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Stacey P. Prospective Patient

Not a candidate for an Lvad

I was disappointed to hear from my doctor that right now I'm not a candidate for an LVAD. I didn't know until my doctor informed us that your heart has to be enlarged and you have to have a certain Ejection fraction in order to get an LVAD. Right now my heart isn't the size and my ejection fraction is 41% which is too high to get an LVAD. I had a right and left heart catherization done last year and during the catherization they found that I just had systolic heart failure. This year I had a right heart catherization done on March 29th and they found that I now have systolic and dystolic heart failure. I have high pressures in my heart which are also causing me to have shortness of breath with exercise and doing normal every day activities and while sitting. It was very disappointing to find out that I can't have LVAD and they I can't start the pretransplant process either because of my ejection fraction and the size of my heart.
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Kevin H.

You should be happy you don't need a lvad. 41is a good number. I didn't get a lvad until I had very little time left to live. I had two stents put in and went 15 years before I needed a lvad. It is not easy living with this.
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In reply to by Kevin H.

Stacey P.

I don't feel lucky because I have to deal with shortness of breath all the time except for when I'm lying down. I use to be very active. I went hiking and I walked 2 miles at a 3.7 miles per hour pace every day and now I can't walk that pace and I can't walk that far. I've been in heart failure for 11 years. I miss being active and if it wasn't for the shortness of breath I would still be very active. I can't do the cooking or cleaning that I use to do. I whole life has changed.
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Dean F.

Sorry to hear that you aren't able to have the LVAD. I had a 10% ejection fraction when I was diagnosed in 2011. I was treated with medication and had a pacemaker/defibrillator put in. My Ejection fraction got up to 19%. I was able to continue working full time until November 2017. That's when OSU saved my life. I had taken a turn for the worst. There are so many things they can do now. Keep the faith and never give up hope.
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In reply to by Dean F.

Stacey P.

It was really hard to hear that my heart wasn't large enough and my ejection fraction wasn't low enough in order to have an Lvad put in. The shortness of breath is hard to put up with. It has totally changed my life and not for the better. I'm trying really hard to keep the faith and hope that things don't get bad really quickly. Do you have an LVad and which one?
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Veronica C.

I’m sorry to hear you didn’t get the outcome you hoped for. Im new to the forum, so I don’t know if you’ve already addressed this. Have you sought another opinion? What medications have you tried? We were surprised ourselves with the process of receiving one or getting on the transplant list. You’re living life and one day EVERYTHING changes. It’s not what we expect to happen. I’ve seen how the shortness of breath can put a damper on day to day activities and it’s truly heartbreaking to watch. I wish you all the best and will keep praying that things go better for u, soon.
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In reply to by Veronica C.

Stacey P.

I have not sought a second opionion because right now we are happy with the cardiologist I am seeing at the Cleveland Clinic. The medications I take are Lasix, Toprol XL which is a beta blocker, Eliquis and Cozaar which is a Angiotesin Receptor blocker. Unfortunately my heart isn't enlarged and my ejection fraction isn't low enough to have an LVad put in and unfortunately my ejection fraction isn't low enough to start the pretransplant work up to get listed for a transplant. I was told by my cardiologist that there isn't anything more they can do for me at this time. It's kind of a waiting game to see how long it takes for my heart failure to get worse.
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Stacey P.

I have not sought a second opinion. The medications I'm on are Toprol XL which is a beta blocker and Cozaar which is an Angiotesin Receptor Blocker. I'm also on Lasix and Eliquis. Unfortunately there is nothing more they can do for me with medication. Unforunately my heart isn't enlarged and my ejection fraction isn't low enough to have an LVAd put in and because the ejection fraction isn't low enough I can't start the pretransplant testing and get listed for a transplant. Right now I have a waiting game until my heart failure gets worse.
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In reply to by Stacey P.

ron l.

Hi Stacey.  Seems I have read that one of the side effects of Eliquis is shortness of breath. And with other medications as well.  Cheers!

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Veronica C.

