Reassurance is needed, again!

[rbl1999]

Christina, I don't know you but I have read a lot of your responses on the forum. I just want to tell you to relax until you find out what is going on. I have found going thru all of this that the worry part of it is as bad as the illness itself. Please take good care of yourself... Rose

 

[Christina L]

Hi all,

Hi all,

I just want to say thank you again for ALL the responses. You are all right - believe me, I know that. I need to not worry!!

We (Wayne and I) are going to set up an appointment with my cardio and I will have all my questions written down and ready to ask.

I am almost physically sick from this worry, so I know that it is assanine to be doing this to myself. I wish I could click my fingers and this would all be a bad memory.

Just humor me here, though: If echoes are unreliable, then why do they do the darned things and why did my cardio accept totally what the echo said about my right ventricle and atrium being mildly dilated?

Wayne just gave me a looong lecture about staying out of the "dark side" of life and staying in the light. Okay, okay, I know. I am going through the motions and trying to put this out of my head until I see my cardio. I will let you all know ASAP what we find out.

Again, I just can't find the words to thank each and every one of you for your heartfelt posts. It means ever so much to me.

P.S. Nancy, as for your question about symptoms - I do have little runs of funny heart rhythms (I wonder if I am in and out of a-fib and don't know it) and also I have a little bit of edema in my feet when I stand for a long period of time, but doesn't everyone?? I asked Wayne and he said his feet get "tired" but I don't know what that means. Anyway, I have no SOB and pretty good energy level, just a LOT of PACs and other weird rhythms at times and the puffy feet (but not real puffy).

Christina L. aka Chicken Little (?)

 

[Karlynn]

Why are echos used - because they are a fairly reliable, safe test to do to get a decent picture of what is going on. It's when the echo results begin to get alarming that the doctors proceed to the more invasive test such as catheterization. In your case - it's my opinion that this type of step would be really unnecessary and to much of a risk for the type of report you received. If you had a change from slight to moderate w/in the span of a year, I'd have them repeat the echo and then evaluate. But from 'normal to slight', or even 'normal to mild' I would just have them redo in a year, or even 6 months if it's a jump of two grades such as in 'normal to mild'.

I'm always happy when I see it's the same echo tech that's doing my echos - less chance of variability- but still a chance. My cardio does try to use the same tech consistently.

If you are experiencing any sustained periods of arrhythmia, or if you get short bursts daily, I'd request a holter - just so you know what's going on. If you are experiencing more now, it's the stress. Mine get worse when I'm under stress, or if I'm getting a cold or other bug. I was having some during the echo, because it's always stressful for me to go in and get one. I'm always a bit fearful that "something" will turn up - so I stress and then get arrhythmia.

To be proactive - if you don't have a cardio exercise program you are doing - start one. I do Curves and love it. It's helped my heart function and my stamina. Also, I figure if I ever need to have surgery again, I want to go in as physically fit as possible.

As far as the ankles - I think just about anyone our age or older is going to get a little swelling in the ankles after standing on their feet for hours, unless you have a heart like a train engine.

{{{{{{hugs}}}}}}}}

 

[Christina L]

Thanks

Thanks

Karlynn -

What I am wondering also is have others on this board - AFTER they have had their heart surgery - have they had enlargement of other heart cavities. That is what is bothering me. Why is this happening. What does it mean. I have read that congestive heart failure can continue even after a valve replacement.

I have not been sleeping at night - waking up in the middle of the night and am scared to death - as low as a person can get. Bob mentioned pulmonary hypertension and I have read about that and it is not treatable.

Why is my right heart enlarging (if it is)? I do have "physiologic" tricuspid regurgitation whatever that is.

BTW, I did find some Buspar in the cupboard that I was prescribed right after my surgery that I did not take then. I took one this morning. I have been suggested to by several people to start on some type of antidepressant. I hate to take medications, but I feel something to help my nerves and mood is needed or I am not going to get through this.

Thanks for your answers and thanks for your prayers.

Christina L

 

[Christina L]

P.s.

P.s.

