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Chris37

In September I will have two valves replaced. Prior to this operation I have never had any major problems with my health. I've never even broken a bone.

What has really shocked me about this process is the incredible lack of information I have received about my situation from my cardiologist and surgeon. 90% of what I know about this process, I've learned from this and other websites. If I hadn't taken the time to do the research I would be virtually in the dark about what was going on.

For some time I was planning to get a mechanical valve until I learned (from the web) that I would have to take coumadin for the rest of my life. Since this drug requires a major lifestyle change for me that I'm not comfortable with I have decided to go with a tissue valve. My doctors never brought this up. I would probably never would have found out about it from them until after the surgery.

When I met with my surgeon he conducted the appointment in the lobby of the hospital with five other patients lined up behind me. I realize these are busy professionals, but I haven't even gotten so much as a pamplet from them. The doctors have told me that the operation is no big deal. They treat this as if I'm getting rid a cold. I understand that after 30 years this is routine to them, but for pete's sake give me something to go on.

Since my condition was found through a routine medical exam (that I initiated), there has never been a reason for me to suspect any problems, so how would I know what questions to ask?

It just boggles my mind and has caused me to lose some faith in the medical community, and it makes me feel really alone.
 
The surgeons that are the best are very, very busy. They have limited time to spend outside of the operating room. That's why most cardio/thoracic surgeons have programs run by their PAs, nurse clinicians or other staff personnel to prepare people for this important surgery.

You might call your surgeons office and inquire about such a program.

Hank has done every valve patient a great, great service by conceiving and executing this wonderful website.

So welcome to the site and ask away. There's fantastic info. here from those who've walked the walk.

We'll all welcome your questions and will do our best to give you honest answers. Best wishes!
 
Chris37, I had a similar experience. I had prepared a whole bunch of questions and then my surgeon didn't even show up. I realize there could've been an emergency, I take no issue with that.

What made me uneasy is he sent this resident guy who really scared me. He sat and read my file for 5 minutes right in front of me and then asked if I was considering going through with the surgery!? (If I didn't have the surgery, I would be dead in two years)

I then asked my questions and got grade school answers. My wife, who is the assertive one in our family, asked him in a really nasty tone, if he would be doing the surgery. I had to hold back a smile. Sometimes she embarrasses me by yelling at mechanics, sending back food - this time, I gave her a hug.

I came to realize what many people do after a while. We are responsible for understanding our condition, our options and our own health-related decisions. You've obviously already figured that out a while ago, but it sure came as a shock to me too.

It's disappointing, but remember - you're not alone - you've got us!
;)
Kev
 
Hi Chris37,

Welcome.. Glad you found you way here. Everyone here is so helpful, all you have to do is ask.

I didn't have the pre-surgery questions to have answered due to the emergency nature of my situation. But, I did have many post-operation questions. I made a list of my questions, and faxed them to both my surgeon and cardiologist 1 week before my appointment. Guess I was lucky because all my doctors responded to my questions when I went in for my visit.

I hope you get all your questions answered and obtain a postive attitude of the direection you choose for your operation.

Rob
 
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General Comment

Hi Chris37

First, let me wish you well on your upcoming procedure. I'm sure you'll do fine.
I was suppose to have my mitro valve repaired . I was born with a defective valve which was leaking badly. I told the surgeons if they couldn't repair it, I wanted a biological valve. I knew I didn't want to be on blood thinners . At that time I didn't know what the full impact of blood thinners were. I didn't know I would have to alter the things I ate and other lifestye changes, they told me I could eat and do what I wanted and not have a problem. Yeah right. They had me so scarred I couldn't think right. They didn't provide any real information to me until after the surgery. They told me if I didn't take the operation ASAP I would be dead. I was so concerned about living so I could see my daughter graduate from High School. I took the surgery and woke up to a new life. The surgeon had implanted me with the St. Jude's Mitro Valve. They said if I take care of myself I will never have to be operated on again. That is a plus, the downside is coumadin. A synthetic valve is not the end of the world . You can live with coumadin. I can eat some of the things I like, in moderation without any real difficulty. Believe it or not you can adjust. I hope this helps.
Doris
 
Hi Chris and welcome to our house. You have come to the right place to find out what questions to ask and you can also get answers here. All you gotta do is read. My cardio gave me a tape to watch before my bypass - and I couldn't digest what it was telling me, even tho it was fairly informative - it was all so foreign. Therefore, AFTER my surgery, to my surprise I was stapled hither and yon, chest opened, had wires holding my chest til it healed and had those damn tubes. What a shock, so please get informed before you go. I had an excellent quick recovery and after a month at my cousin's home for that recovery, I came to my home, got on the internet, found this site and even tho I didn't have a valve replacement, everybody was wonderful and answered all the questions I could present - found out some of them were just as ignorant as me before their surgeries. We just don't know what to ask! So hang with us, go into the different sections (esp Heart Talk) and get an education. God bless
 
