Reassurance is needed, again!

[Christina L]

Hello everyone,

I made the mistake of getting a hard copy of my records tonight after work at my PT job. BIG mistake.

Since my echo of 2003 the changes are: Slight right ventricular enlargement as compared to none in 2003, slight right atrium enlargement as compared to none in 2003. Also my pulmonic valve has gone from trace regurgitation to mild regurgitation and physiologic tricuspid regurg (whatever that means, which is unchanged). My EF is normal - my right ventricular pressure is normal.

I just talked with the cardio on-call whom I have never seen in person - he was wonderful. He told me that an echo is not reliable and that all of this is absolutely nothing to worry about. He said he has never seen a successful mitral valve repair turn into right heart failure - right heart failure is more from a lung problem. He said living at this altitude (7500 feet) is not the culprit but I might need my lungs checked. I have no difficulty breathing. He said that maybe my frequent PACs are the culprit, but again he said that this echo is not necessarily a trend. He also said that my right ventricular pressure was the key - if it is normal, then I am okay.

I have been an absolute mess tonight again - Wayne and I have been playing phone tag - me sobbing on the cell phone (while driving) to him, etc. etc. I feel the handwriting is on the wall, if you know what I am saying.

Can anyone out there help me out here - give me some reassurance - tell me of your experiences - did your chambers dilate after replacement or repair? What is going on? Is my heart compensating and will regulate itself and stop dilating? I am so sad, so scared, and feel so hopeless. Here I just get married to Wayne and he is going to have to deal with this mess of a heart situation. I never expected anything like this so soon.

Anyway, the cardio I just spoke with told me to go back to my regular cardio and have all my questions laid out for him and discuss everything. But this cardio on-call did sound very certain of what he was saying. Sometimes I think though they are all just humoring me by not telling me the 100% truth because of how I react to bad news. Would they do that? He also said that if Dr. Larson said I should be rechecked in a year, then there is nothing terrible going on - well, I know that it is not life-threatening now, but can you imagine how absolutely mortified and terrified I am going to be a year from now having another echo and seeing the results?? But maybe by then I will have accepted this fate that I have been handed.

Thanks everyone. I'm sorry I'm being such a burden right now to Vr.com when there are others who need help just as much.

Christina L

 

[Ross]

The only thing that is going to make you feel better is more dangerous to you then to forget about it as suggested. I said pretty much the samething he did, did I not? If you really want to know, a heart catheterization is the only way to find out. To me, it's not worth the risk. Honey you've got to stop let this stuff tear you up. I'm betting the echo is full of it and the cardio on call dude is correct!

 

[twinmaker]

Christina, I just wanted to write and tell you that I'm thinking about you and feel so badly that you are going through this anguish. I think most of us have gone through some of this to one extent or another. You sound so much like me...I start thinking of something related to my heart problems or I get a test back that may sound a little bad and then I go into all of the "what ifs". I know for me I have found that I need to be proactive. I think you should definitely get all your questions answered by your cardiologist. If you're not satisfied, then you could get a second opinion. In the end, we have to trust whatever physician we go with. I would tend to think that in this "sue happy" time that we live in, most doctors are going to err on the side of caution. Bottom line, they can't afford not to. I really feel if your doctor told you to get checked again in a year, then he's pretty sure nothing awful is going on. Don't get me wrong...I'm sure there are doctors that don't know what they're doing. But I believe we all would have a gut feeling about that and know to go elsewhere. Most of us that have been through what we have been through know more than just the ordinary patient. If you didn't, you wouldn't even be able to ask some of the questions that you are asking. I don't know if I'm helping or not, but just take a deep breath and try to calm down. Write all your questions down and make an appointment with your cardiologist and tell him exactly how you are feeling about all of this. I just hate to read the panic that I'm reading in your note. I will pray tonight that you have some peace concerning this. Hugs to you. Linda

 

[Lynlw]

