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Michael K. Prospective Patient

Don’t want it !

 Am I selfish if I don’t want this LVAd  shit   I can not find ANY body to talk to.  I jus don’t want it 

michael_k1964@aol.com

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Shafiq r.

My husband didn't want it either but it was that or palliation. Was on a balloon pump and getting worse. They could take it out and he would die very quickly or palliation on balloon pump and he could not get out of bed with it. He had it 7 weeks ago. He was back at work in under 3 weeks-not advised but that is him. He wasn't suitable for transplantation due to his pulmonary pressure being through the roof. I guess you have to weigh up your options. I don't think anyone wants an LVAD.
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Pam J.

Hello Michael. My husband has had an LVAD for 1 1/2 years and lives a normal active life, other than swimming. I’d be happy to read your concerns and see if he or I can be of any help to you! 

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In reply to by Pam J.

Juanita P.

Hello Michael, I'm right with you.  I don't want it either.  Actually,  i've had the LVAD almost 3 years now and I'm still adjusting.  The first year was horrible, emotionally and physically.  I'm a very active person, gym, weights etc.  And your right there is no one to talk to that understands but LVAD ppl.  I don't know how long you've had yours, but I would love to hear your concerns and give my experience with the VAD for added support.  It is a 360 turn in life for sure, but "life."  Iwas told mine would be temp due to transplantation;however, the hospital I was with initially, not with them any longer, lied to me did a million dollar work up, just to tell me in 8 months was not eligible due to high antibodies and the new regs changing.  BOY THEY DID A # ON ME.   Needless to say, I left and found a very very good hospital not far from the prior.  There have been several bumps in my life, and others could certainly share as well, but there is a positive side too.  Hang in there and do not hesitate to share, ask questions.  Presently the hardest thing is sore shoulders and neck carrying the bag.  I still work out, do weights, cardio, and "abs" yes abs.  Also tan, a love of mine...I have no problems to date.  I look at it this way, I paid for the device, I pay for the treatment, and is totally my life.  Enough said.  I will not stop living or be told what do to a degree.   I will follow blood thinners, change with dressings, etc...I keep good care of my body anyway.  You have to be your own advocate, and what is not setting well, well surely express that.  There are a lot of changes, but you can get through.  Hang in there.. 

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In reply to by Pam J.

Juanita P.

Hello Michael, I'm right with you.  I don't want it either.  Actually,  i've had the LVAD almost 3 years now and I'm still adjusting.  The first year was horrible, emotionally and physically.  I'm a very active person, gym, weights etc.  And your right there is no one to talk to that understands but LVAD ppl.  I don't know how long you've had yours, but I would love to hear your concerns and give my experience with the VAD for added support.  It is a 360 turn in life for sure, but "life."  Iwas told mine would be temp due to transplantation;however, the hospital I was with initially, not with them any longer, lied to me did a million dollar work up, just to tell me in 8 months was not eligible due to high antibodies and the new regs changing.  BOY THEY DID A # ON ME.   Needless to say, I left and found a very very good hospital not far from the prior.  There have been several bumps in my life, and others could certainly share as well, but there is a positive side too.  Hang in there and do not hesitate to share, ask questions.  Presently the hardest thing is sore shoulders and neck carrying the bag.  I still work out, do weights, cardio, and "abs" yes abs.  Also tan, a love of mine...I have no problems to date.  I look at it this way, I paid for the device, I pay for the treatment, and is totally my life.  Enough said.  I will not stop living or be told what do to a degree.   I will follow blood thinners, change with dressings, etc...I keep good care of my body anyway.  You have to be your own advocate, and what is not setting well, well surely express that.  There are a lot of changes, but you can get through.  Hang in there.. 

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In reply to by Pam J.

Juanita P.

Hello Michael, I'm right with you.  I don't want it either.  Actually,  i've had the LVAD almost 3 years now and I'm still adjusting.  The first year was horrible, emotionally and physically.  I'm a very active person, gym, weights etc.  And your right there is no one to talk to that understands but LVAD ppl.  I don't know how long you've had yours, but I would love to hear your concerns and give my experience with the VAD for added support.  It is a 360 turn in life for sure, but "life."  Iwas told mine would be temp due to transplantation;however, the hospital I was with initially, not with them any longer, lied to me did a million dollar work up, just to tell me in 8 months was not eligible due to high antibodies and the new regs changing.  BOY THEY DID A # ON ME.   Needless to say, I left and found a very very good hospital not far from the prior.  There have been several bumps in my life, and others could certainly share as well, but there is a positive side too.  Hang in there and do not hesitate to share, ask questions.  Presently the hardest thing is sore shoulders and neck carrying the bag.  I still work out, do weights, cardio, and "abs" yes abs.  Also tan, a love of mine...I have no problems to date.  I look at it this way, I paid for the device, I pay for the treatment, and is totally my life.  Enough said.  I will not stop living or be told what do to a degree.   I will follow blood thinners, change with dressings, etc...I keep good care of my body anyway.  You have to be your own advocate, and what is not setting well, well surely express that.  There are a lot of changes, but you can get through.  Hang in there.. 

