More Noobie Questions

[Sean L]

So, I now realize I must get my own copy of my Echocardio. I shall do so this week. I am also waiting to talk to my Cardiologist. My first appointment EVER with a cardiologist was on the 16th of this month. And I was still in denial, thinking he would say the techs screwed up the echo, etc...

Cardio: "Any questions for me?"

Me: "Uh...what...guess not."

...Sort of the medical version of Ralphie forgetting to ask Santa for the Red Rider BB gun.

I have been scouring this site, looking at tons of posts. And while I can't remember a whole lot from them (head still spinning), I do know this: I need to OWN my diagnosis, OWN my medical condition. Because, right now, there's a whole lot I don't understand. I think, by doing so, I can help my mental and emotional state and ultimately my overall health.

Once I get my hands on the echo, I'll post numbers here...Hopefully, I'll be able to post the right numbers for some feedback.

One more thing I know: I need you people. Thank God you're here. You made it possible to get thru Christmas...Thank you so much.

--Sean

 

[BAVjohngo]

Ignorance is sometimes the best

Ignorance is sometimes the best

With any injury to a specific part of the body, it is best to work with what is healthy and make those areas stronger than they have ever been. For instance, if a knee is damaged work on your hip flexability to get circulation to ligaments and joints. The same goes for the heart. If your lungs are healthy and so is your diaphram look into using your breathing to adjust or lessen the stress on your heart. Meditative hobbies that bring you enjoyment and less stress is what you need right now, not a scientific report that will make or break you emotionally. It is tough looking at your family and knowing that your health isn't what it used to be. When things settle and you slowly begin to understand you'll learn new things--the subtle parts of managing a heart condition.

My neighbor is in his 80's and there is nothing the doctors can do for his heart. When I talk to him I'll say to myself "if only I could be so lucky."

 

[Marguerite53]

Isn't this place great??!! I'm glad that you found us.

I think the comments made above by BAVjohngo are astute. I think you should consider re-reading them in a few weeks. Anxiety is a rough road -- his words may help you. Right now, most of us would totally agree with your seeking to understand everything through the numbers. Doctors use these numbers so it is important to strive to understand them. You will simply feel more in control if you can understand them. Even when people explain them to you, however, you probably won't understand them right away. It is all very complicated stuff. So don't worry that you don't understand, okay? You have plenty of time to figure all this out. Most cardiologists have a really good nursing staff. You can call them any time and leave a voicemail and ask them questions. Then they call you back at their convenience. This is an optional way to learn things particular about your situation. Everyone is different -- there are so many variables. It is good to build your knowledge with your own very specific variables at the forefront. If you only do research here, you will get stilted information because everyone is different so things that have happened to one person may not happen to another.

Feel free to start very specific threads (and as many as you can keep track of!). You will get better, more rich answers if you title your querry with specifics that our many members will be inspired to answer.

Good luck. Be patient. Remember how manageable all of this really, truly is. Really. Honest!! In the scheme of all things that could have landed on you -- this one is really okay!

:smile2: Marguerite

 

[Jason]

Good luck. Be patient. Remember how manageable all of this really, truly is. Really. Honest!! In the scheme of all things that could have landed on you -- this one is really okay!

:smile2: Marguerite

This struck a chord with me. I just went through my surgery in the last year, and some of your (Sean's) comments are definitely reminding me of where I was with the diagnosis. However, one of the guys I work with had a very good point similar to Marguerite's when I finally told him what was going on. He said to me, "That's it? They can fix that. I was worried you had cancer or something!" At the time I thought he was incredibly insensitive, but after thinking about it for a few days I realized he was right. There are very good, proven fixes for what we have all had. Sure it will require some new management techniques in your life, but after a few months many are as good as new. Or, as my surgeon commented, better than new when compared to the bicuspid valve I was born with!

 

[dick0236]

....I do know this: I need to OWN my diagnosis, OWN my medical condition. Because, right now, there's a whole lot I don't understand. I think, by doing so, I can help my mental and emotional state and ultimately my overall health.

