Haven’t heard a thing about smaller batteries! With my HM3 I get close to 17 hrs a day. Would much rather have them concentrating on how to make this system waterproof. Would be nice to get back in a pool again and not go through the change of life to take my daily morning shower!
I've heard that the total implantation-2 years off...Haven't heard smaller batteries as of yet. Amen to your comment Larry B with swimming etc,/bathing. I've been an avid swimmer all my life.
I don't know if you saw the news a few weeks ago. The FDA has given Medtronic fast track approval to develop a completely implantable LVAD including the power source. N it's a few years from going to market but it is coming. Medtronics is working on it and predicts in 2 to 5 years it could be ready for wide distribution.
An LVAD with no DRIVELINE. No more infection risk, and since it's all internal, no more bandages to change. Essentially a heart transplant without the risk of infection or rejection.
Not sure if I want to do the surgery again just to get that, but if my pump was having issues this would be a great upgrade
I would surmise the 5 year point....They need to make their $ on the HM3....... Its dollars and change!! Bottom line....and going through open heart surgery more than once, well is too much for me! The thought just irritates me internally. I continue to pray that my heart improves, EF that is, and I can get this unhooked...
It occurs to me that with the number ever increasing of LVAD patients a great deal of pressure could be brought to bear on someone like Elon Musk or Medtronics to do more and faster to make batteries smaller and make the device implantable. Unity is power. Are there group leaders who can craft letters with multiple patient signatures to urge that more work is done in these areas.
Absolutely, we are sending ppl to the moon and Mars for God sake. Not to mention all types of ppe for covid and a vaccine. What the heck are they doing with the LVAD??? putting to the wayside. Again, hate to seem like broken record, but Abbott received a $750 million dollar contract for ppe dealing with covid. WE ARE LAST ON THEIR LIST. What we are having handed to us is "lip service and false hope" to help us hang in there. I would love to see one of the medical professionals hook up to batteries/controller 24/7 with a tube going into their abdomen. Having the fear of alarms, infections etc...I had one Dr. ask what is holding me back from having fun and living life? I laughed. For one, the continued monitoring, equipment, gear, blood sticks, etc. $$$ to travel, and now in a pandemic for the last year. HELLO Dr. what planet have you been on? In addition, not sure about the rest of you, but I also have an ICD. I was told would help my EF, 5 diff. doctors.... I believe they stuck them in everyone prior to LVAD. Actually I had mine put in ll/4/16 and got very sick thereafter, to have dropped almost death 2/16/17. Not long after. So the 5 second opinions i received, WERE WRONG!!!! Unbelievable.. If anything please know your care and have an advocate! They will play house with anyone and everyone they can. As I said before, patient beware! There are many ppl in the grave today from medical mistakes. I just recently experienced a med error but I found it followed by the pharmacist.
I don't know if you saw the news a few weeks ago. The FDA has given Medtronic fast track approval to develop a completely implantable LVAD including the power source. N it's a few years from going to market but it is coming. Medtronics is working on it and predicts in 2 to 5 years it could be ready for wide distribution.
An LVAD with no DRIVELINE. No more infection risk, and since it's all internal, no more bandages to change. Essentially a heart transplant without the risk of infection or rejection.
Not sure if I want to do the surgery again just to get that, but if my pump was having issues this would be a great upgrade
Yes that is what Jefferson told me it is about 2 years off, the total implantable. I am curious though how big the entire unit is? Basically, as I was told, what is on outside, will be put inside. and claimed would be more chance for infection. The reason they didn't have them as of yet because the trials, they were catching fire inside...Just sharing. I would love nothing more to have it out of implantable to live a normal life. I'll wait, of course we all will, until the perfect this unit. Thank you for sharing!!
We all need to send ELON MUSK money to invest in long term batteries, because that's really what's needed. They can shrink the controller down, and transmit data to doctors via blue tooth, so the true limitation is battery life.
Maybe you have to go in every once in awhile for new batteries?
They sure can, its called "political gain." Dollar signs $$$. The price tag on implantation with heartmate 2 alone is 1,000,000.00. Even though they want to help people, its a BUSINESS, capital and income!! I'll believe it when I see it.
use wide masking tape for showering. It works great. Keeps site dry and removes easily.
My husband his destination HM2 surgery in oct. 2016. He had to have a replacement 5 days later , Thrombosis on the pump. He was in the hospital 61 days. His age is 74. There has been some events due to the Lvad, but nothing basically faulty with it. He recently had an alarm go off and he stopped breathing , was unconscious for 1 minute. His pump stopped and there was no blood being pumped. I am his wife and caregiver, very scary. Did the steps, called the team, he did come back to me. He was hospitalized at Mayo in Pheonix , for what they call “short to shield “. They preformed an external percutaneous lead replacement , this did not solve the problem ,when returned to grounded cable. He was discharged with a power module and a non-grounded cable. We will be replacing his pump again due to continued wiring damage progression.
I, Susan would like to know if any other Lvad patient has experienced this.