Stacey, I wish I had the answers to this complex disease and a way to make each and every person battling this, healthy again. This disease completely changes every aspect of the patient’s life, the caregiver life, and the way everyone lives day to day. A lot of changes all at once. From the research I’ve done, the Cleveland Clinic is one of the best in the world for HF. I believe you’re in great hands and that the experts are doing exactly what they can to be based on your progression. I understand the changes are very difficult to deal with. I see it everyday in my husband. I don’t want to tell you how to feel, by any means, I pray one day you’ll see that you’re extremely fortunate that your heart has held up as well as it has. Giving up things we love because we physically cannot do them, is very frustrating. Maybe you can find other things you enjoy or other ways of doing the things you’ve always done? My husband just turned 40 in December and February 21st, he was diagnosed with advanced heart failure. He ejection fraction was only at 15%. He spent the next month in 3 different hospitals. At one point, he was basically unresponsive and I didn’t think he would be coming home. He’s finally home but his quality of life isn’t good and he too still has to wait for the LVAD. He’s pretty much bed ridden. I’ve seen in his case with HF and having family members go through different medical issues, the waiting is the hardest part. I’m not sure if that’s the case with you but I can imagine your mind wonders and questions if this is what the rest of your life is going to be? But I truly believe the Cleveland Clinic is and will do everything they possibly can for you. Unfortunately it never seems quick enough for those living with this. I know it’s hard but try to have faith and know there’s a family in Michigan that’s praying for you too. God bless! ❤️
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In reply to by Veronica C.

Stacey P.

I don't understand why your husband is having to wait to get an Lvad if he has a 15% ejection fraction. Is your husband on a transplant list? What hospital are you going to? It's been pretty hard trying to be patient and knowing that right now there isn't anything more the doctors can do for me until I get worse. Your husband is just two years older than me. Nobody ever sat down and told us that I would develop Cardiomyopathy and then eventually need a heart transplant. Unfortunately, when it comes to getting a transplant. I want one but I also think about the negative aspects of getting one and I don't like knowing that at anytime I could reject the new heart. They are coming out with new technology but it won't be ready for many years. They are trying to come out with technology that would make it so they could 3-D print a heart for you using your own cells. I wish they already had that ready now instead of years down the road. There are times when I think about just living with an LVad if I ever get to the point where I can have one. Stacey Potter
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Olivia M.

Need help...My husband has an LVAD. Recently we started looking at putting our affairs in order and came to the Advanced Directive preparation. We are looking for a sample of one that applies to the particulars of a person with an LVAD. Anybody out there completed one? OM
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Ray W.

My husband has been told he needs an LVAD. He's not eligible for a heart transplant. We are looking for people in our area that we can meet and talk to. We live in Windsor, NY and Binghamton is the "big" city for us. Syracuse is an hour away. Right now there are too many cons and not enough pros to have this done. Can anyone help us? I understand not giving out personal info through this. I can send my email address if there is someone we can talk to. Thank you.
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In reply to by Ray W.

Brian L.