Once I get my hands on the echo, I'll post numbers here...Hopefully, I'll be able to post the right numbers for some feedback.
--Sean

Your condition is fixable. I know that it is a hard nut to swallow, especially if you have had few systems....but, as hard as it might be to accept, it is not normally a big deal anymore. Personally, I think posting "echo" numbers can lead to misinterpretation and confusion when read by good intentioned "lay" people. I prefer getting a copy of the echo summary my cardio sends to my GP. If there is something I don't understand, I ask my docs......that's what I pay them BIG bucks for. Glad that you found this forum....it has a wealth of info, support and opinion.

 

[Mentu]

Sean, welcome to our little community. I can't add very much since you already have responses from some very thoughtful people. I'm another of those whose early experience was similar to your's. I learned of the stenosis when I was 50 and it was shocking to hear that I had a serious heart problem that could result in my death if not monitored and treated. It was several weeks before the "monitored and treated" part began to soak in. The "monitored and treated" is something to think about and, as I hope you have discovered reading people's experiences here in VR, the treatment part is very good today. I think it is a very positive way to begin...learning about your condition and keeping records of test results and such. You might also consider speaking with your family doctor about reviewing test results with you and serving as a "clearing house" for the information flowing from the different specialists you may encounter. You can certainly share your test results with us here and we will share our thoughts with you but your doctor is going to evaluate your test restults within the context of your current state of health and your medical history in order to provide you with the most clear picture of what is happening.

By the time people join our group, I think most have already begun accumulating a stable of anxieties. Speculation breeds anxieties; knowledge helps them dissipate. I worried about all sorts of things. My Father had three heart attacks caused by arterial disease and two of my brothers have serious lung issues so I worried that I must have the same. I have not lived my Father's life and unlike my brothers I've never smoked. As it turned out, I learned I had no arterial disease and my lung function was excellent; so much for a lot of needless worry.

While I've turned to my doctors for definitive answers (I can't say I always get "definitive" answers) our community here in VR has listened to me and understood what I was experiencing and has proved to be wonderfully supportive,reassuring and encouraging. That's our role, Sean. You may find that it will be quite some time before your doctors recommend surgery but during that time you are not alone.

Larry
Tulsa

 

[catwoman]

I was lucky when I got a diagnosis of mitral valve prolapse in early 1990. A woman in our Sunday school class worked for the Fort Worth Chapter of the American Heart Association and gave me a wonderful book about the heart. I read and read that book. Was not referred to a cardiologist for annual rechecks after the first echo, but I did have annual physicals.
However, even though I knew I had MVR, it was still a big jump from "You'll probably never need surgery" (based on statistics) to a cardiologist saying, "You need surgery ASAP and you need to go to the Mayo or Cleveland Clinic."
That was a shock.
So, I understand your position.
What I did was read, read, read, and switch to my dad's cardiologist in Dallas, where I had surgery. I did not find this website until several months post-op.

I already knew what type of valve I wanted, so it was just a matter of realizing I really did need surgery ASAP, that I was very symptomatic.

Once you get your echo, you do need to pursue getting a consult with a surgeon. When I had my surgery, we scheduled the heart cath and a TEE for the day before and on the OR table. When my husband needed MV surgery, both surgeons he consulted required that he have a TEE and heart cath before appointments with them. He took videos of them to each appointment.
So, you will probably need to pursue getting those procedures done to provide any surgeon with information as to what exactly is going on with your heart.

 

[Nancy jane]

Sean the folks here are awesome. Use them. I'm too new to be of much help as I go in 2-9-12 for Avr. But I do know that in explaining to kids & grand kids I told them a story - I said if your car is running pretty well after years of use - & all of a sudden it needed new mufflers. What would u do ? " " well get new mufflers of course " was their answer. So I explained our bodies are like a car - & while I look pretty good and am pretty active I need new mufflers. - & explained the valve.
Oddly enif the 14 year old grandson Said " that was a pretty cool story". And it wasn't too scary for them. Feel free to use it. If u want. Nancy.