Susan I have had the same experience with a short to wire. I am an electrical Eng so a lot of questions were asked and answered. Short tutorial--The drive line consists of 6 wires or 3 pairs each pair is capable of supplying power to the pump. they are wired in parallel. this allows for triple redundancy for a wire breakage. these 6 wires are enclosed in a grounding tube made like a hollow rope made of hundreds of hair thin wires. what happened to me and your husband was that one or more of the ground part broke and became like little needles that penetrated at least one of the power carrying wires. Mine was detected in clinic when I switched from battery to cable and alarms started going off. They switched me to an orange coded cable that was ungrounded and solve the immediate problem. I was then given an "orange cable to take home. they set up an appointment with two of the Abbott Labs engineers to do the cut and replace wire by wire routine on me. I felt like I had a bomb in me and two bomb tecs were defusing me.
I hope this helps you understand the situation better. I think Heartmate III do not have a ground cable part. It maybe the Heartware one that have a clear drive line and you can see the 6 wires. Lucky for me the short was in the part of the drive line that was outside my body so no surgery to replace the line. The surgery required if it was inside would be done under the rib cage and not requiring the chest to be cracked open.
Hi Jeff, I too have heartmate II for 3 1/2 years and have already had the driveline outside fixed. Shortened the line an inch but oh well...i guess this is our life. I had two technicians from two diff. states come in and fix my line...But also, also the hospital failed to do a software UPGRADE on changed controller...so bells and whistles did go off. On XRay couldn't see damage..So I question, was there really damage or was it the upgrade software issue? One will never know. I recently had the night controller line twisted...4 am the day before go to clinic, 4 month appt. the alarm goes off pump stopped but didn't need to silence, untwisted the wire, and it stopped....19 second alarm. Well when they hooked me up to main computer...they saw it...hadn't had an alarm in a year, since their upgrade issue. they acted like they wanted hospitalization took pics, anxiety to the max...echo, Xray on line and controller...I said my God this is a year to week of last repair...Couldn't find nothing on line or controller as an issue...The dr. immediately tried to push heartmate 3.. I said are you crazy? I feel fine, I'm not sick what the heck would i want open heart of side chest opening again? I said your not opening up my chest again. Aint happening. He said boy your tough, i said no I stay on top of things. Fingers crossed no other problems. So so over all of this.
I have not had to address the issue with metal detectors, wanding, etc. yet. However, my LVAD team explained that if you suspect it could happen to arrive early, give them the security letter I always carry, advise security what you have and the circumstances, and to request a manual inspection by proper security personnel.
Have a Heart Mate 3 and have been advised not to take the chance, do any electrical work, welding, or even lean over into an engine compartment as they are not sure what exactly could happen. No ID card just a letter from LVAD department addressed "To Whom It May Concern" with their 24 hours contact number if further information is needed.
I've had an LVAD for five years now and have been through metal detectors at sporting events, airports, foreign travel, and other types of events. Tell security you have an LVAD and they will wand you by hand. There is no danger to your LVAD (no magnets involved) and no note or card required. Sometimes it takes a little longer, waiting for a person with a wand to show up, but sometimes you can go through faster, too.
I havent flown but i have been in different circumstances wuth bag checks. Basically i have said i have medical issues, heart pump implant and ooened the top of my bag all with no problems.
I havent flown but i have been in different circumstances wuth bag checks. Basically i have said i have medical issues, heart pump implant and ooened the top of my bag all with no problems.
I refuse to allow them to wand me or scan me in any way as a magnetic field can stop your pump. I quickly volunteer for a personal pat down. Now I call ahead and ask for the senior TAS agent on duty for the time and flight that concerns me. I have a Doctors letter explaining my condition with the doctor personal cell number. The bigger problem is forcing them to allow you to take all your equipment on board as carry on. Checked baggage may not arrive at and when you do, if ever. I have a hard case bag that is the largest allowed carry on. It took me hours to figure out how to position everything just perfectly so that it still close. I even took pictures so that I could repeat it.
Most sporting events only have walk thrus that are similar to a retail store so the power is not that strong. They are OK, but don not linger in them. If you are pulled aside for a hand held scan refuse and explain situation allowing the physical pat down.
Get a letter from your LVAD dept..and also you can't go through a scanner, plain and simple. They can scan "wand" waste down but that is all. And all of your gear goes on the plane. Be very firm if need be.
A lot depends on how you carry and distribute the weigh. Don't tell me your purse is under 7 lbs girl. I am a male but have studed all different kinds of ways to carry the equipment. For women the best thing I have found on the market is a thing called runtasty. I know the name is strange, but it is designed for joggers or runners. It has two pouches for water bottles which with a small modification can accommodate the batteries with an elastic band holding them in. The modification is one snip and then you can use the elastic as not intended. The controller will fit in the clear pocket designed for the cell phone. Janette, which is the same as my sister (actually just close, her's is Jeanette), if this is totally confusing to you please contact me at jeffwillcox@comcast.net or any body else.
