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StaceyPotter37's picture StaceyPotter37
Not a candidate for an Lvad
Sun, 04/08/2018 - 9:56pm

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.

Maytagman10's picture Maytagman10
You should be happy you don't
Mon, 04/09/2018 - 1:12pm

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.

StaceyPotter37's picture StaceyPotter37
I don't feel lucky because I
Mon, 04/09/2018 - 10:43pm (Reply to #2)

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.

Deano's picture Deano
Sorry to hear that you aren't
Mon, 04/09/2018 - 1:30pm

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.

StaceyPotter37's picture StaceyPotter37
It was really hard to hear
Mon, 04/09/2018 - 10:49pm (Reply to #4)

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?

vstoll277's picture vstoll277
I’m sorry to hear you didn’t
Tue, 04/10/2018 - 8:53pm

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.

StaceyPotter37's picture StaceyPotter37
I have not sought a second
Fri, 04/13/2018 - 11:02pm (Reply to #6)

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.

StaceyPotter37's picture StaceyPotter37
I have not sought a second
Fri, 04/13/2018 - 10:57pm

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.

vstoll277's picture vstoll277
Stacey, I wish I had the
Sat, 04/14/2018 - 11:39am

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! ❤️

StaceyPotter37's picture StaceyPotter37
I don't understand why your
Tue, 04/17/2018 - 9:59pm (Reply to #9)

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's picture
Advanced Directive for LVAD Recipient
Wed, 04/18/2018 - 11:11am

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's picture
LVAD decision
Tue, 04/24/2018 - 6:52am

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.

link2brian's picture link2brian
Your LVAD Decision
Mon, 04/30/2018 - 1:21pm (Reply to #12)

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

lorac328's picture lorac328
LVAD Implantation
Mon, 05/14/2018 - 3:53pm (Reply to #13)

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

StaceyPotter37's picture StaceyPotter37
LVAD Implantation
Sat, 05/19/2018 - 10:20pm (Reply to #14)

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.