I am definitely having more arrhythmias now, but all I can think of is my heart enlarging and I am under mega stress.

I have had a lot of PACs since my surgery and am wondering if those are causing the heart enlargement. I also think that I could be having some atrial fib which is a bummer, but if that is what is causing the heart enlargement and I can get those arrhythmias treated, then I don't care. I would much rather know that this is something that I can treat.

Christina L.

 

[Curtsmum]

Hi Christina, not worrying and relaxing is eaiser said than done, when your not a born worrier. I get very worked up with my sons condition.We was told in march that his condition needs dealing with, within the next twelve months,thats been eight months of pure hell for me and only nineteen days to go for his check up. Then we will have to wait again for a cardic cath. Since coming on this forum , i have got a little better with handling things. I know your not going to stop worrying but just hope you can deal with it a bit better, by trying to find things to take your mind off the situation, all the best of luck, take care of yourself Paula x

 

[geebee]

Good morning Christina,

A-fib is often caused by atrium enlargement (not always) but enlargement is not caused by a-fib. Therefore you do not need to worry that your irregularities are causing your heart to enlarge. I have been in constant a-fib for almost 2 years now and my heart is no larger than it was when the a-fib started.

Now - listen to this old lady who has a lot of experience. You are doing far worse damage to yourself with all this worrying that your body is doing to your heart. I am not saying you should ignore your symptoms, by all means have all the tests you (and your cardio) feel you need. Then you must accept the results and stop thinking of things that can go wrong. I have traveled that road and it leads to nowhere but Disasterville (and Disasterville is a very lonely place).

How's the sky today in beautiful Colorado? I am very jealous of those who live in the mountains.

 

[Christina L]

Thanks Gina and Paula

Thanks Gina and Paula

for your replies.

I have been on the internet practically all morning going down the what-if road. I did read the Sunday paper and had a few cups of de-caf, so I am trying to go on with life.

Personally (I know I'm crazy) I was hoping that it was PACs that were causing the enlargement of the right heart, as that is at least maybe treatable. Other reasons for the enlargement are much more scary.

All of my questions will be answered by my cardio this coming week.

It is partly sunny here today in the mountains, and very, very windy. We get a lot of wind here in Estes Park in the winter months.

Have a great Sunday -

Christina L

 

[Nancy]

Christina-

I want to reassure you that pulmonary hypertension is indeed treatable. It didn't used to be treatable, but there are several very good meds available for it that give people back a normal lifespan. I'm not saying this because I think you have it, just to clear that misconception up so you won't worry about it.

Joe has PH, and was put on Tracleer, and his pulmonary pressures have dropped from severe to low - moderate. And his heart has had some good remodeling as a result of being treated.

I believe you were reading old literature on the web about PH.

 

[PaulW]

physiologic regurgitation

physiologic regurgitation

I have physiologic regurgitation of all my valves. If I'm not mistaken these are very tiny insignificant regurgitations that many people have. My cardiologist said not to worry at all about these.

 

[Christina L]

Thank you Nancy and thank you Paul

Thank you Nancy and thank you Paul

for your replies. That is such a relief to know, Nancy, that PH is treatable. I must be looking at old web sites. I have been self-diagnosing, but yet obviously something is wrong that my right ventricle and atrium have been dilating over the last two years since my surgery. No matter what the cause it is not good.

Nancy, I have a feeling that I will be asking you a lot about how to help myself out with a low/no salt diet, etc. How long has Joe had PH?

Paul, you say you have an enlarged heart? What do the doctors tell you about this? Are you on medicine to keep the heart from enlarging further? Do some hearts just stay mildly enlarged and not progress?

Thank you very, very much for your help.

Christina L

 

[Karlynn]

I'm finding that those of us that deal with mitral valve issues tend to have more PAC, PVC and VBG's than other valvers. Just because you are having them, doesn't mean your heart is enlarged and the cause. There's also the very subjective measurement of "a lot". What is a lot to one person, may be very little to another. Before my valve replacement, I was almost in constant VBG (ventricular bigeminy), with some PACs and PVCs thrown in for good measure. I would consider that a lot. Everyone, civilians and valvers alike, experience arrhythmia more often than you would think. I am very "heart-aware" so I can feel them all. Many people cannot feel them.