My husband has had an LVAD for 5 years. He invented a way to wear and conceal his batteries and not have to carry a purse or bag. He goes to a resale shop and buys a pair of lightweight trousers with big front pockets. He brings those home and cuts off everything but the waist band and the pockets.. He puts this on after he puts on his controller and belt. Then he puts the batteries in the pockets. And then he puts on his trousers albeit a size large than he would normally have own but no one sees or knows that he has batteries in his pockets. And big one, his hands are free, he's not wearing the cumbersome vest and the driveline and cables are all inside side his clothing where they can not be pulled or twisted.
Hi , I've read it on this website and my support nurse told me the same thing. I don't know how long it will be but I heard this. HONEST !!! I would not tell you this if it's not true. You take care and Peace be with you.
Yes, I'v heard it was a couple, to three years off...However, I've also heard from various Dr's that what is on the outside will be inside...I can't imagine having this huge battery pack and controller inside of me...infection city. They would need something smaller, compact, while securing this development. Don't get me wrong...they should have had something a long time ago; however, with a patene they always run the entire time to make the $$$$.
This is just my feeling, my husband last year in November had a LVAD malfunction. It was called short to shield, basically wiring , inside. So he had surgery for new implant in December, four weeks later back in the hospital for infection, 5 operations in 10 days for debridement, application wound vac, irrigation chest, reconstruction chest wall and evacuation hematoma. This was a very difficult time for my husband. It was more painful and stressful than his first implant 3 1/2 years ago. Hey, he’s alive and recovering, the docs, the nurses and the team were amazing, but my husband is 74 yrs. old and I think this is good. It’s amazing what could be changing for those that need it.
God Bless us all, save us from the virus😇
Wow, Susan, my heart goes out to you and your husband. What a fighter he is. I had a little taste of driveline repair, alarms...However, the update on the software wasn't done for the new controller, therefore, it was off balance and didn't match. My driveline was little severed and had to be repaired..Now I have a heavy inch/and a half hard type tube over it....Very balky!! What an experience as well, but nothing like your husband's. Hope all is going smooth for you and God be with both of you...
I was reading your post about damage to your DL . Here is some thing that might protect it more. I dont have it but thought you might like it. I know that many of us are always looking for something that makes carrying your batteries and controller around to make life easier. I myself have been looking for a decent backpack. Does anyone here have a suggestion for one that they like ? https://medi-materials.com/product/the-protex-dl/ https://medi-materials.com/product/the-protex-dl/
My husband, age 78, had a similar occurrence although not as bad as the two of you suffered through. It was a short to shield issue which must be fairly common. And external repair was attempted but it was determined the problem was internal so he underwent a pump exchange. Sadly to say it was almost a case of, "the operation was a success but the patient died"...almost. On the 3rd post op day he bled out 2 units of blood from the old exit wound. The wound was packed. He was transfused and 3 months later he had a driveline infection. This could be credited to not the short to shield problem but the blood loss post op which in my opinion was preventable. He had 6 weeks of daily IV antibiotics and has been on a daily maintenance dose for the last 2 years. Fortunately he has been able to be active and feels very well. Hang in there. It will all get better.
Thank you for you reply. This type of connection with other LVAD patients really helps. Barry’s recovery has been a journey of different conflicts, and now with Covid-19 , continued concerns. His breathing is very difficult, he is still very weak, and he is one that has a hard time with therapy. We have in home therapy coming in 2Xs a week, but he should follow up with time at home exercise that they have suggested. I don’t push him, he already has enough to deal with. I just say my prayers that it just takes time, give him the strength he needs.
My husband has a Heartmate 3 installed 8/16 2019. We were given a letter for TSA but in addition 72 hours before our flight we called TSA Cares & gave them my husband's information. They will contact your departing airport and set it up. We were also advised to order a wheel chair in advance which helps going through security & boarding the airplane. On our originating flight we were met at the ticket counter by a TSA agent who walked us through the process. They did not use the wand directly but had my husband rub his hand over his control unit & batteries & then used the wand on his hand. We had no problem getting our hard carryon bag full of the LVAD equipment through security. Be sure not to put anything but the equipment in the case and label it on the outside MEDICAL EQUIPMENT. It is not counted as one of your carryon bags and they will not try to get you to gate check it. Prior to our return trip my husband had lost his wallet so when I contacted TSA Cares 72 hours ahead they told me what to do and said don't worry we'll get you on the flight. It took a few extra steps, but we got thru security just fine.
Just wondering if anyone has any knowledge of lighter weight batteries being available. My LVAD installed 6-20. Also does anyone have recommendations on new shirts to carry batteries? Thanks
I'm John and I've had my LVAD for 12 years now (I'm on my 3rd one). I recently ordered the LVAD backpack and I LOVE it. I used the shoulder bag or we had a conceal and carry shirt converted to handle the batteries. BY FAR, this is the best thing I have ever used. They are pricey at around $100 but well worth it. Good luck in your search! Stay safe!
