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Thomas F. Recipient

im wondering about somthing

I am a recipient for an LVAD before I decide whether I'm going to do it or not I really wanna know about it and I have some questions here's the first question that comes to mind...... Will I have a pacemaker and defibrillator with my LVAD or will they take the pacemaker and defibrillator out and put the LVAD in?

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Ann G.

My husband had both the defibrillator and LVAD at the same time.

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Garicke R.

I was on my second defibrillator when I needed a Lvad.  They will keep it in because your heart still needs it. My shocked me a few times.  Had the lvad for 7 1/2 years.  They removed all when I had a transplant in 2020.

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Mike S.

They left my pacemaker and defibrillator in when they placed my LVAD. Your right ventricle is still working and necessary, so you still need a heartbeat.  If they gave you a pacemaker, it's still needed.

About your larger question of whether to get an LVAD, it's either that or death. They don't offer LVADS except to prolong your life. The installation is a big deal--open heart surgery, so they don't offer it lightly. Before offering mine, they gave me a battery of tests to be sure I didn't harbor some other problem that would kill me even if I had an LVAD.  They don't want to waste it. 

It's definitely been worth it for me. I've had six years of life I wouldn't have had without it. Wearing the gear and changing the driveline dressing is a bother,  but you get used to it and just go on. It's not a big deal once you get used to it. 

Go for it, Thomas.

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In reply to by Mike S.

Mercedes S.


yes I have the same. A lot of tests before surgery even my teeth. Meds stopped working and my left ventricular was extremely weak. Worried for my right side started getting affected. Thank God I past all tests. Got my Lvade on Nov. 2.  Feel so much better. Breathing and blood flow cleared mind. Can’t wait until they develop the wireless LVAD. There’s hope.

 

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Larry B.

You will keep both. Had my HM3 for over 4 yrs now and getting ready to get my fourth biV device in Apr. I was zapped by it twice while still recuperating n 5he hospital with my lvad. Was told that 5he biV and 5he lvad don’t play well together. Been shocked 9 more times since I got home... several times due to a v ach storm that resulted in another 10 days in 5he hospital where 5hey eventually did a cardiac ablation. The good news is haven’t had any problems with it over the last 3 years. It can fire if they don’t keep your potassium and pasig balnced, which was m case. Haven’t had to take either for the last 3 yrs.

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In reply to by Larry B.

Juanita P.

You were Zapped twice during hospital stay??? Well i would need to own that hospital, especially regarding potassium levels, chemical balances.  I'd say they need to get those balances right... I don't think being zapped by a Defib is a walk in the park by no stretch of the word.   And as far as both devices....sorry but they can't get it straight.  I don't have Vtach, the wanted to improve a weak heart/EF.....but the attorney is having a field day with this...

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Juanita P.

Ironically, I had the ICD implanted ll/4/16.  I was informed by the Medical profession, times 4 second opinions that my EF would improve with the ICD...Sorry to say it didn't, it got worse.   I actually pretty much died 2 1/2 months later, 2/16/17 while celebrating my youngest birthday party.  I had the out of body experience, and was blessed enough to get a sneak peak of Heaven.   That I know is real.  It was funny that some Dr's said the ICD would do the trick for the EF,  and the other half said pacer only.  LOL...Wow I was really confused...It appeared that none of them were consistent.  4 years later with both devices, I've really had enough...I've also been told by VARIOUS medical professionals of all walks informing that don't need both ICD and the pump.  Actually, was informed it was a health risk with both for infection and health for my heart.  One of my questions for the TOP Doctors when I go for regular appt.  Why do we need both? and to certainly be very clarifying.   I personally want it out, the ICD and pump...and will do my research on the necessity of this device and all of the outcomes, quantitative, qualitative.  With this being said, it seems that not one want to take responsibility of removing their "MISTAKES" if you will.  There are benefit factors and there are those that are totally unnecessary as well.  I have a few LVAD friends, that had the third lead on their ICD unhooked because the pump is doing all the work and heart has improved.  This is very QUESTIONABLE on a lot of accounts.   One way to get them unhooked is to sign a form releasing the doctors and hospitals responsibility.  I have an attorney, and believe I will go that route.  I have to be honest and have to be real.  Thankful though, however, the ICD has never shocked me even when near death.  Did I need this device? Unknown!!  Please check with your doctors, hold them accountable and to clarify all that is necessary for you to make a decision, etc.  This is not trial and error, this is our life, with numerous mechanical devices that will ultimately go bad.  Just like everything else.  Enough said, have a beautiful day everyone!

