I carry an LVAD and needed to change the percutaneous cable because I have worn the thing for so long that I had holes all along of it. 7 holes with the webbing and inside cables clearly visible.... I covered them up each time with eletrician's tape but they kept on coming back. I would be interested to know how many other LVAD patients this has happened to ? My hospital told me 1) NEVER to touch/fiddle with the controller 2) NEVER to undo the cable. The finally changed both the controller AND the percutaneous cable after 2 years... Is this video suggesting that patients are expected to do this manipulation if needed ? I would also be interested to know how many patients have had to change the controller and WHY ? Anybody's answer would be well appreciated as the medical team where I live are useless. They do NOT communicate and the cardiologists are worse. They hide and simply don't answer any of my questions. Many thanks
hello, I'm not an LVAD patient however my sister is, she has been on the LVAD for about 4-5 years, today one of her batteries had gone low and we had the backup, my mom knew how to connect the driveline and such but I didn't know what had happened - this is the first time this has ever happened and my sister had actually fell unconscious twice and briefly woke up, when the pump flow is low it is near impossible to do this as quickly as possible because she passed out faster than we could change it, one we changed it we were still panicking because it wasn't fully locked and it was a very traumatic day for us :/ but she is fine now! just some chest pain and she's currently in the hospital 🩵 the most I can say to your questions however is that you should always be careful with the batteries and have them charging when you are in rest mode/just resting. please be careful with the LVAD, it is a life saver but incredibly tedious to use.
@@demi_aye_yuh Thanks for the support. I am extremely careful all the time. Changing batteries is an easy task and you have an alarm if necessary before the batteries get too low. Your sister passing out however isn't due to the LVAD or the batteries. It's due to her heart condition. Very low tension and or arrhymthia. Does your sister also have a defibrillator in her left shoulder ? THAT should have gobe off when she fainted. Same happened to me one month ago. Low Tension and my heart raced to 250/minute and the defibrillator kicked in to STOP my heart racing. I spent a week under observation and they changed one of the pills I have been taking for 5 years for another stronger one. Carvédilol - Dilatrend. Hope your sister is doing OK. All the best for the new year.
@Team33Team33 thank you so much for the reply back 🥺🥺🥺💔 I'm so scared for my sister, especially because this LVAD she has makes her incredibly frustrated and she feels that she is never able to do anything because of it. Thank you for telling me that it wasn't the LVAD nor the batteries that caused this, but her heart condition - she has congestive heart failure and is not doing the best she can to get off the LVAD and get a heart transplant, she is not a destination patient either and we pray she doesn't end up one.. god willing she will try her best to change her ways this upcoming year and will lose the weight she is supposed to and fix her eating habits... I'm glad to hear that you are also okay, I also do not know if my sister has a defibrillator, I do not think she does.. when we had tried to switch her battery to the backup we had she passed out and went unconscious and woke up then fell unconscious again, i definitely think it has to do with her heart issue if anything the only issue she has with her LVAD is the wires being in her way most of the time and just annoying her that's all. I pray everything gets better for you as well 🥺
So what you’re telling me is that we’re doing Indiana jones with this stuff.
I carry an LVAD and needed to change the percutaneous cable because I have worn the thing for so long that I had holes all along of it.
7 holes with the webbing and inside cables clearly visible....
I covered them up each time with eletrician's tape but they kept on coming back.
I would be interested to know how many other LVAD patients this has happened to ?
My hospital told me 1) NEVER to touch/fiddle with the controller 2) NEVER to undo the cable.
The finally changed both the controller AND the percutaneous cable after 2 years...
Is this video suggesting that patients are expected to do this manipulation if needed ?
I would also be interested to know how many patients have had to change the controller and WHY ?
Anybody's answer would be well appreciated as the medical team where I live are useless. They do NOT communicate and the cardiologists are worse. They hide and simply don't answer any of my questions.
Many thanks
hello, I'm not an LVAD patient however my sister is, she has been on the LVAD for about 4-5 years, today one of her batteries had gone low and we had the backup, my mom knew how to connect the driveline and such but I didn't know what had happened - this is the first time this has ever happened and my sister had actually fell unconscious twice and briefly woke up, when the pump flow is low it is near impossible to do this as quickly as possible because she passed out faster than we could change it, one we changed it we were still panicking because it wasn't fully locked and it was a very traumatic day for us :/ but she is fine now! just some chest pain and she's currently in the hospital 🩵 the most I can say to your questions however is that you should always be careful with the batteries and have them charging when you are in rest mode/just resting. please be careful with the LVAD, it is a life saver but incredibly tedious to use.
@@demi_aye_yuh Thanks for the support.
I am extremely careful all the time.
Changing batteries is an easy task and you have an alarm if necessary before the batteries get too low.
Your sister passing out however isn't due to the LVAD or the batteries. It's due to her heart condition. Very low tension and or arrhymthia.
Does your sister also have a defibrillator in her left shoulder ? THAT should have gobe off when she fainted. Same happened to me one month ago. Low Tension and my heart raced to 250/minute and the defibrillator kicked in to STOP my heart racing. I spent a week under observation and they changed one of the pills I have been taking for 5 years for another stronger one. Carvédilol - Dilatrend.
Hope your sister is doing OK.
All the best for the new year.
@Team33Team33 thank you so much for the reply back 🥺🥺🥺💔 I'm so scared for my sister, especially because this LVAD she has makes her incredibly frustrated and she feels that she is never able to do anything because of it. Thank you for telling me that it wasn't the LVAD nor the batteries that caused this, but her heart condition - she has congestive heart failure and is not doing the best she can to get off the LVAD and get a heart transplant, she is not a destination patient either and we pray she doesn't end up one.. god willing she will try her best to change her ways this upcoming year and will lose the weight she is supposed to and fix her eating habits... I'm glad to hear that you are also okay, I also do not know if my sister has a defibrillator, I do not think she does.. when we had tried to switch her battery to the backup we had she passed out and went unconscious and woke up then fell unconscious again, i definitely think it has to do with her heart issue if anything the only issue she has with her LVAD is the wires being in her way most of the time and just annoying her that's all. I pray everything gets better for you as well 🥺