Good News and Bad News

[Christina L]

Hello everyone,

I just had my two-year check post mitral valve repair yesterday and had an echocardiogram. The good news is that my mitral valve is still watertight and the cardio even said that my tricuspid valve showed no leak that he could see -it had a small leak pre-surgery.

However my cardio walked into the room and the first thing he said to me was "are you having atrial fibrillation?" He had a concerned look on his face and I asked why he asked that question - he said that both my left and right atriums are at the upper limits of normal and that we needed to watch this very closely and I should have an echo in one year and be checked for thyroid and magnesium in six months. He also then told me not to worry after he had dropped that bombshell. He seemed to imply that atrial fibrillation is a "given" and he said he would just give me Coumadin and that it wasn't a life-threatening situation. Is atrial fibrillation a "given" if your atria are dilated.

He wouldn't tell me how the echo compared to last year - again this is a cardiologist of few words who usually didn't tell me anything bad (guess he never had a need to), but this time he told me this and left me hanging. I am going to call the facility and request my echo findings from the last two years and then see myself what the measurements are as compared to my pre and post surgery echos.

I know that my left atrium was about 4.2 cm before the surgery and that was at the upper limits of normal. I know that sometimes the atria can shrink post surgery but evidently mine have not. I don't remember hearing that my right atrium was dilated.

Needless to say, I walked around in shock last night and cried profusely (we went to see Paul McCartney in concert and I didn't enjoy myself one bit). I am still very, very depressed and wonder what this all means. From the little I know, it doesn't sound good.

Can anyone tell me how they would interpret all of this? How often does the heart size shrink after valve repair or replacement? If the heart size is continuing to grow, what does that mean? Was my mitral valve repair done too late - was my heart already damaged beyond repair?

To let you in on a secret, Wayne and I were thinking of adopting a child from China and now I think the handwriting is on the wall. My cardiologist told me to go ahead with this plan and not to worry. How can I become a child's mother, only to leave her in say 10 years?

Wayne is trying to be understanding and say good things, but I am looking to you all here on VR.com, my heart buddies, to build me back up again. Is there anything I can do about this situation? Exercise? Vitamins? Getting control of stress?

Thanks very much.

Christina L

 

[ALCapshaw2]

WHOA Caroline!

Don't get your cart before the horse.

FIRST, do as you mentioned, and get copies of ALL of your previous echocardiograms. I like to chart each parameter on a spreadsheet for easy comparison.

THEN you will have a better picture of your history. At that point, you may want to request a consultation with your cardiologist (or another!) to assess your prognosis.

You should discuss your A-Fib (and perhaps have a 24 hour Holter Monitor or 30 day event recorder to assess that status). You may even want to consult with an Electrophysiologist (Cardiologist who specializes in rhythm issues).

Coumadin is ONE approach to managing A-Fib. Betapace (or the generic Sotalol) is another. IF Betapace/Sotalol works for you, i.e. it prevents A-Fib, you may not need to be on Coumadin. It's worth discussing!

OK, take some DEEP BREATHS and yeah,
go for a WALK, and lower your stress level
by getting your mind on other things until
you get the answers you need.

Best wishes,

'AL Capshaw'

 

[Christina L]

Thanks Al -

Thanks Al -

This is exactly what Wayne has been telling me - to get a second opinion or go back and have a more in-depth discussion with my cardiologist. I am not having atrial fibrillation but do have short bursts of it, I personally believe. I told this to my cardio and he offered to do a Holter but didn't pursue the issue.

He just said we needed to watch the atria size diligently - every year.

It is just that this is all a shock to me - all this time I was worried about my mitral valve repair failing and here it seems to be fine, but my heart size is not reducing (or going up?). A whole other issue that I wasn't prepared for.

Al, I am trying to "be brave" and your words of wisdom kept going through my head over and over last night - and still this morning.

Christina L

 

[Karlynn]

Yep Christina - get that cart in back of the horse.

I'm thinking that if he thought that your issue was a current problem that he would have ordered more testing now. Did he check your thyroid and magnesium now? And if he did, what are the results. This is just a blood test. If he's concerned you may be having enough a-fib to cause enlargement, then I'm confused as to why he didn't, at the very least, order a Holter monitor study if he was concerned (which it doesn't sound like it). Apparently you weren't in a-fib during the echo. And there is always the possiblity of echo tech error.

As Al said - you need to compare this year's echo with last year's echo. You may find that it's something he saw last year, but didn't bring up because he's not that concerned. I hate it when doctors do the ol' Hit n' Run. I always get mute when I hear the doctor say something that is shocking to me. Call the doctor back and tell him you need more complete information in order to process this. Ask him your questions. Write them all down before you call.