I am curious as to what you consider the "cons" of an LVAD when he isn't eligible for a heart transplant. Many years ago, when I first started having serious heart issues, I was told that an LVAD might be one of the treatments that would be considered if my heart started to fail and I had not had a transplant. I immediately responded, "Never". They weren't going to implant a piece of titanium to keep my heart working and make me walk around 24/7 with a bag or belt with cumbersome equipment, make me give up going to the pool or beach, etc. That was nine years ago. I got along for about seven of those years with only minor issues (fatigue, some circulatory issues in extremities) until about three years ago. Then, my heart (which started out with the left side having about 15% capacity) started to falter further. A year later, I flat-lined. I was lucky to be revived (long story ... definitely a miracle). I had no choice. It was hope that it wouldn't happen again (in which case, I very likely would die) and that a heart would become available while I waited or have the LVAD implanted. I had the latter done and have NEVER regretted it. Yes, I had to give up the pool and beach. Yes, I have had an infection (albeit, a mild staff one, but a second surgery and some antibiotics and I am lucky that it has not reoccurred). Yes, I have to carry around two large lithium batteries and a controller around my waist (I prefer a belt to the bag for my equipment) every minute of every day. Yes, my wife and I have had to adjust a little for intimate moments. But, I am here ... two years later ... and, even if the heart never comes, I am enjoying life (last year I built a shed .. this year, I am working on a room-size model railroad layout ... next year, I might just return to coaching baseball, which I did for almost twenty years until I just didn't have the stamina because of the failing heart). I don't worry about my heart giving out again (the LVAD doctors keep a close eye on what little function that I have left there). It may before I get a heart. But, if I had known that my quality of life would be this much better, I would have told them to do this a LOT earlier. Note that I have an extremely supporting wife. She learned how to do the dressings and is fanatical about our prep - antiseptic precautions. The one infection was MY fault. I got working too much in the sun and pulled my LVAD power line, which in turn exposed the entry point to some sweat, that led to a very minor infection. Unfortunately, the one serious of drawback of an LVAD - there is nothing categorized as a minor infection. Once you get one, they monitor you like a hawk to make sure you don't get a second one. At least, that is my experience at Duke University Hospital. So, unless I have missed one of the cons, the increase in my quality of life (I can actually play with, not just watch my grandchildren) is well worth the risks that I have faced and am aware of. Good luck. Brian in NC
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In reply to by Brian L.

Suzii P.

There are a few differences but your story is almost identical to mine. I too, consider myself a miracle and yes I enjoy this life! My 10 year old granddaughter told me last month I better be to her college graduation! I'll sure try! We all need goals! Have a blessed day Brian!

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In reply to by Ray W.

Carol D.

I live in NYC. My Brother just had his 2nd, VAD placed on April 20th 2018. Mt. Sinai Hospital in NYC, is the best LVAD Team. If you look on their website and search up their Transplant and LVAD Dept. you will get a lot of info. I highly recommend and appt. with Dr. Aanalechi Anyanwu, The Top Transplant and LVAD Surgeon on the team. Look up his credentials. This man is a Gift from God, with golden hands. He saved my Brothers life 3 times. My Brother is now 76...74 when he got his first VAD Good Luck Carol
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In reply to by Carol D.

Stacey P.

Wow! Your brother is on his second LVAd. Is your brother not eligible for a transplant? I really was hoping that I could have an LVAD put in and that my shortness of breath would become a minor issue for me. Unfortunately that isn't the case and I will just have to wait till I get worse. I live in Pennsylvania and right now we are happy with my doctors at Cleveland Clinic and trust them. Thank you for your brother's doctor information.
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ron l.

Hi Stacey P. I don’t have an lvad yet but it’s difficult to understand why your EF and size of your heart precludes one from receiving an LVAD if your symptoms are affecting QOL.  On another note, I am taking Warfarin, not for a-fib, and my cardiologist thinks I should switch to Eliquis bc it will have the same effect with less potential bleeding. Does anyone have thoughts regarding Eliquis compared to Warfarin-Coumadin? Thank you. Cheers!  Ron L.

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In reply to by ron l.

Larry B.

At the stage you are at right now Eliquis is an option. Once you receive an LVAD it becomes far more complicated. My team won’t prescribe Eliquis because there is no quick way to get it out of your body if any type of surgery may be needed and that’s always a possibility for any LVAD patient at any time! I’ve been on Coumadin for so many years that I don’t even think about switching anymore. It is what it is.

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In reply to by Larry B.

ron l.

Larry B…. I was prescribed Eliquis, even filled prescription. 1st prescription was free.  Before I made the switch from Warfarin, I decided to do more extensive research. I saw a too many horror stories and will wait until after my appointment with my other Cardiologist at Cedars Sinai in June.  Hope you’re doing well. Cheers!

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In reply to by ron l.

Juanita P.