Totally agree with you Larry. Somehow we need to get Elon Musk to help us. Not kidding. I think we can get them to figure it out. Just need to see who knows how to get to them
According to comments from the group tonight we need to be contacting FDA or Medtronic to encourage them to lighten the batteries we need and carry. No immediate relit soon though
I am a seamstress and I have altered sweatshirts and made pockets with zippers for my friends batteries. They have all kinds of lvad clothes online and if you know someone that sews you can modify some clothes in the same manner of the ones you buy. The fishing and hunting vest are a good investment too. Check the prices online rather than in a sportswear store they were less expensive.
In a moment of clarity our Abbott rep said 2 years ago there were no plans to make smaller/lighter batteries.
As you can see with the approval of the totally implantable LVAD at about the same time, there will be no R&D on shrinking the batteries for existing LVADs IMO.
As I had to have my HM2 replaced with a HM3 due to a blood clot issue, I would advise everyone to make sure your doc is watching your HM2 closely.
Due to Covid we rarely go out, only grocery & drug store mainly. I've read that upgrading one's mask game to a KN95 or N95 is highly advisable now.
And in closing-if you're waiting/expecting Abbott, or Elon Musk to help us existing LVAD patients with updating the batteries (smaller, lighter), don't hold your breath. Abbott is most likely totaly focused on the new completely implantable LVAD & Musk on his rocket ship.
Creating a personal link between LVADers,and their caregivers, with others in the same situation in there own area. A place to post your information so others can connect with you.
Haven’t heard a thing about…
Mon, 11/18/2019 - 12:34PMHaven’t heard a thing about smaller batteries! With my HM3 I get close to 17 hrs a day. Would much rather have them concentrating on how to make this system waterproof. Would be nice to get back in a pool again and not go through the change of life to take my daily morning shower!
In reply to Haven’t heard a thing about… by Larry B.
Juanita P.batteries..
Mon, 11/18/2019 - 12:40PMI've heard that the total implantation-2 years off...Haven't heard smaller batteries as of yet. Amen to your comment Larry B with swimming etc,/bathing. I've been an avid swimmer all my life.
In reply to Haven’t heard a thing about… by Larry B.
MITCHELL S.Waterproof
Mon, 11/25/2019 - 2:09PMI don't know if you saw the news a few weeks ago. The FDA has given Medtronic fast track approval to develop a completely implantable LVAD including the power source. N it's a few years from going to market but it is coming. Medtronics is working on it and predicts in 2 to 5 years it could be ready for wide distribution.
An LVAD with no DRIVELINE. No more infection risk, and since it's all internal, no more bandages to change. Essentially a heart transplant without the risk of infection or rejection.
Not sure if I want to do the surgery again just to get that, but if my pump was having issues this would be a great upgrade
In reply to Waterproof by MITCHELL S.
Juanita P.Implantable LVAD
Tue, 04/14/2020 - 8:48AMI would surmise the 5 year point....They need to make their $ on the HM3....... Its dollars and change!! Bottom line....and going through open heart surgery more than once, well is too much for me! The thought just irritates me internally. I continue to pray that my heart improves, EF that is, and I can get this unhooked...
In reply to Waterproof by MITCHELL S.
Anonymoussmaller batteries
Mon, 01/04/2021 - 9:21PMIt occurs to me that with the number ever increasing of LVAD patients a great deal of pressure could be brought to bear on someone like Elon Musk or Medtronics to do more and faster to make batteries smaller and make the device implantable. Unity is power. Are there group leaders who can craft letters with multiple patient signatures to urge that more work is done in these areas.
In reply to smaller batteries by Anonymous
Juanita P.Smaller batteries
Tue, 01/05/2021 - 9:03AMAbsolutely, we are sending ppl to the moon and Mars for God sake. Not to mention all types of ppe for covid and a vaccine. What the heck are they doing with the LVAD??? putting to the wayside. Again, hate to seem like broken record, but Abbott received a $750 million dollar contract for ppe dealing with covid. WE ARE LAST ON THEIR LIST. What we are having handed to us is "lip service and false hope" to help us hang in there. I would love to see one of the medical professionals hook up to batteries/controller 24/7 with a tube going into their abdomen. Having the fear of alarms, infections etc...I had one Dr. ask what is holding me back from having fun and living life? I laughed. For one, the continued monitoring, equipment, gear, blood sticks, etc. $$$ to travel, and now in a pandemic for the last year. HELLO Dr. what planet have you been on? In addition, not sure about the rest of you, but I also have an ICD. I was told would help my EF, 5 diff. doctors.... I believe they stuck them in everyone prior to LVAD. Actually I had mine put in ll/4/16 and got very sick thereafter, to have dropped almost death 2/16/17. Not long after. So the 5 second opinions i received, WERE WRONG!!!! Unbelievable.. If anything please know your care and have an advocate! They will play house with anyone and everyone they can. As I said before, patient beware! There are many ppl in the grave today from medical mistakes. I just recently experienced a med error but I found it followed by the pharmacist.
