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Community Question: “When Will The ‘Voice of Doubt’ Go Away?” Asks Stephanie

Posted by Adam Pick on May 23rd, 2012

Earlier today, I spent some time at Heart Valve Journals, our online community. While there, I read an interesting question posted by Stephanie Cole, who had mitral valve replacement surgery on March 16, 2012.

In her journal, Stephanie asked, “When does that little, tiny ‘Voice Of Doubt’ go away? Is my valve still intact? Is my heart still shrinking? I love the freedom to do ‘anything’ but what if the doc’s were wrong? I wish I could have monthly echo’s for reassurance.”

Personally, this question conjured up several familiar feelings for me. So you know, even though my surgery was six years ago, I still  have moments when I think to myself, “Is my heart really okay?” or “What was that twinge of pain going down my sternum?”

That said, I wanted to feature Stephanie’s question in this post and see what you think. Do you have any thoughts for Stephanie? Do you still have any doubts or concerns after surgery?

In advance, thanks for sharing your experiences!

Keep on tickin!

Adam Pick
Written by Adam Pick A dad, a husband and a patient, Adam Pick founded this website in 2006 to educate you about heart valve surgery from diagnosis to recovery.
You can get the latest updates about heart valve surgery from Adam at his Facebook, and Twitter pages. Click here to email him.

 


Jayne Goldstein says on May 23rd, 2012 at 4:26 pm

I am so glad Stephanie asked that question. As a parent of a young patient (25) who had aortic valve repair, I still worry every day and also wish he could have an echo at least once a month to make sure everything is ok. On the rational side, I know he is feeling well and running four miles almost every day, but the fear is still there.

 


Jacqueline Smith says on May 23rd, 2012 at 4:55 pm

Hi Stephanie!

First of all, congratulations on your surgery in March—you look great! I had a mitral valve repair in December of 2002. I suppose it depends on each person’s outlook, but even though mine was 10 years ago, I find that I still have doubts. (not all the time-and less now than initially) Every year when I get my cardio check-up–echo, EKG, etc.–I get a bit anxious. I suppose this is normal? It’s my opinion that even though we’re strong survivors, the open-heart surgery is very traumatic and now we’re noticing everything connected with our hearts- even more than most people. If I have a twinge, or irregular heartbeat I automatically connect it to my repaired valve as my first response, and have to realize I’m actually OK and “all will be well”. :)

 


Mark B says on May 23rd, 2012 at 5:07 pm

The doubt does not go away. It cannot. The nine inch scar is a daily reminder. But my relationship with the doubt has evolved greatly over the past nine years. The initial shock and mindful effort to move carefully, as if my heart was fragile, gradually eroded. Each echo brought a sense of reassurance. Each “Heart Birthday” told me that I was well beyond the point of early failure. While the occasional chest pain does begin a cascade of “What if’s” and the annual Cardiologist visit does cause apprehension, I feel confident with my heart.
If I could tell Stephanie one thing it would be to look at every day and each activity as reassurance. Take full advantage of the freedom to do anything while be mindful, but not afraid, of your heart.

 


Gene Parrish says on May 23rd, 2012 at 5:31 pm

Stephanie, I think we will always have those little “voices of doubt”. I have them 3-1/2 years after my surgery. It’s natural – it’s our heart! But if you feel okay, and you have favorable check ups as time goes by, the doubts will be a little less frequent. I certainly hope your recovery goes well. A positive outlook will go a long way!

 


Dennis Ruffini says on May 23rd, 2012 at 6:25 pm

I still have moments but we only have one direction to go, forward into the future.
I had Aoritic Bio Root replacement -Equine valve – Anyusirm repair- at Columbia in NY.
I am 58 and Doing great, now that I have passed the year mark, sometime I actually forget. But what a year it was getting here, lots to talk about if you want to. I haven’t done that much, you will be ok , my biggest fear is stress don’t want to wear things out to early.