Ron I,

 

Lord don't run to get an LVAD, there are complications with LVADS...Its not the do all catch all.  And, I might add is the 360 complete turn in life from what your used to.  Totally against the grain!! If there are other interventions for you, go with that, discuss with your Dr./family, etc.  If I had to chose an LVAD again, the answer would be, sorry "NO."  That is my opinion only, so what your feeling would be totally diff.   When they got my answer and signature on the dotted line, I was clouded, very sick, and no clue which way was going.   The only ppl I had to discuss this with were my adult children who were calling the shots when I was out of it.  But if I would have known the effects of an LVAD on the body and all that is involved, would def. said still "NO."   As a matter of fact, I informed my team that if this Heartmate 2 goes bad, there will not be another device implanted...So let it be written, so let it be done.  

 

Juanita...

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In reply to by ron l.

Jillian F.

Hi Ron, 

It isn't necessarily about the size of the heart that matters, people can have a non-dilated cardiomyopathy with a low EF and still have a VAD implanted. A person does however need to have an EF of 25% or less to be considered. Usually along those lines peoples blood pressures are on the lower side making managing heart failure difficult due to the inability to increase medications that would help the heart failure symptoms. As far as your question regarding the coumadin vs. eliquis, since you don't have a VAD it would be up to you and your cardiologist if they think a different blood thinner would be best for you. Coumadin has a reversal agent where as the rest do not but coumadin can be harder to manage than the rest. Hope this helps.

Jill

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ron l.

Larry B,

A cardiologist also told me that as long as I’ve been on Coumadin and as well as I’ve done on it, may want to remain on it. 

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Christina G.

I'm very sorry to hear about your difficulty breathing however, I will be the first to say having an lvad is not all it is cracked up to be 😂. It is better you are happier with the treatment options they offer you that to want an lvad installed. Just my opinion

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In reply to by Christina G.

Juanita P.

Christina G, ABSOLUTELY.  The LVAD is not all its cracked up to be.  As a matter of fact, they didn't crack alot of the information, omitted that from the conversation.  And,,,,,,,,,,,, the longer you have an LVAD the more dependent you become with it.  So if you tried to remove or unhook would have difficulties.  Keep that in mind.   If your EF goes above 35, you can ask to have unhooked.  They will give a longgggggggggggg speech of needing it...Big $$ maker for all involved.  Not saying someone doesn't need it, but there is lot of $ into this device.  

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In reply to by Juanita P.

Deborah C.

Juanita,

You are so correct, when my husband got his LVad he was in a trial so it was considered experimental. The first  year my husband had his LVAD I ordered the supplies for changing the dressing and the water proof shower pads. It ran about 400-600 for supplies. The second year Continuum began billing our insurance a flat fee of $20,000 a month. I called the insurance company to report insurance fraud. They were claiming they were monitoring his heart 24/7. They were not monitoring anything they only sent supplies. It took almost a year before the insurance company starting taking back the money they paid out. I think there is quite a lot on insurance fraud going on. Once you have an LVad they act as if they own you. The hospital kept refusing to release him after he'd been in the hospital for 3 months after the surgery. Insisted he needed to go to their rehab in the basement. When I called the insurance company I discovered the doctor at the hospital had told them only a few days before my  call that he was in intensive care. I let them know he was on the regular heart floor and walking laps around the floor. I then accused the hospital of insurance fraud and he was out the next day. The doctor that was refusing to release him never showed her face again. Another time they kept my husband hospitalized for over a week for a nose bleed. It was crazy. If you have good insurance they will take full advantage of you. I'm guessing those without good insurance end up spending at lot of money they shouldn't have to spend. The on going expenses are way too high. They don't give you any heads up about the ongoing costs. We were very lucky to have my work insurance and Medicare to cover the costs.

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In reply to by Deborah C.

Juanita P.

