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A

AnnieShannon

Member
Joined
Dec 29, 2010
Messages
14
Location
Arizona
Hi all,

I had a very bad case of bacterial sepsis in 2005, which left my aortic valve damaged. Up until that point, I was a very healthy active 35 year old woman. Originally my AI was considered "moderate", until my check up with the cardiologist a couple of weeks ago - and he said that I was now in the "severe" category. He scheduled a TEE for Monday the 3rd of January, and said it might be time for surgery.

I've been symptomatic since the onset in 2005, but they've had me on Toporol to keep things "under control."

I've not been real crazy about my cardiologist, and actually saw a new doctor (from the same office) for this last echo a couple weeks ago. My original doctor just told me I was young, and that I was lucky to be doing as much as I was... and "I'll see you next year." I never could get him to listen to me regarding the symtoms, even though they were making it difficult to lead a normal life. :mad2:

Let's hope this new doctor is able to help, and although I'm worried sick about the TEE (does anyone have any words of wisdom regarding this test?) hopefully we'll get some useful information - and can decide what to do from here.

Thanks for listening (my family is having a hard time with the whole surgery thing, and talking to them is... well... difficult LOL)

Annie
 
Welcome Aboard Annie.

YEP. Ditch the Doc who won't listen to your concerns.
He's not worth wasting your time (and money) on.

'AL'
 
Welcome, Annie. I agree with AL. It is so important for you to have a cardiologist you trust and who listens to you. Get a new one ASAP. He/She will be taking care of you after your surgery and for years to come, so why not have one that you like?

RE/ TEE--It's not that bad. Just make sure they give you enough happy drugs, and it will be fine. I was too alert for mine, and I remember every minute of it. Next time I will request more sedation. The worst part is the icky tasting banana spray they use to numb your throat. Your cardiologist will do the procedure usually, so again--find one who listens to you.
 
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It's interesting really - the more of the threads on here I read, the madder I get. I was really made to feel that the symptoms I was experiencing were mostly "in my head." I'm finding threads on here that describe a lot of the different symptoms I've had!!

The last time I saw him I was experiencing some tightness and discomfort in my chest. It hurt, and I didn't like it. I went in for my yearly echo, and he told me that the discomfort was most likely "heartburn" and that he'd see me in two years.

When I went in a couple of weeks ago, and saw another doctor from the same office, the first thing he asked me is why I had gone so long between echos. I told him ask the other doctor, and it should be in my file. He said I should NEVER go that long between check ups. Nice, huh?
 
Hi Annie and welcome to the forum! So glad you found us and hopefully we can set your mind at peace.

First off, thank God you finally found a cardiologist that listened to you and paid attention to your symptoms. There are alot of dummies out there, unfortunately for us, like the doctor you had, that have no clue what was going on. And no, the symtoms were NOT in your head but bad doctors can sure make you think that!!!

As for the TEE, I would not waste precious time worrying about it if I were you. I found it to be one of the easier tests I've undergone. They give you a sedative before the procedure, numb your throat with a spray in order to make it easier to insert the probe to look at your heart. It does not take long and it will be over before you know it!

I know you'll do just fine, so don't worry! Make sure to let us know how it went!! :)

P.S. I see you live in Arizona.....we're practically neighbors!!! :)
 
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Hi Annie, welcome to our funny farm. :D I echo the others that you definitely need a cardio who will listen to your concerns and take them seriously. Hope you now have one you trust.

Amazingly, I've never had a TEE even though I've had about every other test. I agree with the others about telling the medical folks your concerns and using the "happy drugs" to help get you through. I think Norma has given wise counsel about it not being so bad. I remember dreading the cath, but it was easy other than having to lay still for some time afterwards.

We're delighted to have you here. Express you conderns or ask questions any time, and you will find voices of experience in reply.
 
Hi Annie and Welcome.

I, too, worried a lot about the TEE and was so sorry I wasted the energy. It was a snap for me and absolutely no pain, discomfort or after effects. When they said they were going to give me a 'little something' to relax me I responded, 'what's with the little bit'? Give me a lot. I said it in a light spirited voice but I think they knew I really meant it. They gave me the versed and whatever pain med and I remember almost nothing which is just the way I like it. In this heart journey, we have to advocate for ourselves IMO

The most important choices you make are the skill of the surgeons, interventionalits, cardiologists etc Make sure whoever is doing your TEE and probably cath, are highly experienced. It makes a big difference.

Best Wishes. Let us know how you are doing.
 
Welcome Annie,

So sorry you are having to go through this, but you've come to the right place!

I have never had a tee, but from what I hear it's not a problem. I think Norma gives some very good advice.

Please ask any questions you can think of. If you need to sound off on any fears, or anxiety you may be experiencing, (which is perfectly normal) please do so, that is why we are here!

Good luck to you and keep us posted.
 
Hi Annie,
Welcome. I too will add my encouragement that you should ask every question you feel in your gut. If the doctor's answer isn't clear, ask again. I am getting ready to change cardio's cause the one I have presently and myself are not on the same page. As far as the TEE, it won't be bad, but as most have already said, get the good drugs. It will be over before you know it and you won't truly remember much of it. Keep us posted, we are here to listen and support you.
 
Annie, welcome to VR. I feel pretty good about my own Cardio but even so, he too downplayed my early symptoms but when I mentioned pain in the chest he immediately made an appointment for me with a surgeon. Seeing another doctor is a must if your former Cardio is not listening to you about how this problem is constraining your activity.

