It's all the Doctor's Fault

[ALCapshaw2]

Several things come to mind after reading your intro Chris.

First, do you have copies of ALL of your Echocardiogram Reports? If not, GET THEM. I like to put all the important parameters on a spread sheet for easy comparison. To my mind, finding changes in YOUR parameters is much more meaningful than comparing to the stardardized "Norms".

Second, another alternative is a TransEsophageal Echocardiogram (TEE) which produces clearer images since the ultrasonic transducer is placed right behind your heart via your esophagus. Some people find this test 'unsettling'. If you don't want to know or remember anything of it, just tell your Doc and he can administer more Versed which can put you anywhere from "I don't care, can I watch" (the usual dose recommended for a cath by the way) to "I don't want to know or remember anything". They will spray the back of your throat with some YUCKY tasting anesthetic to help block the choking resoponse. When the results of my TEE matched the results of my Cath, I was informed that "It is Time".

Third (and possibly your #1 FEAR) is going through the Heart Cath. I remember my first (I've had several) and I was FREAKED OUT about doing it. I watched the video 3 times (provided by the nurses before the procedure). When it was all over, I had one of those "Is that all there is" kind of experiences. I actually ENJOYED watching the catheter as it was positioned around in my heart. The worst part is laying flat on your back for X hours until the puncture is healed enough for you to move. The techniques keep improving and with plugs or stitches, you can usually get up and about in a couple of hours.

Fourth, YEP, facing Open Heart Surgery has a way of getting one's attention, no matter how well we were prepared for that prospect. I'd say EVERYONE has that same feeling. Some come to a peaceful acceptance just before they go into surgery, especially those who are symptomatic or those who realize that is the ONLY way they will Get Better and go on to life a healthy and productive life. I hope you are able to reach that state as well.

Best Wishes,

'AL Capshaw'

 

[DeWayne]

I can totally understand the long "wait" that you get when you are told at one age then year after year you wonder when it will be time for "IT" I had surgery when I was 5 for my bicuspid valve, it was repaired at that time. When I was 10 the Doctor told me upon one of my checkups that I would eventually have to have it replaced, probably by the time I was 35. Well that day arrived this year. At age 52. When I went to see my cardiologist (ok I neglected this for many many years!) I already knew what they would say. I knew probably last summer it was time, but still put it off till I developed a heart arythmia early this year. I told my wife it was time, she needed to set up an appointment. I went in, had my first echo (I told you I ignore this a long time). Then met with the cardiologist and she said "You need an operation and it needs to happen in the next 6 months". I took it in stride, as it was what I expected. I didn't however expect the aortic aneurism. It was not something I knew could happen, and IT was the reason I needed the surgery. I was dialated at the root to 5.8cm 5.4 farther up. My wife got pics from the cath, Cardiologist told her, "his Aorta is huge". Well surgery took place 11 weeks ago, I can honestly say I am starting to feel like it never happened at this point. It went that well. Other than still a little weak in upper body due to no lifting of anything and little physical activity other than walking walking and walking. Heart rate is still a bit high, but normal for this stage. But I feel terrific and my plans for next week are to go to the driving range and see how it feels to hit some golf balls and if that goes ok go play a round of golf in the next couple weeks.
I think attitude and acceptance of what lies ahead has a lot to do with how well YOU do. THe best thing about it all is life goes on, much better than the alternative. So prepare yourself, make your decisions on valve type etc then relax and take things in stride and put your efforts towards getting better afterwards. It does get better!

 

[Marguerite53]

Hello Chris! Welcome to this fantastic community.

I was born in Alexandria and raised in Silver Spring. I'm now on the west coast, but I do know one thing....... you have a lot of great hospitals where you are and you will most certainly get very experineced and first class care.

You can see "who" I am from my signature, so I won't go into my story, except to say that without this site, I would have surely gone nuts! It is very wonderful to vent, ask, whine, run screaming from the room and back..... and never be judged or scoffed at. So come here as often as you like, and don't be afraid or shy to get your feelings heard and your questions directed towards an answer.

Hang in there. It's gonna be fine!!

Marguerite

 

[kingpeta]

Chris,
Welcome to this site. I haven't posted in a while as I've been busy living my life! It's been 1 year and 4 days since I had my aortic valve replaced. Just passing my one year anniversary has had me thinking back to where I was 1 year ago.

I learned of my bicuspid valve when I was about 22. (I'm 46 now). Back then, my cardio told me that I'd probably have to have it replaced "sometime when I was 70 years old". I pretty much forgot about it and was happy to go on without much thought of it. I tend to like to procrastinate! Well, same as you I was shocked when a routine echo started "the event". I couldn't believe it when my cardio said "I'm going to recommend a surgeon". This was the worst possible course of action, wasn't it? I felt fine - without any symptoms. How could I need surgery? The fear is real but luckily there are sites like this to offer support and most importantly answers to your questions.