In reply to Haven’t heard a thing about… by Larry B.
MITCHELL S.Waterproof
Mon, 11/25/2019 - 2:09PMI don't know if you saw the news a few weeks ago. The FDA has given Medtronic fast track approval to develop a completely implantable LVAD including the power source. N it's a few years from going to market but it is coming. Medtronics is working on it and predicts in 2 to 5 years it could be ready for wide distribution.
An LVAD with no DRIVELINE. No more infection risk, and since it's all internal, no more bandages to change. Essentially a heart transplant without the risk of infection or rejection.
Not sure if I want to do the surgery again just to get that, but if my pump was having issues this would be a great upgrade
In reply to Waterproof by MITCHELL S.
Juanita P.Batteries
Mon, 11/25/2019 - 2:43PMYes that is what Jefferson told me it is about 2 years off, the total implantable. I am curious though how big the entire unit is? Basically, as I was told, what is on outside, will be put inside. and claimed would be more chance for infection. The reason they didn't have them as of yet because the trials, they were catching fire inside...Just sharing. I would love nothing more to have it out of implantable to live a normal life. I'll wait, of course we all will, until the perfect this unit. Thank you for sharing!!
In reply to Batteries by Juanita P.
MITCHELL S.We all need to send ELON…
Mon, 11/25/2019 - 3:58PMWe all need to send ELON MUSK money to invest in long term batteries, because that's really what's needed. They can shrink the controller down, and transmit data to doctors via blue tooth, so the true limitation is battery life.
Maybe you have to go in every once in awhile for new batteries?
In reply to We all need to send ELON… by MITCHELL S.
Juanita P.Batteries
Mon, 01/04/2021 - 7:38PMThey sure can, its called "political gain." Dollar signs $$$. The price tag on implantation with heartmate 2 alone is 1,000,000.00. Even though they want to help people, its a BUSINESS, capital and income!! I'll believe it when I see it.
In reply to Haven’t heard a thing about… by Larry B.
Barry and Susan (caregiver) S.Shower
Wed, 12/04/2019 - 3:37PMuse wide masking tape for showering. It works great. Keeps site dry and removes easily.
My husband his destination HM2 surgery in oct. 2016. He had to have a replacement 5 days later , Thrombosis on the pump. He was in the hospital 61 days. His age is 74. There has been some events due to the Lvad, but nothing basically faulty with it. He recently had an alarm go off and he stopped breathing , was unconscious for 1 minute. His pump stopped and there was no blood being pumped. I am his wife and caregiver, very scary. Did the steps, called the team, he did come back to me. He was hospitalized at Mayo in Pheonix , for what they call “short to shield “. They preformed an external percutaneous lead replacement , this did not solve the problem ,when returned to grounded cable. He was discharged with a power module and a non-grounded cable. We will be replacing his pump again due to continued wiring damage progression.
I, Susan would like to know if any other Lvad patient has experienced this.
In reply to Shower by Barry and Susa…
Jeff W.Drive line short
Fri, 03/27/2020 - 5:50PMSusan I have had the same experience with a short to wire. I am an electrical Eng so a lot of questions were asked and answered. Short tutorial--The drive line consists of 6 wires or 3 pairs each pair is capable of supplying power to the pump. they are wired in parallel. this allows for triple redundancy for a wire breakage. these 6 wires are enclosed in a grounding tube made like a hollow rope made of hundreds of hair thin wires. what happened to me and your husband was that one or more of the ground part broke and became like little needles that penetrated at least one of the power carrying wires. Mine was detected in clinic when I switched from battery to cable and alarms started going off. They switched me to an orange coded cable that was ungrounded and solve the immediate problem. I was then given an "orange cable to take home. they set up an appointment with two of the Abbott Labs engineers to do the cut and replace wire by wire routine on me. I felt like I had a bomb in me and two bomb tecs were defusing me.
I hope this helps you understand the situation better. I think Heartmate III do not have a ground cable part. It maybe the Heartware one that have a clear drive line and you can see the 6 wires. Lucky for me the short was in the part of the drive line that was outside my body so no surgery to replace the line. The surgery required if it was inside would be done under the rib cage and not requiring the chest to be cracked open.
In reply to Drive line short by Jeff W.
Juanita P.Driveline
Mon, 01/04/2021 - 8:01PMHi Jeff, I too have heartmate II for 3 1/2 years and have already had the driveline outside fixed. Shortened the line an inch but oh well...i guess this is our life. I had two technicians from two diff. states come in and fix my line...But also, also the hospital failed to do a software UPGRADE on changed controller...so bells and whistles did go off. On XRay couldn't see damage..So I question, was there really damage or was it the upgrade software issue? One will never know. I recently had the night controller line twisted...4 am the day before go to clinic, 4 month appt. the alarm goes off pump stopped but didn't need to silence, untwisted the wire, and it stopped....19 second alarm. Well when they hooked me up to main computer...they saw it...hadn't had an alarm in a year, since their upgrade issue. they acted like they wanted hospitalization took pics, anxiety to the max...echo, Xray on line and controller...I said my God this is a year to week of last repair...Couldn't find nothing on line or controller as an issue...The dr. immediately tried to push heartmate 3.. I said are you crazy? I feel fine, I'm not sick what the heck would i want open heart of side chest opening again? I said your not opening up my chest again. Aint happening. He said boy your tough, i said no I stay on top of things. Fingers crossed no other problems. So so over all of this.