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Dick T.

I’ve had my pacemaker/defibrillator since 2016. When it was put in they told me that they couldn’t get the 3rd lead to stay in. When I got my LVAD in December of 2019 they told me that if the 3rd lead was hooked up they would undo it. So I have both. I’ve never been shocked by the defibrillator. 
I agree with what was said earlier. Living with an LVAD can be a pain in the ass but living without it is not a choice.  You do get used to it and figure out the best way to manage your hardware that works for your lifestyle. 

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In reply to by Dick T.

Juanita P.

Dick, all i can say is what a Cluster!!  Living with an LVAD is a PAIN IN THE ASS, AND IF YOU IMPROVE EF, CAN REQUEST "UNHOOK."  However, you would need the right medication to do that...not six years later, at the time.  I have spoken to a ton of LVAD patients, and its as thought they put them in and well this is as good as it gets....Ding ding ding, wrong awnser!! Don't let them bs you....Know your rights. 

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bill g.

I think that getting an LVAD  and what it does is a MIRACLE. My heart is now functioning like a normal heart. I could not be happier with the results.

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Kristin L.

Anyone receive Covid vaccination and suffer sudden prolonged loss of strength?

My husband received LVAD in July, discharged from inpatient rehab on 10/14, and did 8 weeks of in-home PT, OT & ST, then started outpatient rehab on Jan 7.

When he entered rehab on Jan 7 he was able to toddle (with supervision) without the use of his walker. He did very well as outpatient for a week, but then started "de-abiltizing" (therapists' language). It coincides with having received COVID vaccine #1 (which I mentioned to his doctors).

He's became so weak he can no longer support his own weight (or break his magnesium pills in half) and he began using a wheelchair in the house- which he never relied on -since discharge on 10/14.

Last Thursday he fell in the home while attempting an unsupervised transition and hit his head. He is fine, but doctors say it is unsafe for him to return home so he will be admitted to rehab as inpatient again. He was officially diagnosed with neuropathy aka weakness and numbness.

There's no medical reason for his loss of strength. He is doing very well with the heart pump, though he's had a couple of tachycardia episodes in the past 2 months. As you all know, the pump will never mitigate those. He needs a heart transplant but needs to be strong to be put on the list. So, we are stuck for the moment.

So anyone have a similar story of neuropathy, with or without vaccine?

Thanks.

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Michael S.

Got my LVAD last August. Doctors spent lots of time adjusting my pacemaker to work with the LVAD. Got zapped a couple of times while still in hospital when adjusting meds, it was more surprise than anything else. Like someone else said it’s really not a decision if you want to be around awhile. It’s either the LVAD or funeral arrangements. 

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In reply to by Michael S.

Juanita P.

I'm so sorry Michael but I beg to differ with you!  I respect your opinion, but then again it is all in the higher power's plans when were are gone from this earth.  We always have choices, may not like them, but we have them!  I mean they just landed a lunar space machine on "Mars" really and they can't figure out CHF????? Having a hard time with this.  

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Diane B.