 


Jeffry Pirofsky says on May 23rd, 2012 at 6:53 pm

I would first like to say conrats to you. I have no doubt that all responses will basicially say the same thing which is everyone has a little voice that talks to them. I also doubt this little voice will ever go away. In a strange way that is not a bad thing. It should be there to remind ALL of us that we need to take care of the ONLY body that G-d gave us. If we do that the rest will be up to him to decide what happens next.
The 2nd anniversary of my surgery will be this August. I had a substantial murmur for many years. I am a physician and first heard my murmur when I was given my first stethescope in medical school. This occured very early in my training and my ear was not trained to recognize different heart sounds however I knew that it didnt sound “right”. Anyway I had no symptoms and rocked along for sometime until I had an echo on a routine physical…..the rest is history resulting in a valve repair. The most amazing thing occured the day after my surgery when I borrowed my nurses stethescope and noticed that the murmur was GONE…like magic. So now when I hear that little voice I pick up my stethescope and make sure it is still gone.

 


Mike says on May 23rd, 2012 at 7:22 pm

I follow my cardiologists rules and every check up he gives me a thumbs up. Don’t let this control you. You are not defective, you are better.

 


Debby Tomlinson says on May 23rd, 2012 at 10:02 pm

Wow! Stephanie, you hit the nail on the head for my personal situation. Thank you for your post and Adam, for highlighting the post. I really appreciate the post surgery discussions~!

My “little voice” will not go away (September ’11 Mitral Valve Repair). My little boys’ (8 & 10) voices are just louder during the day:) so I have a natural distraction to enjoy.

I tend to read and focus on the people who are on the extremes to compare and see how I am doing. I either am thankful that I had a successful repair thinking about the people who didn’t. Or, I look at the person doing marathons or posting that they are better than ever. I’m somewhere in between, just below where I thought I would be.

I’m currently in the transition of accepting my new heart: limits, capabilities and all.

I am disappointed. I don’t have the bionic, super energetic…run forever capacity but also realize that my expectations of post heart health and capabilities were unrealistic for my personal situation to begin with.

I think every individual’s experience is just that…it’s all a mix of genetics, pre-surgery health, age, surgeon, surgery, and post surgery healing to the trama that your body endured to result in a unique and new heart.

Too many “I’s” in this post for even me.

Best of health and wishes to all of you, we should all just be happy to have a little voice for today!

Debby T.

 


Maria Williams says on May 23rd, 2012 at 10:34 pm

GREAT question. My mitral valve repair was Nov. 30, 2010. It took me about a year to accept that I was going to be OK. I had to have a pacemaker implanted 8 days post-surgery. I have seen my cardiologist twice since surgery; he stated that I have no leakage and that this is amazing & phenomenal. I take each day as it comes & am grateful for good health. I mentioned the pacemaker because I get checked 3 times a year so that gives me confidence that I am OK. BUT I still think about the “what ifs”, just not as frequently as the first year. God bless you.

 


Johan says on May 24th, 2012 at 1:52 am

It is three years after my AVR and, yes the doubt is still there. In another forum somebody recently asked whether a single day goes by without us thinking of our hearts and valves. That was also an interesting question and I realised that, while I tend to think of my valve often just lately, say last 6 months, I sometimes forget about the valve for a whole day!

 


Maureen Lamarche says on May 24th, 2012 at 7:52 am

Yes, even though my AVR surgery was a year and a half ago, I do get a little concerned when I feel the slightest pain in the chest area. However my monthly check up with reassurance from my doctor keep me on a even keel re this. Sometimes I look at the photos and video I have of my surgery to remind myself of the wonder of it all, and I love my heart more and more each day….

 


Mitch Friedman says on May 24th, 2012 at 3:30 pm

Awesome question Stephanie. Thanks for asking it and thanks to Adam for highlighting it in your blog. I am almost 4 months post op and like you Stephanie, I feel I am really doing great. That said, I still hear the voices of doubt and question from time to time. Especially if I get a little twinge in my chest. Great to see everyone’s reply and to know this is simply another thing we all share. Plus, it is a nice reminder how wonderfully helpful this community is. Thanks everyone!