In reply to Haven’t heard a thing about… by Larry B.
Mercedes S.Batteries
Tue, 05/25/2021 - 7:27AMCan't wait. Hope it happens in my life time. I'm 74yrs
In reply to Haven’t heard a thing about… by Larry B.
Alaina R.Yes. My husband want a bath…
Sat, 06/12/2021 - 2:02AMYes. My husband want a bath and to go swimming again.
Batteries
Mon, 11/25/2019 - 2:47PMI was also told, for your FYI, pig hearts would be used before implantable was done...Idk..just sharing!!
Here piggie piggie. I…
Mon, 11/25/2019 - 4:01PMHere piggie piggie. I promise I won't hurt you
Metal Detectors
Tue, 11/26/2019 - 10:16AMHow do you handle your LVAD at the airport with regard to the metal detector or wanding?
The same question please for major sporting events where there are metal detectors.
In reply to Metal Detectors by Mike M.
Stan C.Metal Detectors 2
Mon, 12/02/2019 - 10:12PMI have not had to address the issue with metal detectors, wanding, etc. yet. However, my LVAD team explained that if you suspect it could happen to arrive early, give them the security letter I always carry, advise security what you have and the circumstances, and to request a manual inspection by proper security personnel.
In reply to Metal Detectors 2 by Stan C.
Connie W.Security detectors
Tue, 12/03/2019 - 8:02AMThey usually use the wand on vad patients. Just let them know. U should've been given a id card for your machine to carry w you
In reply to Metal Detectors 2 by Stan C.
Connie W.Security detectors
Tue, 12/03/2019 - 8:02AMThey usually use the wand on vad patients. Just let them know. U should've been given a id card for your machine to carry w you
In reply to Security detectors by Connie W.
Stan C.Security Detectors
Tue, 12/03/2019 - 8:33AMHave a Heart Mate 3 and have been advised not to take the chance, do any electrical work, welding, or even lean over into an engine compartment as they are not sure what exactly could happen. No ID card just a letter from LVAD department addressed "To Whom It May Concern" with their 24 hours contact number if further information is needed.
In reply to Metal Detectors by Mike M.
Mike S.Metal Detectors
Mon, 12/09/2019 - 12:08PMI've had an LVAD for five years now and have been through metal detectors at sporting events, airports, foreign travel, and other types of events. Tell security you have an LVAD and they will wand you by hand. There is no danger to your LVAD (no magnets involved) and no note or card required. Sometimes it takes a little longer, waiting for a person with a wand to show up, but sometimes you can go through faster, too.
In reply to Metal Detectors by Mike M.
Stephen H.Metal detectors
Mon, 12/09/2019 - 12:58PMI havent flown but i have been in different circumstances wuth bag checks. Basically i have said i have medical issues, heart pump implant and ooened the top of my bag all with no problems.
In reply to Metal Detectors by Mike M.
Stephen H.Metal detectors
Mon, 12/09/2019 - 12:58PMI havent flown but i have been in different circumstances wuth bag checks. Basically i have said i have medical issues, heart pump implant and ooened the top of my bag all with no problems.
In reply to Metal Detectors by Mike M.
Jeff W.metal detectors
Fri, 03/27/2020 - 6:12PMI refuse to allow them to wand me or scan me in any way as a magnetic field can stop your pump. I quickly volunteer for a personal pat down. Now I call ahead and ask for the senior TAS agent on duty for the time and flight that concerns me. I have a Doctors letter explaining my condition with the doctor personal cell number. The bigger problem is forcing them to allow you to take all your equipment on board as carry on. Checked baggage may not arrive at and when you do, if ever. I have a hard case bag that is the largest allowed carry on. It took me hours to figure out how to position everything just perfectly so that it still close. I even took pictures so that I could repeat it.
Most sporting events only have walk thrus that are similar to a retail store so the power is not that strong. They are OK, but don not linger in them. If you are pulled aside for a hand held scan refuse and explain situation allowing the physical pat down.
In reply to Metal Detectors by Mike M.
Anonymousairport
Mon, 01/04/2021 - 6:23PMEasiest way...order a wheelchair at the gate and the attendant will get you right through security. The $5 tip we give is more than worth the ease.
In reply to Metal Detectors by Mike M.
Juanita P.Metal detectors
Mon, 05/17/2021 - 5:24PMGet a letter from your LVAD dept..and also you can't go through a scanner, plain and simple. They can scan "wand" waste down but that is all. And all of your gear goes on the plane. Be very firm if need be.