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In reply to by Juanita P.

Michael K.

Hello.  I don’t have it yet. Cardiologist said when my heart is stronger . Now this is where I’m all screwed up!! Lol my deductible is payed up  and the only reason I may- I didn’t say I will.   Reason is simple.  It’s payed up .. I can’t  see living with a wire coming outa my body .  Stupid, huh.  I don’t want my daughter to take care of her father for the rest of her life.  If I can do what I have been doin my whole life I may consider it. And that is taking care of myself. Paying my own way.       Otherwise. I don’t want it.   I’m sorry. I’m still re-living ,  being told about the heart failure, and I’m a very sick person.  I feel good.  I walk 5 miles a day.  And I work    Blah blah blah.  Sorry.    Thanks.   Gotta go

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Brian F.

Michael,

I can empathize with your feeling.  I wrestled with it as well, death even sat by my bed for the night as I wrestled with the decision.  I was so tired, both physically and emotionally. I just wanted to feel better, not just dragging myself through every day.  The drugs they had given me made me feel more alive than I had in months maybe years.  However, I soon discovered that the feeling was only going to stay if I stayed in the medication....in the hospital.

i did not come to the decision to have the LVAD implanted but I have never regretted the decision either.  I have my own reasons as I’m sure you do.  Its a very personal decision that many will question and debate for evermore but it is still YOUR decision.  As I mentioned, death sat by my bedside patiently awaiting my decision.  He wasn’t in a hurry, he was there for me and was very patient.  Once my decision was made he left as quickly as he came and I was left to wrestle with my decision on my own.  

You will have to make the decision but I would remind you to consider all of your options.  It’s not perfect nor a panacea but it can give you a better quality of life than what has brought to this place.  

Just a few thoughts, best of luck with your decision.

 

Brian

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Tony E.

We are all built a little differently when it comes to handling shit like this. I can't tell you how to do that. I can tell you that it is a fight keep it or a fight to lose it. Pick your battle make it a good fight. Win or lose just keep following thru. That is really all the control we have.

Tony

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Larry B.

I didn’t want it but the alternatives sucked and I’m not in a real hurry to leave this life. Have had mine for 3 years now and other than swimming and taking a bath I haven’t found anything I can’t do that I did before! I shower every morning. I play golf a couple of times a week. I do all my regular activities. Today I’ve already showered, mowed the yard and washed my car. I’m not the type of person to pity myself and I refuse to lay on the couch waiting for the grim reaper. It gets better. Give it a chance.

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Kay B.

Having a LVAD has its struggles but is far better than dying which was my situation 2 years ago. I chose the LVAD. Let me encourage you to get involved with a LVAD Support Group. It's a wonderful way to interact with others in the same situation. It has been a valuable & cherished experience for me. Don't have one in your area...start one!! Our group has a Facebook page - LVAD Support Group of NW Louisiana / NE Texas. If you have any questions, you can contact us at lvadgroup.info@gmail.com. Blessings on you!!

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Stan C.

Michael,

Have you contacted your LVAD clinic for someone to talk to?  I am an Ambassador for my clinic and they call me on occasion when someone is contemplating an LVAD and want an actual patient to talk to.

I myself really did not have a decision.  My previous cardiologist did not do them and would not refer me.  My primary physician finally got me referred to the right people as I was not sure I could even make it to another Christmas.  I have had mine since August 2017.  For me, I am thankful I am alive, enjoying life again, and able to help others when I can.  It is still a pain in the @ss at times and I can't always do what I want but I'm alive and enjoying all that I can.

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Debra K.