I agree w/ Ross here (OMG I never thought my fingers would type THOSE words lol sorry Ross I couldn't resist) I wouldn't worry about it too much , Justin has had big problems his whole life w/ his pulmonary valve/artery actually didn't have a pulm valve that was part of the problem, but he did fine for years w/ mod-severe regurge, for pulm valves a gradient of 60 is when most docs start getting nervous and in Justin's case his gradient was in the 80's for a couple years (under the watchful eye of his card and surgeons) and he was allowed to do all sports.
I am fairly certain they are not just saying you're ok so you don't worry and from our experience if they feel you are fine to come back in a year, it isn't time to worry yet, if the docs were concerned they would probably have you come back in 6 months or less,
Lyn

 

[geebee]

Christina,

I am not sure we can say anything to you that will really keep you from worrying. Learning to put things behind you is something that has to come from within. The only thing I can tell you is to try and focus on the terms this cardio used which are "slight, slight and mild". These are terms many of us would like to exist in our echos. Many people out there have slight heart issues that they never learn about because they have no reason to have an echo. We learn these things because of our histories and thus are exposed to information the general public never hears or knows about.

For the same reason doctors want to be sure about diagnoses, they will not keep things from you. They are required to give you all the information they have or they are subject to actions. The cardio you spoke with sounds like he knows what is going on, was trying to reassure you and gave you good advice.

Talk to your cardio about your fears, let him tell you things are not as serious as you feel they are, schedule your echo for a year from now and start your adoption proceedings. You need some happiness to focus on and get past this fear. We do not know what the future holds but we can take advantage of the present. Your present right now is full of good news and promise.

Please take the love that is all around you and invest it in yourself and Wayne and your family. You CAN get past this.

 

[barbwil]

Sending love and prayer your way!

Sending love and prayer your way!

Okay Christina, here goes:

1. If you don't stop talking and crying while driving you're not going to be around to see how your heart problems play out.
2. Have you read the quote under your name lately? "Don't fear tomorrow- God is already there" Meditate on those words and place yourself in His hands; God loves you and wants the best for you and your hubby. None of us can add one day to our lives but we can sure make ourselves miserable by playing the "what if" game.

Take those echos with a grain of salt; I've had some very conflicting results. A lot depends on the one who is running the test.

I don't mean this to sound harsh but sometimes we need someone to sit us down and get us to take a deep breath and think calmly. I'm sure there will be a lot of your friends here praying for you to have peace in your life.
{{{{{{{{{{{hugs}}}}}}}}}}}}} Barb

 

[Phyllis]

Christina, If anything I think you should be encouraged by what the doctor said, not discouraged and I agree with Linda that most doctors err on the side of caution today. They would not be reassuring you and waiting a year if they had any doubt at all. Time to concentrate on your lovely new marraige and your hopes for adoption!

 

[aussigal]

BIG AUSSIE HUGS Chritina...

I know the feelings you are going thru only too well,,,I get a big-panic every-time I read something new about my condition,,,but if you really have trust in your cardioligist team ring them (which you did) and let them calm you down,,,and Probably even a call to your cardio himself personally if he is the only one who can clear it up in your head...I think we THINK too much because we know too much about our conditions which isnt really a bad thing ...but you gotta try keep it all in perspective...it so darn hard but I am only new here and learning fast to calm-down quickly and lower that BP and within a couple of days I am over the big-panic until next-time anyway!...
I bother these guys here daily whinging and whining too...only to feel better as soon as I have had a whinge !
oh yes...now dont forget about that beautiful bubba you want to adopt ! we want pics.
much love and hugs

ton

 

[joanne6]

As usual most has been said. I totally agree that they would not wait a year to repeat the echo if the doc thought anything was going on. Techs do make a difference in the way an echo looks. You have to believe that you went through the surgery for a good reason and that you will have a wonderful and long life with your honey.
I was totally under the impression from everything I was told and all that I read before my surgery that MVR leads to long life.
I will bet that you are fine.
I also agree that crying, talking on the phone and driving don't go together.
Please take care. You have lots of friends and support.
Joanne

 

[tobagotwo]

You might want to be checked for Pulmonary Hypertension. That might be the culprit, if there is one. It is not that uncommon for it to be secondary to valve problems. Nancy would have information on that. There are treatments for it, if it is the issue. And avoidance of salt.