Batterys
Sun, 12/01/2019 - 12:53PMI am a 100 lb women who find the batteries very heavy I would be so happy if they made A lot lighter battery so I can walk longer and do more things
In reply to Batterys by Janette G.
Jeff W.battery weigh
Fri, 03/27/2020 - 6:26PMA lot depends on how you carry and distribute the weigh. Don't tell me your purse is under 7 lbs girl. I am a male but have studed all different kinds of ways to carry the equipment. For women the best thing I have found on the market is a thing called runtasty. I know the name is strange, but it is designed for joggers or runners. It has two pouches for water bottles which with a small modification can accommodate the batteries with an elastic band holding them in. The modification is one snip and then you can use the elastic as not intended. The controller will fit in the clear pocket designed for the cell phone. Janette, which is the same as my sister (actually just close, her's is Jeanette), if this is totally confusing to you please contact me at jeffwillcox@comcast.net or any body else.
In reply to battery weigh by Jeff W.
AnonymousWearing batteries
Mon, 01/04/2021 - 9:29PMMy husband has had an LVAD for 5 years. He invented a way to wear and conceal his batteries and not have to carry a purse or bag. He goes to a resale shop and buys a pair of lightweight trousers with big front pockets. He brings those home and cuts off everything but the waist band and the pockets.. He puts this on after he puts on his controller and belt. Then he puts the batteries in the pockets. And then he puts on his trousers albeit a size large than he would normally have own but no one sees or knows that he has batteries in his pockets. And big one, his hands are free, he's not wearing the cumbersome vest and the driveline and cables are all inside side his clothing where they can not be pulled or twisted.
New LVADS
Mon, 12/09/2019 - 1:46PMHi , I've read it on this website and my support nurse told me the same thing. I don't know how long it will be but I heard this. HONEST !!! I would not tell you this if it's not true. You take care and Peace be with you.
Total implantation of the LVAD
Fri, 03/27/2020 - 7:03PMYes, I'v heard it was a couple, to three years off...However, I've also heard from various Dr's that what is on the outside will be inside...I can't imagine having this huge battery pack and controller inside of me...infection city. They would need something smaller, compact, while securing this development. Don't get me wrong...they should have had something a long time ago; however, with a patene they always run the entire time to make the $$$$.
New LVAD implant
Sun, 03/29/2020 - 9:59PMThis is just my feeling, my husband last year in November had a LVAD malfunction. It was called short to shield, basically wiring , inside. So he had surgery for new implant in December, four weeks later back in the hospital for infection, 5 operations in 10 days for debridement, application wound vac, irrigation chest, reconstruction chest wall and evacuation hematoma. This was a very difficult time for my husband. It was more painful and stressful than his first implant 3 1/2 years ago. Hey, he’s alive and recovering, the docs, the nurses and the team were amazing, but my husband is 74 yrs. old and I think this is good. It’s amazing what could be changing for those that need it.
God Bless us all, save us from the virus😇
In reply to New LVAD implant by Barry and Susa…
Juanita P.LVAD Implant
Mon, 03/30/2020 - 8:23PMWow, Susan, my heart goes out to you and your husband. What a fighter he is. I had a little taste of driveline repair, alarms...However, the update on the software wasn't done for the new controller, therefore, it was off balance and didn't match. My driveline was little severed and had to be repaired..Now I have a heavy inch/and a half hard type tube over it....Very balky!! What an experience as well, but nothing like your husband's. Hope all is going smooth for you and God be with both of you...
In reply to LVAD Implant by Juanita P.
Gene Z.Drive line protection
Fri, 06/11/2021 - 12:43PMI was reading your post about damage to your DL . Here is some thing that might protect it more. I dont have it but thought you might like it. I know that many of us are always looking for something that makes carrying your batteries and controller around to make life easier. I myself have been looking for a decent backpack. Does anyone here have a suggestion for one that they like ? https://medi-materials.com/product/the-protex-dl/ https://medi-materials.com/product/the-protex-dl/
In reply to New LVAD implant by Barry and Susa…
Anonymousshort to shield problems
Tue, 04/14/2020 - 1:44AMMy husband, age 78, had a similar occurrence although not as bad as the two of you suffered through. It was a short to shield issue which must be fairly common. And external repair was attempted but it was determined the problem was internal so he underwent a pump exchange. Sadly to say it was almost a case of, "the operation was a success but the patient died"...almost. On the 3rd post op day he bled out 2 units of blood from the old exit wound. The wound was packed. He was transfused and 3 months later he had a driveline infection. This could be credited to not the short to shield problem but the blood loss post op which in my opinion was preventable. He had 6 weeks of daily IV antibiotics and has been on a daily maintenance dose for the last 2 years. Fortunately he has been able to be active and feels very well. Hang in there. It will all get better.
