A neat new way of carrying batteries!
Tue, 01/03/2023 - 7:15AMMy father just purchased this small backpack at Walmart, and he is excited to share that he loves carrying his batteries this way! Perhaps someone handy with sewing bags could really make something like this super lvad friendly. He’s very active, and said that having the batteries off of his mid section/legs helps him feel a bit more capable of doing the things he loves (sometimes he wears overalls or suspenders that also seem to work if his batteries are down low— he gets the overalls at tractor supply and the heavy duty suspenders I got from LLBean).
i hope this helps anyone looking for more options!
(No subject)
Tue, 01/03/2023 - 7:16AMBackpack
Tue, 01/03/2023 - 4:44PMWhere's his driveline?
I current;y wear cargo pants w/ 1 battery on each side of pockets and monitor in my front pocket. I can"t take the weight on my shoulders, I wear cargo shorts in the summer. It does display my wires but so be it.
In reply to Backpack by Lee S.
Larry B.I wear mine the same way Lee…
Mon, 01/09/2023 - 2:43PMI wear mine the same way Lee S. I found that very little of the wires show when I use the Velcro ties.
In reply to I wear mine the same way Lee… by Larry B.
Larry B.Finished product
Mon, 01/09/2023 - 2:44PMIn reply to Finished product by Larry B.
Lee S.Looks Great
Tue, 01/10/2023 - 10:29AMHey Larry,
Looks fantastic. I don't mind if a few wires are exposed. I always get that look like I have 5 heads!! I just can't take that weight on my shoulders and neck. I'm interested in your window dressing.....I constantly have a rash under my dressing and my driving my LVAD team crazy trying to resolve it. I'm game for trying different dressings to try to fix this rash. The ones I have are Centurion and I do get a rash from them. Your window dressing doesn't look like these so that's why i'm interested in them and where you get them.
In reply to Looks Great by Lee S.
Larry B.Window dressing
Mon, 01/16/2023 - 3:31PMWe use the SorbaView ULTIMATE DRESSING that comes in the complete dressing kit by Centurion. We receive all of our supplies from Continuum. Been using them now for over six years and they have been great to deal with. Sounds like we may be using the same dressing. Maybe not though since mine doesn’t say “Shield”. Mine says “ULTIMATE DRESSING”. If it’s not the SorbaView, what else touches the skin where it has the rash? Could be the antiseptic cleaning pad that’s used! Those are the only things that actually get close to my wound. If it’s not the area right around the wound but more on the perimeter, it could be what you are using to clean the adhesive off with. We use the blue Goo Gone medical adhesive remover we purchase through Amazon. Works great and smells good too.
In reply to Window dressing by Larry B.
Lee S.Rash
Mon, 01/16/2023 - 4:04PMThanks Larry for your input.
I really don't trust any product that Centurion makes. It just seems like everything is making me break-out. I cleaned the area with several different products and nothing is helping. I'm currently at a loss on how to proceed. I have 4x4 gauze taped on right now with Mefix tape. That's the only way I can survive right now...but I'll break out where that tape is. I'm fighting a losing battle. I have a cabinet full of different products
In reply to Rash by Lee S.
Sandra K.Lee S., if you haven't…
Mon, 06/05/2023 - 8:22PMLee S., if you haven't already, use a skin barrier type stuff. Not all skin prep products work the same. I also use Betadine instead of the antiseptic included in the kits. ALSO, I use a medical adhesive remover spray. The tape and anchor were pulling my skin off. The medical adhesive spray has silicone and removes things MUCH easier! If you just pull off tape or the anchor it can irritate skin more.
In reply to Looks Great by Lee S.
Joanne S.My husband is allergic to…
Sat, 03/25/2023 - 10:09AMMy husband is allergic to the antiseptic in the kit and it causes a rash. We use betadine instead. The antiseptic allergy is pretty common.
In reply to Backpack by Lee S.
Deannie S.Backpack
Mon, 01/09/2023 - 11:46PMI would also like to know where the driveline is. I have tried similar backpacks but can't figure out what to do with the driveline.
In reply to Backpack by Lee S.
Chuck S.Battery storage
Mon, 01/16/2023 - 8:36PMWhen they were setting me for discharge the OT lady help me set a harness that was available it holds my batteries on my sides and controller hanging on the front of my chest along with my cell phone. I worked Contruction retired for now it worked out great for me it’s modular you can add things to it . I will look up product number and forward it on
In reply to Backpack by Lee S.
