help I am freaking out about my last check

When I went in for my last check up, my doctor scheduled me some tests because I had not been in for over 2 years. He said that these tests are to see if my pacemaker helped my heart go back to a normal size. I had an echocardiogram. I know the operator can't really tell me anything but I asked if it was better or worse anyway. Sure enough she told me from what she had seen it got worse. I have to call my cardiologist Monday and I am freaking out because I don't want it to be chf, like I am almost sure it is. I am 21 years old. All the information I have found online says that within in 5 years half of the people diagnosed with chf will die. I don't want to die this early!

11 Comments

Take another deep breath

by Grateful Heart - 2014-11-22 02:11:56

I am 57 years old and have CHF. I have had a CRT-D for 6 years. I'm sure glad I didn't read the online sites that you read....stay off of them.

My heart is no longer enlarged and my EF went from 24% to 50%.

It's possible you may need an "upgrade" to a CRT device.

Here is a link for you:

http://www.medtronic.com/patients/heart-failure/device/what-is-it/

I'm sure your Doctor will have a plan.

Try and stay positive.

Grateful Heart

Thanks guys

by vbpoppy18 - 2014-11-22 04:11:42

My original doctor did not tell me that was the reason why they implanted the pacemaker... she said it was because my pulse was only like 40. She never told me her plans were to see if it helped my heart... So I became the normal college student, eating junk food, eating out more times then not, staying up too late. It was almost 2 years before I decided I should have my pacemaker checked... I thought it was malfunctioning because my heart was rating every now and then... and good thing I did... I am not in the best of shape either 5' 10" 370lbs... After all this I will lose weight and hopefully that will help greatly.

Me Too

by Many Blessings - 2014-11-22 06:11:16

Hi, vbpoppy18,

Try not to worry about what you read. Add me in with the others that are and/or have been in CHF for many years. I've been in it since I was a kid (lower levels), and I'm 54 now. Even with 2 OH surgeries and numerous procedures, I was in Stage C/Class III for many of those years, and was moving in and out of Stage D/Class IV several months prior to my CRT-P with AV Node ablation (and other procedures). It was that, or a transplant. I also have an enlarged heart, low EF, and a lot of other heart problems, most since birth.

I say that because I want you to know, you can still live longer than what you read, even having a lot of heart problems, including CHF. A lot of us out here are to that point, so please try to concentrate on the positive and know you may be able to continue with a normal or semi-normal life for a very long time. You may have to make some adjustments or life changes, but you may be able to still live at a normal level.

I know I'm not the only one out here who has heard "you only have about a year, or you only have a few months" most of our lives. I didn't listen, and made it my mission to prove them all wrong. And, I did!

So far, it doesn't sound like you've been told those words, so please don't worry until you talk to your doctor. You may get good news when you go in for your follow up appointment with your cardiologist. They have seen this all before, and may have numerous options to help you. You have youth on your side since you're still young, so use that to your advantage. Focus on the positive, look for the good, and see what you can find out there to make things better for you. Your doctor will help you there too!

Practice deep breathing, relaxation, and staying positive. YouTube has some great videos on all of that if you don't want to buy any. Spend your time looking for positive things to read and watch, and ignore the bad. Laugh as much as you can. Watch funny videos, shows, movies, or anything else you can get your hands on. Enjoy life, eat healthy, drink lots of water, and stay away from the unhealthy stuff. Also, get outside and enjoy the beauty that's out there, even if you're just sitting on a chair. Walk if you can, just get out there and breathe in that healthy air and beauty!

I hope you get good news on Monday. Things may not be as bad as you think they are. I wish you the very best and will keep you in my prayers. And, remember, you are not alone!

Best wishes!

Thank you

by vbpoppy18 - 2014-11-22 07:11:00

Many blessings,

Thank you for your post. It helps a lot since I was originally diagnosed in 2012 at 18, although the doctor did not tell me. I am just afraid, you know?

I have been trying to get my mind off of it, hanging with friends, playing video games, you know all the stuff college students do.

If the doctor tells me I have to be hospitalized, I will probably lose my job. My employer, oreilly auto parts, will probably fire me because I didn't tell them that I have a pacemaker.

job security

by Tracey_E - 2014-11-22 08:11:51

You don't have to tell them about the pm unless it affects your ability to do your job. It's none of their business and they can't fire you over it. But there's no reason to think you'd be hospitalized! You had standard tests that keep an eye on your heart function, that's normal for all of us.