 


Eric Desbonnet says on May 24th, 2012 at 9:40 pm

I think Adam is right because even after 2 1/2 years after my mitral valve repair I still wonder whether everything is all right. If I get a twinge in my chest or short of breath for no apparent reason I immediately check my pulse. Though it is less and less than immediately after my surgery, the thought or doubt is still there on occasion. Let’s face it, we all had a major major surgery which has had a profound effect on one both physically and mentally. I think the wonder or doubt is normal.

 


Greg says on May 30th, 2012 at 4:33 am

I see my cardiologist every 6 months for an ‘echo’. Why don’t you just ask your doc. for an echo at regular intervals. Talk it out with him. Good luck, and don’t doubt the devices, ’cause they are engineered precisely. I am due for my 3rd Mitral Valve, and hopefully a good tricuspid as well. Always keep a positive outlook. being positive helps a lot

 


Brian says on May 31st, 2012 at 2:14 pm

I can say that after exactly 4 years since my aortic operation, I still question any time I feel a little pain, tingle, flutter or odd senation. My bi-annual checkups usually set me straight that I’m OK but I think it’s normal to question anything. It’s like having a radiator leak in your car…even after it’s fixed you still have a tendency to look for leaks in the driveway long after ! It will probably fade away with time but will likely never completely go away. I’m sometimes happy for odd sensations..it reminds me I’m alive :-)

 


Mike Rehmus says on May 31st, 2012 at 6:29 pm

Thanks for verbalizing what we all feel, Stephanie.

This and other support groups, where we can ask questions and compare notes is invaluable because deep down inside, I am not sure we really trust the medical folks with their good bedside manners. Most of them have not experienced what we have. We’d rather trust, strangely enough, strangers who have gone through what we have gone through. That’s the benefit of this forum.

I get twinges and have to stop and dismiss the questions that are immediately generated by them. All the tests show my heart to be in better shape than it has been in years (me too as a result of the cardio rehab). Now it is up to me to keep the old body in shape and the further I progress in that quest, the better I feel both mentally and physically.

After 6 months and cardio rehab, I am awed by the amount of work and exercise I can do with no discomfort other than my 70 year old joints complaining if I go too long.

Now if those 25 year-old’s who are running on the treadmill next to me would just slow down, I’d feel better about my 3.2 mph!

 


Sherry Stevens says on June 1st, 2012 at 5:45 pm

Dear Stephanie, Fortunately, while my heart valve surgery may be as far out as five years from now, I do understand your question very well. I have just passed my five year cancer free mark, and that niggling voice is in my head from time to time. I doubt it will ever disappear completely, but each day I live my healthy life, I am convinced that my body has said “Thank You” for the care and attention and God is smiling on my trust in Him. We are guaranteed nothing, so I make every effort to take care of myself, learn as much as I can, serve others and LIVE EVERY DAY. I trust you will do well and life will be more precious than ever.

 


sam says on June 2nd, 2012 at 7:50 am

i had an aortic valve replacement july 2012 and only found out about my dodgy valve in May 2012 when i got endocarditis… (stupid infection).. apparently i’d had a dodgy valve since birth and no one picked it up at birth or during sickness as a child, etc. i’m only 20 now and aware i don’t have that much life experience but i CAN say…. i freak out every time i feel an odd heartbeat or get lightheaded or get a fever etc just coz for my life no one picked it up, no one checked, i let it be and then all of a sudden there i was as a 19 year old having open hearrt surgery when it could have been semi-managed and further down the track.

it has been an intense past year considering i pushed majority of my family away and the fact that no one else i know has had to deal with anything like this has made it all the more difficult… and it’s great to know that there are groups like this that are here and i don’t feel bad (a year after this situation) talking to about it.

stephanie, i can’t say when your doubt will go away coz i haven’t even dealt with it for 12 months. but realistically it won’t go away but i’m sure it’ll give you… us…. the strength and willingness to push on with a positive outlook.

good luck with all your endeavours and.. well yeah :)

 

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