Need some help.

[Karlynn]

Just got home from rehearsal tonight to listen to a voice mail message from my cardiologist. It was the ol' "good news/bad news" thing relating to my echo of last Thursday.

The good news is my St. Jude mitral valve is doing well.

Then the bad news - kind of like walking into an open kitchen cabinet door -
My aortic valve is leaking "somewhat" and my heart is "sticking" a little bit because of that. (I'm assuming this is the arrhythmia I've had an increase in, but I'm not sure what she meant by that word))
Also my heart is slightly enlarged.

As I said, this was voice mail, so she wasn't speaking in technical terms. She told me to call her tomorrow so we could talk about it.

To say I'm somewhat stunned is putting it mildly. I could really use some help here in knowing what questions to ask her when I call tomorrow (Friday). It's been such a long time since I've had to worry about measurements and all the valve stuff you get in to before and after surgery.

To say I'm also thanking God right now for bringing VR.com and the family that goes with it into my life is also putting it mildly. Just didn't think I'd be needing you guys in this way so soon after joining.

Well, I'm going to go have myself a nice pitty cry.
Karlynn

 

[LUVMyBirman]

No crying!

Karlynn...you need more specific details! Did they hear anything, murmur, etc up stethoscope evaluation. How do you feel?

Who do you see in the area? Really surprised they left such a specific message on your voice mail.

#1 hear them out tomorrow and take notes and ask questions. On the heals of that message...demand a return phone call when you leave your message!

#2 get a copy of that echo! Read it and post measurements and final impression.

At best, one of us may be able to shed some light on it for you from personal experience.

Under members....you will find a wonderful gal from GA. Her name
is Tammy. Tammbrock is her ID I believe. She's has had her mechanical Mitral for over 12 years and I do recall her telling us her aortic valve was showing some signs of distress. That was over a year ago. To my knowledge...she's avoided additional surgery. Come to think of it....Rain may have mentioned something similar?

Please don't panic! Was once told that even if my valve starting going slightly array...there are meds that can be taken to lessen effects and push the need for surgery aside.

If you would like to chat on the phone...or in person. Would love to anytime! Maybe we can both find time to grab lunch or dinner in Schaumburg sometime soon! Figured that would be a nice in-between place to meet for the both of us.

Please keep us posted! Take care

 

[Nancy]

Not the kind of message you want to hear on the answer machine. But you mentioned that the valve is leaking "somewhat". There are some leaks that just require careful monitoring for a long while and possibly some additional medication. Wait until you talk with the doctor tomorrow to find out exactly what the nature of the leak is. It might not be as bad as you are thinking right now.

Also, please remember, it is far better to know about potential problems so they can be handled, than not to know.

Keeping my fingers crossed for you. Please let us know.

 

[Enudely]

karylnn,
I can't offer you much help in the technical sense, but I can offer my condolenses.
I'm so sorry you have to deal with all this!! Having a heart problem is like carrying around a little balloon of anxiety. Sometimes it is deflated, sometimes it is blown up... but it's alway there. (o.k, so I've only had a heart problem for three years... but it certainly seems to be so.)
Anyway, my father-in-law (to be!!) has had a leaky valve for 20 years. They told him he would need to have it replaced 20 years ago, but it's still fine. He takes an ace-inhibitor and it seems to be doing the trick for controlling the leak. I guess it just depends on the size of the regurgitation.
Anyway, good luck to you!! Try not to freeze up when you talk to the doctor, and write down what he/she says (I always forget later!!!)
-elena

 

[Ross]

As you can see, don't go off the deep end. You need everything that Gina mentioned before any conclusion can possibly be arrived at. A somewhat leak can be mild, moderate, heck even slight. Wait until you have the full story before driving yourself nuts.

 

[fyrfytr]

Hey Karlynn,
Glad to hear your St. Jude Mitral valve is doing good. I am with the rest and wait until you have more info about your aortic valve.
I want you to know that you are in my thoughts and prayers.
Take Care

Dave
____________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical

 

[Perrster]

Best of luck to you, Karlynn. Hopefully some wonder drug will do the job for you.

Regards,

PerryA

p.s. I'm looking forward to one of your lo-carb dishes at our mini-reunion. Gina's idea of a pot luck dinner is taken to heart. Thinking of inviting all Chicagolander's to our house like late January, early February.

 

[bvdr]

HI Karlynn,

I just read your post and I can feel for you. Like Gina said, get a copy of your report. To get a feel for what your cardio is thinking you might ask what she sees as the best case scenario, then the worst, then ask about where she feels you are in between. I know its a little like rating your pain on a 1 to 10, but it may give you a starting point for your discussion.

