Just found out today

Hi- My name is Candi and I am 31 years old. I was diagnosed with Left Ventricular Non Compaction in March. We just found out today the people with LVNC have a higher rate of cardiac arrest so I guess I'm getting a defib on June 2nd. I put off the implant until school was out because of not being able to drive after the implant. I am very worried about recovery time. We have 5 horses, 2 young children and I work with children so you can see we are very active. It was horrible after having the cath and not being able to lift for 1 wk so I don't know what I am going to do if I can't lift for 4 wks. Any words of advice would be greatly appreciated. I am pretty down today after seeing the defib Dr (who is one of the best I'm told) and being told that they just don't know how to treat my condition since it is so rare. I would love to hear if anyone on the site also has this condition and if they have an implant.
Thanks in advance!
Candi


5 Comments

welcome to PM Club

by CathrynB - 2008-05-01 09:05:47

Hi candi51,
Welcome to PM Club, and I hope you find the support and information you need here. I don't have your same diagnosis, nor an ICD (just a PM) but wanted to let you know that there are many young people like yourself who frequent this site, and a number of folks with young children, people who work with children (teachers and childcare workers), and very active people. All of us found it a shock when we learned we needed a PM or ICD, and all of us had difficult adjustments to make with the physical restrictions, surgical recovery, etc. Even though I don't have an ICD, I was not allowed to drive for 4 months after I began fainting, and since I was working 25 miles from home at the time, and had one child still at home, it was very difficult. It's true that you will have to do things differently for a while after surgery. The great thing though, is that your ability to live to see your children grow up, have children of their own, etc. will be increased greatly because you will have this wonderful life-saving device. I'm not trying to minimize the impact of what you're about to go through -- it's huge. I just want to say I know you can deal with it (as others here have done) and I know you're more likely to have a long and healthy life as result of getting this device. Please make use of the wealth of information and support that is available on this website and know that you can do this, and your life will be okay again. There is a "search" feature on this site (see top right-hand corner) you can use to type in words like "left ventricular non compaction" -- though I don't recall ever seeing this in the last 15 months since I've been active on this site) or "ICD" or anything else you're wondering about. Do lots of reading, ask lots of questions, and know that you will be okay. I hope some of the other young folks like yourself, even if they have a PM not an ICD, will respond as well (I'm 51, so not a peer of yours, though I'm a very active runner, hiker, skier, biker, etc.).

Please keep us posted on how you're doing and what questions you have.

Oh, one more thought. Most folks don't know a month in advance that they're going to get a PM or ICD, so they don't have time to ask their doctor these sorts of questions, but if I had it to do over again, I'd ask my doctor lots of questions about what make/model of ICD he/she plans to implant and why, where he/she plans to put it (near the collarbone, behind the breast, under the muscle -- different advantages to each (some of us, including me, ended up having it re-positioned later because the first location didn't work well), and whether they intend to use any ICDs or electrical leads that have already been subjec to a manufacturer's recall (unfortunately there are a shocking number of doctors who will implant products that have been subject to recall -- not something you want to find out about afterwards). Please accept my apology if this frightens you, but it's better to know about these things in advance.

Again, best wishes and please keep us posted.

Take care, CathrynB

Me Too for ICD

by LindaScarberry - 2008-05-02 01:05:00

Candi

I know exactly how you feel! I was told last month I need an ICD; my surgery date is 5/16. So I'll have one month to dwell on this before surgery! I too have kids, 13 and 19 and animals. I had to sell my horses because of cardiac asthma! Broke my heart, so to speak! This site has been great and very informative. But one thing I've had to caution myself on is that some people focus on the negative and we don't hear enough positive comments from people with ICD's. The site has been helpful for me to formulate questions for my doctor.

Any of you with ICD's; will you share your positive stories on life with an ICD.

Candi, I wish you the best. As I learn more, I'll be happy to share with you. I see my doctor on Monday so I'll share the answers to my questions.

Best of luck
Linda

Good luck!

by Swedeheart - 2008-05-02 01:05:38

I do not have the same condition as you, and do not have a ICD, but I do have a Pacemaker. One thing we do share, however, is that you have found out in advance you will be receiving your device. I knew almost for a month in advance... I let it "get to me" and got so anxious and worried I forgot to ask all the good questions. Very unlike me.... I usually grill the doctors on everything. I was so stunned I had a heart problem.... I had tests about one month prior to hearing the word "pacemaker" and they were all heart related and I received excellent "marks"! I have heart block and it presented somewhat quickly, in a matter of a couple of months. I felt really physically terrible prior to the PM and it took me a long time to begin to feel better after. I am on day 67 since implant.