Hey y'all...I've had my lvad since April Fools Day 2016. This is no joke! Since implant I've detested this. The cord, the weight of the batteries, not being able to leave the house without equipment crippling the shit out of my neck and shoulders.  A year after implant my right knee started hurting. Alas, NO DOCTOR  will even entertain the thought of repairing my breaking body due to this contraption that keeps my heart beating. That's all it's doing. The physical pain this causes is too great.  My pain mgmt dr has me on Butrans patch and oxycodone. Without the oxy's, I'm not able to do much. Because I can't carry the equipment I'm confined to the house. Can only reach the front porch to outside. I don't go anywhere or do anything outside  the house unless its absolutely necessary. Then it's only for a short time I'm able to carry this 10 lbs of pain! Yes...I feel your pain. If I had it to do over...I definitely would NOT. This is not quality of life by no means! Its Hell on earth. 

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In reply to by Debra K.

Brian F.

Have you tried a fanny pack to relieve the shoulder stress?  I took suffered from the strain of the bag.  I saw a patient put his controllers and batteries in a fanny pack that he wore.  It was hard to tell he had an LVAD.

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In reply to by Brian F.

Debra K.

LOL Brian👍

Thanks bunches for the thought. I've become quite familiar with the items that are out there🤯Believe you me! I alter my clothes so I can TRY to hide/carry the hardware is quite a different issue😧 

You c Brian... over the last four years, I have tried it all. It comes down to the weight. Four years after implant I have run out of gas. My physical self is broken. I'm tired.

 

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In reply to by Brian F.

Anthony V.

im a 58 year old plumber I own my own business I've had my vadd since April 2017 I work every day but I wear a lvadd vest which holds my controller and batteries its much more comfortable than the bag or a fanny pack and a back pack I got it on line from lvadd wear
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Susanna B.

You didn´t make it clear, whether you are on a THX list or not and therefore we do not know if you need the LVAD for bridge-to-transplant or as destination therapy. Commenting on your post makes that a bit difficult.

Hubby is a GP himself and has had his HM II since August 2015 as destination therapy. He had the choice to leave this world or to embrace a new life with LVAD. Yes, you are dependable on this machine, and it is somewhat restricting, but nothing of that sort you won´t be able to manage, I assure you. And I´m pretty sure that there is at least one person, who cares about you and wants you to be in his/her life for much longer.

The first weeks after surgery and especially the first weeks at home it freakd us both out like hell, but we accustomed to it , learned to live with it (yes, your partner has to learn it , too !) and I can tell you that : each and every day together is a win-win for both of us and we grew even closer together than before.

You will not know exactly, unless you try it. Have faith in yourself, have faith in what you are able to achieve. Best of luck!

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Mark H.

i has my lead for a year and a half. The right side of my heart was so bad when I got the LVAD. That I still couldn’t soo hardly  anything for quite some time. Also I was afraid if I did anything I would damage the cord or catch on something. It was a constant worry. I had my heart transplant April fools day 2019. 5 1/2 months ago. I am doing and feelso much better. If you are a bridge to transplant patient just hang in there. JUST HANG iN THERE! I am so glad I did. Also don’t give up on finding other options for carrying the equipment. Nothing will be ideal. But if you don’t give up , I promise you will find something that will work. And not cause you pain. ( cargo pants worked for me. ) they looked funny, were uncomfortable, and felt like they were going to fall down ( never did) . But made it where I could get the stress off my shoulders. I will pray for you , good luck! 

Mark

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Michael K.

To be   honest.  If I can keep working . I’m a truck driver. I started driving back in ‘84  I would consider it.  I’m not one to have someone take care of me      

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In reply to by Michael K.

Debra K.

Michael, 

If you have a career and can still work...that's a wonderful thing. I however have been disabled since 2008. I had a great career but was terminated after 12 yrs due to my health. If I hadn't met my husband in 2010, I'd have nothing to live for. I'm definitely grateful for him. I've had the last 30 years of one health issue after another. I'm looking forward to the end of my days. 

 

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In reply to by Michael K.

Susanna B.

is a great motivation indeed.  As I wrote previously, hubby ´s a GP and we ran a very busy surgery until he suddenly out of nowhere suffered a severe heart attack, which destroyed most of his left heart tissue. He managed himself from clinical death to going back to work again, because he -like you- loves what he does and he was very much missed by his patients. That was a great motivator. He worked full time until last year and retired at the age of 70- only to reopen a little private surgery in our house , where he sees a few patients per week. He cannot live without his job.

Being a truck driver is a -sometimes certainly stressfull- fulltime job too. Don´t expect to be back behind the wheel within two weeks. It will take two-three months until your body will adjust to the different flows. Give yourself enough time after the oparation to recover fully and start muscle and cardiac training RIGHT NOW with a gym pro, who is specialised in training patients with cardiac problems . Going into this operation in the best possible shape and state of health is a mayor key for recovery. And hey- it isn´t a sign of weakness if someone takes care of you. You´re a human, not a robot.

