New guy waiting on surgery

[EVELYN]

Hi David and welcome to a great site!!!

I'm Evelyn, whose husband, Tyce, had AVR 2 years ago this past June. I agree with everyone that this site is the very best. If you have any, and I mean ANY questions, please feel free to ask, because they will definitely be answered. Someone on this site has been there and done that.

I've been reading the replies to your posting, and I definitely would say I agree with Al Capshaw about looking for a surgeon now. You don't want to have any permanent damage to the heart muscle and you don't want to get into a situation where your health is compromised pre surgery. My husband didn't have any symptoms for many years, went into afib, was in the hospital for a week and two weeks after was having surgery. We're so very glad we had it done early. While no one wants to have this surgery, it's definitely worth it to have it done sooner than later.

Please tell your wife to post if she has concerns....it's difficult from the other side, too.

Good luck!!!

Evelyn

 

[dcpickle]

Thanks for the great welcome! I'm sure I'll be having a few questions as I go along!

David

 

[dawnwit15]

Hi there

Hi there

As Bill and Al suggested-see a cardiac surgeon asap for an opinion and don't hesitate to get a second and third opinion while your at it. You want a doctor who is attentive and responsive not one who has his nurse translate reports to you over the phone. This is your heart we're talking about not a scratch on the knee. Ok, can you tell I'm disturbed with your doctor? Go to the best, accept nothing less.
This site is the best support group I've ever encountered and it still brings me to tears thinking about the constant encouragement and support I received from everyone here this past Jan. when I had my open-heart.
With regurgitation be careful with how much you lift. My surgeon put it in the most basic terms for me so I would understand, imagine stepping on a tube of toothpaste and the toothpaste squirts out all over, that is what you are doing to your valve when you lift heavy stuff while having the condition of regurgitation. I understand, it's hard to curb that behavior, I myself forget sometimes but I try to remember that if I don't quit it, I'll be back on the operating table.
I wish you the best of luck. Please keep us updated on your condition. We're one big happy family here, so please keep posting any questions and concerns you may have.
Take care,
Dawn

 

[Marguerite53]

Welcome!

Welcome!

Hello David,

Ah, another kindred spirit! BAV looking forward to an AVR sometime in the next few months or years. This forum is keeping me sane and informed.

I'm older, 50, but have known of my condition for 25 years, monitored it pretty religiously with echoes, and made a special appointment when I noticed I was breathless at the top of the stairs (and had been running tirelessly up and down a 2 story house for 20 years) and most especially, that I became breathless when I was carrying something!

By all means, get the copies of your reports. If nothing else, you feel like you have facts and numbers to help you with your research and decision making. Over the years, I changed doctors alot, (mostly just for insurance reasons) and I had never asked for any copies. Recently, I was able to make enough phone calls to get several pretty old reports faxed to me.

I also got a second opinion and prefer the second doctor whose stature in our community is higher. It is also easier, I found, to go in to a new face and tell that person what was missing in the relationship with the first doctor. If they step up to the plate and work with you, they're in. If they don't, you keep looking.

So good luck! and Welcome...

Marguerite

 

[tobagotwo]

Looks like VR has got you busy for the next few weeks at least. Nothing much I can add to all that. Just dropping by to say, "Hi, and welcome."

Best wishes,

 

[Glenda]

Hi David, it's always great to add new family members to our forum although I'm sorry it had to be this way. I wouldn't wish this surgery on anyone. I have had numerous surgeries and this by far was the most serious. I was so thankful that I found this site before I had the surgery. You will grow to love everyone of these family members of our site. We may not have all the answers but we are here to listen and tell you our experiences and what has worked or is working for us.

Welcome! ! !

 

[Harrybaby666]

Welcome Dave!

Welcome Dave!

Hi There Dave,
Just wanted to welcome you to the Gang OF Us who are still waiting...I am about your age (4years younger) and I also have the enlarged ventrical (in my case-both left and right) that you have mentioned. The way the doctor explained it to me is that I am developing a "Stiff Heart" where there are extra fibers growing within the heart muscle which in turn, causes the walls and septum to thicken and "stiffin" I don't know if this will help you, but they have put me on Coreg, which I have found to be very effective in reducing the fatigue. I am also waiting and wondering about what they are gonna do with my valves (aorta and mitral are the worst). I don't know if I have helped you in anyway, but I just want you to know that the people at this website are wonderful and supportive, and comical, and just downright great people...So, Welcome!!! Take Care, Harrybaby666

 

[dcpickle]

So why haven't they referred you for surgery yet? You have symptoms and ventricular enlargement. Are your numbers (valve gradient, etc.) not bad enough yet?

(thanks again for the welcome everyone)
David

 

[Harrybaby666]

It's Amazing...

It's Amazing...

Hi Dave,
It's amazing that they haven't done anything yet given the fact that my father needs a heart transplant and I have been having incredible symptoms, BUT, I guess I will have to just hang on until they say that something needs to be done...which scares me to death because, they didn't do anything for my father until it was too late and then they told him the probability of surviving a transplant would only be 30% given his age, his diabetes etc. etc. I would have to travel a good distance to get quality medical care, but I would if I have too, as the docs in my area are absolutely useless..especially to those who are on medicaid such as I. I hope your getting better medical care..Take Care, Harrybaby666

 

[ALCapshaw2]

Harry,

Have you interviewed a SURGEON yet?

You CAN make your own appointment with a surgeon without a referal. Just tell the office staff what your test results show and what symptoms you are experiencing.

Cardiologists are notorious for postponing surgery as long as possible.

