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S

Scott

Well-known member
Joined
Dec 22, 2010
Messages
127
Location
Atlanta, GA
Hello all.
I have been viewing these posts for months now and just wanted to say thanks for letting me gain the knowledge and insite. I have been freeking out about my condition for about 10 months now. I went in for a check up and found out I have a bicuspid aortic valve with severe reguritation. I am 44, 5'8" 136 lbs. No symptoms. I had high cholestoral (genetic). I'm on simvastat now. I went back 6 months later and now it's moderate regurgitation. I tell you what. Trying to decide on a doctor, a hospital, and a valve on top of dealing with all of the other issues is more than I can take at times. I have to call for my next echo in a few weeks. I live in the atlanta area. I am leaning toward the on-x valve when it's time. I am with Piedmont right now, but I am thinking of going with Emory. Dr Guyton is supposed to be very good. If anyone can give me any pointers on how to choose it would be great. They all say they are the best. So far I think that denial is working best for me.
Thanks, Scott
 
Hey Scott, welcome to the waiting room.

Sounds like you found the forum early which is a good thing. By the sounds of it you may not be up to Bat for awhile, your condition is not severe just yet. I cannot help you with advice on any of these doctors but I am sure you will be comfortable with your choice by the time you do need surgery with your preparation. For me, they are all good to get to where these surgeons have in there lives. I found it hard to find any information on surgeons, it was my first question I asked when I came on this forum.

It is hard to stay calm, you are a young guy and it sounds like you have been monitoring your health well so statistically you should do very well. Keep reading and asking questions, good luck.
Jeff

G
 
Scott -

Have you familiarized yourself with the BAV and Connective Tissue Disorder Forum?

If not, you can learn a LOT of pertinent information about those often related conditions by reading the posts in that forum.

Because of the not-uncommon association of Connective Tissue Disorders and possible anerysm(s), you would be wise to select a Surgeon with experience in recognizing and treating those disorders.

Dr. Chen at Emory seems to be the 'go-to-guy' for Surgery of the Aorta in the SouthEast.

Emory is the sponsor of the On-X PROACT Studies and their surgeons should all be familiar with those valves.

'AL Capshaw'
 
Thanks. I think that Dr. Guyton is working with Dr. Chen at Emory. I read that they were doing a study with a different blood thinner. I am just not sure if I should keep seeing my Dr. at Piedmont untill she recomends surgery or if I should just try to see the group at Emory now. Up untill now I have just been moving up the ladder and going where I have been told to go next. The people at Piedmont have been really great, but I want someone that really knows about this. I will look at Emory. I will check out the connective Tissue disorder forum. I asked my Dr. if I had a decending aorta or anurisms and she said no. But It seams like they really can't tell with just an echo. Thanks for the info.
 
Thanks. My Dr. at Piedmont told me it could be from 6 mos to two years. Maybe even longer. That just doesn't seem like a long time. That was almost a year ago. I really did freak out for months. I started cleaning out all my old clothes and stuff in the attic. I thought for sure I wasn't going to live thru this. I am starting to have more hope now. I am just having a really hard time figuring out what to do. I am just glad to hear from others that have made it.
Thanks again, Scott
 
Scott - You're in the right place, and welcome to The Waiting Room - the virtual room where many folks await their own turns at valve surgery. I spent about 9 years waiting for my time, and being a member here for those years made it time well spent. I learned so much from these people that when it was time for my own surgery I was asked more than once "Are you an MD?"

Having had aortic stenosis, I can tell you that initially it worsens very gradually. I hardly noticed mine progressing until the last year or two. I just had annual echo's to watch the dimensions and statistics. I knew time was drawing near when my cardio changed to echo's every 6 months. When it was time for surgery, it was I who told him - I didn't need to be told. I was feeling a dramatic reduction in exercise tolerance (I've been a runner/jogger for 30+ years), and I decided it was time.

As to your quandary about potentially having two cardiologists, that shouldn't be a problem to either of them. That's what I did. I have a "local" cardio at the regional center near home. I've been seeing him for years. He was the one who referred me to surgeons at two other hospitals for surgery. Once I chose one, I was assigned a cardio at the hospital where I had surgery, and they coordinated everything with my "local" cardio. It took a bit more care with managing meds and stuff, but worked fine. I am now back in the care of my local cardio, with the cardio at the hospital as back-up if ever needed. They do this all the time, at least here in Chicago. My cardio is at a highly-ranked suburban hospital, but for valve surgery he refers his patients to other hospitals that are even higher-ranked. Talk it over with your own "local" cardio and if he/she doesn't want to refer you to your choice of hospitals for surgical consultations, then it may be time for a different cardio.

As mentioned before, with your measurements it sounds like you have some time before surgery. Go ahead - live your life as you would have before your diagnosis, but realize that at some point you may be given some limitations as surgery nears. I did all sorts of things during the years between diagnosis and surgery. That's life, and I chose to live it my way. I still will, once I've recovered a bit more, too.
 
Scott said:
I thought for sure I wasn't going to live thru this. I am starting to have more hope now. I am just having a really hard time figuring out what to do. I am just glad to hear from others that have made it.
Thanks again, Scott
Click to expand...

You can only eat an elephant "one bite at a time":biggrin2:. Although OHS is major, it is not life altering. My surgeons, back in 1967, told me it was a "straight forward" surgical procedure and......so far they are right:thumbup:.
 