If your doctor offers you something to keep you calm... if you need it, take it! CathrynB gave some wonderful advice in her post and I suggest you take her thoughts really to heart!

There are several things you might want to do while you are waiting for the procedure (besides dealing with school...) Read up on pacemakers and ICD's and I think the more you know and learn the better. Write down all your questions and ask them over a period of time (call your EP doctor if you don't have an appt.)

See if someone (family member, friend) will come and help you out with your young family for the first week at least. You will be sore, want to rest, and will need some time to adjust mentally to this new device.

You may want to ask details about placement of your ICD. I do not know how many choices you have, or if a ICD has "choices" like a PM. My pacemaker is under my left collar bone and I have a 2 inch scar. I can feel a slight bump where it is, but it is not very "visible". With that said a ICD is larger and on thin people can be more visible. For me it isn't an issue, I am 60 and my days of wearing alluring outfits are pretty much past. It may be more of a concern for younger folks. I don't mean to alarm you or anything, but I asked about placement on my pacemaker and I had a choice of where it is or more under my arm. I decided under the collar bone would be easiest for me. My bra strap does rub on it and irritate it, however.

I would also suggest that you discuss things fully with your husband or partner. Some men worry they will "hurt" you because of your ICD and are hesitant during intimacy. Discuss this with your doctor as well.

The things I have mentioned here are little, compared to living and watching your lovely children grow into adulthood! But you have time to think about lots of stuff, and ask questions. This will be a good thing once all is said and done.

There are lots of great folks here who will help you, they have been great to me! It is a worrisome time, but you will find compassion and strength here. I had trouble sleeping for quite awhile and usually always found someone in the chat room at weird hours... :)

Ask any and all questions. Find out what kind of ICD you will receive. Most of the manufacturers have great websites with good information. I have a dual chamber medtronic and I even emailed medtronic questions and the folks respond usually within 24 hours!

Hang in there!
Swedeheart

Left Ventricle Noncompaction

by Pookie - 2008-05-02 08:05:18

I found this person (thru the search feature) who has it: this is her post.


Cardiologist Appointment
Posted by KarenAmirault on 2008-01-09 11:09

Today I see my cardiologist, not because of my pacemaker, but because I have a birth defect in my heart called Left Ventricle Noncompaction. I think it is the cause of my daily dizziness, however, I have also been diagnosed with Neurocardiogenic Syncope...so who knows why I'm dizzy most of the time. I was also diagnosed with an Autonomic Neuropathy which is damage to your central nervous system that controls your pulse and blood pressure!!! I also read in some of my medical records (I have copies) is people with Left Ventricle Noncompaction are prone to blood clots! Lovely.

While going thru my Mayo Clinic diagnosis papers I found Ectopic Atrial Rhythm...My main concern is why I am having episodes of my heart just pounding/thumping and I think it is ectopic atrial beats. I have researched this a bit and found that the thumping & pounding is a symptom of Ectopic Atrial Rhythm. "The thumping or pounding is caused by the fact when there is an atrial ectopic beat, the pause before the next beat is usually longer than normal. The next beat must be stronger than usual to pump the accumulated blood out of the chamber. If these episodes increase in frequency, they can lead to atrial tachycardia or fibrillation and a decrease in cardiac output." Again, just lovely!!!

So I have a few things going on with my heart and am hoping I get some answers today.

Karen Amirault
(karenamirault@eastlink.ca)


There are a few more posts concerning this, the search is up in the upper right hand corner.

Hope this helps!
Pookie

Welcome

by pacergirl - 2008-05-02 12:05:29

Hello Candi,

Sorry to hear you need an ICD... Glad to see you are here!

I have a pacemaker and overall I live a very active life. I still can enjoy many of the activities I used to within reason. I even ride horses!

I personally was not shocked when I was told I needed a pacemaker... I was nearly dead so anything my Dr. did for me was a welcome change.

I would like to add that an ICD is not the same as a pacemaker. An ICD works very differently. I have a friend who has one and I would not even attempt to try to tell you how he says it feels, perhaps an ICD wearer can explain better?

I suggest you ask your dr. a lot of questions until you are satisfied with the answers.

Best of luck to you,
Pacergirl

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