'AL'

 

[Englander]

Hi
Welcome.
This is a great site. I have no heart condition but my Husband did and he found the site very useful. Now i do. Everyones really helpfull. You will enjoy being a member and will not get enough of being on the site.
Bess

 

[Harrybaby666]

Hi Al

Hi Al

Hi There Al,
I always thought that the Cardiologist had to make the decision as to when surgery was needed. I spoke with a Cardio-Thorasic Surgeon's office, while finding a new Cardiologist, and the Secretary basically, they couldn't do anything for me until it was time for surgery and then I had to go through a regular cardiologist before they would even see me...So much for New Hampshire Doctors....and as I have told Atydev, (April from Louisiana), When you are on Medicaid in New Hampshire anyway, you are on the bottom of the list when it comes to medical care..It's horrible, but it's the way of the government, but then again, our illustrious Governor, Craig Benson doesn't have to worry, he is worth Millions...He just boosted our Copays for meds to 4 times what they were before, and now, if I have to go to the ER, if I am not in Pain, I get charged a copay there too..Sorry for the venting, but it explains the position that many of us are in....Harrybaby666

 

[Rebecca]

Hi David,
Welcome to this wonderful web site. I lived in Roswell GA and have used Dr Thomas Backer (770 751-9131) until he dropped my HMO insurance. His office is in Roswell not to far from where you live. He prefers mechanical valves and is a good catholic doctor. I have paid to visit him a few times. I then used Dr Chorches out of St. Joseph hospital. He is always listed as a top cardiologist in Atlanta top doctors list. At the time I saw him I was having chest pains, chest pressure, and total fatigue. After my first visit he sent me to a thoracic surgeon Dr. Wolf. Dr Wolf is a very good surgeon and he also does the ross procedure. He does not have very good bed side manners but when the time comes for my sugary I would consider him as a surgeon. I went to Dr. Maurice D Harris in Decatur (404 296-1256) for a second opinion. My sister had seen him twice before she had moved. Two years later when I first visited Dr Harris, he still remember the town my sister had moved to. He now is my cardiologist. His health form that you fill out is very very long. His nurse also has long long lists of questions. He gave me lots of free med. until we found the right blood pressures medication I have been feeling great for over a year now and my tests still say it not time for surgery.

St. Joseph Hospital has won more than one award. Never go to North Fulton Hospital for chest pain. I have heard too many bad stories about North Fulton Hospital. If you have teen?s Centennial high school do mini echoes on teens in the summer and the cost is only $58 The American Heart Association has a heart conference down town in March every year. It?s free and you can register on line in February.

Rebecca

 

[mjd414]

Hi David......welcome to the website that will have a major impact on your lide. I know that sounds strong but in my case that is exactly how I feel. I am 2 weeks post op from AVR, and it is because of VR.com that I had the information I needed to make an edcuated decision on the type of valve I wanted. My surgeon assumed that I would want a mechanical valve since at 54, selecting a tissue valve would mean a probability of having another operation at 70. What he did not know and I did not know until I read the threads on valve selection was my concern with dealing with Coumadin the rest of my life, if I selected the mechanical valve. This is not about making a right decison vs. a wrong decision. This is about making an informed decision based upon facts as presented by the wonderful group at VR.com. You will find out more info on this site than from any doctor or surgeon you go to. REad as much as you can, ask as many questions as you can and make your mind up based upon the issues that are important to you.

Welcome and I look forward to speaking with you again soon..........Sunday at 5PM EST you can join the chat room which is a great way to get to know some of the people on a more personal level while still getting valuable information.

Regards and welcome!
Mark
AVR 7/14/04

 

[dcpickle]

Thanks Mark. Since surgery is definitely in my future, I am also agonizing over what type of valve to get. Mechanical valvers seem to be in the majority, and most seem glad that's what they got. But I do want to avoid coumadin, and that's why I'm currently leaning towards having a Ross procedure. I have requested copies of my latest echo and medical records and I plan on contacting one or more surgeons. I do want to make an informed decision. This community of people is great!

Hi Rebecca, thanks for the information on doctors. I went to see Dr. Yitzhak Hermoni in Cumming (cardiologist) I liked him. The only thing was having to wait so long on my echo report. I'm interested in that teen's centenial high school echo business. I have a 13 yo daughter and 3 younger sons. I'd love to get them an echo just to see if they might have a bicuspid valve, too.

Thanks,
David

 

[Mary]

Hi.
If you're leaning towards the Ross, you definitely need to see a surgeon soon to see if you're a good candidate. Once things start changing with your heart, you could become a less viable candidate.
I have been told that I'm an excellent candidate because the valve stenosis has caused no significant difference in the heart structure or function. I have a time frame of from now to next summer for the surgery. I am trying to be very careful to maintain my heart at it's current level in hopes that I will make it another 9 months before undergoing the procedure. Any indication that I'm becoming more symptomatic and I will go ahead with the Ross rather than waiting.
Anyway, I suggest you see a surgeon. Tell your cardiologist that you want to know your options, and have him refer you. If he acts like he doesn't want to, insist.
Mary

 

[ALCapshaw2]

David,

Since you are considering the ROSS procedure, you will want to interview surgeons who favor them and have a considerable amount of EXPERIENCE and SUCCESS with that procedure. It is a more complex surgery and I suspect MOST surgeons perform very few of them.

Do a Search for Ross Procedure and you will find several members of VR.com who have had it. If you read their posts, you will find a number of references to other web sites dedicated to the RP and a number of references to Surgeons who are skilled at the RP.

It's not too early to start searching for and interviewing surgeons. You can probably even do a self referal, especially if you tell them you are considering the Ross Procedure.

Good Luck in your quest.

'AL'