This is wonderful news! Another break-through for the LVAD/HVAD world!
Please share pictures of your summer adventures - whether at home or while traveling. You can be a significant encouragement and inspiration to others. Some of your travel experiences are truly remarkable! Thank you for sharing.
As we move into August, would anyone want to share about travelling with an LVAD this summer? I am always curious to hear some of the ways recipients are enjoying the "new normal" life with the LVAD. Feel free to share your adventures, near to and far from home. And, how did you travel?
Gary Green is a paramed instructor in the Zanesville, OH area. He is looking for LVAD Recipients in that area to speak to his paramed class that begins in December. Please let me know if you are interested in helping with this. A few years ago, Ron spoke to our regional EMS providers along with a nurse coordinator from Hershey. I still have EMTs and Parameds walk up to me in Walmart to thank me that Ron took time to share with them about his LVAD experience. You could help save someone else's life!
If you plan events for LVAD Recipients and caregivers/family members, feel free to post the events here to get the word out! If you have pictures from your events, it would be great to have you post them here as well!
Our Patient Family Advocacy Council at Hershey Med Center was thrilled with all of your responses and ideas on activities for long-term patients. Several were discussed and may be adopted into our plan. Thank you, again!
The Northeast is to get hit hard with this major snow storm tomorrow. I encourage LVAD recipients and caregivers to be prepared for power outages and emergency conditions. If you do not own a generator, check in with your local EMS (Emergency Medical Service) or local fire station to see if they would be willing to charge batteries for you if needed. Our local EMS even offered to come to the house to pick Ron up and take him to their location if needed to make sure he had power for his equipment. Be prepared and stay safe, please!
Thank you all, again, for your tremendous input with ideas for activities that would be helpful for in-patients during long stays in the hospital. I hope that this input may also help others who are in other facilities. For the doctors and nurses who visit here, perhaps some of these ideas will be helpful for your ICUs as well. There are some wonderful ideas shared here!
All of your input on suggestions/ideas for activities while inpatient are fantastic! Keep them coming, please, and I will share with my group on Monday at our quarterly meeting. This response is exactly what I was hoping for! Thank you all!
For those of you who have had long in-patient hospital stays...what could have been provided to you by the hospital staff to help you during that stay...movies to watch? computers to use to communicate and do research? someone to play games with? people to visit you? ability to go outdoors at the hospital? I am working with a patient-family advocacy council at Hershey Medical Center, and our current project is to find ways to help patients during long-term hospital stays with activities and things to help them stay mentally and emotionally well during that time. Okay...go! Let me hear your ideas!
I am reposting Dawn's message as sometimes visitor posts are not seen very well. I hope you will agree to participate with Dawn's project!
Hi Everyone! Have had a wonderful couple of months being able to share time and ideas with patients and caregivers from around the world. Brainstorming ideas ...about how to help each other and how to help those with heart failure who don't know about LVAD therapy and are therefore never offered the chance.
So as my mind spins, as those of you who know me, it often does....I wanted to get some feedback on an idea. On MyLVAD we have a small section of recipients and caregivers who have given us video of their stories. I would love to develop that into a podcast series as well as expand the section of the website. Would like to see good and bad.....the real stories, what you think, what you would tell the next person, what you wish you were told and knew before during and after CHF and LVAD came into your lives. So my question is....is that something you would like to see? Would it be something you would like to participate in? and what ideas would you have to make it more meaningful to you?
good morning, friends, from chilly central PA! I would like to ask a favor of the caregivers who are reading LVAD Recipients. I am compiling some information regarding the "stages" of caregiving and hope that you can give me some insight into what you have experienced at different stages of your involvement with your LVAD recipient. If interested, please send me a message so we can connect via email or phone conversation before Monday, October 24.
Our prayers for all who are in the path of Hurricane Matthew. Please, LVADers, be prepared. If you do not have a generator, be sure your local fire station & EMS know where you are. You may need them to charge batteries for you in the event of power outage. Be in touch with your LVAD center and get the advice of your LVAD coordinators as to your emergency plan. Do not wait until you are in the midst of the storm and the aftermath to plan! And, if at all possible, evacuate to an area not affected by the storm. Now is not the time, but if you do not have a generator, please consider investing in one for the next storm/power outage. Unfortunately, insurance will not pay for a generator that I know of. Anyone have any suggestions on good generators?
Your responses regarding how your wear your LVAD equipment has been wonderful! This is exactly what we need to be doing on LVAD Recipients...sharing the different ways you are learning to live with your LVAD! Thank you, and keep the responses coming!
I am reposting for Laura Backer who is looking for input on how you wear your LVAD equipment. Please respond to her! She is needing help with this research...
(From Laura Backer)
Hi, I am a product designer at a firm in Ohio, and we're conducting research regarding the carry solutions for LVAD equipment in order to improve them to better fit the needs of LVAD recipients. We are looking for LVAD recipients who live in the Columbus, OH area or New Haven, CT area, who would be willing to participate in a 90 minute discussion regarding how they carry their LVAD equiptment. In exchange for your time, you would be paid $150. If you're interested please send me a personal message with the best way to contact you. Thanks!!