basic questions to ask with CV consult

[angelo vangeli]

I'm new to this.

I'm 48, after having a TEE and angiogram I was diagnosed with congenital AV regurgitation, dilated LV, and slightly dilated aorta. I will need surgery.

I'm going to my first CV consult next week with a respected surgeon in Long Island and I would like to know what are the basic questions to bring with me.

I've been doing some research and jotted down some questions, however I do not want to inundate the doctor with what might seem superficial questions.

What basic questions should I ask in order to cover everything? Is there a list avaliable of basic questions so that I won't miss anything?

thanks

 

[Peggy in Alaska]

Questions to Ask

Questions to Ask

Hi:

I'm 48, too, and waiting for valve replacement. You could do a search to help find questions to ask and I am sure Nancy or Ross will be along soon to help with your list. You should see my pre-surgery 3-ring binder full of questions.

The thing to remember, is ask all you want. Don't skip anything just because you think it might be silly or useless. There are no silly questions in this business and you are paying the doctors very very well to answer all of your questions.

Happy New Year!

 

[medtronic of borg]

?s

?s

It may help us if you could fill us in on areas of concern, and what you already have on your list.

Med

 

[Nancy]

Hi Angelo-

Welcome to this terrific site.

Some of the most hotly debated questions around here are which valve is best, tissue or mechanical.

They both have great points and drawbacks.

Mainly, the tissue valves usually mean that you won't have to be on Coumadin, but in certain circumstances, you could still be on Coumadin anyway. They will also need replacing in the future at an unknown point.

The mechanicals last a very, very long time, most will say a lifetime. But they can develop problems which need correction or replacing too. My husband has one that's 26 years old. But with mechanical valves you have to be on Coumadin. Coumadin is not the big bad drug that many people fear. For my husband who has been on it for 26 years, it's just another pill to take. It does have its idiosyncrasies, mainly that it fluctuates.

Then there are the different types of surgery. There's the Ross procedure, where the surgeon takes your own pulmonary valve and places it in your aortic valve position, and then replaces your pulmonary valve with a new valve. And theres regular sternotomies (the most common), and minimal incision sternotomies, and minimally invasive surgery through the side. And theres surgery which replaces the aortic valve and the root, or repairs the aorta. I'm sure others will be able to think up more.

So there are a lot of things to discuss with the surgeon.

You have to ask exactly what the plan is for your surgery. It's also important to know that once the surgeon gets in there, things might change. All the tests in the world cannot give every detail.

Once you have the plan, then you can ask what options are available for your problems. Not every option is available for every patient.

Find out how long the hospital stay typically is, and what your surgeon sees as his normal recovery timing, when you will be able to drive again, how the pain will be, what kind of care you will have in the hospital, what things will you not be able to do for a while

Ask around about your surgeon. Get a handle on his skills and reputation.

When you have compiled your list of questions for your meeting, look them over several times, and keep editing it down to the bare minimum. If you can get all your questions on one piece of paper, that's about right. This will allow your surgeon enough time to respond to each question in a thorough manner. If you bombard him with all of your questions, he won't have enough time to give thoughtful answers.

The best thing you can do is to take a crash course in valve replacement by reading as many posts as you can here. There is so much information. Sometimes it's hard reading and scary, but keep on going. You will learn enough to ask intelligent questions.

Start with the personal stories on the Main Page. Then go to Pre-Surgery, then to some of the other forums.

We'll all be here to help you through your learning experience.

Have fun!

 

[angelo vangeli]

To all, it was very nice of you to reply so soon.

Nancy, you and your husband seem to have gone through a lot, and have gained a lot of knowledge in this matter.
You gave me enough bullet points to work with, thanks a lot and I really appreciate it.

thanks for your support.

 

[catwoman]

Angelo:

You have found a great place on the internet. I didn't discover vr.com until I was post-op and looking for a INR home-testing machine. Everyone here understands what you're going through. You can't find that much support anywhere else.

Nancy is a wealth of information, and we have many others here who can help you.

You might want to check archives by going to SEARCH and keying in a subject. I've done that several times.

Again, welcome aboard.

 

[angelo vangeli]

I met with my CV surgeon. I was pleased to hear that my mitral valve will not need to be touched, however, my aorta is dilated and I have aortic valve regurgitation.