While you recognize that the stress you are under isn't good for you, I don't think you should take anything for it without the approval of your doctor now, even if you do have an Rx for it. However, I think it would a very good thing for you to call your internist, or family physician and explain the stress you are under and that you feel you need to take something to help eliviate the stress.

Plus - another admonision to -stay off the internet-. It's like getting a headache and going online to research brain tumors. Researching what-ifs is fruitless. When you get concrete information from you doctor, then do research - IF needed.

If you were asking if people get swollen ankles after valve surgery, then the answer is Yes. Because most everyone, with or without valve surgery, will get swollen ankles to some degree if they stand for long periods of time. If they aren't used to standing that long, if they had a high sodium meal the day before, if they aren't used to exercise.... many reasons. There are many times I come home from a day of freelancing and have mild edema in my ankles. But so do the women I work with who don't have an artificial valve. Time to stop evaluating yourself for all the symptoms you are reading about on the internet.

I have a slight tricuspid leak. My cardio says that many people have a tricuspid leak, sounds like it's one of those things that no one is surprised by.

 

[Christina L]

Thanks Karlynn -

Thanks Karlynn -

The Buspar was prescribed by my cardiologist about 1-1/2 years ago for anxiety, but I just didn't like taking ANY medication. I will ask him about it when I see him, but right now I feel I need to start on something.

I am just very scared right now and I know that most of you on the board understand my feelings. It is not a fun thing to read on your echo report that you have mild ventricular enlargement and mild right atrial enlargement that you did not have two years ago.

I hope you will be patient with me. I am leaving the computer behind for today - Wayne has been trying to lure me outdoors to get me away from this thing.

There is NOTHING I can do about any of this, so might as well go about my business until I see the cardio, right?? However, the worry and sadness will continue until I get some clarification and find some acceptance of my lot in life.

When Mom died from breast cancer, I took on a new way of thinking, that God did not intervene in our lives (good or bad). So, I thought it was a waste of time to pray to ask God to change things (I would only pray for strength). Well, now, you know...prayers and crying out to God are happening big time. A person has to have hope - that is what I am finding out through all of this.

Christina L

 

[Nancy]

Cnristina-

Joe has had PH since late 2002. And his was severe. The Tracleer worked very well for him, and he has never needed oxygen. He does have to be very strict about sodium and keeping his congestive heart failure well controlled.

If it's of any comfort to you. I have arrhythmias too when I'm nervous. They've been checked out many times, and they are benign and stress related. They do feel very strange though, and when I first had them many, many years ago, the more I thought and worried about them, the worse they got.

So now, I just ignore them, and they go away.

So many people have arrhythmias that are not serious. They should all be checked out, but if the doc says that they are benign, I'd go with that.

 

[geebee]

When Mom died from breast cancer, I took on a new way of thinking, that God did not intervene in our lives (good or bad). So, I thought it was a waste of time to pray to ask God to change things (I would only pray for strength). Well, now, you know...prayers and crying out to God are happening big time. A person has to have hope - that is what I am finding out through all of this.

Christina L

Keep asking God for help. He answers all prayers even if the answer is "no" when it comes to making changes in our lot in life. He always provides the strength to get through and always provides the support to do so as well. We will be your support - you just have to try and listen to the answers you seek.

I hope you got out today in the beautiful mountains. I just got home from a local car trip and a wonderful sushi lunch. The sky is so blue today but always seems that way after a storm (and often before the next one rolls in).

 

[Karlynn]

I hope you will be patient with me. I am leaving the computer behind for today - Wayne has been trying to lure me outdoors to get me away from this thing.

There is NOTHING I can do about any of this, so might as well go about my business until I see the cardio, right??

Good girl! Now why are you reading this? You're supposed to be out enjoying yourself!