I think there is some confusion about the purpose of all 3 devices. They are all there for different reasons but all related to Heart Failure and possible arrythmias which may not be an issue for all HF patients who receive an LVAD.   The defibrillator or ICD is there to save your life if you go into ventricular tachycardia and are not near a hospital or first responder who can "zap" you to get your heart back into rhythm. The pacemaker is what tells the heart muscle to beat. If you have had an AV node ablation that is successful for Atrial Fibrillation your "starter" in the heart (AV node) no longer works and pacemaker does it for you. You may have been Biventricular pacing (leads in both ventricles) to try to decrease the work on your heart and slow the progress of your HF. In that case MD may say you do not need pacemaker after LVAD.  Your doctor should be able to explain this to you. The LVAD is either a bridge to transplant or a destination therapy. In either case you would not generally be a candidate unless your heart failure was so significant that your quality of life and/or life itself was at risk.  My husband had both a pacemaker and defibrillator when he had had his emergency LVAD last summer. He still has both with LVAD but because of reoccurring VTach that seemed to be centered around scar tissue of L ventricular lead site from bipacing they turned off the L lead because LVAD was more effective for the heart failure. He still has periods of Vtach but has not been zapped since surgery.   I am not sure where the notion of an existing pacemaker/ICD causing possible infection comes from. It makes no sense to me to have them removed when LVAD done because that could be source of infection to have two wounds. If you are still uncomfortable and have time before decision being made, I would suggest you write down all of your questions and concerns and ask to speak to the VAD team to get your questions answered for your comfort of mind.  There is absolutely no question to the fact that this a monumental decision which will have a profound effect on you and your family whatever you decide. God bless.

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In reply to by Diane B.

Juanita P.

Hello Diane,

I'm gonna clear the air of where that notion came from of possible infection, a couple Doctors here locally in NJ.  I made the statement because they made the statement!!!!!   When you need to change the battery, which ever device, you cut the skin..a surgical procedure!!.The leads go to the heart correct???   I don't know about you but that seems like an opening for infection to me.  I have had my LVAD four years now and Biventricular/ICD, not happy camper, and can tell you that I was told "WAS A BRIDGE TO TRANSPLANT"  Not a DT....a DT was not even so much as mentioned, or I would have waved bye bye!!  See the DT was around few years now, they were getting final ok to call it that due to the lack of heart transplants and donors.  We only do about 3,000 a year and are certainly triaged.  I'm sorry, well no i'm not.   The  medical field, Dr's, hospitals, education, etc...are so off beat and INCONSISTENT.  I see four diff. doctors, they love my insurance and copay's, and all have something diff. to share.  I laugh, then I get very angry at the inconsistent, lack of knowledge with all of these devices.  See they have their own territorial practice, and that's exactly what it is PRACTICE!   We are the guinea pigs!  Some area hospitals have more knowledge than others due to the political aspect of it all.  Shouldn't they all be equal in saving lives?   Absolutely....Should all the hospitals, staff have the quality of education for these devices?  Yes, but they don't.   All I can say to the new comers, carry that device a couple of years, workout etc...and then tell me how your neck, back, and shoulders feel.  It takes a huge toll on your body, especially if you have GI bleeds due to anemia and GOOD OLE BLOOD THINNERS.  Prior to that, I had no problems but now the device has created problems.  The medical profession can SUGARCOAT ALL THEY WANT, but the patient's and caregivers know the real deal.   If I only knew then what I know today!! 

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In reply to by Juanita P.

Ann G.

Juanita you certainly hit the nail on the head!  My husband developed many of the symptoms you discussed.  We were always waiting for the “other shoe” to drop! And each of the six doctors he would see always had a different idea of how to do things.  He become a pin cushion with all the blood work and then transfusion due to bleds.  Never really found where he was bleeding! his death was brought on by low thyroid, side effect of a med,

high ammonia levels and low hemoglobin.  Hospitalized for two weeks and due to Covid, I was not able to visit until death was eminent.

Stay well!

Ann

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In reply to by Ann G.

Juanita P.

