosed with Aortic Stenosis NOV 2001 at age 50. As a result of an annual Navy Reserve Physical in OCT 2001 a heart murmur was heard and I was told to see a cardiologist. A resultant echocardiogram indicated severe aortic Stenosis due to a congenital Bicuspid valve. I was asymptomatic and told that this would need to be followed closely (every 6 months) and I would eventually need a valve replacement. I am a very active person and always push myself physically during exercise, which I have continued until yesterday. I have noticed that I?m not quite able to keep up with my healthy peers, but I have felt no overt symptoms to date. In MAY 2000, I was told that there was no change in my heart and it was not yet compensating for the Bicuspid Aortic Valve. In NOV 2002 I was told that my heart had now started to enlarge and I should consider getting the valve replaced soon with a mechanical valve. Since seeing two surgeons, the second a specialist at USC, I have found that I am not a candidate for a Ross procedure, which I was investigating. This is due to the Radiation treatment I received for Hodgkin?s Disease almost 18 years ago. It seems the radiation has caused some damage in addition to being born with a Bicuspid Valve. This surgeon (the same surgeon that operated on Arnold Schwarzenegger?s valve) suggested a Homograph. My surgery is scheduled for 18 DEC 2002, which is this coming Wednesday. It?s either a Homograph or St. Jude?s valve. I?m 90% leaning toward the Homograph to avoid the coumadin. Any advice or information on homographs would be appreciated.

[email protected]

Attached is my wife and I with my homebuilt aircraft at Oshkosh, WI in July 1999.

 

[Dave5Baseball]

Conk,

First of all welcome to the site. There are many people here with valuable information. I'll try to help but I'm not sure how much I can offer. I just had a homograph valve put in on 12-06 so I'm only 10 days post-op. Therefore, I can't tell you how it's worked out for a long period of time, but so far all is well. I too had the bi-cuspid aortic valve and am also a very active person. I was told that after the surgery you should be able to continue the active lifestyle. That's the main reason I chose the homograph because coumadin and physical activity don't really go together. Like I said before, you'll here from a number of people on the site and they probably know more than me. I hope I helped a little anyway. Good luck with everything and I'll be thinking about on on your day of surgery. Take care.

Dave

 

[Johnny Stephens]

Hello, conk, it sounds like you are in a similar situation to what I just went through. I too was irradiated for Hodgkin's in 1980...22 years ago. In April of this year I found myself undergoing surgery for Aortic and Mitral replacements. I did not have the bicuspid defect, but the theory was also that the radiation had led to premature stenosis and calcification. I came away with dual mechanical valves. All the doctors said that given my age (43) and radiation history, future operations might be challenging if there is any scar tissue present around my heart. There was, so I'm glad I went with the mechanicals so as to reduce the probability of needing a second operation. I had some serious complications that were likely the result of scarring to the drainage system of the lungs.

I came back from it, am working and living my life again, and feeling MUCH better than before. I have found that the Coumadin does not limit my lifestyle. Most of the time I don't even think about it.

Valve selection and the impact of Coumadin on your lifestyle are both very individual situations. What was right for me may not be right for you, so keep that in mind.

My personal story is at

http://www.valvereplacement.com/stories/johnny_stephens.htm

Best of luck on your upcoming surgery.

 

[Granbonny]

Hi Conk

Hi Conk

Welcome to our site. You are in a mad scramble..so I would suggest putting your lovely wife on and let her read all the past post...Under pre- and post surgery. She will find lots of information for you..as your hospital stay and when you return home...Living in a warm climate you will be able to walk outside which is the best that you can do post surgery (walking) Gets the nasty stuff out of you quickly.....Your choice of valve will be between you and your surgeon...I have the mech. Did not want another operation (age 62) Coumadin is simply taking a pill every day. I had deep dental cleaning last week and never bled..(Never get off coumadin) and I have never had a bruise (soon 9 months post-op) But we are all different...Wishing you the best. Bonnie P.S. I'm married to a retired Delta Pilot..I'll show him your plane when he gets up. I'm the early bird.

 

[hensylee]

Dear Conk - welcome to VR. You are among good company as there are so many members who can relate. And they will. I wish you the very best - guess you will be going in tomorrow or early Wed a.m. So from me to you ....GODSPEED

 

[Nancy]

Hi conk-

Welcome to this great site. I'm sure you've read a lot of the posts already.

My husband is the patient here and has had 3 valve surgeries, a pacemaker, 2 lung surgeries and a host of other very serious medical things.

He didn't have a choice 25 years ago when he had his aortic valve replaced. There were 2 choices, pig or mechanical. It was thought that pig was the better choice then. But he had an allergy to the pig tissue, and they appologetically implanted a Bjork-Shiley mechanical. That valve is still with him and is quite a workhorse. He also has a St. Jude mechanical. He's been on Coumadin for 25 years, and has led a very active life. Recently he's had some medical problems, unrelated to his heart, and is in recovery mode from them, but I can't think of any incidents which were caused by taking Coumadin in 25 years.