Just imagine yourself the first day you grab your wheel again, announcing "Mike-two-batteries is back on the track, folks !" ;-)))

Good luck and God bless

Susanna

 

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Reiss T.

I was for me an easy decision because for me to stay alive it was the only option I had. Three days ago on September 20th, I celebrated the ninth anniversary of my being implanted with an LVAD; my re-birthday as we call it. I have much to be grateful for including my family, friends, faith,  my medical team and my generally good health.

My medical team believes that my LVAD allowed me to survive a near fatal illness last year that was not LVAD related but caused by sepsis from a perforated colon during a "routine" procedure. Although I don't always get around as well as I would like, I almost always feel good and at age 79 have few limitations. An LVAD is not for everyone but for me it has been nothing short of a miracle.

Life is good and every day is a gift. Seeing my grand kids grow is a great motivator and so is having a sense of purpose. For me the recovery from surgery at age 70 was without complication and surprisingly fast. I took responsibility for my own attitude and put the rest in God's hands. It worked for me. 

 

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Gary S.

Hi Mike - I know that there is a wide range of us - some who have many health issues and some whose issues are limited to cardiomyopathy- Please share what bugs you most about your lvad- if I don’t know how to help you I probably know someone who can. Wish you well - and very sorry for your troubles - Gary S

Gary with lvad undervest keeps weight of batteries off the shoulders.
This undervest keeps weight of batteries off your shoulders- I wear this under my golf shirts all day.

 

this is similar to what my husband has. He got pockets sewn into the side of his under vests. He has a clip on his jean belt for controller. The only thing is the drive line is visible so I am going to figure out a way to Velcro it to his vest to pull it up. Only 6 weeks post vad so lots experimenting to do. He doesn't like the cables going to the toilet but his main complaint is not being able to get comfy at night or lie on his tummy. We don't actually live together (that's another story). He says can only lye on one side. He likes to lay on his stomach. Any ideas

this is similar to what my husband has. He got pockets sewn into the side of his under vests. He has a clip on his jean belt for controller. The only thing is the drive line is visible so I am going to figure out a way to Velcro it to his vest to pull it up. Only 6 weeks post vad so lots experimenting to do. He doesn't like the cables going to the toilet but his main complaint is not being able to get comfy at night or lie on his tummy. We don't actually live together (that's another story). He says can only lye on one side. He likes to lay on his stomach. Any ideas

this is similar to what my husband has. He got pockets sewn into the side of his under vests. He has a clip on his jean belt for controller. The only thing is the drive line is visible so I am going to figure out a way to Velcro it to his vest to pull it up. Only 6 weeks post vad so lots experimenting to do. He doesn't like the cables going to the toilet but his main complaint is not being able to get comfy at night or lie on his tummy. We don't actually live together (that's another story). He says can only lye on one side. He likes to lay on his stomach. Any ideas

this is similar to what my husband has. He got pockets sewn into the side of his under vests. He has a clip on his jean belt for controller. The only thing is the drive line is visible so I am going to figure out a way to Velcro it to his vest to pull it up. Only 6 weeks post vad so lots experimenting to do. He doesn't like the cables going to the toilet but his main complaint is not being able to get comfy at night or lie on his tummy. We don't actually live together (that's another story). He says can only lye on one side. He likes to lay on his stomach. Any ideas
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In reply to by Gary S.

Michael K.

Hey man.  I recently quit smoking and thought I had COPD pretty severely I had all the symptoms couldn’t sleep good night coughing . Until one morning I woke up to go to work and my feet were swelled up three times normal size.Daughter convinced me to go to the hospital to where they automatically. Admitted me. It blew my mind when they said I had a heart failure, if I knew about it. I spent seven days at that hospital then they sent me to Emory.  in Atlanta, ga . My heart is too week, they say. Next appointment is 2 weeks and then I find out if my world gets all screwed up.  If it wasn’t for my grand daughter.   I’d say screw it.  

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Shafiq r.

My husband runs a indian take-away. He got dropped of from hospital 2 and half weeks post LVAD at 3pm and was in his shop by 4 pm. I know of another person who has had an LVAD and works as a Chef and had it for 7 years. In Uk your not allowed to drive for 6 months if you have an LVAD then after that its okay.
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Reiss T.