Or it could still be an echo interpretation, which the On-Call doctor did allow as a possibility. The 2003 echo might have glossed over or missed things. This echo might have overstated things.

Don't get too concerned yet.

Best wishes,

 

[Karlynn]

I'm willing to place my bets on echo error being the culprit. It isnot an exact technique or science. Ask to have another echo done and ask for their best tech. Getting 2 identical echo's would be like looking for 2 identical hands in poker.

Christina - I think you have a much, much greater chance dying by crying and talking on the cell phone while driving than you do from any heart issues that "may" arise for you. (Not a chastisement, just a comment on playing the odds.) I also think that the stress you are under from all this "what if-ing" is more dangerous to your health than any other scenerio we could come up with related to words like "slight" and "mild".

You really need to stop placing yourself in an early grave. You're a woman in your mid 40's that had a successful mitral repair done by one of the world's best. You're healthy and functioning fully and you have a new married life to bring you much joy.

I think we need to start a VR Chicken Little Club. Members may come and go, and will be made up of those of us who let our minds run wild with test results and the like and think the sky is falling. It is a club I know I will be in from time to time. Now Christina - we just need to make sure you aren't the clubs first president.

 

[Christina L]

I don't know what to say -

I don't know what to say -

I am overwhelmed with your show of kindness (again) and concern towards me and my new heart situation.

I am pretty tired tonight - doing better, but still in kind of a shock and disbelief that this is all happening.

I just assumed that when they successfully repaired the valve, my heart would work even better.

I will trudge on to work tomorrow at my PT job and put myself through the paces - so I won't be able to get on the VR.com board until tomorrow night. I just am too weary right now to answer everyone but I have read each and every one of these posts tonight and just think I have the best friends in the world on this board.

I can't thank you enough for all of your kind words and hugs - I love those cyber hugs!!

Christina L

 

[Nancy]

Please reread the echo results. Focus on the words "slight" and "mild". There is NOTHING there that says moderate or severe, just "slight" and "mild".

We all know, and have discussed this forever--ECHOES can vary and are dependent on the person doing them. And they can also vary depending on the patient and what is happening the minute the test is being done.

I don't know if stress could make things skewed during an echo, but if there is the slightest chance that stress could change momentarily, I'd bet my bottom dollar that you were very stressed during the test.

You are free of symptoms, right??

I would talk it all over with your regular cardiologist, and then ask when would be the closest appropriate time to get another echo done. He may want to wait a while before doing another one.

As Ross said, a cath. would meaure things much better, even a TEE.

But they are invasive tests and not without complications, however slight the risk is.

Living at very high altitudes can have an effect on the lungs that's true.

If PH were present, there would usually be a note about it in the echo report. And it would usually call out a high PAP or pulmonary artery pressure. But even then, the echo is not the right test for PH. They are too inaccurate.

You haven't mentioned that you have been having shortness of breath, have you? I might have missed that. It sounds as if you are not symptomatic. And I would go with that and believe the doc.

Please focus on how you are feeling. I think you know your body pretty well.

Sending hugs your way ((( )))

 

[Nan]

Christina, everyone has already said everything/anything that I would say, so I echo those who posted before me.

Just take it one step at a time, one day at a time, and try and breathe deeply and be as calm as you can.....and talk to your own cardio asap to help with that process.

I think all of us who have had (or are going to have) OHS are a little more concerned about test results. With good reason. But it really sounds like it could be that particular echo or the echo tech....and even if it was correct the on call cardio seemed to be pretty up front with you that there weren't any serious problems.

Let us know how you make out.

And Please! Drive carefully!!!