Considering my age 49, he recommended a Bentall procedure (Dacron graft root replacement) and AVR with a St Jude valve. He ruled out use of tissue valves. We spoke about Marfan's Syndrome. I do not show signs of Marfans, but my problem seems congenital. The longer I wait for surgery the weaker my heart will get & the harder it will need to compensate for the regurgitation. I have no alternative but surgery. We even spoke about my son, who's 20 and has Marfan's, and how my other twin 8 year old boys should be tested.

Dr. Hartman basically answered all of mine & my wife's questions, and was very thorough. He spent a lot of time with us. Overall, I felt very comfortable with him. I was pleased to hear that he does on average 2 AVRs per day.
We spoke alot about Coumadin, the mechanical valve, the noise, why I can not have mini sternotomy, the incision, the procedure itself, blood donation, transfussion, reclying my own blood during the procedure, post-op complications, recovery time, and how I would feel after surgery. He was very honest.

We are now trying to set a date for surgery in February.

It's kind of scary and shocking for me...considering I've been a "good boy" all of my life...never drank or smoked. I'm not overweight, watch what I eat, have clear arteries, very low cholesteral, I go on the treadmill three times a week. I just feel like...why me? But I have had friends and family with cancer, so I sit back and try and take a deep breath.

I now have other questions that popped up...
What do I do before surgery to make post op easier?
Living with Coumadin, drug interactions with Coumadin, it's long term affects?
What about cardiac rehab? Do I go through this?
Long term results with this Bentall procedure?
Post-op complications...neurological events, etc?

Tough choices, so much life ahead.

just scared.

 

[Peggy in Alaska]

Just Scared

Just Scared

Angelo:

Aren't we all - scared - the ones in the waiting room. I sympathize with you. I never knew I had a congenital defect till I was 45. I was healthy, ran 50 miles a day, didn't smoke. Now I sit and wait for surgery, and worry, and wait, and I am scared. I admit it.

 

[Peggy in Alaska]

Oops

Oops

Wait! Big typo. I wasn't running 50 miles a day - it was 50 miles a week! But be thankful that you will be getting the problem fixed and I hear so many people say how much better they feel after surgery. I know right now, for me, everytime I feel extra tired, or I can't get my wedding ring on because I'm retaining fluids, or I feel a twitch in my chest, I wonder, is there damage going on? It is scary stuff.

 

[medtronic of borg]

?s

?s

The good thing is you are learning and asking ?s...that is the first thing you do . As for coumadin, I don't find it much of a hassel at all. You will need to watch your Vit. K intake. Meaning leafy greens and vegies should be eaten at a consistant rate. I do mean consistant. Rehab yes you will or should go through a program post op. They typically monitor you while you are on a tread mill. As for complications, I am not one to lie to you...there are are alot of nerological concerns. Running the gambit from a little numbness along the scar to a full blowen stroke that can kill you. I've had several very small strokes. Who'd have guessed after 17 heart surgeries! Fell free to pm me if you want.
Medtronic of Borg aka Med

 

[Tony]

Hi Angelo!

Reaction to open heart surgery can run the full gamut from painful to very little pain.

I had an easy surgery, with little discomfort.

I think the better your physical condition is prior to surgery the easier it is for you.

I did have a feeling of being lightheaded from week 6 to week 12 post surgery. That cleared up on its own.

From your post, I finally found what "Bental" is. It was written on my hospital discharge papers, but no one ever gave me an explanation of it.

I am sure you will do just fine.

Tony

 

[Tony]

Hi Peggy,

Yes 50 miles a week is more like it!

Do you have a date scheduled for your surgery?

Tony

 

[Peggy in Alaska]

Date for surgery

Date for surgery

Tony:

No, no surgery date yet. Will see the cardiologist this summer for my checkup. She put me on a 2 yr. recall after my great checkup in 2002.

 

[hensylee]

Hey Ange and welcome to VR. You need to stick in here and get all your questions answered and then you will be well informed and educated before you go in for the surgery. So much to share here. So many members and all have information for you. Glad you are here early enough to find out.

 

[angelo vangeli]

thanks all
I'm glad I found out about this site, you've all made me more comfortable, and all have been very helpful. I seem to have obtained enough info to relax & just go through with this surgery.
I'm going to not think about it much until that date.

I'm working with the doctor for a date in the last week of February.

Still haven't told my job yet...just hope they are supportive.
Still need to find out about company disability pay & how I go about getting vacation time also applied to my recovery time.

My regular doctor recommended that I do set up for cardiac rehab, I hope my insurance company covers it.