So sorry to hear that Ann!  I know how much pain you both went through., and them some!  It is not all I. A cookie cutter box.  We sacrifice a lot. When I get angry whenever year I have to go to the hospital for a transfusion because basically as I was told the device made me anemic and with the blood thinner the device is notorious for G.I. bleed‘s which is something I never had before the device ever I hate hospitals I hate being in I’m tired of being stuck I told the medical profession my medical team I was not gonna be the guinea pig any longer.. I work for 10 years with a 10 EF as a probation officer for a special caseload I did just as well as anybody that did not add dilated myopathy the other question I would have for all he’s are you on medication to improve your heart function or do they just stick the device in and say see you later. Or? Because of right now I am on a baby dose of Coreg that’s it my heart will never improve to where it should be where they can unhook it which should be 40 yes I am at 20/25 maybe. I told them my goal is not to get another heart but to have this device explanted with healing, but it will never go up with the baby does some Coreg and no other med to enhance!  Best of luck to you Ann, And I am so sorry in the two-year span you had to go through such a hard time and loss.   I will not let them do that to me over and over again I will put it in the hands of God move forward.   If he wants me home,  he basically will take me. Blessings be with you while giving you peace!  

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In reply to by Juanita P.

Diane B.

Hi Juanita

It sure sounds like you have had a go of it. When you talk about 4 doctors not sure what you mean? Are you not being followed by a VAD center with a specific cardiologist that is your go to person? Perhaps this was not a life or death decision for you like it is for most other recipients and now you regret your decision. Do you have any positive outcomes from this procedure or have all of your experiences been negative? I have read many of your posts over the last couple of months and can certainly see you are very bitter about your situation which must make your coping even more difficult.There is no question that for the recipient and the caregiver life will change, habits will change and there is a constant concern for complications. One of the things that we have learned over the months is that there will be times where everything seems to out of your control and this pandemic has certainly affected all of us in ways we probably do not even understand yet. If we have learned nothing else, it is to take one day at a time, try not to dwell on the past, look at the gains in weeks rather than day periods and know that what we share is borrowed time which would have never existed without the LVAD and the support of our whole team including doctors, nurses, family and friends. I wish you luck on your journey.  Diane

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In reply to by Diane B.

Juanita P.

Hello Diane, 

 

Very nicely put, I might add.  I have to be honest and usually blunt.  Yes it has taken a real toll on me.  Bitter, absolutely!!  I don't see the positive, but that is me.  I have given up my whole life and career, which I worked very hard to achieve through the years, and loved my job and clients.  Leaving this position four years ago without so much as a goodbye, but a wave to my coworkers and "I'll see you all tomorrow."  Tomorrow for coworkers, clients, and in the office never came; however, I woke up in the hospital in PA days later.     Personally, my heart should never have gotten to this level, not even close.  I was over looked and treated non-aggressively from a outpatient cardiologist.  When I state four Dr's, I am referring to my LVAD Dr., which does switch from time to time, my outpatient cardiologist, which they tell me to continue seeing, my Dr. that checks the ICD/Biventricular ( Dr. who implanted it) and primary care Dr.  In addition, there are many clinical family members, one my daughter a paramedic in the family that also discuss various things regarding the devices, treatment, etc.  In one of my post, I believe I did mention I had a sneak peak of Heaven and out of body experience.  Yes I was on my way out and felt no pain, but had beautiful peace and a view that was breathtaking.  I had a 5 EF at the time.  That date was 2/16/17.  Actually,  anniversary of near death was yesterday!!  I wish I could have a better attitude about this, but I can't give what I don't have.  We are all on borrowed time, trust me with or without a device.  The pandemic, no didn't help at all.  I don't think it was positive for anyone.  I Was isolated almost totally alone daily, not even the gym to attend.  Thank God I had my dog.  I had a choice to make with the LVAD four years ago; however, It was a clouded choice two weeks later.  My head was far from clear and thinking rather distorted.  I said yes to something four (4) years ago, that today would not have done.  And again, that is for me!!  I try not to dwell on the past because it will eat me alive, but it does creep into the mindset.  As I have mentioned to family, friends, etc.  the medical field is a helping field; however, is also a BUSINESS!  Bottom line business.  In one year, no matter if hospitalized or seen outpatient times two...I get statements the cost is astounding $395,000.  My God, what are they doing that cost so much?? Even if they make a phone call, I get the statements, $450.00 whether they talk or leave a voicemail.  Wow, now that is a big business!! And, I might add only one client, me.  Think about all the others.  What a line up.   My chief complaint and have expressed to them, the lack of medication management to help improve function of the heart and hopefully raise the EF.  I have expressed my goal to have unhooked, they are very much aware...All of my Doctors!  But, to no avail.  I am on a single baby does of Coreg!  The smallest you can get and a blood thinner.  Now i'm thrown.  The Ejection fraction rate of my heart will never improve with that type of treatment, so the implant will remain.  Right now I'm at a 20/25% EF.   That makes me seriously angry.  I do not want a heart transplant nor am I an eligible candidate for a transplant...My antibodies are 99%, it is very hard to top that.  Would be rejection after rejection.  However, we have discussed the antibodies are so high due to the metal in my body...i.e. ICD and LVAD.  They can try to desensitize till the cows come home, but will never stay that way.  One of their transplant Drs informed me that the cells remember and come back to fight,  but he pushed for a transplant.  Wow.  That would entail pretty much making me a very sick woman, when I am presently a very very healthy woman with a weak heart.  The inconsistency of all the dialogue between Dr's is very very irritating and unimpressive.  That is my story.  I believe in support and counseling, trust me.  I believe in looking at the glass half full, but right now this whole four (4) year journey has made me a very different person who rarely smiles, when I used to smile all the time.  A shame, the LVAD is not for all that is for sure!  When I was on my way out, I told my daughter's I love them dearly, but at that time was so peaceful, tranquil, and beautiful i had no knowledge of a family or a home here on Earth.  It must have been Heaven.  For some reason, God did not want me at that time.  If I had left this earth, I would never have known the wiser!  But today, sleep with one eye open worrying about clots, INR levels, alarms, battery time, etc.  Very unsettling to say the least.  

