Discouraged

Well I am back (wish someone would share some guidance) my husband is back in the nursing home this time with the worst infection he has had. He had emergency surgery and had 5 pockets of infection. They made 2 incisions and tried to clean him up. This was all without a fever only a little red spot. He is in the nursing home with wound vacs and IV therapy. Off of the list. How do you all deal with this????????

I wish I had an answer for you truthfully. Being the caregiver is one of the most difficult things I've ever had to do. My wife wasn't one of those patients that never had problems, and that makes it more difficult as you have found out. But the one thing I can say in all honesty, no matter how hard it was at the time, I wish I was still doing it. I lost her 18 months ago after a blood clot developed in her LVAD, and the blood thinners caused internal bleeding that they couldn't do nothing for. So don't give up, keep doing what you are doing, takes a very special person to sacrifice as you have, just know if you weren't doing it for him, who would? Take care and God bless you

I know what you mean. My sister hasn't had her surgery yet, but she is starting out at a huge disadvantage. She has been in heart failure for over a dozen years (thanks to adriamycin chemo for breast cancer). She had a stroke 11 years ago, but with almost no ill effects. In the interim, she's been hiking, cycling, skateboarding, running.

This September, she entered the hospital because she was having excessive trouble breathing. After several days, she was transferred to NewYork-Presbyterian. The following day, she had 2 strokes. The first had little impact, but the second left her with severe aphasia and paralyzed on her right side. She regained use of her right leg, and her speech is steadily improving, but her right arm and hand are still not back.

Three weeks ago, her ef dropped to 10 and they did emergency surgery and connected her to an external LVAD. She's been in the CTICU since then. We're now at a point where they are contemplating implanting an LVAD in about 3 weeks, if she can get strong enough. However, because of the stroke, she won't be able to do much of the VAD care herself. That means someone who is trained by the hospital always has to be with her. I work an hour+ away and NEED my job and I am also a freelance musician, with performance and rehearsal commitments. My partner will help, but his availability is limited. And two of her friends are going to get trained (bless them), but they can't be there much, either.

This is terrifying - it feels like trading her life for ours (sorry if that sounds selfish), but there is no option.

We are desperately seeking resources in our area, but anyone would have to be trained by the hospital (and they're not willing to do unlimited training sessions).

I just want to curl up in a ball and die.

My husband received his LVAD in July. He has had setbacks and recently (November) had a GI bleed. He is 56. Jefferson University in Philadelphia is wonderful. We are also dealing with the emotional uncertainty that accompanies this life changing event as we await his human heart transplant. I cry often and do not sleep to ensure he is still alive. This journey is not easy but there are bright spots. We can laugh over his unending procedures and what he is now unable to do. People have stepped in and the spirit of community is wonderful. As I care for him I am unable to work. The stresses are unending, financial, emotional. We are also raising teenagers. Keep fighting and tell people you love that you love them EVERY DAY. No one can truly understand what this feels like until they are confronted with this situation. Dig deep cry and hope. Get angry when you need to. Find gratitude in friends and support in family. This life change is a hard on the LVAD patient as it is on us.

To the person in Great Neck-St. Francis Hospital and Stony Brook Hospital are now performing LVAD surgeries. Contact them to see if they can recommend some assistance.

I am a caregiver and cherish each day with my husband. We have been together 37 years and although he gets cranky sometimes due to the inconveniences and fear and I get sad sometimes due to having seen him suffer so much, we are honest with each other. I also told him that I need time alone and to do many of the things I have always done so that I do not become resentful. Although he doesn't like it all the time, I stick to my guns and do what I need to do.