 

[Karen7]

Hi Christina,

Please take a deep breath, close your eyes and think "peace." I haven't had a mitral repair with subsequent right heart enlargement but I have had a false echocardiogram. I took the results with me to a new cardiologist and asked him to take another look. He ordered a cardiac MRI -- and found aortic regurgitation, stenosis and an aneurysm -- none of those were detected on the echo! No doctor that I have told about this is surprised. They all said some echo's just aren't accurate and equipment, timing and expertise of the sonographer are all players.

If I were you, I would pursue that adoption and occupy my mind and heart with that little life from China.

 

[KathyH]

Christina,
Sorry to hear how upset you are. Really though, I would wait until you talk to your cardio. You know every Dr reads the echos a little differently. It sounds to me like everything has gone from slight to trace. I know that seeing it in writing must be hard because of everything you have been through already, but really it could just be interpreted differently or even "over read" as some Dr. would say.
<cyberhug>
Kathy H

 

[Turkey Hunter]

Watch that BP Christina

Watch that BP Christina

The more you get so aggrevated over this, the higher your blood pressure will go. We all know that is not what we want.

Each of us here have either repaired or sown in valves, high BP is like a hole in the bottom of your boat in the middle of the Burmuda Triangle. (Understand I am joking to a degree)

I tell you what, have Wayne give you a massage......let things go from there...... hehehe

Then have a good nights sleep and not allow this to get you up in arms or excited. I agree (kinda like what I am going through right now, the echo may very well be wrong or misleading)

Trust the cardiologist you have and go with the flow.

God Bless and I am praying for you now !

BEn

 

[ALCapshaw2]

WHOA (again) Christina !

You seem to be spending too much time and energy looking for the tiny dark cloud in the sky when the sun is shining all around it. Maybe you are talking to the wrong (kind of) doctor...

At your NEXT echo, I suggest you TELL your cardiologist that you would like to SEE the test results and for him to explain every measurement and it's prognosis. Then tell him that the reason for this request is that you tend to fret over every detail without understanding potential consequences (large OR small).

To help put things in perspective, look over the following list of medical term hierarchy:

NO / NONE = just what it says
TRACE = NEXT to NOTHING
SLIGHT = Barely perceptible
MILD = OK, we can see something, but it is not significant
Moderate = There is some effect but it is NOT serious
SEVERE = Significant effect from the condition
CRITICAL = SERIOUS effect that needs to be corrected

Typically, somewhere between mild and moderate, Doctors will begin to 'monitor' the condition more closely.

SO, as the 'on call' cardiologist said, "your echo results are nothing to worry about". Make a chart and track your results. If you see a continuing pattern, then discuss this trend with your cardiologist. Most likely, he will not be terribly concerned until you reach the moderate to severe range, which may be a LONG TIME away, or NEVER. Tracking your results is the 'just in case' defense that will alert you IF and WHEN your condition requires more attention.

Forgive me, but was this a routine followup echo or were you having symptoms that got your attention? If you are still having symptoms (including anxiety), then maybe you should talk with your PCP about pursuing other tests or treatment.

In the mean time, please find more constructive things to focus your attention on and take some time to 'smell the roses'.

'AL Capshaw'

 

[Guest]

Christina,

3 things....

1) RELAX. Worrying and such will do more harm for your health....

2) If you're going to make a call and cry at the same time, don't keep driving. You're more likely to get killed because of talking and crying while driving.....

3) Be glad you have Wayne ... that you're not single with nobody to support you and help to take your mind off things once in a while.....


Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"I'm walking down the lonely street of dreams" ... Whitesnake ... 'Here I Go Again On My Own'

 

[Sherry]

Christina, I mentioned this on the last thread, but I'm not sure if you saw it. Having had an echo (sometimes two) per year for the past eight years, I've seen some crazy discrepancies in my left atrium measurement. I got quite upset about it three or so years ago and had some mild words with both a local cardio (not my current one) and his nurse, but it really didn't get me anywhere. The next yearly echo I had (performed in a different office) showed a lower reading, well within the normal range. My bet is on tech error.

Here are some hugs coming your way. <<<< >>>>