As far as adoption goes - you are making a huge huge leap from "upper limits of normal" to being dead in 10 years. (But then you wouldn't be our Christine if you didn't. ) You haven't even been through a replacement yet sister. You were one of the lucky ones that got a repair.

I'm fairly certain that this mountain is just a mole hill - or even just an ant hill. Knowing you, I'm pretty certain that as heart-aware as you are (like me) you would know if you were in periods of sustained a-fib.

Christine - live life sweetie! You'll be fine.

 

[Mary]

Christina,
Al has given you very good advice, and I hope after reading it you are able to regain your sense of equanimity. I know your visit was an awful shock, and when we hear bad news, we sometimes instinctively think the worst. Your news isn't good, but it isn't terrible. The values are still within normal limits, although high, and the cardiologist is taking a watch and see attitude. After you receive your reports, you will have a better idea of how much change there has, or hasn't, been.

Please know that all is not lost. You just need some time to regroup and rethink about what you've heard. As Nancy says, "Never give up and never give in."

 

[Phyllis]

Christina, I can only echo the wise advice you have received from everyone else. Write your questions down and get your answers and another opinion if necessary. It's wonderful news that you are thinking of adopting and I know you and Wayne will make wonderful parents and have many wonderful years to share with a child- a great reason to get to the bottom of this pronto.

 

[geebee]

Hi Christina,

First let me say that adopting a child from China sounds so wonderful. There are so many children there (especially little girls) that need good homes. I am sure you guys would make great parents. And remember, even if you gie birth to a child, there is no guarantee on how long you (or even someone without heart issues) will be around. Love while you can and let the future take care of itself.

I have a very enlarged atrium and am in constant a-fib (have been for almost 2 years now). I rarely feel it and coumadin takes away the worry of clotting. My atrium is staying the same and not continuing to grow. I think it stops growing when the valve problem is fixed (although I could be wrong about that one). I just know mine has not increased in size for many years.

As i said in my anniversary post, I plan on being around for a very long time to come. I am sure you will join me in that effort.

Get the information on your test results and do some comparisons. I am sure you will find out things are better than you think and you can relax. Try to remember those mountains in Leadville.

 

[Nancy]

Please take a deep breath and relax a little. You are not in afib at the present time. It is just a watch area. Joe has been in and out of afib and aflutter and normal sinus rhythm for many years. His atria were also very enlarged a few years ago. They have reduced some in size, and I believe (I don't have his reports right here) one of them has gone back to normal size.

He has considerably more medical complications and is considerably older than you are, and he's still among the living. So I have to agree with your card. that if afib becomes a problem, it is not life-threatening, just has to be watched, and Coumadin, of course.

But you aren't there yet.

Never worry about things that MIGHT happen. It's a total waste of your good time. The time to worry about something is when there are no options left.

Right now, you are OK. Also your doctor has many options available to help you with afib IF AND WHEN it ever happens.

Adopting a little child sounds like a wonderful plan.

Remember, you are NOT in afib now.

 

[Christina L]

Thank you, thank you

Thank you, thank you

everyone for the encouragement and chastisement. Sometimes I need a good verbal shake of the shoulders and slap of the face to get me to think reasonably. Just ask Wayne - even though he would like to do it physically I am sure!! Hee.

It was a shock to hear the news of my left and right atria being enlarged and that the cardio seemed concerned about it. I was under the impression that the atria would shrink back down some after my surgery.

Karlynn, I did think of tech error as I know that has been talked about many times here on the board. I am hoping that was the case. I called and ordered my records - I will pick them up Friday as I have to sign for them and the clinic is an hour away from where we live.

I am also going to make an appointment with another cardio in that group - hopefully an upbeat, smiling, happy cardio who knows that I need to have things explained to me thoroughly, but yet will know that I need psychological medicine as well.

Just reading all of your advice sent the tears rolling again. This is all such a scary thing - I really am relatively new to all of this, although I was born with MVP. I didn't hear surgery mentioned until three years ago.

Another thing I am wondering about is the altitude we live at. I have heard of heart patients moving to lower elevations as high altitude is hard on the heart. My cardio told me it didn't make a difference, though. Also can allergies (we have cats) cause heart enlargement? Difficulty in breathing because of allergies? I know my faulty valve was the main culprit, but are there things that I can change to help my heart?

I can't thank you all enough for your kind words and the gentle nudge to put me back on track. You are the best! And thanks ever so much for the encouragement on the adoption. Ironically, one of the reasons I wanted to adopt at this late stage in my life (46 years now), is so I wouldn't spend the rest of my days worrying about my OWN health problems and myself - like my cardio told me several months ago when I told him about the adoption, "By adopting a child you will have a positive result for all your worries."

