Feeling Good

Hi Angela,

Just read your post. I had my LVAD installed on 10/1/21. I've been feeling rather lousy lately. I;m fine health wise just been bummed out. I posted about a rash I have and I'm having trouble getting it resolve and id. It feels like i'm being pricked with needles. Very little support from my LVAD team my Dr is trying to help.I did a post about it but no one has offered any help. My wife was super supportive during the heart attack and installation but now i feel like i'm on my own. I wonder if i'm going to wake up every morning, just seems like i'm waiting to die. I'm 64 and have 3 kids which all are grown and have their own life. Never check on me. Just thought I'd speak out. I never do things like this but your post got me. Thanks for listening

Lee

Hi Lee and Angela,

I am about 7 months post implant and I can relate to you both. I have also struggled with a driveline  rash and itching. My LVAD team is helping me -but it is not at all easy. I am going to try something called Primapore for my dressings. I have also had odd pains and numbness in both of my legs. I am trying to fight the negative thoughts as best I can. At this point I think there is some real trauma from all of this and I think it comes out as negative thinking. I am also 64 years old and I want to live very badly! However I have sort of come to terms with the fact that life is and will always be different than anything I have ever known. I think that we need to go through a grieving process for awhile. That said- I am having more and more success with overcoming the negativity and remaining in a happier frame of mind! My husband and I are planning some trips and I will get to see my Grandaughter at Thanksgiving for the first time in three years. This to me is a major triumph considering how sick I was. So I guess the bottom line is that We still have our lives and we must try to live them to the fullest-however long we have. There are going to be challenges with our bodies but do what you have to do and move on!! Life is still here for us. Happy Holidays to you both and all the other LVAD brothers and sisters!!

Hi Ron,

Here is an update on my rash. It was getting frustrating because anywhere the tape is positioned my skin breaks out. The itch is really horrible. I know that I cannot itch the area or I risk an infection. Fortunately the last 24 hours have been better. The Primapore is helping and the dressing changes are easier as well. My husband does my dressing changes- so he is relieved. My team was almost going to put me on some Cortisone cream but things are now improving so it is not necessary. For awhile we had some luck with constantly changing the tape to different positions- but that failed as well. We also use Hibiclens with saline rinses instead of the Cloraprep. I think this is going to be an ongoing thing- my team says that some people get the rash so bad that they can only use the iodine. They have been very responsive to my situation so that helps. We also talked to the home nurse when she was here and she said she has seen the Cortisone cream work but you must take care to use a tiny amount around the perimeter and only cream not ointment. Use a Q tip for application.I have also heard that silicone tape is much more comfortable -but my team has not approved it 

As far as the worry about stroke- that simply is awful! I have had to fight that myself. There is so much stuff that could go wrong that it is overwhelming at times. However, I will say that my team does try to minimize the amount of things to worry about. They try to steer me towards living as normally as possible. I am a worrier- so I have to really avoid looking too closely at things. My Granddaughter and daughter came for Thanksgiving and it was wonderful! I am trying to be optimistic about the future. People are living longer and longer with these devices and new breakthroughs occur all the time. I have heard some miraculous success stories and there is no reason why we can’t experience that too. The Abbot people recently had a meeting with my team and reported that the Heartmate 3 is showing remarkable success! The Doctors are very pleased. There are fewer strokes occurring now! Thank you for your kind post!

Joanne