God is there with you Christina. When I was really sick I used to use visualizations to calm and comfort me. It was really just a form of prayer that didn't include words. I could swear there's an indentation in my living room couch from where Jesus would sit with me. It's really one of the reasons I don't look back on that tough time in my life with resentment. It was a time where I really had to lean on my faith.

 

[BDMc]

Anxiety and Reassurance

Anxiety and Reassurance

Dear Christina, I think if you are still suffering this extreme anxiety, you should make plans to deal with it first thing Monday morning! First call your PC, and then Cardiologist! Fantasizing about your condition isn't helping, and you are suffering without need. Perhaps your PC can give you an apropriate RX for the anxiety, or a referal to some specialist that can help. Having spent months living with an aortic aneurysm, knowing I needed OHS, and then finding out my valve replacement was recalled, I know about living with anxiety. Slow down, try to focus on the facts, review this thread. Stop torturing yourself, and those that love you. No matter what, sticking to the facts, and getting expert interpretations of them is the path to a happier life. All the best, Brian

 

[Christina L]

I have had all afternoon

I have had all afternoon

to think about things, so here goes:

I have thought of this issue before - I have researched right heart enlargement and it can be caused from pulmonary hypertension caused by longterm mitral regurgitation, or from left-sided heart failure or mitral STENOSIS. I don't think I had left-sided heart failure, although I am not sure if I know the difference between enlargement of a heart cavity and heart failure. When are you officially in heart failure??

I got off track, but the question I have is can a mitral valve repair make the opening of the mitral annulus too small, causing a sort of man-made stenosis that is causing this right-sided heart enlargement? It is interesting this is all happening post surgery and I came upon the Cleveland Clinic board where a gal was talking about her right-sided heart enlargement post mitral valve repair or replacement (I can't remember exactly which). If they put the wrong size valve in or the wrong size ring, would this cause problems?

Please don't chastise me for having more questions and thinking too much - it is what I do best!! Should I ask my cardiologist this question?

The technician who did my echo last week was talking to the other tech and said, "see how small the mitral opening is now - that is how they are supposed to look after a repair." Hmmmm.....

Thanks for your help.

P.S. Karlynn - I will try your visualization. I know I did that with Mom - visualizing Mary and/or Jesus standing beside her, healing her. It didn't keep Mom here with us, but it did help my state of mind at the time I suppose and I know they were there comforting her.

Christina L

 

[joanne6]

Correction

Correction

Just as an FYI, pulmonary hypertension caused by valve disease usually does
resolve or markedly improve after the vavle is repaired. This is not primary pulmonary hypertension. If you had it before your surgery it should be much better by now. I would definitely advise that you talk to your doctor tomorrow. It sounds like you are making yourself sick. Your primary cardiologist should be the only person to go over test results with you.
When I was in the hospital last week, I got various interpretations on my EKG's, monitor, etc from different people. Good advice I got from my sister-just listen to your primary doc!!
Try to relax and get a good night's sleep. I will check in tomorrow after I get home from my first day of my first new job in 30 years. Take care.
Joanne

 

[Christina L]

Thanks Mark

Thanks Mark

for your post. I am happy for you that you are doing so well and hope that it is "nothing" with me also, although what I am going on is not a subjective statement made by the doctor, it was based on objective data from the echo. I have a mildly enlarged right atrium and right ventricle. That is about as scary as it gets - at least to me.

I really haven't gotten any responses from others on the board as to if they have any enlargement of their hearts, except for the left atrium, which I do also - that was known before the surgery and usually comes part and parcel with mitral regurgitation.

Did your left atrium shrink back down, Mark, after your surgery?

Wayne and I went to dinner tonight and I asked him if he would want to move down to a lower altitude - it will do him in if we have to do that (he loves living in the mountains), but personally I would feel better about my heart situation if we were at least 2000 feet lower in elevation. My cardio has told me that doesn't make a difference, but all I have read on the internet (ha) says that constant exposure to high altitude is not good for a "bum" heart.

Thanks again for your kind words. I will let everyone know what the doc says - we hope to get in to talk with someone tomorrow and see my regular cardio later this week or next week as he is not in the office for the next several days.

Christina L