Christina L

 

[Karlynn]

Christine - you are allowed to have your freakout time. You're a smart woman, you will process it all the correct way.

Your current "freakout" reminds me of the time I came home and my husband told me that there was a message from my cardio on the voicemail. My cardio's message was that my echo showed my aortic valve now had a mild leak (where there was none a year before). I sat in the family room and proceed to whimper, then cry, then cry A LOT! My husband said "Now don't go blowing this out of proportion. It's a mild leak - (blah blah blah)". I just said "Could you not talk for a while. I just need some time to be a mess about this and then I'll be all right." I then jumped on VR right away and posted my "freakout".

The next year my aortic valve leak went from mild to trace. I get my results from this year's echo on the 15th. Be watching for a possible "freakout" post from me.

Christine - I know you'd be a wonderful Mommy to some lucky child.

 

[Ross]

everyone for the encouragement and chastisement. Sometimes I need a good verbal shake of the shoulders and slap of the face to get me to think reasonably. Just ask Wayne - even though he would like to do it physically I am sure!! Hee. Christina L

Don't know about smacking faces, but I'll spank you!

Lighten up Mrs. Worrywart. What appears to be, may not be at all. Even if it is, it's far from the end of the earth. Did you really think we were going to let you escape us? Boy have you been misinformed.

Adopt children, be fruitful and mulitply! Enjoy your life and don't sweat the small stuff.

 

[MelissaM]

Hey Chris,

I can certainly understand your shock! I would be pretty d*mn floored if I went in for a routine echo and got that news!!! Having a repair has certainly put me on "cruise control" w/r/t my heart issues. . .issues? What issues? Your news must have come as such a shock, and sent you down the road of Worry Land - just when you thought you had entered the world of No Worry Land!

My personal theory is that your heart had to enlarge to fit all of your love for Wayne AND your potential new child! It sounds like your heart has been expanding as of late. Hopefully your heart will adapt to all of this new excitement, and return to its normal size by your echo this time next year!

Hang in there!

Melissa

 

[Christina L]

Thanks again all -

Thanks again all -

Karlynn, I hope I will make a great mommy if that happens for us now, but thanks for the compliment. It was sweet. And to others who said the same thing to me.

Truly I am scared beyond belief by this latest news, but I am trying to be rational and will wait until I can compare test results from the last 3-4 years. I don't understand why my heart would continue to enlarge after the repair has been done.

The only thing that I can think of is that my cardiologist has really not sat down to compare numbers and all of a sudden since my mitral valve is not giving me any problems any more, he has shifted his focus to the size of my atria. I am hoping they are the same size as before, but he doesn't realize that. I am hoping....

Ross and Melissa - thanks for your personal E-mails and encouragement and Ross, thanks for the spanking. I may need another spanking here real soon.

I need to go get on my treadmill. I have been researching the internet and getting more freaked out by the minute on what I am reading. I'm sure all this fear and stress is not good for my heart one bit!

If anyone has anything else to tell me or give me some encouragement regarding the size of the heart's atria, please post.

Karlynn (and anyone else who cares to answer this question), I am curious as to how your heart responded to your surgery many years ago. Have your atria stayed the same in size or shrunk down some?

Christina L

 

[tommy]

Chris,

Hang in there. I keep leaning on the cardio's encouragement to keep your plans. He wouldn't steer you into motherhood if he didn't think you are up to it. At least you won't have to do the pregnancy and child birth.

Yes, stress doesn't help, but you should get all the good info you can. Of course, the best info is your personal info from the doctor(s).

 

[Karlynn]

I wouldn't be surprised if you do experience some a-fib now with the stress you are feeling.

Exercise is a good thing Christine. I started working out 3 days a week after I got the news of my aortic leak and both my doctor and I credit that with the aortic leak decreasing.

To be honest with you - I haven't paid that much attention to my heart size - I know it was enlarged prior to my replacement 14 years ago, but I couldn't tell you if it shrunk much or at all. I just pretty much went on to live my life and put that info out of my head. I do know that the left side was slightly enlarged a few years ago and remains about the same. I can tell you more after the 15th.

You may be right in that the size of your atria may have been a secondary issue that the doctor just didn't feel he needed to address prior to your repair. You may find that it's been that way for some time and you are just hearing about it now.

Don't forget to read the last line of your signature - Don't fear tomorrow - God is already there.

 

[Nancy]

Maybe your cardio. read a new article or went to a seminar where they focused on the atria, and it made him focus more on that area. My hunch is that there was some enlargement in the past and it was never mentioned.

If you haven't experienced any symptoms, that's a good thing.