Hi Pat A,

I've had my lvad since April 1st 2016. I've been lucky to have had no problems as far as infections. However,  I have had issues with my body breaking. My right knee needs to be fixed, which no doctor will touch me due to the lvad. My shoulders, neck, back and hips cause tremendous pain. I'm unable to carry the batteries and controller to go anywhere and dread carrying them when I have to. I'm confined to the house and can't go everywhere within due to my leash(cord) twisting and becoming unplugged. I absolutely hate this. Yes, I have life but unable to live it! I'm 60 years old and recovering now from a fall after becoming dizzy on July 4th which resulted in a brain bleed. I'm doing alright now. However, my partner, Kenny and I live on the river. Ours lives revolved around fishing and water sports. I get to sit in the back yard and watch everybody else having fun. I'm still not listed for a heart and my team haven't given me a reason why. I feel that they will tell me I'm not bridge to transplant anymore and have to spend the rest of my days like this. Not sure I will take that very well. I pray all have better days than I do. God bless all my fellow lvad warriors.

I've had my LVAD II in August 2015 and had to change it in Dec 2015 due to blood clots in the pump. Till beginning 2017 life was very difficult for me, with several episodes of GI bleeding/transfusions and a short term stroke (ITS). During this time I used to have iron complementation for anemia. In the last two years,  my physician stopped iron complementation and, although having a limited life due to the weight of taking the LVAD batteries/conductor, the necessity of having a caregiver to help in bath and change dressing, I feel quite good. I returned working, mainly home office (I am a scientific researcher), driving, and going out with my husband, friends, and grandchildren. Everything is made in a very slower rhythm than before, but thanks God I am alive and able to see my grandchildren grow up. It is hard to support the worst phase but we have to appreciate what life still holds for us.

All the best for everybody

Mariza

From Brazil

My son age 32 had his lvad for 10 months. He had 2 good months. He was so careful with dressing changes. He lived with me so I usually did them. It was one problem after another. Mostly driveline infections. He noticed 10 months in that he had a blister like opening near his site. Went to hospital and found out it was a pocket of staph.  It had traveled through his bloodstream.  He was in rehab 4months in a nursing home. He had to be on continuous IV antibiotics. He finally came home. This disease and the LVAD became more than he could handle. Deep depression and anxiety led him to turn off his pump while we all slept . I lost my beloved 32 year old son . I am devastated and heartbroken . I cry all the time. They should have made this a safer piece of equipment before using it on human beings. All I hear about is driveline infection, staph and mrsa. He knew his days were limited so he wanted to go on his own terms.I lost my beloved son and my life will never be the same. He couldn't go on and I have to go on without him. I would say think very hard before you get this monster implanted. It caused us nothing but grief and heartache. Michael's mom Forever 32 I loved my son with all my heart. He was my world. I'm so sorry he had to go through so much horrible pain and suffering. He will live forever in my heart. Love you Michael 0

My son age 32 had his lvad for 10 months. He had 2 good months. He was so careful with dressing changes. He lived with me so I usually did them. It was one problem after another. Mostly driveline infections. He noticed 10 months in that he had a blister like opening near his site. Went to hospital and found out it was a pocket of staph.  It had traveled through his bloodstream.  He was in rehab 4months in a nursing home. He had to be on continuous IV antibiotics. He finally came home. This disease and the LVAD became more than he could handle. Deep depression and anxiety led him to turn off his pump while we all slept . I lost my beloved 32 year old son . I am devastated and heartbroken . I cry all the time. They should have made this a safer piece of equipment before using it on human beings. All I hear about is driveline infection, staph and mrsa. He knew his days were limited so he wanted to go on his own terms.I lost my beloved son and my life will never be the same. He couldn't go on and I have to go on without him. I would say think very hard before you get this monster implanted. It caused us nothing but grief and heartache. Michael's mom Forever 32 I loved my son with all my heart. He was my world. I'm so sorry he had to go through so much horrible pain and suffering. He will live forever in my heart. Love you Michael 

My friend pray. My husband had six surgeries. Before the lvad. And it will be a year. But we have to be strong. I have a great spiritual family and we are Jehovah's witnesses. So I have alot of Faith. And I make it enjoyable taking care of him. I take him for rides when he feels good.  But having faith and praying for strength and staying busy really helps me. I will keep you in my prayers. And the account is in his name. My name is rosa