I a new caregiver to an LVAD recipent

Hi,

I am glad your husband is doing better. My husband has had an LVAD for 22 months. We have had the ups and downs of congestive heart failure too. Hang in there! It is hard in the beginning but it will get easier. Just take one day at a time. Take care of yourself so that you are able to take care of him. This is hard on you too as a caregiver. It is a life changing event. If you have questions or want to talk, please let me know. Other caregivers on this website have had similar feelings and experiences. Take care, Melody

really good advice Melody. We ,as caregivers, need to be aware of our bodies and the way we are responding to what is going on with our loved ones. We can't take care of them if we are not well,physically,mentally and emotionally. We have had an Lvad for 1 year in Jan. By now it is second nature to take care of the things we need to livenormally. Let friends help when you can and encourage your husband to be as independent as he can be.

It goes unsaid that you will be included in our prayers.

We are finally seeing my husband returning to doing things he hasn't been able to do for a few years.

You can do this!

Jason got his LVAD implanted Sept 26, 2011. Take a look at our blog when oyu get a chance!

Take care all!

i freaked out when rob first came home i didnt know if i was going to be able to do it or not. Luckily I did have the help of a visiting nurse for a few weeks, but she was not trained on LVADS so it was more me teaching her than her helping me. But it helps to know you are not alone. She was there learning with me. If we had a question, we called down to Tufts MEdical Center in Boston and talked to Rob's Vad nurse. Thats what they are there for after all. Your husband will get to the point where he will be pretty much totally indepedent, with you only having to do twice a week dressing changes, or taping up the site for showering, etc. Rob is pretty much independent besides these things. I make sure i have time to myself now. I work almost full time, and am working on getting out just to have me time.

My husband got his LVAD in October. He had to go through the surgery twice. He got a blood clot in the pump two days before he was to go home. It was devasting to have to see him go through this very long surgery twice. He was in the hospitl for 78 days. He is home now and doing well. Trying to build his strength back. We are from the Boston area and was wondering if ther were other LVAD patients in this area.

Yes I live in the north shore of the Boston area, Salem to be exact. I am new to this website and eager to connect with other folks with the LVAD. I had to build up my strength with a lot of physical therapy and walking too.. I am recovering and dealing with some tough head dizziness and swallowing issues caused from when I was intubated in may 2010.

Hi Sam, We Live in Malden. My husband is dealing with some of the same issues you are having, especially the dizzines. He is still working on his strength. He had to go through this surgery twice. This made him doubley weak. Where did you have your surgery? He will be posting his story.

My brother recently had an Lvad and he seems to be having a very difficult time adjusting - he gets depressed and does not want to live - there are many side effects for him one of them nose bleeding - does anyone have any suggestions to help him through. My sister in law is the primary caregiver and she is very good at it . I worry about her she really needs to take care of herself. I help out as much as I can , without moving into their home . I feel that you get a chance to live & that is a pro - but I am not the one with the Lvad !!

My husband had an LVAD for 15 months before receiving a heart transplant. If your brother is still in the recovery phase he probably doesn't feel much different than he did before surgery--fatigue, edema, shortness of breath, etc. Our LVAD team told us it takes some time for the effects of the LVAD to really kick in, but once they do he should feel much better. We realized my husband had CHF for many years before he was diagnosed, so after the LVAD was placed and he recovered from what is a very, very major surgery he felt better than he had in probably a decade. That definitely made a difference in his feelings about being hooked up to a device 24/7. As your brother becomes more accustomed to the routine, and the good effects take place, I think he will truly understand the miracle that saved his life and come out of his depression. If he doesn't I would highly recommend he and his wife talk to his doctor and LVAD team. Having an LVAD is a unique situation, but we found those professionals that get into this field are very special and compassionate working with LVAD patients and their families. I hope your brother is feeling better soon. God Bless.

I agree that it keeps getting better as time goes by. I had my lvad placed in Aug of last year and my family and I cannot believe how better I feel every day. I see you are from Homewood

, where did you have your lvad placed? Mine was at Loyola.

University of Chicago. Great LVAD and transplant teams there!

My father is scheduled for LVAD and the University of Chicago next week. Are there any tips, warnings, or suggestions that you can offer?

Mark, All I can say is go into it with a positive mind and heart. I got mine little over a year ago, and I am doing well. This LVAD install as I call it is a crazy think but things will get better. For sure.

Hi Mark. The LVAD/Transplant Teams at the University of Chicago are phenomenal. My husband had an LVAD placed in May 2010, and had a heart transplant in August 2011 so we've spent a lot of time there. Living with an LVAD or a loved one with an LVAD is an adjustment. It takes some time to get used to your "new normal" life, but it does get better, and it's so much better than trying to survive everyday with a barely functioning heart. My husband had no complications (infection, malfunction, hospitalizations, etc.) and I attribute that to keeping up with the routine we were instructed to follow. The LVAD even has some hidden advantages, especially if you're a golfer. My husband used the shoulder bag for his battery pack and says the weight improved his golf swing! I wish your Dad the best results possible. He is in good hands.