LVAD supplies

It is getting closer for me to get my lvad, I have enough people for mine 12 weeks of 4hr care, right now my ef factor is down to 15, I know I am getting sicker, very weak, I had to wait I had to prove to the drs. that I would have the support I need, where I live I will be only one in Newton, Kansas with a lvad, and their don't really know what a lvad is I have to tell them it is a heart pump, even the ems here aren't train for it, I have study the many lvad that the lvad team goes to my home town, trains those that need the training, am nervous at the same time I am tired of being sick and weak. I asked for prayers I pray also that I can share and learn for those that have their lvad's God bless each one here. Carolann Adair

Hi Carol, Are you looking for someone to do your site care and dressing changes or are you able to do that part? My mom had her LVAD in April, 2017. It's a HeartMate II. The supplies we went home with were several large boxes of bandages, gauze, tape, hibiclens solutions and other misc items. And when I say large, I mean it took up almost the entire cargo area of our SUV. My mom has her driveline exit site on the right side, but it's so far back that she has a hard time reaching it, so I have been the one doing her driveline dressing changes and general LVAD care at home. As the site has healed, she has gone from a daily dressing change to every other day, every three days and now it's twice a week. We use the Chloraprep solution now and a tegaderm patch and that works really well. Lasts longer too. But you they won't let you switch to that until later. She started with just a standard gauze dressing and the hibiclens/saline site cleaning solutions. Since you are worried about having a caretaker, the next time you speak to the LVAD team and especially the surgeon, you need to ask them if they can put your driveline exit site more in the front instead of on your side. Otherwise you are going to have a very hard time doing the dressing changes by yourself. We live in North Dakota and there is no LVAD care here at all. She does see a cardiologist, but that's just for routine cardiology appointments. Our ER has heard of LVADs, but they have no real way to treat my mom if she ever has an emergency. The closest hospital to us that knows what they are doing is 10 hours away. I ran down every possible avenue in my area for getting her site care done in a clinical setting, and I didn't get anywhere. The wound care clinics around here initially said that they would do it, until I showed them what it was and then they got scared. None of the cardiologists would do it because they are not equipped for that type of care in the office. Her general practitioner couldn't do it for the same reason. There is something called "Infusion Care" where they handle pic line dressing changes and other sterile dressing changes, but they wouldn't do it either because the driveline exit site is an abdominal wound and they can't provide any care for that. However, that is not to say you would have the same reactions from the wound clinics in your area. If you are looking for someone to do your dressing changes, then I would try calling the wound care and infusion care centers in your area to see what their reaction is. But you need to know where the exit site will be for your driveline first and you probably won't know that until after you wake up from surgery. If they have no idea of what an LVAD dressing change is, have them look it up on YouTube so they can actually see it. If you are looking for general care at home after they release you, look into the home health care option. Your local doctors would be able to set that up. My mom has Medicare and a BlueCross supplement. She was on HomeHealth for months after her surgery and her insurance covered everything. The downside to that is you have to remain homebound and can only leave the house for medical appointments. That is because of the medicare rules for homecare. If you have have any Veterans benefits either from your own service or a spouse, then you might qualify for VA HomeCare, which does not have the homebound limitations and could go on indefinitely even after you are better. Private pay for homehealth is not affordable at all unless you are wealthy. If you have specific questions that I didn't address here, just respond and I'll tell you what I can.

My heart is touched for you Carolann. I hope that you have successfully received your LVAD. My daughter had a Heartware implanted for seventeen months with an EF of 13. We were staring death in the face. We had nothing to go on with but prayers, from our hearts and from friends. No other experience will surpass that which we have lived during this time. I was by her side for all of it. A miracle of all miracles happened. Her heart has recovered and she was explanted six weeks ago. I am still her caregiver night and day. The recuperation is a gradual process but she is alive and participating in life activities. I am praying for you. My prayers go directly to God’s ears because I know that if Jesus could raise Lazarus from the dead he could save my daughter. When these things occur in our lives they serve to bring us into the armpit of the Lord because there is no place else for us that will give us comfort and hope. I pray the best for you and hope to hear how you are doing.

I suspect each hospital is going to be different. When I went home from Duke, they provided me with enough supplies to last almost a month. I ordered three weeks of supplies right after I got home and continued to do so at the first of every month until about two months ago. Believe it or not, my insurance carry sets a limit on the amount for the LVAD implantation and supplies and I met that limit after about 15 months. So, I buy everything piece meal wherever I can find it cheapest. I suspect it is possible to go home without a caretaker. Duke requires that you have one listed before leaving the hospital. My wife did the dressing changes almost exclusively for several months. One day, however, I got a little sweaty and the tape started to pull away. My wife was out of town until later in the evening, so I went ahead and changed it. I've been doing it ever since. The biggest problem that I can see to not having a caretaker is being able to reach the drive site. I have heard of some that are placed in some rather inconvenient to reach locations. Mine thankfully is up front and rather easy to reach while lying on my back with a pillow or two to prop me up. I do enjoy, however, when my wife takes pity on me and lets me lie back and have her do it.