I'm so glad you found valve replacements too. Not only for you but for all of us. You are one terrific person!

 

[Karlynn]

Thanks so much for the advice everyone. I had my half hour of feeling really sorry for myself and then went and watched some really bad TV to get my mind off it. It's just so strange how hearing unsettling news took me back pre MVR, and all the memories came flooding back on now rotten I felt and how incredibly frustrated I was.

I will let you know what the doc says after I speak w/ her today. I will definitely request a copy of the echo report - and last year's as well. She made it sound like last year's report showed some sort of small AV leak, but I honestly don't recall that (and wasn't hanging with a bunch of people that recommend getting copies of your reports - I will now!) I recall the tech pointing out something and then them discussing that it was most likely "noise". So that will definately be one of my questions today.

Thanks for being there with me!

Karlynn

PS - just had a funny thought after reading all your posts. I thought of that scene in the old spoof movie "Airplane". One passenger was freaking out and getting hysterical and someone grabs her and slaps her to snap her out of it - and then the rest of the passengers line up and take their turns, even a nun. I gotta say, that really makes me laugh. Thanks, I needed that!

 

[ShezaGirlie]

Hi Karlynn

Hi Karlynn

I can certainly understand how a little 'negative' news can bring up all you have gone thru in the past. After all, we're all but mere mortals and deserve to 'whine and cheeze' a little.

Just want you to know I'm thinking of you and sure do hope it's just a minor leak and will 'exit' on it's own! Sometimes those things do seem to fix themselves. One thought -- have you tried magnesium?

Hang in here with us. You have a bunch of wonderful friends here...in fact Gina usually has a good bottle of 'whine' and I'll bring the 'cheeze.'

 

[Heather Fisher]

I ditto what the others have said...don't freak out yet. I'll be praying for you today. Let us know what the doctor says!!!

Heather

 

[Karlynn]

You can start lining up...

You can start lining up...

Just talked with my cardiologist. I was surprised to hear from her so soon.

The news isn't super terrific, but certainly not what my imagination and previous experiences were mixing up for me.

Last year my echo showed a trace regurg with the AV. Now it shows a mild regurg. She said there is a very slight thickening of the walls of the heart which she feels is due to the AV regurg. She said she also feels my increased arrhythmia of late is most likely do to the AV, but also believed stress issues I spoke with her about were probably exacerbating it.

At this point in time she doesn't want to do anything different, but does want to start seeing me every 3 months for a while, to keep a close eye on the AV. She also wants me to let her know if the arrhythmia becomes bothersome, so that we can try and take care of that. ("try" is my word. Never had any luck pre-MVR with anti-arrhythmic drugs.)

She was happy that I asked her to send me a copy of the report. And I was glad that she made the effort to call me back in the middle of, what her receptionist described to me as, her incredibly busy day. I told her that her voice mail last night left me pretty concerned. She apologized for that but said she felt bad about getting back to me so late, and thought I'd be unhappy if she had just left a "call me back" message with no information. And she's probably right.

Once I get the report, I'll give all you thrill seekers the numbers.
Thanks again!!!!!!
Karlynn

 

[Nancy]

Good! I'm glad it isn't as bad as you thought. Just a watch thing, and maybe some additional meds. You can rest easy tonight.A lot of people have trace and mild leaks.

 

[KimC]

Karlynn,

I'm sorry you had to go through such a trying couple of days.

I hate voicemail. Last summer, I went out West for a week to celebrate my son's birth, the end of a difficult pregnancy and hope for things to come. The week I got home, I heard a very distressing message that had been waiting for me from my doctor's nurse: "Call me as soon as you get this message, tell the receptionist to page me."

Well, I knew that what she had to say would be hard to hear after a carefree week. My doc also called later. He's the master of cracking me up and helping me remember that "little leaks" ain't so bad. (After reading many stories in VR.com, I agree!)

I'll keep you in my prayers, Karlynn. You're such a supportive and positive person, let us carry you for awhile.

God bless,

 

[sylviayasgur]

hi karlynn!
i'm so sorry you had to go through this. i can [almost] totally relate. when joey went for his 6 month echo they found a moderate to severe leak. we were both so thoroughly disappointed and devastated, already planning...
his cardio suggested he have a tee. thank God for that. it showed two very mild/minor leaks coming from what is called a "fistula". they were spurting in opposing directions which gave the illusion of a severe leak.
they just watch that fistula and check by echo every 6 months to make sure it's not getting worse. they say it may even close up on its own. this week's echo showed no change and all is well.
i'm glad that it is a "watch" kind of thing. it keeps the docs on top of it and aware of it as well.
i wish you all the best. hope you are feeling more at ease with this.
be well, sylvia