Valve choice is highly debated topic here and you will find that there are no bad choices. The ultimate chooser will be the surgeon once he gets inside your chest, and some people have to go on Coumadin, regardless of what valve they choose, because of arrhythmias, so it's a good idea to have a couple of choices in your mind.

Good luck on your surgery, you'll have a shiny new heart for the New Year.

I hope you introduce your wife to the group and hope that she will be able to post for you to let us know how you did.

Talk to you later.

 

[JimL]

Welcome Conk and wife!
I had a mechanical installed a year ago for the same problem, congenital bicuspid valve.
I wish I didn't have to be so active, but work keeps me very busy. The coumadin has been a non-issue for me.
It is really good to see people in short sleeves (and even a tank top) when it's snowing here in Michigan!

 

[Tom]

Hi Conk,

I had an aortic homograft in August 1999 at the Mayo Clinic at age 45. It was a hard decision to make. I was told by one surgeon that I should have a mechanical, and then another one told me I should definitely have a tissue valve. The third one, Dr. Schaff (and the one who did my surgery) said he might be able to repair the valve, and if that was not possible, replace it with either a homograft or mechanical. I chose the homograft because I'm very active in sports. I love mountain biking and downhill skiing. My idea of a great vacation is to spend all day mountain biking in Moab, getting dirty and sweaty, falling a few times, then getting cleaned up for a nice dinner under the stars. Or skiing bump runs at Copper Mountain all day. I take one aspirin per day. I had a nasal septoplasty a year ago and stopped my aspirin for two weeks before without problem. I just had my yearly ECHO and the valve is working fine. Of course the trade-off is that we homograft recipients will most likely need another surgery 15 years or so done the line. But for me it is worth it, and hopefully the technology will be available at that time to implant valves made of our own cells that will be permanent. As everyone states here, there is no right answer for everyone. You have to choose what feels right for you. It seems most people, mechanical or tissue valve recipients, are happy with their choice.
Good luck Conk,
Tom

 

[tnboomer1013]

Good morning Conk

Good morning Conk

Just thought I'd inject my 2 cents worth. First good luck on VR day everything will be ok. I had av replacement last July. I had wanted a ross but to complications that was not a possibility. So my surgeon went with plan B. Be sure you have talked this (the alternate plan, plan B) over with your spouse and your doc before hand and everyone is on the same page. Because they I don't think will wake you half way through to ask your opinion if something needs to go in another direction. If that makes sense. I can tell you at age 45, and a very active life in every aspect even knowing another surgery would be in the cards I think in retrospect I would have gone with the homograph. This coumidin thing has really been a headache for me. They can't ever get it normalized. I am not able to get to the lab for the biweekly sticks and that's not good but when you are out of the country whatcha gonna do. Now alot of folks here have the protime which I wish I had, but my ins. would not cover it. So even when I go out of town in the USA for an extended time I have to try to find a suitable lab. Boy that can be a real pain. As my work takes me all over the country.
I have to be extra careful at work as not to get injured because of the obvious. I am a Boilermaker and work in heavy industrial construction. In some of the locations I have to go, let's just say that I would not want to get hurt. Sorry Bonny I bruse very easily. My gums bleed when I brush my teeth, and I get nose bleeds often. So going back to what I said earlier, knowing what I know now. I probably would have gone with the homograph and another surgery. But who knows in 10 or 15 years what advancements would have been made.

As I said it is my 2 cents. Don't get me wrong I am grateful because this base drum in my chest beating away sure beats the alternative. Oh yes I almost forgot I have a carbomedics valve and sometimes it sounds like a base drum. Sometimes it is so loud I can almost feel it in my throat. I have been told that the St. Judes is much quieter. Don't know first hand though.
I do get to watch my kids grow up. One day hopefully get to spoil my grand kids rotten. HEE HEE. And if money time and family permits get to see another sunset from the off the cliff overlooking the Pacific ocean close to where I grew up.

But everybody is different so you have do what is right for your situation and family. You will be fine and keep us posted. See you on the other side.

Hope this helped. Our prayers and thoughts will be with you and your family.

 

[conk]

Thanks for the comments

Thanks for the comments

I certainly appreciate all of the good words and comments from everyone. I went in for my Carotid duplex scan and Pre-OP today, MON 12/16. Huntington Memorial Hospital in Pasadena seems to be very modern and well kept (almost looked like a 4-5 star Hotel). I'm sure I won't be too concerned with looks after my surgery, but it seemed like a nice environment to checkout while recovering.

I have convinced myself that the homograph is the right way to go for me, but they said I could change my mind up to the last minute (before I'm "lights out" that is) so you never know.

I wish there were some good statistics on homographs, but apparently, in the past 10 years there has been an upsurge in their use. I'm wondering how many people have made it past 15 or even 20 years, starting at the age of 40-50 with a homograph. Problem is, techniques for cryopreservation and replacement have significantly improved in 20 years, so the statistics should probably be the low side of what to expect. Maybe that's rationalization on my part.

At any rate, not much more time to contemplate with one day to go. Again...Thanks so much to all for the encouraging comments.