Short to shield
Tue, 04/14/2020 - 8:30AMThank you for you reply. This type of connection with other LVAD patients really helps. Barry’s recovery has been a journey of different conflicts, and now with Covid-19 , continued concerns. His breathing is very difficult, he is still very weak, and he is one that has a hard time with therapy. We have in home therapy coming in 2Xs a week, but he should follow up with time at home exercise that they have suggested. I don’t push him, he already has enough to deal with. I just say my prayers that it just takes time, give him the strength he needs.
God Bless be safe, Susan
Airline travel
Mon, 05/11/2020 - 3:11PMMy husband has a Heartmate 3 installed 8/16 2019. We were given a letter for TSA but in addition 72 hours before our flight we called TSA Cares & gave them my husband's information. They will contact your departing airport and set it up. We were also advised to order a wheel chair in advance which helps going through security & boarding the airplane. On our originating flight we were met at the ticket counter by a TSA agent who walked us through the process. They did not use the wand directly but had my husband rub his hand over his control unit & batteries & then used the wand on his hand. We had no problem getting our hard carryon bag full of the LVAD equipment through security. Be sure not to put anything but the equipment in the case and label it on the outside MEDICAL EQUIPMENT. It is not counted as one of your carryon bags and they will not try to get you to gate check it. Prior to our return trip my husband had lost his wallet so when I contacted TSA Cares 72 hours ahead they told me what to do and said don't worry we'll get you on the flight. It took a few extra steps, but we got thru security just fine.
Batteries
Sun, 01/03/2021 - 8:50PMJust wondering if anyone has any knowledge of lighter weight batteries being available. My LVAD installed 6-20. Also does anyone have recommendations on new shirts to carry batteries? Thanks
In reply to Batteries by John E.
John G.Hi John, I'm John and I've…
Mon, 05/17/2021 - 3:28PMHi John,
I'm John and I've had my LVAD for 12 years now (I'm on my 3rd one). I recently ordered the LVAD backpack and I LOVE it. I used the shoulder bag or we had a conceal and carry shirt converted to handle the batteries. BY FAR, this is the best thing I have ever used. They are pricey at around $100 but well worth it. Good luck in your search! Stay safe!
John
LVAD batteries
Mon, 01/04/2021 - 12:10PMI have had my LVAD for 5 years. these batteries seem like they were designed way back in world war 2 or maybe longer
I am tired of lugging around 6 pounds of batteries. You would think that with all the technology that has been put into
our LVAD's , that surely by now some new technology would have arrived to replace these monsterous batteries. I
mean, Come on, lookat the battery in your controller. it lasts for 3 years. 3 years folks. So, if they can make ONE
battery that works 24/7 to last that long and is that small and is the brains that runs the whole thing then it just seems
like they could somehow develop smaller batteries than these 6 pound ones I have been carrying around for 5
stinking years. JUST SAYING.
In reply to LVAD batteries by Larry W.
John E.Totally agree with you Larry…
Mon, 01/04/2021 - 10:50PMTotally agree with you Larry. Somehow we need to get Elon Musk to help us. Not kidding. I think we can get them to figure it out. Just need to see who knows how to get to them
According to comments from…
Mon, 01/04/2021 - 10:46PMAccording to comments from the group tonight we need to be contacting FDA or Medtronic to encourage them to lighten the batteries we need and carry. No immediate relit soon though
Clothes for LVAD
Tue, 02/09/2021 - 5:42PMI am a seamstress and I have altered sweatshirts and made pockets with zippers for my friends batteries. They have all kinds of lvad clothes online and if you know someone that sews you can modify some clothes in the same manner of the ones you buy. The fishing and hunting vest are a good investment too. Check the prices online rather than in a sportswear store they were less expensive.
Smaller Batteries
Fri, 05/07/2021 - 4:57PMAny word on smaller batteries for the heartmate 3?
Smaller batteries for Lvad 3
Tue, 05/25/2021 - 6:39AMI have had my Lvad for 4 years now I have not herd anything about smaller batteries could you please tell me what the situation is.e
Fully implantable …
Mon, 06/14/2021 - 11:49AMFully implantable ........ https://www.einnews.com/pr_news/522100420/implantable-battery-milestone-toward-leviticus-cardio-u-s-lvad-trial
Battery size & weight & Misc
Sun, 08/15/2021 - 10:03AMIn a moment of clarity our Abbott rep said 2 years ago there were no plans to make smaller/lighter batteries.
As you can see with the approval of the totally implantable LVAD at about the same time, there will be no R&D on shrinking the batteries for existing LVADs IMO.
As I had to have my HM2 replaced with a HM3 due to a blood clot issue, I would advise everyone to make sure your doc is watching your HM2 closely.
Due to Covid we rarely go out, only grocery & drug store mainly. I've read that upgrading one's mask game to a KN95 or N95 is highly advisable now.
And in closing-if you're waiting/expecting Abbott, or Elon Musk to help us existing LVAD patients with updating the batteries (smaller, lighter), don't hold your breath. Abbott is most likely totaly focused on the new completely implantable LVAD & Musk on his rocket ship.
Peace y'all.