CRT-D: New and out of my mind with anxiety

internet searches

by Tracey_E - 2018-09-17 14:50:35

Scared is normal. Wanting to know more is normal. Taking some time to process and accept is normal. 

When you go online and find places like this, a lot of what you read are the horror stories, the people who have rare complications and go looking for answers. For every person posting their troubles, there are thousands out there who are getting on with their lives and doing just fine. Yes, complications can happen. No procedure is without risks but this one is very low risk and the potential benefits far outweight the small risk. For getting a pacer/icd, all complications together are less than 1% which means there's a 99% chance everything will turn out just fine. 

VT can kill you if it doesn't stop on its own. An icd will increase your chances of surviving a life threatening run of VT because it steps in as soon as there's a problem. Many people go years and years and are never shocked but it only takes once to save your life. A guy passed away at my gym last week in the middle of the workout from cardiac arrest. He was in his 40's, fit, and long time member of the gym. I don't know if an icd would have saved him, but without it, and being at a place that had emt's there working out to help immediately but didn't have an AED, he didn't have a chance. This is why if they think there is even a small chance you could have a life threatening rhythm, they offer the icd. That's the D part. 

CRT is the other half, that can help the myopathy and possibly raise EF which gives you a better quality of life. 

Yes, you'll be able to swim and just about anything else you want to do once you heal. Tell them you swim so they can be sure to place it deep enough that it doesn't get in your way. Competitive martial arts and tackle football aren't generally recommended, we can't get a job running those giant magnets at the junkyard, and we aren't supposed to tour power plants (tho I have done that one). That's about it for restrictions. Sometimes CRT can increase ejection fraction so you may find you're doing more because you'll have more energy. Even if you don't come out of it feeling stronger, you'll be safer. 

It's going to be okay

by Gotrhythm - 2018-09-17 15:14:30

Whoa! Take a deep breath. You're reacting as if a CRT-D is a death sentence. It's not.

I've had several friends who had CRT-Ds. None of them experienced dire complications. All were able to return to activities they enjoyed, in their cases tennis, golf, and hiking.

There is no reason to assume you won't be able to swim after the incision has healed and every reason to assume that you will. People with CRT-Ds engage in just about every activity/exercise you can name.

About complications. While not common they do happen. The best way to deal with them is to be proactive. A surgeon's skill and experience make a big difference and can greatly improve your odds. Do your research. Find out which surgeon at which hospital has the best results with fewest complications. Even if you have to travel, go there. 

Thanks

by BarbD - 2018-09-17 16:42:27

Thanks for the replies - they really help.  I think I need to find a support group where I can talk to others with similar issues so I can overcome all these negative feelings. TraceyE - I really hope that my EF will improve if I get this device.  Gotrhythm - I am just so afraid that CHF is a death sentence and I need to hear that its not and that people can still do ok and be active and live for many years with it.   I think I need some anxiety meds to help me get thru this.

living with CHF

by Tracey_E - 2018-09-17 19:03:39

CHF is absolutely no longer a death sentence! Meds have come a long way, pacing can help. Ask your doctor about cardiac rehab once you heal, get back into exercise while under medical supervision so you're not constantly worried you're overdoing it. Many people live full lives while managing CHF. If you think anxiety meds will help you get over the hump, talk to your doctor about it. Do what you gotta do to get through this and start to see the light at the end of the tunnel. 

Holy...

by ROBO Pop - 2018-09-17 19:53:20

... crap, thank goodness nobody told me about all those potential problems or I might never have gotten any one of the 3 CRT's I've had crammed into my shoulder...

I'm kidding. Of course there's risk associated but there's higher risk without the device your VT could go into V-Fib which is usually terminal unless somebody who knows CPR happens to be standing next to you. I can't promise one of those nasty things won't happen to you but the odds are against it. There're millions of people walking around leading a normal life (don't look at the members here, they're strange to say the least) and forget they even have a device implanted. 

Rest assured my heart is a train wreck and they keep trying to get me to have a transplant but here I am 11 years, 7months and more since they told me I was a dead man walking. It ain't the end of the world. Just educate yourself, communicate with your medical team and take life as it comes, this is just a new adventure that we can help you along. 

As for EF, at 35 that ain't all that bad. Remember 55% is considered normal, nobody puimps 100%. I'm at 15% and lead a fairly normal life. 

As for limitations, you set those. Well I will admit I was rejected for Sports Illustrated swimsuit cover because of the scars but hey there wasn't any demand for an ancient male model anyway. Stop worrying and enjoy your life.

My mother-in-law was convinced she was dying and spent all of her time running to doctors, she finally was proven right 15 years after she decided she was dying. Remember if all you do is worry about dying you really aren't living. 

Getting back to my meditation practice since my surgery

by loblolly - 2018-09-17 20:18:37

This site is so helpful in combatting anxiety. It has been really reassuring to me to learn others stories, and given me so much hope and optimism about what I'll be able to do once my incision heals.

Another thing that's helping me is meditation. I've done meditation in the past, but had gotten out of the habit. Since my surgery, I am finding that getting back to a few minutes of simple seated meditation with a timer really helps me feel calmer the rest of the day. I use a simple meditation app called "Insight Timer" that allows you to set a timer to how many minutes you plan to meditate, and gives you the option of meditating to chimes, guided meditation, nature sounds, or music. It gives you milestones to reach, and you get a bell symbol added to your profile when you reach a milestone ( like 10 consecutive days of meditating). It also has a social feature, and you can add friends ( my daughter and I both use this app ). You even get messages of encouragement from others meditating at the same time thanking you for meditating with them.