 

[LKC]

Hi Angelo.

I guess it's usually something of a shock to be told you need heart surgery, especially when you're pretty young like you. I got the word when I was 51, and was awfully surprised; it took me a while to really believe it.

Another surprise was a phone call from my heart surgeon's office about 10 days before my operation: my doctor had been in an accident while riding his motorcycle and broken his leg. Of course, my first thought was, "Riding a MOTORCYCLE?????" But I decided to wait for the Leader of the Pack to recover, and delayed the surgery for a couple of months. So unlike many of the folks on this site who have gone from carefree innocence to the operating table in a week or two, I had plenty of time to get obsessive about the upcoming experience, and to try a lot of things to get ready for the operation. A few of the things were helpful I think, so I'd like to share them with you, as it seems you will have some weeks before your surgery.

1. Keep up your exercising (if your doctor allows it). The better physical shape you are in when you go into surgery, the better you can tolerate things. I actually began a walking program in the two months I was waiting, and really improved my aerobic conditioning. It helped a great deal in my recovery.

2. I heard about this book, Prescription for Nutritional Healing (they have it in every bookstore and most drugstores in America) and it has vitamin regimes for different medical situations, including cardiovascular disease and "preparing and recovering from surgery." I didn't take everything it recommended, but the things I did take I think helped out, especially the magnesium, MSM, and coenzyme Q10. (Get docter approval on this one too).

3. I read a book called Healing from the Heart, by Dr. Mehmet Oz, a heart surgeon. I don't remember much about it now except that it had a bunch of inspiring and interesting stories, and I felt good after reading it.

4. I listened to the guided imagery tapes for people that are facing surgery. I got the ones by Belleruth Naparstek (healthjourneys.com), and others on here recommend Diane Tusek (guidedimageryinc.com). This was one thing I originally regarded as probably foolish, but I really came to believe in it. I just listened to them every night for three or four weeks before the surgery. They were great for putting me to sleep and somehow they had a subconscious effect on me, so that I was totally relaxed from the moment I stepped through the hospital doors.

Those are my suggestions. Good luck to you.

Landon

AVR - January 2002

 

[angelo vangeli]

Landon
I'm just curious...how are you now after the AVR surgery?

thanks for your input.

Angelo

 

[LKC]

Angelo,

I was very fortunate - the surgery went well, I had no complications, was home in 5 days, and never had any serious discomfort (all credit to Percocet). I took the "standard" 6 weeks off from work to recover, but it was about 6 months until I felt pretty much back to normal physically (even the scar has faded almost completely - daily application of cocoa butter once the incision healed). Since I received a tissue valve, I don't have to take coumadin, and I find that the routines of my daily life are exactly what they were before the operation. I have no limitations on activities, and I don't think I had much, if any, emotional trauma from the whole experience.

I see that you are going to receive a mechanical valve, but as you probably have read, virtually everybody on this site who has a mechanical valve does not find the coumadin to be a problem.

By the way, I also had dilation of the aortic root, and although I did not have a Bentall procedure, I did get part of my ascending aorta replaced with dacron. I also had a dacron patch sewn into place inside my heart to cover a hole in the septum. So, although my surgery had some unusual and tricky aspects, it turned out to be a relatively benign experience from my perspective.

I hope and trust things go as smoothly for you as they did for me.

Regards,

Landon

AVR - January 2002

 

[Bryan B]

Landon,

Just curious, was it a VSD you had patched? This is one aspect of my upcoming surgery that I have yet to research. The only thing my CV surgeon told me is that patching my VSD rules out the option of a minimally invasive procedure and that there is about a 5% chance that the patch will interfere with the conduction of the heart. If that were to happen they would have to insert a permanent pacemaker.

 

[LKC]

Bryan,

It was a VSD - but it never showed up until my last echo and TEE - until then the only things I knew about were a bicuspid aortic valve and an aortic root aneurysm. I did not focus much on the problem, and understood that the doctors would look at it during surgery and do anything that was necessary to take care of it.

The operative report says it was a "diverticulum post ventricular septal defect," and also says was like a "membranous septum aneurysm." When the doctor looked at it during the operation there were a lot of holes in it, though it looked like the tricuspid valve (or one of its leaflets) had closed them off. The surgeon closed it all by sewing in a large pericardial patch before replacing the valve.

I was not aware of any issue regarding conduction.

Good luck with your upcoming operation.

Landon

AVR - January 2002