First Time Diagnosed: ICD Procedures

[diakalil]

Hi all,

I’m 31 yrs old and I have just being diagnosed with AHCMA for the left ventricle.
I have had 2 episodes of fainting in the past year after playing sport (Basket) and running.
My doctors have told me that I should get an ICD, so I’m scheduled for a prep session in Dec 2nd. I have done all the tests, MRI, ECHO, tress test, etc…my doctor told me that I’m at risk of SCA because of my previous fainting experience
I realty don’t know what to expect with the ICD. I’m a very athletic person, so I practiced many different sport activities, will it affect my lifestyle?
What are the side affect that some of you have experience with this device? Since there is no cure, how long can you leave with it? I’m very scared but I can’t show it to my wife, she is expecting our 2nd child next year.
I understand that there is process that you go trough when you first get diagnosed and I’m slowly getting to the point of accepting my disease. Has anyone had any issues after getting the ICD implanted, right now I feel grate but I’m worried that after the procedure it won’t the same anymore. Has anyone done any genetic testing? I have a 1 yr son and it keeps me up at night, just thinking that I may have giving him the gene.

Sometimes, I feel very angry because my whole life I have been good to my body, don’t smoke, drink, eat right and exercise…. guess it’s LIFE.

Any suggestion on how to get ready for the ICD procedure, what to expect, before and after, recovery time and how to leave and accept your new life will be much appreciated.

Thank you very much for your help.

[mandksiders]

Re: First Time Diagnosed: ICD Procedures

Hi!

I have an ICD..got it about a week after my official HCm diagnosis two years ago. I was 37. My only risk factor was a mom who had SCA and lived through it, but drs thought it was best for me to have one. Good thing I did, because almost exactly a year later, the ICD saved me when I had V-fib at 5:30 in the morning. I have a very small septal measurement, no symptoms for the most part, work out regularly and lead an active life with my family. I don't smoke, drink occassionally and take good care of myself.

I have two children, boys, ages six and eight. We opted to do genetic testing on them and last year we unfortunately found out they both have the gene. However, that's allowed us to be extremely proactive in monitoring them. Our oldest just had an echo and it showed he's showing some signs of thickening, so we are headed to Mayo next month to see a specialist and figure out what to do with this- his septum isn't in the clinical diagnosis range, but it's getting close and I want to see what the Big Wigs at Mayo have to say about all of this.

My ICD surgery was a piece of cake...I didn't take any pain meds, spent one night in the hospital and was fine afterwards. I started light workouts about a week or two later and then regular workouts a bit after that. The only things I couldn't do for six weeks after surgery was drive and lift my arm above my shoulder. I'm pretty small and my ICD is noticeable, but that doesn't bother me. I wear a bikini top in the summer and v-neck shirts as well as tank tops. I like showing it off, it saved my life- it deserves some notice! LOL.

Having an ICD saved my life, but it's also not at all impeded how I live it. I am extremely active- we do waterparks in the summer and I did roller coasters at Disney last winter with my boys. I barely notice I have it and it's given me such peace of mind that I will be around to see my boys grow up. I live my life exactly the same as I did before the ICD was implanted- with the exception of now getting hand searched at the airport. That's pretty much it. I need to add that because of HCM I had to change how I exercise. I was running before my diagnosis and now I jog. It wasn't because of my ICD, it was because of my HCM....I was told no more running. I jog on a regular basis for exercise. Exercise has always been a huge deal to me, but since my diagnosis, I've had to change it- it's still a huge deal to me, but the way I do it is different.

Good luck to you!

Kaye

[MariaB]

Re: First Time Diagnosed: ICD Procedures

Hello !
I have had my ICD for about 2 yrs. No symptoms and no firings yet. (thankfully) Surgery is a snap. I don't have any regrets and I am actually thankful to have it.
One thing I will say....after surgery my blood pressure was a little high. They were keeping me overnight anyway, but it bothered me because I didnt expect that. Its usually pretty low.
A Nurse finally told me that it is not uncommon for the body to react that way following surgery.
It was back to normal in the morning and I went home as scheduled. Not a big deal, I know, but no one told me that may happen.
As time goes on you will see that HCM is not by any means a death sentence. There are some Experts on here that can answer any question you may have. Then there are folks like me who are just good listeners.
Take care ! Let us know how it goes.
peace
mariab

[pmonero]

Re: First Time Diagnosed: ICD Procedures

Hello diakalil

I don't know if AHCMA is the same that HCMA, if is the same, I just want to add that you shouldn't do sports like Basket, that is very dangerous for people with HCMA.

If this is the case, please talk with your doctor about that.

[Lumax]

Re: First Time Diagnosed: ICD Procedures

Hi,

I was also very active in sports prior to my diagnosis and yes my life has changed dramatically since. When exercise is a big part of your life, of who you are, HCM will probably change you. Asymptomatic prior to and since diagnosis. Put in high risk category for SCA so had ICD implanted 1.5 years ago. Had mine placed just below the skin. For me, it was a mistake because it is very noticeable. I should have done it below the muscle. I don’t go swimming or anywhere else without a shirt. I was in pain for about 1 week after surgery and could not even think about lifting weights or other exercise for about 2 months. ICD is still sensitive to the touch to the point I try not to wrestle with my kids because I am afraid of getting hit. Bother me to wear a seatbelt. I notice it, feel it, and see it every day. I am back to exercising but at lower intensity. Somewhat adapting to my new life and hoping my kids are not affected. Maybe is just me or my attitude but for me it has not been as smooth and rosy as others have experienced

Good Luck

[mbcube]

Re: First Time Diagnosed: ICD Procedures

diakalil - Welcome! Getting an ICD is not really such a big deal. Yeah, I may be soft-peddling it a bit, but in the big picture its not really. We have many active athletes with HCM. Yes, there is some adjusting to learning to live with HCM, but in life - we all have to adjust at various times.
Please use the search feature here and see how others adapted & learned to live with it. You can find reports of others ICD placement, issues, and concerns. You'll find that you will be sore for a while & about every 5-10 years you need to get it replaced but you and your 2 kids (and wife) will be fine. Its a great insurance policy.