I think we are the lucky ones- sure we didn't want our various diagnses , but once we get past the surgery and heal, we have our lives back again.

Thanks again

by BarbD - 2018-09-18 12:16:39

Thanks again for the support - I really appreciate it.   How do I go about finding the best doctor/hospital to do the surgery?  I'm in the Boston area and currently going to Tufts Medical Center/Dr. Madias.  Does anybody have any experience with this team?  I know Mass General is an option that I can look into, just not sure how you find the best doctor.  Any advice?

The "best"

by AgentX86 - 2018-09-18 23:35:58

One good place to go is the Agencey for Healthcae Research and Quality.  It's a Medicare funded site that has all sorts of information about healthcare, including ratings of doctors and hospitals. Somewhere in here is a list of the numer of each sort of procedure Medicare pays for, by doctor.  At first thought, this might seem to be lacking because it only includes what Medicare pays for but in the case of heart procedures, a major portion are done on patients over 65, so the numbers aren't all that bad.  For a tricky procedure, like ablation or lead removal, for example, you want someone who does a hundred or more a year.  This is a good place to find this information.  I've lost the direct link to this information but it's all on this site. Maybe someone can ferret it out and post a direct link.  Lotsa neat infromation in here, though (looking for information in here is like reading an encyclopedia - you never know what alley your interest will take you down).

<https://www.ahrq.gov/>

You're in Boston...

by donr - 2018-09-19 03:25:29

...Throw a rock in any direction & it will hit an outstanding hospital.  With outstanding doctors.  You can safely limit your search to the Boston area for "Good" EP's. 

Donr

CHF

by Grateful Heart - 2018-09-19 15:47:32

I've seen some of those internet articles.  According to the articles, I only had 5 years at the most.  I just had my first device replaced after almost 10 years. 

I posted a longer response to McGrewCrew4 further up the page.  It may be helpful to you.  I'm more active now then before my CRT-D.

Just don't get one of those funny helmets like ROBO wears.  That screams CRT-D.

Grateful Heart 

waiting

by dwelch - 2018-09-28 05:21:19

Well it wont heal itself by doing nothing, thats generally the rule. So is doing something worse?

These devices are easy to live with, much much easier than wearing glasses.  And nothing about the device would prevent you from swimming in the lake once the incision has healed, before then you are asking for trouble with infections but thats true with getting a good scratch before going in the lake as well...

just like car and plane wrecks in the news or bad reviews for a product on amazon, for everyone you find there are thousands or orders of magnitueds more folks that were happy and content, those folks dont bother to talk about it or ask questions.  We could create a log list of bad things that can happen between your house and the hospital or between home and work every day or between the bed and the bathroom.  You could step on a tack in the carpet in the dark going to the bathroom at night, get an infection swimming in the lake the next day and lose your foot/leg not long after.  Does that keep you up at night and unable to eat concentrate?  It shouldnt.  An airplane engine could fall off of a plane and land perfectly on your house in the room you are in now.  Someone driving he other way on a two way road could wander into your lane.  There is an endless list.  

The surgery and having the device wont limit you.  Your condition that lead to that device might so you need to talk to your doctor.

The surgery is easy, lay down here we will give you something to make you comfortable. Comfortable varies depending on docs and other factors from awake-ish but kinda woozy to flat out dont remember, wake up after its all done.  Ive had both, no worries either way. 

Recovery is really no big deal it doesnt feel like that day one but every day is easier and in a relatively short time its over and you are forgetting its there.

agree don't get the helmet lol

by jessie - 2018-11-09 00:44:56

seriously all the advice is spot on and it does take a bit to settle down with your new device. i am on my 2nd with three leads....it helps to read info at this site. it usuallly is calming. if i am still here for another replacement which here in canada they ask you if you want to live .{it's true if you say no then i assume they leave you to get on with it} i quickly said yes before i could be judged. i know the gamut now so will quickl reply yes to the question unless in fact i am terminally ill. seeing there are more abnormal people now than normal  it's a big risk to even go about your daily life. we are in a 55+ building and since we bought here it's hard to get out. since jan three people have been place in a locked unit for bothering others this is for life. it's a foundation run by a few good old boys who enforce rules that are broken every day. it's a good thing we have a sense of humour. all in all most here are helpful towards others. take care and try not to worry. jessie

robocop

by jessie - 2018-11-09 00:53:03

i know that remark was meant for me....some people here even forget they have devices...so strange...i am fortunate that i have never had a complication....well wait a minute....it sometimes gets a bit sore locally in damp weather...when i keep warm it improves...

ANXIETY

by Exactly - 2019-03-24 14:02:26

I too was very afraid.  I waited and stalled for 2 years, sure that I would be in the small majority who had a bad reaction or event.  When I finally got PM#1 my EF went from 18% to 45%. Not overnight,of course,  I had a couple of good years and then it began to drastically lower. PM#2 and EF 20.  

Get it!  The odds are extremely good that you will do well & probably make positive strides forward. 

Swimming in a lake, well or w/heart problems or PM, always has risks.  Spend your life doing what you love as long as you possible can!