Thanks Steve. I think it all just took me by surprize. I am on a 6 month echo schedule now. I was told that with severe regurgitation it usually doesn't take long to have symptoms. I think they were surprised that I didn't have any. They kept asking me how many pillows I use to sleep with and strange things like that. I now see that they were looking for symptoms. Maybe my second echo was more accurate? I still run/ jog about 3 miles 3 or 4 times a week. I would run every day but still work alot. I have made myself not push hard anymore. It worries me to let my heart rate get up past 170. I can usually run an 8 to 8 1/2 min mile and keep it under 165. I am glad to hear that I will be able to run after the surgery. I am trying to enjoy life more but I'm a bit of a pessimist.
My current Dr. asked me if I had a surgen in mind and I told her Guyton. She said no problem and added his profile to my folder. They are not with the same hospital and I haven't talked to Guytons group yet. I just heard that he and his team were the best around.
Thanks for the comments. I hope you are able to run again soon.
 
Thanks Dick, You are really an encouragment. I was scarred out of my mind when I first came home and looked up aortic valve replacement. The first few things I read said 50% of the cases died within 10 years after valve replacement and the doctors were saying how great it was to give these people 10 more years! I totally freaked out for a month. Then I saw one of your posts and realized that people can live with this. I didn't realize that allot of these studies are targeted to certain age groups or spacific problems. It's still very scary, but I think I will still plan for retirement. Just in case I live!! I don't want to have to work forever.
I really hope that I have a story like yours, it's a good one.
 
Scott -

re: aneurysms, I don't totally understand why, but apparently echos are not able to detect aneurysms throughout the entire aorta.

The Gold Standards for assessing the aorta for aneurysms are either a Chest CT or Chest MRI.

BTW, we have had several members who claimed that they had "No Symptoms", only to have them come back after Surgery to report that they felt much better than they had for some time. Things they had attributed to "old age" or "being out of shape" disappeared after they had their defective valve(s) replaced.

re: 50% survival rate.... that must be Really OLD Data, or based on patients who are/were "elderly", who might only expect to live another 10 years with or without Valve Disease.

Dick0236 has had his ancient mechanical valve for over 40 years and is still counting !

Given that you have BAV and your numbers indicate valve disease, it would be wise to 'line up' your Surgeon of Choice beforehand so that you (and he) know what to do and who will do it when the time comes. You DO NOT want to be choosing a surgeon from a Gurney in an ER somewhere!

'AL Capshaw'
 
Hey Scott,
I understand the shock of finding out you have bi-ticuspid valve out of the blue. I discovered mine Feb 12, 2011 and had Surgery March 11 2011, I did have a 4.7 annurysm in my ascending Aorta that was the greater issue. I didn't choose the valve I figured that was my surgeons expertise, other then the fact he explained the benefits/ issues with both tissure and Mechanical. I had just turned 52 when I was diagnosed, NO cardiac or cholsteral or Blood pressure history. This forum helped more then I can say with explaining what they had experienced and stayed focused on the positive. I believe that to have these problems fixed and to go on with our lives is a true miracle. I am in my 11th or 12th week and this is doable. The medical professionals know what they are doing and they want you to pull through as comfortably as possible, Everything I was afraid of turned out to be OK. I work in health care and I know JUST enough to really scare myself. I didn't look for visual photos of surgery until 2 weeks ago. This forum was more helpful. After I saw the photos, I was amazed and felt so blessed to be living in these times when there are options for us. It is a suit up and show up kind of deal for me and let them take care of me. The prognosis for us is fantastic.Following the recovery rules is difficult at times but it did help to let others help me when I got home. Sorry so "wordy" I had an awsome Cardiac appt today so I know this works and I understand the fear. Don't let it consume you it is such a waste of energy.
 
Scott said:
..... It's still very scary, but I think I will still plan for retirement. Just in case I live!! I don't want to have to work forever.
I really hope that I have a story like yours, it's a good one.
Click to expand...

Thanks Scott. I think that continuing to plan for retirement is what you should do. There are LOTS of folks who have gone thru OHS and continue to lead active, productive lives, both pre-retirement and post-retirement. I have a friend who lives a few houses from me that had a valve replacement in 1976 at about age 45 and is still "kickin'" at 80....although diabetes is now slowing him down. FWIW, I had a discussion with a PCP several years ago and his quote to me was...."something will eventually get you, but it probably won't be the valve".
 
Scott - I've been told by more than one doctor that "You should now be looking at the same life expectancy and physical capabilities you would have had if you had never needed valve surgery." And. . . my case is nothing extraordinary. Almost all of us have that same prognosis, so don't spend your retirement savings yet.
 
Wow. I am glad that I have had time to warm up to all of this. I am a control freak so I have been trying to get my life in order along with trying to figure out what kind of valve I want. I would have been a total mess if they told me I had to have surgery that soon. Iv'e been a total mess as it is but at least iv'e been able to hold it together most of the time. Thanks for all the words of encouragment. It really means alot to see others doing so well after surgery.
 
Steve, I didn't know that I could be looking at the same life expectancy and physical capabilities that I would have had if I didn't need surgery. I was thinking I would have bleeding issues and infection issues and other not so nice things going on. I am sure some of that is true, but it sounds like life will be more normal than I thought. Thanks for the insight, Scott
 
Scott, first of all, I have noticed you need to slow down a bit. Let the body tell you whatever it needs you to know. Just with you present condition, there is no automatic surgery, but at least taking the time to learn your options is a step in the right direction. But slow down and calm down, it is all right. Just take it one day at a time and keep learning about heart treatment progresses. Things change all the time. I was 38 for my St. Judes aortic valve, born with defective valve with murmur. But I had worries a bit also. It comes and then goes as time passes on and you look back and say,"Why did I do all that for?" The worrying part, anyway, is normal, at first. You will be fine in the meantime. Keep coming in here and ask questions. The more you the better informed and educated you become, and shock the doctor and surgeon an what you know. Take care.
 
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