Hi Deborah, unfortunately yes this goes on all the time.  However, they have a smart cookie to override here...Not only sharp as a whip, but my one daughter is a medic with 14 years in the ER/hospital setting.  Both of us are clinically sound and sharp.  They all over due this.  Once you have an LVAD, they think they do own you and micromanage.  NOT IN THIS HOUSE.  Stay on top know what you need and don't.  I told them they held me hostage for no reason, sucked continuous bloodwork daily, till i had no more to give.  UNACCEPTABLE.  As a matter of fact, they are turning my speed down next month.  Enough of this.  I workout, very active, maintain my own home,etc...They better come up with a good reason for all of this.  Have an attorney on the back burner for sure.  And I have good insurance.  Worked all my life and paid for it too.  

 

Juanita. 

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Suzii P.

I can't take Eliquis or Lasix. Both cause me to retain water. Especially Eliquis and Xarelto too. I means pounds in days. Lasix just does not work for me. Have you had any weight gain? Why not try a different diuretic then if that doesn't help a different blood thinner other than the 2 I mentioned. Coumadin is fine with me. If my ef was 41% I'd be ecstatic. I would just guess your shortness of breath is from fluid hiding somewhere. Not a Dr. Just been there-done that.

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Suzii P.

I can't take Eliquis or Lasix. Both cause me to retain water. Especially Eliquis and Xarelto too. I means pounds in days. Lasix just does not work for me. Have you had any weight gain? Why not try a different diuretic then if that doesn't help a different blood thinner other than the 2 I mentioned. Coumadin is fine with me. If my ef was 41% I'd be ecstatic. I would just guess your shortness of breath is from fluid hiding somewhere. Not a Dr. Just been there-done that.

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Carl S.

I've had mine almost three months. You should be glad you don't have to have one yet. If possible you should strengthen your heart, if possible, to put it off as long as you can. This is a life changer.

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Juanita P.

Please, please be glad you don't have an LVAD...Yes your correct 35 and below EF.  And an enlarged heart plays the criteria too.  I had dilated cardio myopathy and EF at the time of implantation was 5.  Now IDK where i'm at exactly due for Echo in March.  last March was they say 15-20 with marginal error of 5.  Meaning forward or back, 10 or 25.  When you have EF of above 35, NO You don't get an LVAD...but my God be happy you don't carry that god forsaken device with you everyyyyyyyyyyyyyywhere.  With a driveline coming out of your stomach to the main controller.  Life will not be the same, not close!  I'm sorry your going through all the trouble with your heart...Do they give you alternative for care/treatment?  To built your EF.  There are things you can do...

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William B.

I've been given a new med called Uptravi and am having bad headaches which is side effect.  Is there a med to help with eliminating the headaches?  Please advise and thx.

 

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Larry B.

Thanks for asking. You are always going to find different opinions about getting an LVAD. There are those that have no5hing positive to say and then there are many that praise it’s ability to provide a better quality of life. You know, the old glass is half full analogy.

I received my HM3 when it was still in the study phase, almost six years ago now. Prior to receiving it my quality of life sucked! I couldn’t even walk out to the street to get the mail without being out of breath and exhausted. I had been on the transplant list as a cat 2 for about 7 years by then. But, my heart had way too much pressure to make it transplantable. I was told the pressures would overwhelm a new heart. So, even though I was on the list we all knew I was never going to get one. I was eventually admitted with another case of congestive heart failure and during that stay they offered the HM3. I turned up my nose and was discharged after some milrinone therapy. Felt pretty good for a few days and then it hit again. I called my doc and told him I had reconsidered the HM3 and was ready. The surgeon called me that night and 3 days later I was admitted. Two days later I was implanted.

Life hasn’t been perfect for sure but it sure beats the alternative which was to die a slow agonizing death! Was in the hospital for 10days and then discharged. Many people my age, 66 at the time, and younger had complications such as infections, etc. I had none. Although 1 yr after being implanted I was readmiited in a v tach storm. Spent another 10 days in the hospital where I eventually had a cardiac ablation which was another five hour procedure. But, none of this was the LVADs fault. A bad heart is a bad heart, that’s life.

for the better part of the last five years I have played golf twice a week, mowed the grass weekly, washed our vehicles when needed, etc. the only thing I cannot do is get in a pool or take a bath. I shower every morning, sometimes twice if I have played golf 5hat day. We don’t travel by air anymore. But that’s just a personal preference, not a fault of the LVAD. In six years I’ve never had anyone question my LVAD. I would gladly explain it to them if they asked. I wear a cheap $35 vest I buy on Amazon to carry my equipment when I’m out anywhere. People probably think I just an eccentric old geezer and they wouldn’t be far off.