Heres a hug

by vattens1 - 2014-11-22 09:11:57

Oh Honey, really dont be worrying, think of it, what does worrying do, absolutly nothing, puts you in a bad mood, makes you think all sorts of things are wrong, you keep thinking the worse, then you'll go into the Dr and they will say all is well, Your are young, Brilliant, go out live life, play PS3/4 Nintendo xbox whatever and have fun with your friends. get a dog and give it a hug, (always makes you feel good lol) if your a girl, practice your make up, a boy have a look at new hairstyles or clothes, occupy yourself, but please dont spend time worrying, it really does nothing other than waste your time, be positive, its always a good thing and I feel sure you will get great results on Monday

take a deep breath!

by Tracey_E - 2014-11-22 10:11:30

Wait til you have facts first and (yes I know easier said than done!) but try not to panic until then.
1. there's a reason the person doing the echo isn't supposed to talk, they aren't a dr and don't know your situation
2. the average person with CHF is not 21 and otherwise healthy. Ignore those statistics, they do not apply to you. Hopefully that is not the case, but know that there are treatments. It's not a death sentence.
3. quit googling! It's too easy to take things out of context.

Thanks guys

by vbpoppy18 - 2014-11-22 11:11:33

I wish I could get a dog. I live in a dorm :( another problem I have is that I don't know how people are going to react when I tell them I have these problems.... I will talk to my doctor Monday and hopefully we will be able to get this crap under control! I will not let this be the death of me... I want to live a full life...

Don't borrow trouble

by Theknotguy - 2014-11-22 12:11:10

Same thing for me. Tech person wouldn't talk. Doctor said it was mitral valve regurgitation. Did some research on the weekend. All came up bad. Then found out 20% of the population walks around with the same problem with no symptoms.

Same for you. May be enlargement of the heart due to normal growth. Like TracyE said, there is a reason tech people aren't supposed to talk - they don't have the whole picture. And sometimes what appears to be bad news from them isn't.

So if you are feeling good otherwise, I would quit worrying. I know in your 20's it's that's hard to do but try anyway.

Another thing, you don't know from your reading what statistics they used for the articles you read. 80 year olds have a greater chance of dying within 5 years of CHF. Those statistics don't hold true for 20 year olds.

Quit taking things out of context. You've got a long life to live.

Write Down Concerns For Your Dr. Appt. Tomorrow

by Many Blessings - 2014-11-23 07:11:08

I know you're panicked right now, but I think you're going to feel more at peace after your doctor's appointment tomorrow. I really do.

Write down all of your fears, questions, concerns, and worries so you can talk to your doctor about all of them. Make sure to write them all down, and keep adding to the list, otherwise, you'll forget to ask some of them.

I know it's scary thinking about losing your job, but there are policies to protect you to some point. First of all, I know most companies are "at will" employers nowadays, so they can let you go for anything they want to (ours does, and has, medical or not). But, when you are in the hospital or unable to work because of an illness or serious health condition, you will be protected for a certain amount of time with the Family Medical Leave Act (FMLA). There are ins and outs to it, but you will want to inquire about it if you are currently working and suddenly unable to do so.

Since you can't have a dog, maybe you could go and visit an animal shelter and volunteer your time. Right now, I know you're unable to do a lot of things, but if you can drive there, you can always groom or play with the dogs or at least pet, hug, and kiss them. That might help.

I really believe you're going to feel a lot more comfortable with things as soon as you talk to your doctor about things. He/she can ease your mind on a lot of your worries. And, everyone out here feels your pain and fear, so we'll all help you too.

You can private message me any time, since I have been through the whole growing up and explaining things to people. I usually didn't explain, unless it was a dating situation that was turning serious. Even then, I would have kept it to myself, but I wanted to warn them about my scars. LOL!

Right now, you're scared. That will pass. Remember to write down all of your questions so you can talk to your doctor tomorrow. Ask him/her exactly what you have going on, what options there are to fix things, whether it be medication, procedures, exercise, diet, relaxation, etc.

Let us know how you do tomorrow!

This is making me feel worried

by vbpoppy18 - 2014-11-25 03:11:13

I called my doctor yesterday and the receptionist said she will leave a message for the nurse. Well the nurse called and said the doctor hasn't looked at my echocardiogram, but she will call me as soon as he does... that was yesterday at like noon.

You know you're wired when...

You get your device tuned-up for hot dates.

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I am just now 40 but have had these blackouts all my life. I am thrilled with the pacer and would do it all over again.