Echo NOT good news --- 4th OHS Imminent

[Lionheart]

Norma Jean,
I wish you the best as you deal with this. You've got my prayers.
John

 

[Kathy McCain]

Norma

I too am very sad to hear of your troubles. I know you have been dealing with this for awhile now. You are a VERY SPECIAL LADY! Please keep us updated, we are all here for you! Believe me, you are in my thoughts and prayers my friend!

Stay strong

Hugs

 

[normofthenorth]

All best wishes and prayers from a new friend.

 

[njean]

Okay, help me understand this:

Upon my arrival in Houston, the doctors have said that they want to do another Echo. Now, we all know an Echo is NOT the gold standard to find out exactly what is going on w/the valves. The true test is a cath, right? So why am I not being scheduled for a cath instead?

This is somewhat confusing to me at the moment. And like I told my husband, when I went up in 2006, they gave me instructions to stop the coumadin before we flew to Houston. Nothing has been said to me now?

I'd appreciate what your thoughts may be??

Thank you!!

 

[deek]

Okay, help me understand this:

Upon my arrival in Houston, the doctors have said that they want to do another Echo. Now, we all know an Echo is NOT the gold standard to find out exactly what is going on w/the valves. The true test is a cath, right? So why am I not being scheduled for a cath instead?

This is somewhat confusing to me at the moment. And like I told my husband, when I went up in 2006, they gave me instructions to stop the coumadin before we flew to Houston. Nothing has been said to me now?

I'd appreciate what your thoughts may be??

Thank you!![/QUOT

Norma, I'm of the mind right now that echo's are just crap. If you are going to make this trip, I'd demand more invasive testing. Especially given all your issues and especially given your pulmonary hypertension. I went all the way out to Mayo for standard tests (ie. echo, blood work) for nothing. Waste of trip! That echo looked okay, despite severely elevated BNP levels, which they completely overlooked. Less than two months later I was seeing a PH Specialist who ordered a RHC which showed moderate to severe mitral stenosis and pulmonary hypertension. I was told that my less than two year old repair with annuloplasty ring was causing stenosis and secondary ph. This came as quite a shock to me as previous echos never indicated this...or at least it wasn't interpretated that way. Looking back I see the trends. Anyway, I hear ya! If you are going to make the trip make sure they do what they need to do to get the right answers to help you. Wishing you the best! Hugs, Dee

 

[njean]

Norma, I'm of the mind right now that echo's are just crap. If you are going to make this trip, I'd demand more invasive testing. Especially given all your issues and especially given your pulmonary hypertension. I went all the way out to Mayo for standard tests (ie. echo, blood work) for nothing. Waste of trip! That echo looked okay, despite severely elevated BNP levels, which they completely overlooked. Less than two months later I was seeing a PH Specialist who ordered a RHC which showed moderate to severe mitral stenosis and pulmonary hypertension. I was told that my less than two year old repair with annuloplasty ring was causing stenosis and secondary ph. This came as quite a shock to me as previous echos never indicated this...or at least it wasn't interpretated that way. Looking back I see the trends. Anyway, I hear ya! If you are going to make the trip make sure they do what they need to do to get the right answers to help you. Wishing you the best! Hugs, Dee

I know Dee. I'm in total agreeance with you because Echos can deviate from tech to tech from facility to facility!

So I've just emailed all parties at St. Luke's and posed the same question. I am waiting to hear a response from them, soon I hope.

 

[Superbob]

Norma, I won't got through all my gory details but I have certainly come to learn that echos are FAR from being the gold standard of checking heart functioning. I would press them on why they want to do another echo and not perhaps a c-scan or cath.

You are in my thoughts and prayers.

 

[Lynlw]

Norma, I agree at this point another echo seems to me to be just a waste of time and money. Have you had a MRI/MRA recently? When Justin's echos look bad, when he was younger he went right to the cath lab. But since technology has improved so much, they have been doing MRI/MRA after the echo before the cath. NOW I will say that his MRI in 07 (like the echo) showed he had a stenosis somewhere by the pressures in his ventricle/atrium being so high, but because of where the stnosis was, they couldn't get a good look until the cath.
I would at least want an MRI this trip.

 

[njean]

Bob: I feel the same way Bob. I have never really trusted what any of the Echos had to say because there have been so many inconsistencies. Anyway, I just sent Houston an email. Hope to hear from them soon.

Lyn: My cardio here mentioned doing an MRI but then he reconsidered because since I was going to Houston, they would probably want to conduct all the tests there anyway. The thing that worries me, is that I really, really have problems with the MRI machine.....I start having panic attacks. And the funny thing is, I wasn't always that way, I just started noticing it more within the last couple of years or so. I had one done about 2 months ago for neck problems, and I started panicking and the tech had to stop~!

 

[Lynlw]

Bob: I feel the same way Bob. I have never really trusted what any of the Echos had to say because there have been so many inconsistencies. Anyway, I just sent Houston an email. Hope to hear from them soon.