Michael, my life was slipping away until I was implanted with a HeartMate II nine years ago. The nine years of additional life has been good to me, and yes, grand kids are a big part of my motivation. I survived childhood illnesses, a year of combat as a Marine in Vietnam, a major heart attack in 1995, and a near fatal acute respiratory distress a year ago. I'm very happy to still be here. Family, friends and faith have kept me going. People tell me I'm here because I still have work to do and because God isn't finished with me yet. This is my number in case you would like to call. 

Reiss Tatum                        904-254-8561

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Brian F.

 

 

Your experience sounds much like mine.  I couldn’t understand why I couldn’t sleep, coughing all night long.  Same thing happened, i was holding my first grandchild, she was only 3 weeks old when I looked at my ankles.  They looked like elephant legs, went to the hospital that afternoon.  They admitted me and did a battery of tests and procedures.  After about a week they started talking about LVAD, I was like WTF?  Heart failure, that’s not me.  It was a difficult decision for me as I was just so tired of feeling like crap.  I was ready to go, I had accepted it.  Death sounded pretty good, then I had a change of heart.....literally.  It sounds weird but this guy showed up at my bedside one night while I was all alone and said I’m here to take you away from all this.  It was not scary or ominous, he said he was in no hurry as he was there for me and if I wasn’t ready he had plenty of other places to be.  We talked for a while and I said I think I  want to stay and see what this LVAD thing is all about.  He said ok and he disappeared as quickly as he appeared.  That was almost 4 years ago, I now have 5 new grandchildren and I want to be here for all of them.  I don’t want to miss anything.  Post LVAD surgery was hard and I had to adjust to a new way of life.  Swimming or baths are the only thing I couldn’t do.  Eventually I did everything i used to do with relative ease.  It’s a journey not a sprint for sure but life is good.  Best of luck to you in your decision.

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MIke S.

Hi, Mike. For most of us and perhaps all of us, it's a decision to get the LVAD or to die. They done't offer you an LVAD unless you will die without it. Whether it's to wait for a transplant or for the rest of your life, the chances are you will die without it. So the question is whether the bother of getting an LVAD is worth living for. 

None of us like it. It's a big operation that can take weeks to recover from, and then you have to carry all this gear around. But it keeps you alive. Unless you have problems with it, you will still be able to drive a truck, and you'll get to see your granddaughter graduate high school. I've had my LVAD for four years now, and have gotten use to living with it. Like anything else in life, it's just a matter of making the best adjustments you can, then accepting it. If you are tired of living and look forward to death, then forget the LVAD and all the trouble that goes with it. It's a battle to get one, so only do it if your life is worth fighting for. 

 

 

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Fred D.

Hi- 

when they talk to you and use the words “heart failure “ then transplant” I could not believe it. I thought it was my lungs from 40 years ( really 39 and 7 months) tractor dust.

but no heart failure! the LVAD was the recommendation.

i left hospital went home to make decision. They thought I would be dead that weekend.

but LVAD was a bigggg decision. Long story short, it’s your decision. I made mine and it was tough in beginning but now I know it was right one.

i said no to transplant list. But got bad and recovered.

my God & family help you in your choice.

Tackroom Fred

 

 

 

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mike d.

well mike i am a mike too. this alvad thing is a lot to considder this time. and its a good alternative to dying too.  but who am i to say? your doctor has a lot of testing to refer to and tell him you want to see the results no bull shit! find out about your ejacking fraction,this is the amount of blow by your heart has going on with in it all ready. than see, or review what kind of help you can get on your own.  you know bandager, batteries, chargers, doc calls, rides to the alvad clinic, etc. step back a couple of paces ond get your breath, this is your time not a 2 minute drill. fuck that. its still you choice to make i hope you have look at other options and not gotten stuck on this one option. good luck and as thay say    gods speed.

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BROOKE L.

Mike,

The LVAD team at Emory is fantastic.  The doctors, LVAD coordinators (Nurses and NPs), and VAD engineers are smart, talented, caring people.  They also have a support group that meets every other month which is very helpful.

My husband was implanted about 11 months ago.  The first two or three months are definitely tough recovering from major heart surgery and getting used to new procedures, but it gets easier each week.  A physical and occupational therapist came to our house during the first 2 months.  Then my husband went to Cardiac Rehab at St. Joes which really helped regain his strength and stamina.  He is working full time, can walk 6 miles, and we are traveling internationally.

We wish you all the best.

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Michael K.

I just wanted to say thank you to everyone who replied .   Any one from ga?  Im staying with my daughter in north ga. I work in stone mtn -Atlanta  Ga  actually based out of tucker. I’m a over the road TRUCK DRIVER and proud to say . Any one willing to meet and talk in person.