Double valve replacement

Double valve replacement

Hello Chris37,
Welcome to the site, and consider yourself
lucky to have so much info and support at your
fingertips. I had my aortic and mitral valves
replaced over 3 yrs. ago, also at the age of 37.
At the time I was told that a tissue valve could
not be implanted in the mitral position, therefore
the surgeon recommended both St. Judes mech.
valves as they would be the most durable for a
person still young and active. Coumadin would
need to be taken, and that was'nt a problem as
I was already on anti-coagulation therapy for
atrial fibrillation. As you will find out from
other members here coumadin is'nt such a big
deal. The main thing is to be fairly consistant
with your diet. I really have'nt changed my
activity level or diet much, just don't eat a
lot of greens all at once 3 days in a row etc.
Still drink alcohol, but am consistant with this
also.I try to be careful about getting cut or
bumped real hard, as I'm in construction, have'nt
had any major problems yet in 5 yrs. on coumadin.
I don't know what your options are about valve
type in the mitral position, others here can help
with that question I'm sure. I also never needed
a doctor before all this, and yes this is all
routine to them and you can't expect any personal
service from them, but you still gotta respect
them for having the knowledge and skill to fix
you up, and keep you alive for a longer time than
you otherwise would have. Keep visiting this site
and plenty of great people will walk you through
your upcoming surgery, to the "other side of the
mountain", and beyond.
Mike in Florida
 
Hi Chris. I've had a relatively more positive experience with my surgeon/hospital, but then again I am a hospital manager and know the scene, etc.

However, in all cases, we must look out for ourselves. This website and others is a Godsend. Surgeons are good for one thing, but they are not undergoing what we are. They help, train, and prepare each other for what they do, and we must do the same among ourselves for what we do, that is, undergo valve replacement surgery!

I have found that you only get really good attention and answers from your surgeons when you've done your homework and that becomes clear to them by your questions and your comments. Some may not like that, but then perhaps you should find someone who does.

If I were in your situation, I would inform myself as well as possible and then insist upon proper and sufficient attention from the surgeon/hospital staff. If not satisfied, I would go elsewhere, if possible. That is not always an option, or desirable, but, knowing from the inside the difference between good and bad patient care, what you have described does not sound satisfactory. In the division that I work with, we are very concerned when we hear accounts from our patients such as yours and know that we must make changes, or we are not fulfilling our mission.

Hope all works out for you and that we can be of some help to you here. Good luck and Godspeed!
 
Just thought of something to add.

I always go into my visits with doctors/surgeons with a prepared written list of questions. Usually, I get satisfactory answers even when they are impatient and want to move quickly through the encounter.

However, I generally get the best and most patient attention (pardon the pun!) when I call up the doctor with a question for him/her to provide on a return call. These discussions over the phone (for which they have been able to prepare somewhat) have always been far more fruitful than actual clinic visits.

By the way, such conversations generally always have to be logged and recounted officially in your medical records.

So, you might try that approach and see how it works for you.
 
surgery and 2nd opinions

surgery and 2nd opinions

Please get an another opionion. They're may be a different surgeon that you would be more comfortable with. His skills and bedside manner and support are very important. I'm recovering from surgery and had the Ross. My surgeon was the only one in the area to perform it. I did lots of inquiry on the web and with these folks and then asked more.

Cardiologist are more apt to talk to you about the blood thinners and meds and the surgeon concentrates on cutting and fixing.

Lots of stats out there and many choices.

Good Luck
Leslie
 
Learning, health and recovery

Learning, health and recovery

Chris,

Your concerns and the replies above are really critical, I think. I second what Steve says about needing to be prepared and sometimes to "crowbar" the information out of the health professionals. It's true, as others have said above, that they are very busy and the best are even busier. At the same time, I would include in my defnition of "best" someone who sees the patient education and participation function as an integral part of their job -- even if time constraints mean that they have to delegate a good part of it to a competent associate (with a good "bedside" manner) and/or set up other systems to inform their "clients."

Come to think of it, one of the best of those systems might simply be for the surgeon and cardiologist to refer the patient to this website or a handful of others like <http://www.myrossprocedure.com>. Problem is, I have found some cardiologists and surgeons to roll their eyes when they perceive that the patient is doing their own research on the net.

And this includes some otherwise very competent and copasetic folks. I was discussing matters with one of these professionals, who happens also to be a personal friend, but who does shade a tad toward the "medical prerogatives" side of things. I asked him if there weren't studies showing that heart patients who took an active interset in understanding their own condition and in weighing alternative treatments in fact reacted better to treatment and healed more quickly than those who didn't (or who didn't think they were permitted to), other things being equal. He allowed as how in fact some studies did demonstrate that "feisty" patients (his word for those who go pro-active, I guess) have better recovery rates than passive ones, though he pointed out that the finding might be attributable in part to the fact that these patients also tend to be people who are scrupulous about taking their medications, doing their exercises, eating right, etc.

I greatly respect medical competence and stand in awe of the progress that the human race, or at least the better-heeled segment of it, has made in diagnosis and treatment over recent decades. But it does seem to me that our medical personnel needs to be better educated in these areas, and we may have to be the ones to do it. There come times when, as the saying goes, if the followers lead, the leaders will follow.

Peter
 
Physician paternalism

Physician paternalism

I just posted a substantial comment about physician paternalism in response to Peter's post and somehow when I submitted it, I was logged off instead. This was not a problem with my computer, nor the on-line connection, since those have remained intact. I'm going to ask Hank if there's anyway to save our posts before sending them so that we don't lose comments like this.:mad: :mad:

Don't have time now to reconstruct it, will try later.
 
sr, I've had the same prblm with my ISP knocking me off the net when I am trying to submit what I have just written. Frustrating, isn't it? Maybe there's an answer for us folks who live in the 'back country' - not you, me.
 
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