Lyn: My cardio here mentioned doing an MRI but then he reconsidered because since I was going to Houston, they would probably want to conduct all the tests there anyway. The thing that worries me, is that I really, really have problems with the MRI machine.....I start having panic attacks. And the funny thing is, I wasn't always that way, I just started noticing it more within the last couple of years or so. I had one done about 2 months ago for neck problems, and I started panicking and the tech had to stop~!

I wonder if St Lukes has an "open" MRI? Altho like you said in your earlier post today a few things are confusing and I would want to find out a better idea of their plans before you get there. Do you have any idea how long they plan to have you there? Because IF they plan on doing the surgery this trip or even the cath, it would be a shame to be there extra days, because they didn't have you start to stop or bridge your coumadin.
For some reason I thought it was a one time trip they would have you go there do all the testing (including cath) and then discuss what they want to do during surgery in a day or so. So you would think they would mention your coumadin.

 

[njean]

I wonder if St Lukes has an "open" MRI? Altho like you said in your earlier post today a few things are confusing and I would want to find out a better idea of their plans before you get there. Do you have any idea how long they plan to have you there? Because IF they plan on doing the surgery this trip or even the cath, it would be a shame to be there extra days, because they didn't have you start to stop or bridge your coumadin.
For some reason I thought it was a one time trip they would have you go there do all the testing (including cath) and then discuss what they want to do during surgery in a day or so. So you would think they would mention your coumadin.

You must have been eaves dropping on my conservation with my husband this morning, LOL!

That is another thing I find preplexing: that they didn't give me any instructions of when to stop the coumadin. They did say, however, to go prepared for a stay of two weeks, so I'm assuming that it will be a couple of days before they can get me ready for surgery. I remember when we went there in 2006, the Friday before the Sunday we were to fly out, they told me to stop taking the coumadin.

 

[Lynlw]

You must have been eaves dropping on my conservation with my husband this morning, LOL!

That is another thing I find preplexing: that they didn't give me any instructions of when to stop the coumadin. They did say, however, to go prepared for a stay of two weeks, so I'm assuming that it will be a couple of days before they can get me ready for surgery. I remember when we went there in 2006, the Friday before the Sunday we were to fly out, they told me to stop taking the coumadin.

LoL I don't have to eavesdrop, we both just have been thru this so many times over so many years, we think about all the little things that can slip by and mess up things. Luckily you thought of these things in plenty of time to get things worked out. See that is the one good part with having lots of experience doing this.
You know you are in my prayers that everything goes as smoothly as possible for you from now until you have been home a month recoverying and beyond that

 

[Superbob]

If it comes down to an MRI, I would recommend an "open" MRI. I've had a couple of MRIs in past several years (for non-heart-related issues) and got the "open" variety. Eased my mind considerably because I, too, hate being cooped up. During one of them, they let me watch one of my favorite movies, "The Natural" (actually was just part of the movie b/c the procedure didn't last that long). Anyway, it made the whole experience almost fun. :smile2:

 

[njean]

If it comes down to an MRI, I would recommend an "open" MRI. I've had a couple of MRIs in past several years (for non-heart-related issues) and got the "open" variety. Eased my mind considerably because I, too, hate being cooped up. During one of them, they let me watch one of my favorite movies, "The Natural" (actually was just part of the movie b/c the procedure didn't last that long). Anyway, it made the whole experience almost fun. :smile2:

Yes, I know Bob. Years ago, I had an open MRI and I tolerated it well. It sure as heck beat the old fashion cocoon thing! Just the thought of it gives me the willies~

 

[Bina]

If one of those tunnel types ever needs to be used, please hit me up good with ATivan first.
Norma, it saddens me that you have to deal with all this right now....but let's dream of the New Year when
things are all fixed up and u can get on with your wonderful life.

 

[njean]

If one of those tunnel types ever needs to be used, please hit me up good with ATivan first.
Norma, it saddens me that you have to deal with all this right now....but let's dream of the New Year when
things are all fixed up and u can get on with your wonderful life.

They need to hit me over the head and knock me out before sticking me in one of those! LOL!

I'm dreamin' too my friend.....

 

[bigsidster]

Norma----you sound like a strong woman-----ready for the fight.Hope all goes in your favor.

 

[drivetopless]

Sending you more cajones in case you run out. So glad you are taking steps to take care of yourself. It sucks they didn't fix it in 2006, but at least they know to do it now. YOu'll be in my prayers, Norma. Godspeed.

 

[Duffey]

Norma,
Do we have a confirmed surgery date? I thought it was Jan. 10 but now I'm not sure. I'd like to put it on the surgical calendar but I want to get the right information before it do.
Hugs,
Mary

 

[njean]

Norma,
Do we have a confirmed surgery date? I thought it was Jan. 10 but now I'm not sure. I'd like to put it on the surgical calendar but I want to get the right information before it do.
Hugs,
Mary

Don't know yet, Mary. They start doing the tests on the 10th and then a surgery date will be determined after all is reviewed. I am taking my laptop so as soon as I know, I will let VR know.

P.S. I was giving my husband some definitions on terms that ppl may use if he is contacted: I said, "if they want to know if I'm still intubated, it means if I still have the ventilator in!" And he says, what's the ventilator! Oh Lordy.....it's gonna be a trying time!!! LOL! He said to please ask him in layman's terms!!!!