It is what it is. I went into this with full knowledge of what was going on. But, I’ve been dealing with heart failure for 29 years now. I had a five way bypass in 1973. My major reason for taking myself off the transplant list was because my quality of life has improved drastically and I didn’t want to take an unnecessary chance on a heart transplant. All I could think of was the old baseball saying, “three strikes and your out”. The transplant would have been the third time I was cracked. I always try and take a positive approach to my healthcare. The alternatives are unacceptable. Take care of yourself. Best wishes.

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In reply to by Larry B.

ron l.

And staying relatively active.  Agree there’s a mixed bag of opinions. Haven’t taken a count but seems there are more positive.  Godspeed to all. Don’t have any figures but see where more like you, who have the option, appear to be getting an LVAD.  29 yrs., you’ve been doing something right. I’ve been on Coumadin for 14 years and more than likely will remain on it.  How long have you?  On a scale of 1-10 do you have a lot of energy, and are comfortable with no symptoms? Being that your QOL has improved drastically, isn’t that the hokey pokey - that’s what it’s all about ?  Continued success.  All the best!

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In reply to by Larry B.

Sharon S.

m.Larry B Thanks for your positive comment. My husband received his Heartmate 3 LVAD in Aug 2019 after suffering from CHF for many years. After almost 20 years of medications and procedures - defibrillator, pacemaker, ablations, cardioversions etc. the only option was LVAD or home to hospice.  Because he was 84 at the time, we went through 10 days of tests, exams with many specialists, etc. before he was approved. On the positive side, he did not have any cardiovascular disease or clogged arteries and was in otherwise good health.  His cardiomyopathy diagnosis years earlier was likely caused by a virus. At the time he was the oldest patient approved for an LVAD at the University of North Carolina, Chapel Hill. Yes, there are added procedures and care, but several months after my husband received his LVAD, I told him how proud I was that he never complained, his answer to me was "I'm alive! My husband also wears the vests from Amazon, which I take to the tailor and have them invert the zipper, so they zip from the bottom to the top. It makes them easier when you sit down. We have flown across country twice & found that notifying TSA Cares ahead of time is very helpful getting through security. I could go on & on but bottom line, we give thanks every day for the miracle of the LVAD that gave us a new lease on life. Prior to August 2019 my husband was in the hospital every few months, since then he has not been in the hospital once. 

 

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In reply to by Larry B.

Sharon S.

m.Larry B Thanks for your positive comment. My husband received his Heartmate 3 LVAD in Aug 2019 after suffering from CHF for many years. After almost 20 years of medications and procedures - defibrillator, pacemaker, ablations, cardioversions etc. the only option was LVAD or home to hospice.  Because he was 84 at the time, we went through 10 days of tests, exams with many specialists, etc. before he was approved. On the positive side, he did not have any cardiovascular disease or clogged arteries and was in otherwise good health.  His cardiomyopathy diagnosis years earlier was likely caused by a virus. At the time he was the oldest patient approved for an LVAD at the University of North Carolina, Chapel Hill. Yes, there are added procedures and care, but several months after my husband received his LVAD, I told him how proud I was that he never complained, his answer to me was "I'm alive! My husband also wears the vests from Amazon, which I take to the tailor and have them invert the zipper, so they zip from the bottom to the top. It makes them easier when you sit down. We have flown across country twice & found that notifying TSA Cares ahead of time is very helpful getting through security. I could go on & on but bottom line, we give thanks every day for the miracle of the LVAD that gave us a new lease on life. Prior to August 2019 my husband was in the hospital every few months, since then he has not been in the hospital once.