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In the latest release from our Coping Manual, we explain how participation and socialization play key rolls in living and coping with your LVAD.

Participation

The Gallop poll found that 43 percent of Americans report weekly or almost weekly church attendance (2010).Consider participating in religious services or discover (rediscover) religious rituals that might be helpful for you to practice. Examples might include worship rites, sacraments special ceremonies, celebrations, and holy holidays.

Socializing

Socializing involves engagement in family and community activities of a social or religious nature (see Participating). Find outlets for engaging with and in social communities or groups. Clubs and organizations may be good options. There are faith communities that host support groups, workshops, travel (tours) and service projects. Discovering or reengaging your hobbies or passions may direct you to workshops, shows (i.e. dog or horse, train or modeling), even competitions where like-minded people provide opportunities for socializing.

There are Facebook sites that support LVAD patients and their caregivers. One example is the group page, LVAD Recipientshosted by a patient’s spouse/caregiver.

Social media specific to LVAD patients and their caregiver are not intended to offer medical or mechanical information, diagnosis or treatment.

 

Comments

Hello, I'm the L-VAD -VOCATE(or L-VAD #4 FROM St. Luke's LVAD program in Bethlehem. PA). I have come up with a "ten Commandments" for the LVAD(* note : this list is not yet finished and will always be open to suggestions! These may or may not coincide with the manufacturer's guidlines. These are just some habits that I have personally developed that I hope you may find useful!
Commandments:
1.) THE STEADY PACE WINS THE RACE! after you have your LVAD implanted, you will immediately notice that you have energy again(this is AMAZING to someone like me who had heart-failure for almost eight years prior ). Don't go off and try to run Marathons, Yet! Ease into it. This is a new addition to your body, it takes some getting used to high performance equipment. Give it about three months to a year. It varies between each individual.
2.)WIPE YOUR DRIVELINE WITH ALCHOHOL BEFORE YOUR WEEKLY DRESSING CHANGE FROM THE CONTROLLER TO THE FOLEY ANCHOR ON YOUR ABDOMEN! This is to help prevent germs and bacteria from jumping down the driveline to the wound site during dressing changes and prevent infection.The driveline touches nasty germ-filled surfaces like toilets, sinks, hands, etc.
3.)AFTER YOUR PROCEDURE. DO AGGRESSIVELY PROTECT YOUR OPEN-HEART CHEST WOUND! WEAR A CLEAN SHIRT OVER IT AS OFTEN AS POSSIBLE. AND "DO NOT CLEAN ANY DISHES!"IN FACT, MAKE SURE THAT THERE ARE NO DIRTY DISHES LEFT IN THE SINK AND SANITIZE THE SINK REGULARLY WITH FOAMING BLEACH CLEANER! Because of all of the decaying food bacteria in the sink and dish sponge. The sink is many times more "unclean " than the toilet. As a culture, we clean the toilet better and more-often then we clean the "Kitchen sink."Have a family member do this, NEVER an LVAD PATIENT while their wound is healing! ALSO, MAKE SURE THAT DISHES ARE CLEANED AS-SOON-AS THEY ENTER THE SINK! This cuts back on the development of bacteria in the sink. This is a GREAT chore to hand off to "bored" children. They will dislike you at first, but years from now they will THANKYOU for teaching them good Kitchen cleaning habits!

4.)BE CONSISTENT WITH THE TIME AND HOW YOU TAKE YOUR MEDICATIONS! Many continued complications of heart-failure can be traced back to improperly "using"or "not using" your PRESCRIBED medications. Be sure to read and take note that some medicines need to be taken with food, a significant amount of water or on an empty stomach. Some medicines require you to be standing or seated for a period of time after taking them!

5.) TAKE CARE AND BE AWARE! The LVAD requires you , at first, to take into consideration that it is now there. It is doing its job to keep you alive. But it requires you to Remember that it is there and that dropping it or snagging the driveline are a constant thing to be mindful of. Any stress on the driveline will cause your wound to ooze fluid and become "CRUSTY" under the driveline dressing on the skin around the driveline at the exit wound.

6.)ALTERNATE YOUR BATTERIES FROM THE CHARGING UNIT AND FROM YOUR BAG CONTAINING YOUR BACK UP CONTROLLER AND EXTRA BATTERIES. THIS IS TO INSURE THAT YOU USE THE BATTERIES EQUALLY, TO EXTEND THEIR MAXIMUM LIFE EXPECTANCY OVER ALL EIGHT OF THE BATTERIES, THAT YOU WILL RECEIVE INITIALLY. A rule-of-thumb that I use, is to alternate the batteries by zones on the charging unit. On the left side of the unit are batteries #1 and #2. I use these two batteries for my daytime use and then I exchange them with batteries #3 and #4 for my night time use. About every two weeks, I exchange my extra batteries with either my daytime use batteries or night time use batteries, depending on what time of the day it is that I am exchanging them.

7.) REMEMBER THAT YOU WILL ALWAYS BE IN TRANSITION WITH YOUR LVAD. There may be some setbacks. No surgical procedure is a one hundred percent guarantee. However, your attitude ultimately decides if you transition out of complications or if you stay "stuck" in them.

8.) BE MINDFUL AND RESPECTFUL OF YOUR LVAD CARDIOLOGIST AND LVAD COORDINATOR AS-WELL-AS ANYONE WHO ASSISTS IN YOUR CARE. HELP THEM TO HELP YOU! These individuals have dedicated alot of their time and effort to give you this chance to live a better, longer life. Tell them "THANKYOU! " From personal experience I know that alot of these personnel will shrug it off and say "That's what I'm here for! Developing a good, solid line of communication with them; insures your continued success with the LVAD!

9.) IF YOU DON'T USE IT YOU LOSE IT! This is a "basic" rule-of-thumb that I learned as a Physical Therapy Aide years ago. It means that if you want to continue to live, LIVE! If you want to continue to walk, WALK! Push yourself to just do a little bit extra every time that you do anything. It is your choice if you wish to just stay in bed or take this wonderful opportunity given to you by the LVAD and make the "MOST" of it!

10.) DON'T GIVE UP! That may sound cliche', but it is true. The LVAD may seem overwhelming at first, but so were walking, talking and reading. A great line from the movie "THE SHAWSHANK REDEMPTION"sums it up best for me. "YOU EITHER GET BUSY LIVING OR YOU GET BUSY DYING!" Take this opportunity and share it.Encourage others to try. I firmly believe that most LVAD RECIPIENTS MADE THE DECISION TO LIVE OVER DYING. WE LVADS CAN SHARE THIS GIFT WITH OTHERS WHO MAY BE STRUGGLING WITH OTHER FATAL ILLNESSES. LIFE IS A GIFT. IT IS A GREAT GIFT WHEN IT IS SHARED.Don't just keep this gift for yourself! THANKYOU for your time. I have been inspired by my fellow LVADS and the medical teams that helped us to become LVADS! BE BLESSED AND BE ALIVE!

THE L-VAD-VOCATE, Eric Sutak.

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