I'm looking forward to being back in the airplane and flying places again with my wife. I will have to wait 6 months after the surgery to take tests and reapply to the FAA for my medical certificate. Probably be realistically about 8 months before I fly again, at least as Pilot in Command.

Denis (Conk - Navy call sign)

The photo is from 1994 in El Centro on a Bombing Detachment:

 

[Creed3]

Hi Denis!

Hi Denis!

I don't know if you will see this before your surgery, but I just want to wish you all the best with your surgery on Wednesday. Everything will go just fine and you will be back to feeling more like yourself in no time. Please let us know how everything goes. This site is wonderful for support after your surgery as well.

Take Care!
Gail

 

[Davidcv67]

You get up in that plane and are worried about a little valve surgery?...Believe me I'll take the valve replacement!

Good Luck it will be no prob!!!

 

[bruizer]

Hi,

You are in good hands with Dr. Starnes. He performed my Ross Procedure 2 years ago. In addition to being one of the best surgeons in world, he is also a warm and caring person. My whole AVR experience with that team at USC was excellent.

God Bless.

 

[sylviayasgur]

hi denis and wife!
i don't know if you'll get this before going into surgery tomorrow, but just wanted to let you know that you are in our thoughts and prayers . we look forward to hearing how it went (please post, mrs!).
as everyone has stressed, it is a difficult choice, selecting a valve, but in the end
there are no wrong choices.
wishing you all the best, sylvia

 

[conk]

1st Post Surgery Report

1st Post Surgery Report

Hi everyone!!!
Well it?s been all of 49 hours after surgery and thanks to all your prayers and positive thoughts, I?m doing GREAT. I won?t bore you with every nitty gritty detail, but will give a short version.

Arrived at Huntington Memorial at 5:15am. Checked in and went up to the Surgery Prep area about 30 minutes later. I was prepped and rolled into the surgery room about 7:15. I remember commenting about the amount of equipment in the room. I was then moved from the gurney to the Operating Table. The next memory I have after being moved to the table was waking up from anesthesia. I remember the breathing tube and pointing to it to get it out. Joanne says it was 30-45 minutes before they took it out, but it seemed much shorter. I guess they needed to take an XRAY to make sure my lungs were inflated and a they also took some blood for testing.

In the afternoon I was amazed that I felt well enough to talk to about 5-8 people on the phone and I ate most of my dinner that night. I sat up in a chair the first evening twice. Once for about 90 minutes and the second time for about 45 minutes. Pretty much ever since it has been progress in leaps and bounds with no backward movement it seems that I?ve heard that one can have. I had the catheter removed from my neck (this is one that has a tube that sticks all the way into the heart. Also had the bladder catheter removed at the same time. Feeling good to be much less encumbered, but still had the chest drain tubes in. Walked three times yesterday and twice already this morning. Just had the chest tubes removed. I was kind of worried about that, but it was anticlimactic. Great to have those tubes out of me, because I had to have someone carry the container that they fed into on my walks. There were also some pace maker wires (just in case they needed to hook up a pace maker to regulate the heart beat) coming out of my stomach that needed to be removed. One side was pulled out with no problem and the other side had to be cut because there was too much resistance to pull them out. I guess this is normal and they will just stay there without a problem.

This picture with was taken just after my tubes were removed. She has been my constant support and has made this surgery go as well as could have been possible with her encouragement and support.

Well, that?s where I?m at now. I have to stay in bed for two hours after having my tubes pulled, and then I?m sure I?ll want to take a walk again. My hope is that I?m released tomorrow, but more likely it will be Tuesday.

Thanks again for all the encouraging thoughts and prayers. It?s great to have such supportive VR friends.

Warm Regards,

Denis

 

[Ross]

I'm so glad to hear from you! We were beginning to get worried.

Congratulations and welcome to the top of the hill. It sounds like everything is going better then planned. I certainly want that to continue. Walk, use that Spirometer, and do what your body will allow. Hope to see your home soon. I think they might cut you loose tomorrow.

By the way, there are 2 Private Messages in your inbox from me.

 

[Granbonny]

Hi Denis

Hi Denis

You look great sitting there in your bed. Use that breathing thing on the table a lot..Love your Hat..Keep walking. Bonnie

 

[Davidcv67]

Wow you look pretty good after only a few hours. Just to put how well you did in perspective I'll tell you know how I did compared to you. (Not that it's a contest but I wanted to let you know you are pretty fortunate)

My surgery was 10 hours (they had to open me up twice)

I was on a breathing tube for 19 days. (I ended up pulling it and my feeding tube on my own in the middle on the night out of frustration.)

It took me about a month to eat anything at all without it tasting like dirt and wanting to toss.

So way to go! I'm glad you are O.K. and hopefully you'll get back in that plane soon enough!!

Take care!!

 

[Dave5Baseball]

Sounds like you are doing awesome. Great to hear the good news. It will be nice to get out before the holiday. Hope the rest of recovery goes as smooth as it has already. You're doing great!

 

[medtronic of borg]

wives

wives

Isn't it great to have a wife help you through it all!!!! I like the support...even though I had a constant flow of family and friends.
Looking good dude.