Just checking in ! CCM & ICD implanted patient ! Feeling great !

Hi All,

Just checking in! I had previous posts regarding being implanted by a revolutionary new device called a CCM (Cardiac Contractility Modulator by Impulse Dynamics, FDA approved in 2020) and also an Abbot ICD one year prior. I am a machine, lol ! I am fairly young (40s) and I feel better overall. I feel as if my genetic heart condition (LMNA Cardiomyopathy) is at least getting better. The overall effect has been amazing. Did well on my last stress test. The device makers, my doctors agree that I should be able to reverse my fatalistic heart condition to least 1 level from NYHA class 3 to 2. 

There were some hiccups though. I take about 11 pills a day and doctors and the device makers have adjusted my voltages a few times. Both devices are not supposed to have crosstalk but I feel that there is sometimes. There were a couple of times in which my CCM device charger / regulator thing beeped a couple of times. This indicated that it was rebooted or not working properly but since then I've had visits at the hospital in which the device makers adjusted and optimized the device further. 

I also had a baby 1 week after my implant, my wife almost died during the birthing process She had epidural issues in which she had to be revived with the baby also needing to be revived. A week after the birth - my brother passed away from covid but the overall cause of death after the autopsy was determined to be - LMNA Cardiomyopathy. Which is the same condition I have. Not only did my dad die of this condition but now my brother. It has been a difficult time for me contrasted by the joyous birth of my daughter.

Anyway, I just wanted to update and also give some further words of encouragement, we will all get thru this somehow !

 

 

6 Comments

What a success story so far

by Gemita - 2023-05-16 03:31:50

Dear Alexander,

Firstly, I was so very sorry to hear the sad news that your brother recently passed away from LMNA Cardiomyopathy after contracting Covid - a life well lived I am sure, but ending far too soon.  I know you will be going through many uncomfortable emotions but I hope as time passes your pain will ease and be replaced with happy memories.

What a joy to have a baby girl and I send my congratulations to you and to your wife.  I hope both mother and baby are doing well now after such a worrying period?

And now to you.  My goodness, you must be feeling better if you managed to cope with all of the above so soon after your CCM implant.  You sound incredibly optimistic for the future and that is going to be a very powerful tool to help you to fight your condition.   A baby daughter, a new implant and a cocktail of meds all seem to be helping you.  Certainly from your comments and your doctor's optimism at this early stage following your latest implant, the signs are all looking good.  

I send my best wishes for your continued improvement.  By undergoing this new therapy, you will certainly be helping yourself as well as many others who will no doubt follow you

Wow

by Tracey_E - 2023-05-16 08:56:03

What a roller coaster you've been on! I'm glad to hear you, your wife and baby are all doing well. 

Congratulations!

by Julros - 2023-05-16 11:40:44

Wow, your life has been taking some dramatic turns. Best wishes to you and your family. 

Thank you for the update on your condition and devices. 

You’re amazing

by Lavender - 2023-05-16 16:17:34

My goodness you have been through much in a short time. I admire your energetic enthusiasm! Good for you for working to keep your genetic problem in check. So sad to hear of your brother (and dad) dying. 
 

Hug the baby for me. I love 'em! Congratulations!

Congratulations

by Rch - 2023-05-16 18:18:34

Congratulations on the birth of your baby girl! Hope both the baby and your wife are doing OK! Sorry to hear your brother passed . I'm glad your devices are working well and you feel better. With some good lifestyle changes including diet, exercise, sleep etc, I'm sure you will move up the scale on the NY class! With your providers' authorization please keep yourself up to date on the vaccines and boosters, and I have no doubt you will beat the heart condition to live a full life! We pray for you and your family.

Thank you everyone !!!

by Alexander - 2023-05-20 14:17:53

Everyone here has been a tremendous help to me. Thank you for your kind words and most importantly the support.

I love this community !

You know you're wired when...

You’re a battery-operated lover.

Member Quotes

I can't wait to give my son a run for his money again in the park again.