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In reply to by Juanita P.

Ann G.

Juanita it apparently is good for some and not others.  Not good for you and my husband didn’t respond well either.

I hope it turns around for you

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In reply to by Ann G.

Juanita P.

Thank you Ann.  Things will workout , I will not let it ride.  I refuse to take it all for face value his questions to be asked questions to be answered and various other interventions that have not and I repeat not been used. To me that is totally unacceptable.

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John E.

I’ve had my LVAD for 8 months today and seem to be adapting ok. Outside of wishing batteries weren’t so heavy, my batteries seem to get rather hot during the day. Anyone else experiencing the heat 

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In reply to by John E.

Juanita P.

Not so much battery heat, but heat on the controller I noticed if I took it out a little extra during the day it would cool down immediately if your batteries are heating up, you do want to tell the Team..   I do not recall batteries ever getting warm just saying get it checked out every year those batteries are to be changed and you will get new ones.

.  

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In reply to by Juanita P.

Juanita P.


also make sure your team does an upgrade on your controller because they have the upgrades every year and if they don’t upgrade the hardware then you will have alarms so make sure you mention what is the upgrade done? Just for all of your FYI. I had three controllers in one year the alarms kept going off they couldn’t figure out why until they called Abbet the main company and spoke to two of the reps the issue was they didn’t do the hardware update so it produced alarms!!

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In reply to by ron l.

Juanita P.

They probably put on hold due to Abbott signing a $750 million dollar contract for Covid PPE supplies, etc....so the LVAD will be placed on huge hold...

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In reply to by Juanita P.

ron l.

Word is Leviticus is in the process of putting together a clinical trial.  Last year my Cardiologist at Cedars told me about this first successful implant.

‘With Abbott Labs and Medtronic, and their vast resources, receiving FDA approval to fast track the development of a fully implantable pump, is encouraging. Here’s hoping!

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Juanita P.

My ICD/defib was put in first and then 2 1/2 months later the LVAD.... as I almost died.... Please, please get 2nd, 3rd., opinion with TOP Notch hospital and doctors.  Not necessarily need both!!!

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Juanita P.

Some ppl do get well, a higher EF and eventually have device explanted...question::::: how many of u take several meds and how many take one baby dose?  It will Be interesting to hear..