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MyLVAD A. Caregiver

MyLVAD Online Caregiver Support Group

Wed, 04/11/2012 - 8:44AM

MyLVAD is dedicated to supporting LVAD recipients, caregivers and providers; we realize the vital role caregivers have in the lives of LVAD recipients. To help our caregivers, MyLVAD will be starting our first online caregiver support group. This will provide a forum to discuss the ups and downs of caring for an LVAD recipient and to connect with other caregivers.

This support group will be offered on the first Monday of every month at 7pm EST. It will be moderated by Greg Larsh, PhD who is the chaplain for the Mechanical Circulatory Support Program at Penn State Milton S. Hershey Medical Center.

The format for each meeting will be a brief topical presentation followed by open discussion for about 1 hour. Participants will have the option to remain anonymous.

If you wish to participate, please go to http://www.anymeeting.com/PIID=ED51DF84884D and register for our first meeting to be held on May 7th.

For those who are unable to participate, please email mylvad@gmail.com so that we can create alternative times for future discussions.

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Patricia J.

Wed, 04/11/2012 - 4:27PM

My husband received his LVAD Sept., 2010. His has not been a smooth course. He has had many stepbacks and brushes with death. He has been in the hospital 160 days since his LVAD was received. The most recent in March 2012. The doctors say his is a very unusual situation. He is home now and feels good and celebrated his 70th birthday yesterday. As a caregiver, I try to keep a positive attitude. We have many visitors which helps to keep him positive. My biggest challenge is fighting the anxiety that "waiting for the other shoe to drop" causes me. He is dependent on me for everything from making sure he takes his daily meds, monitoring his LVAD and driveline, to helping him get dressed. I try to live life preparing for the worst and hoping for the best. There are many days where I feel overwhelmed. I'm sure there are many caregivers who have much more responsibility and stress than I, and I don't mean to sound sorry for myself, but today I am.

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Wendy C.

Wed, 04/11/2012 - 11:31PM

Patricia, I wanted to let you know all caregivers have times they feel down or even overwhelmed and I expect you know that. You have been through the ringer and I'm sure that brings feelings of disappointment that things have not gone easier and better.

I'm a caretaker too but the patient is my son. We have been lucky/blessed that his LVAD has been a success though I had hoped by now he would have received a new heart. He is just 22 and has had a lifetime of heart surgeries and serious set backs. I do understand at least a little how hard it can get. He has only had the LVAD for a year and a half though. I am sorry that your husband has had to endure so much. I pray he will continue to feel better and that you also will feel more at ease with your life with an LVAD. Everyday is a new challenge and a new hope. Like I said we all.get down. Hopefully today will be a better one for you.

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Carol F.

Tue, 06/05/2012 - 10:40PM

Patricia, I really am sorry to hear your husband is having such a rough time. I can relate, my husband is on his second LVAD as the first one seemed to be infected from day one. We also went through many hospital stays (he's a doctor and you know what wonderful patients they are). He just got out a week or so ago and is on IV antibiotics for at least a month, then oral for the rest of his life. I too try to be positive but, the stress is crushing at times. I'll tell you my full story later so you'll understand....And Happyheart, I cannot imagine the pain you must be in with you sons problems. I go into panic mode evem thinking about it. Children are not supposed to be ill or hurt. It's heartbreaking. I'm new to this forum, this is my first time on. Would love to continue talking with both of you.

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sheila k.

Thu, 09/06/2012 - 9:58PM

To Happy heart and Patricia Jason

I just read your situation, and I feel so bad. I thoutht I had problems, but at least my husband has been trying, and so far no infection. I have made him realize from the getgo, he would have to be responsible for himself in the long run, he is only 59, and I will have to work to have insurance. I am so sorry, my heart goes out to you, I know from what I have experienced, it is so hard. Being a caregiver is rewarding, when the "patient" does well, you feel better. And when things happen, you feel so responsible....So please let me know how things are, I would really like to know.... My prayers are with you and your husband as well as your families.

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Dawn C.

Sun, 11/04/2012 - 6:43PM

Hi Erin,

Alexis is correct. We do still have these sessions, but this month we are trialing a new service. Please go to https://imeet.com/dawn326 to log onto the session this month. If the group likes the format, we will permanantly use this service with a brand new address. imeet also has apps for mobile devices if you prefer to sign on with yours.

Hope to speak with you tomorrow!! Dawn.