 

[sylviayasgur]

hi christina,
i was so sorry that you had to get so upset after that cardio visit.
i think many of us get "freaked out" when there is mention of any slight change [for the worse]. it may not be anything serious or that needs immediate attention, but any negative news is bad, bad news and i suspect many of us here live in fear of hearing it at most doctor's visits.

as al mentioned, there are several things that can be used for a-fib, but worry about that if/ when you need to.

karlynn has the right idea about working out. in fact, although joey is on a very low dose of amiodarone (for a-fib), wheh he does have a bout (lasting several hours only), a sure way to get out of afib _for him_ has been a good workout. imagine that. does the trick each time.
also, when his thyroid levels are high (he is hypothyroid), he tends to have more episodes (karlynn mentioned checking that too).

last, but most importantly, as everyone here has said, start a family.
i know a couple that adopted a little girl from china and they are so thrilled.
you and wayne sound like you both want this and so i think you should absolutely follow your hearts.
joey and i could never imagine a life without our girls. they truly make our hearts swell.

please keep us posted when you go for that second opinion.

wishing you all the best,
sylvia

 

[Christina L]

Thanks Tom -

Thanks Tom -

it was good to hear from you.

Karlynn - I know, I was just telling Ross the same thing - I find it so easy to give advice and talk "big" when it comes to encouraging everyone else, but when it comes to myself, I freak out and cannot focus. I try to handle everything myself, instead of handing things over to God.

My left atrium was enlarged before my surgery and that is common for people with mitral valve regurgitation. However, I did not know anything until now about my right atrium and that really scares me.

Gina, I am so glad that your left atrium size is stable and that medication takes care of that for you. I loved your encouraging words to me.

I am wondering if I should be put on some kind of a heart medication that will take the workload off of my heart and that will help shrink the size. I will talk about that with my cardio along with many other questions that I have.

Just got off the treadmill. Interestingly my exercise tolerance is amazing - I am not winded in the least since my surgery. I guess that is a good sign (?).

I was exercising very, very irregularly before now. Maybe once (if even that) a week on my treadmill. I have a very sedentary job. This is WAR and it is truly a life or death matter now that I exercise - so it is five days a week come hell or high water for me to get on that treadmill or outside to walk the dog - AND start up majorly with yoga again at least 1-2 times a week. I want y'all to hold me to that.

I plan to read these posts over and over - they truly lift my spirits. Thank you everyone.

Christina L

 

[Christina L]

Sylvia and Nancy -

Sylvia and Nancy -

Our posts crossed in the "mail" I think.

Nancy, I haven't experienced any symptoms other than an occasional weird arrhythmia, which could be the start-up of a-fib, I don't know. I did tell my doctor about this.

I also have slight edema in my feet when I stand or walk without sitting for long periods of time - like last night standing at the Paul McCartney concert - my feet felt like bricks by the time we sat down. My feet are not overtly edematous, but they are slightly puffy looking and my toes are red.

Otherwise, like I said, I get no SOB on exercise but do get PACs at times during exercise - not consistently and they are few and far between per exercise session.

I am going to be tested for thyroid and magnesium in six months, but I may request this be done earlier. My cardio suggested this yesterday because I told him that I do get weird arrhythmias at certain times of the month, that I relate to hormonal changes during my cycle.

And Sylvia, such touching words about adopting. There is a huge part of me that thinks that raising a child will keep me around longer, but another part of me is so fearful that I will be sickly and not be able to care for her well and "leave" her before she is grown. I just spoke with Wayne on the phone (he has been calling several times a day to see how I am doing) and I asked him if he would want to raise a daughter alone if I pass on and he said he certainly could handle that, although he said "nothing is going to happen to you."

Last night when Paul McCartney sang "Yesterday" the tears were streaming down my cheeks. I know it is about a love lost but to me last night, the song was about losing my innocence in regards to my physical health. I would give anything to go back 10 years and be able to worry about silly, frivilous things again.

ROSS - It's definitely time for another spanking!!

Christina L

 

[tobagotwo]

Everyone jumped on this so fast there's really not much new I can say.

But I wanted to point out a couple of things...

Atriums don't seem to remodel nearly as well or as fast as ventricles. It's entirely possible that yours hasn't changed much either way since the surgery.

Which brings us to the fact that your atrium was at the upper limit of normal before the surgery. There is a very large chance that the cardiologist didn't compare the current with the past echoes, and just went on what he saw in this one.

I would definitely go for the Holter. In my suspicious mind, there is an excellent chance you're not experiencing afib at all, or at least very little, and what you are feeling is likely to just be commonplace PVCs. Coumadin and Plavix can be wonderful, lifesaving drugs, but neither is something to start taking "just to be sure." Only take them when you are sure.

So sorry you couldn't enjoy Paul. After all, we're running out of Beatles...

Best wishes,