As for the family, my family wanted to go nuts over my up coming surgery with many of them acting as though heart surgery is one of the most terrible things that could happen to a person. Many of them behaved as though the valve replacement was the next thing to death itself. It made me scream! I finally got some of them quieted down by repeating the facts about heart surgery today - that it is one of the safest and that the risk to a healthy person is very low while the result is very good. I then told them I only wanted my nephew and best friend to be at the hospital and arranged with those two to keep the rest informed; otherwise, more than a dozen would have camped out in the waiting room. I think some of my relatives were a little disappointed when they visited the hospital a few days later and found me looking better than I had in well over a year. My sister-in-law said "why, you don't even look sick!" After that, they pretty much lost interest. Try to get the point across that it is not surgery that is awful thing that is happening but, rather, the progress of the disease.

Annie, let us know how we can help.

Larry
 
Hello and welcome--I'm glad you found your way here. Thank goodness you found a doctor with his brain plugged in!

My husband was in denial about the AVR in my future for several years, but when the cardiologist said "...within two months", he started coming to appointments with me and taking notes. But before and after that, reading here was my best source of comfort.
 
Wow. You all are amazing. Thank you so much for your kind words! I swear one of the hardest things with this "thing" is feeling like you are dealing with it on your own, with very little or no information from your doctor. I've spent a lot of time knowing something isn't right - but not knowing exactly what, or exactly what I should be doing about it. I have a MILLION questions, and I will probably wear all of you out with them... so I'll try to contain myself. LOL

I'll try to quit worrying about the TEE, and I will make sure I try to schmoo them into giving me plenty of the good drugs. I have a terrible gag reflex, and I just know I'm going to have a hard time with the probe in my throat. I have to be at the hospital at 9:00, procedure at 11:00 - and home once I'm awake enough? I'll let you all know how it goes.

I guess the first really big question I have for all of you is at what point does the AI become surgical? I've read everything from "when your left ventricle starts to enlarge" to "anytime you have symptoms"... and I just am not sure how I went from "I'll see you in two years" to "you need to have the TEE within the next couple of weeks." After the TEE, then what? Is there some magical equation they're going to look at to see if it's now... or next year... or what? The doctor definately said that I would HAVE to get my valve replaced, but the "when" is the big question? I am confused. LOL (and a little scared)

I am really really TIRED of being tired all the time, by the end of the day I am wiped out... and I'm asleep on the couch by 7:00 pm. My poor husband, I'm sure I'm a really joy to be around in the evenings LOL. The pounding in my chest drives me crazy. If I sit real still, my whole upper body will rock back and forth with my heartbeat. It's the weirdest thing I have ever seen. The being out of breath is a little weird for me though. In the mornings... I am GOOD to go. I have even been spending some time on the treadmill, trying to get my body at least a little bit in shape. But in the evenings? I can be laying on the couch and be out of breath. What is that all about??? Talk about making me think it's all in my head!!
 
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Annie -

The above is a very good description of how your health is impacting your life.
I recommend that you print it out and show it to your Cardiologist (and PCP).

It sounds to me like you would 'probably' benefit from surgery
(assuming the problems are caused by your heart).
You will know more after the TEE.
Then you may want to start interviewing Surgeons to find one who has experience dealing with your specific issues and that you feel comfortable with.

It also sounds to me like you are ready to do whatever it takes to 'get your life back'.
That is a Good Thing !

You can do this, just as the rest of us have.

'AL Capshaw'
 
Hey AnnieShannon

Any one who spells like a second grader is alright by me. I'm still working on the Tip and Mittens grade school readers! We are seriously a mixed bag of characters, who care for and seek support from each other. You will love it hear. Who else understands us?

I like you, are also considered severe. Only difference is, I'm riding my horse down the home stretch. You will soon be out of the starting gate with a new Doc and WILL get yourself done up as you choose.

You must be a good cook, is that why your family is struggling with surgery and rehab!? LOL! Say no to, "take-out"!

Good luck!
 
Hi Annie, I'm 42 and have known about my bicuspid aortic valve all my life and that I'd need replacement surgery when I was 'about 40'. I've been having yearly echos for about 15 years and my cardio had a watching brief on me. My symptoms are definitely fatigue - I'm tired no matter how much sleep I get - and I puffed on exertion. My cardio once told me that I'd really know things were bad if I couldn't make it to the letterbox. i'm not quite at that stage yet but a combination of my symptoms - but more my measurements from angiogram and echoes have prompted my surgery date on Feb 22. I'm also having a stress echo (on a treadmill so they can see heart's response to exercise) on jan 17 before seeing surgeon for the second time.
This forum is FANTASTIC. I love reading about people's (mainly positive) experiences. If I'm feeling worried about it (which I generally am) I can usually find the answer or somebody worried about the same thing. The best thing is reading how good people feel just a few weeks after surgery.
Keep us updated ... Cheers, Alli
 
AnnieShannon/Annie, a heart felt WELCOME to our OHS family glad you are getting the information that you are seeking and there is swealth of knowledge here for the future .....


Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf
 
Yeap... This looks like it's going to be my new online home. LOL

A healthy dose of sanity and support. Exactly what I need when I'd really like to drive myself nuts with worrying about all the "what ifs."

Thank you all so much for being there, you have no idea how much I appreciate it... and you guys don't even know me! (yet :p)
 
hi annie! welcome :) i know how you feel! i always feel like my doctor thinks my problems are in my head. he has even told me the stress of my two children are causing some of the problems. not what i want to hear! good luck with your journey you will find lots of help here!
 
Some doctors have terrible bedside manners, so to speak. Some are so rushed by a jambed up list of patients to see in one day, that they cannot be bothered listening. So there are those, if you are lucky to get a good one, to listen and do something for you. They are not all bad, just hard sometimes to get with the good ones. If I was you, I'd stick with the new doctor, if possible. Sounds like a good one. But also do what has to be done to make sure of what is going on with the heart and take care. You are doing the right things. Education is the best kind of medicine. Welcome for coming in and keep visiting and getting education and advice. We are here for you.
 
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