Adrienne H.Hi Lee! He generally velcro…
Tue, 01/17/2023 - 9:14AMHi Lee!
He generally velcro ties it along his belt line.
The weight is still on one shoulder tho, but he loves the overalls!
Finished product
Mon, 01/09/2023 - 11:55PMHi Larry B,
Would you mind sharing what brand of bandage you use? I have used a SorbaView Shield since I was implanted on 9-11-17. Yours looks a little different shape and is able to come straight out to the anchor. Maybe I don't have mine on correctly. You have a battery in each pocket and the controller in the cargo pocket I think. Might not work as well on a woman but I may give it a shot. Thanks, Deannie
In reply to Finished product by Deannie S.
Lee S.Drive-line Dressing
Tue, 01/10/2023 - 1:26PMHi Deannie,
I'm interested in the SorbaView Shield you use to cover your drive-line. As you can see from my prior posts my rash will not go away so I'm always looking for something different to try. Where do you get these? And how do they work for you?
Thanks,
Lee
In reply to Drive-line Dressing by Lee S.
Deannie S.Drive line dressing
Tue, 01/10/2023 - 11:51PMHi Lee, I order my supplies from Wound Care Resources out of Yorkville, TN. I use a size medium in the SorbaView. The website is https://www.woundcareresources.net/wound-care-resources/ I believe it is a Centuriun product. I sometimes have a little sticky residue but no rash at all from this. Kind of hard to tell from this, but it goes on as one layer with the window, then a cover piece that fits under the drive line and a length of tape to cover where the two pieces go together. It is product number SV353UDT. Pretty good description on the website. And they do bill insurance as long as the item is on the order form list provided by the VAD team. Good luck!
In reply to Drive line dressing by Deannie S.
Chuck S.Driveline rash
Mon, 01/16/2023 - 8:27PMI was using 100% strength solution hippo clean now I am now on 25% strength solution it helped with the rashes
i do dressing changes twice a week with daily dressing kits from Contium supply been doing that for two years, have my LVAD for almost 4 years now. Had a lot of driveline infections in the beginning including a mold infection cleared up in a 5-6 months that was following my driveline into my belly after taking a lot Bactrim for a year and a half , no signs of at all no longer have to take bactrim. Had a lot of bacterial and mold testing for a year
In reply to Finished product by Deannie S.
Larry B.Bandage
Mon, 01/16/2023 - 3:49PMI’m using the SorbaView ULTIMATE DRESSING. Sound like it’s different from the Shield.
Vest
Tue, 01/10/2023 - 1:01PMI’ve always found that a vest worked best for me. A backpack was necessary for the extra batteries and replacement controller.
Green discharge
Wed, 01/11/2023 - 7:38PMHas anyone ever had green discharge from their LVAD site?
In reply to Green discharge by Lynn M.
Diane B.Green discharge
Thu, 02/02/2023 - 7:46PMMaybe you got a response to your question already but as far as I know green can be an indication for bacterial infection. Should get it checked sooner rather than later. Diane
In reply to Green discharge by Diane B.
Lynn M.Green discharge
Sat, 02/04/2023 - 11:56AMHi guys! Thx for responding. He finally went to infectious disease in Rochester and the Dr. Isn’t concerned. Just said if it gets worse to call. The nurse said the Dr. Usually takes a swab for testing but she didn’t even do that. He said he saw the Dr. For less that a minute. That’s the last time he sees her since she is going somewhere else, so he will see someone else when he goes in 3 months.
In reply to Green discharge by Lynn M.
Sandra K.Lynn, usually green…
Mon, 06/05/2023 - 8:35PMLynn, usually green discharge means infection. Has it gotten any better?
In reply to Lynn, usually green… by Sandra K.
Lynn M.Hi, it definitely was an…
Wed, 06/07/2023 - 10:40PMHi, it definitely was an infection. He ended up in the hospital for a few weeks. Still has it, but under control at this point. He will probably be in and out of hospital tho cause he refuses to take care of it the way he is supposed to. Doesn’t use gloves or antiseptics and never washes. This man has 10 lives I swear. TYSM for asking, I appreciate it.