I gotta say, it's really not that bad! Once I knew that surgery was needed, I had more problems going through all the tests than the surgery itself. I had never been in a hospital all my life even for anything minor. Never broke a bone. The only stitches were from a small lump removal in my forearm. So this surgery scared the hell out of me. All I could do was learn as much as possible and put my trust in God.

For me, it helped to realize our state of medical knowledge. There are over 250,000 people getting this done every year. If you have an experienced surgeon (if you don't - find one!) you have such excellent chances of great results. The tests suck but the surgery will be handled in a professional manner and you'll wonder why you were so worried. You will get through it, your valve will be fixed, and you will be stronger for going through it.

I can't stress enough the importance of a positive attitude and to arm yourself with all the information you can find. I think many of us here astound our doctors with the questions we ask! Do your homework and convince yourself that you CAN endure this!

Sorry for being long winded, but your story sounded so much like where I was a year ago. Today I can do anything I want to. Yes, I take 7 pills a day for various things but so what? I'm alive and well and frankly I think I enjoy myself more now than before surgery. BTW - don't buy into any of those Coumadin fears. So you bleed a little longer than most. You ain't gonna die from a cut finger!

Take care, keep asking questions, hang around this site as much as you need to!

Pete

 

[musician2k]

welcome

welcome

Chris - I'll echo everyone's comments here in welcoming you. This is never easy but this site is a wonderful place to be for resources and support regarding this difficult time in your life. My situation is very similiar to yours - bicuspid AV (which my surgeon said was really unicuspid when he took it out) - and I had OHS in July of this year (2006). My echo in 2003 showed that my aortic valve had actually *widened* some - obviously a false report as a different echo showed in 2006 that the valve was MUCH more stenotic and my doctor feels this would be highly unlikely; I probably had a false "good" echo in 2003. The cath however showed the REAL story...a VERY stenotic valve and an aneurysm that was larger than the echo showed, to boot. The cath was painLESS, and I mean I didn't feel a THING. It's truly the diagnostic tool of choice in these situations. I wish I could say the OHS was painless and that things went smoothly but, I did have some bumps. However we got over them, and doctors & nurses are professionals who will work with you to get you through this. Simply doing nothing is not an option, and I'm glad I had the OHS now and am in cardiac rehab feeling much better than I did for several years prior to the surgery. Best of luck and feel free to write with any questions - PM me here or via email.

Chris

 

[KAJ]

Chris,

I can really relate to you. There is never a good time for any kind of surgery. I was in the waiting room for about 4 years. I had an echo every 6 months and also felt very anxious each time with the exception of the last time when I when I was unexpectedly admitted into the hospital. The echo showed it was time for the valve to be replaced. A heart cath the following day confirmed the echo. In addition, at that time, I was only 3 classes away from completing my Masters degree, talk about bad timing.

I am glad I had the surgery. It is now behind me. I took a year off from school to recover. I just completed my degree and am waiting for the "official" word from the college that I have in fact completed all of the requirements for the degree.

As I believe others have stated before, sometimes the wait is harder than the surgery. If and when you have to have it, going through wiith it will most certainly be worth it regarless of how inconvenient it may be at the time.

Karl

 

[Chrish]

Thank you all for the kind words and comforting thoughts. A special thanks to barbwil for catching my tongue and cheek remark. For those of you who are familiar with "Friends" I, like Chandler Bing, rely on humor as a means to deal with stress and uncomfortable situations.

Having read through all of your posts, I am feeling much better, at least not as anxious. I'm still waiting for the hearth cath to be scheduled and I guess we will go from there. Regardless of the outcome, I will absolutely stay on here and keep the group posted.

Thanks again all!!

Chris

 

[Mama2Rylan]

From all my experience dealing with cardiologists and surgeons, they never seem to tell you what you want to hear right away. I don't know if it's because they don't want to scare you if it's not necessary or because they are trying to cover their butts (i'd like to think it's the first one ) but just try to take it easy. Stress is never good on your heart no matter when it is. I have to agree with the others when they say that the cath is really not that difficult of a procedure. I actually had a balloon valvoplasty (which I think is pretty much on the same lines) and that wasn't so bad (AND i was over five months pregnant). I also don't think that anytime is a good time to hear that you will need open heart surgery. No matter how long your prepare for it, when they tell you things are not looking so good and it's about that time, it hits you just the same. The thing that got me through all of it was knowing that when it was done, i'd have my son to go home too and I would be in top condition to care for him, and that would make me a better mom. It is so hard to deal with this when you have children, but that just gives you more incentive to give it all you got Take care, and keep us posted!

 

[marky]

You are not alone
This is a great site, and you have already received wonderful information and support.
Welcome, and climb on board and ask away! If someone doesn't know the answer..they will find someone who does!

Take a deep breath..you will be ok.

 

[Karlynn]

I, like Chandler Bing, rely on humor as a means to deal with stress and uncomfortable situations.

There's a reason they say "Laughter is the best medicine." And then there's that old saying "If I wasn't laughing, I'd be crying." I've found that to be so true as well.