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Redjade428's picture Redjade428
LVAD Failure
Wed, 07/19/2017 - 12:16am

This may not be the forum for this question, but who better to answer my questions than those living with an LVAD and the people who care for them.
My fathers LVAD (Heart Mate II) was implanted August 2015. When he had his heart attack we were literally told to take him home so he could die, as the hospitals in my home town were ill equipped to deal with heart failure of this magnitude. A nurse happened to mention the LVAD, we asked the doctor about it, received (what is now) a scary small amount of info/mis-information about it, but it was his only hope. So here we are 2 years later, he is not eligible for a heart transplant and even if a replacement LVAD was an option i dont know if he would go for it, not that i can blame him, with some of the complications and the LVAD lifestyle is not for the faint of heart (no pun intended :) )

That leads me to my questions, again i understand i may just need to talk to his PA, VAD coordinator and or doctor but what happens when the LVAD fails?? Will we have warning signs? He does go to the doctors office VERY regularly, but can they always tell ahead of time? Will they see specific signs and forewarn us? Will it just fail and he will suddenly be gone??
Any insight would be greatly appreciated.

pschmaltz's picture pschmaltz
Device failure is NOT common
Wed, 07/19/2017 - 9:04pm

My mom was implanted with the HeartMate II in April, 2017. I am not an expert in LVADs by any means, but as my moms caregiver, I have done hundreds of hours of prep and self-education to prepare myself for the role. In my research on the device, I found that there is a lot of old and misinformation out there regarding failures. The Heartmate II is incredibly durable and has been through numerous trials in the lab to try and make it fail. Some of the problems that arise with LVADs are the result of outside factors like blood clots gumming up the device, which sometimes can be treated with anticoagulants if caught early enough. There are people who have had an LVAD for 10+ years, so the failure rate of the device is really not something to worry about. What's more important is the daily regimen of keeping everything stable. INR, fluid intake to keep the pump happy and of course, maintaining sterility when doing the dressing change.

As for warning signs of a problem, Flow rate and Power are big indicators of problems with the pump. Did you get the new pocket controller with the digital readouts that show the readings from the pump or are you still on the old controller style? I keep a log in MS Excel with her VAD numbers every day so I can spot any trends in the numbers changing one way or the other.

Regarding actual device failure and how long someone with an LVAD is going to last in that situation, that is going to be patient specific and will depend on several factors:
1. Was the Aortic valve repaired or reinforced in some way during the LVAD surgery or did they sew it shut?
2. How much the heart has recovered since the implant and current Ejection Fraction.

I will expand briefly on each of those above:
1. If the Aortic valve was left alone to function normally, then the possibility of it leaking becomes a risk later on due to the increased pressures put on the valve by the continuous flow of the LVAD pump. Some people do just fine, but my moms surgeon at Mayo in Rochester said that over time, small leaks in the valve can occur which can reduce the pumps effectiveness due to the changes in ventricular pressures and blood flow. The valve can be fixed later if it wasn't closed during the initial implant, but as with any heart surgery, there is risk in doing that too.

2. If the LVAD were to suddenly fail, then the heart has to be strong enough to push the blood through the device and out to the body. That's why I said it is patient specific because if the heart has had time enough to recover and get stronger, then an LVAD device failure might not mean a death situation within minutes. However, if the aortic valve was sewn shut, then the heart has to push the blood in and through the device itself rather than just through the chambers of the heart. And again, my moms surgeon at mayo said that he has seen that specific situation occur with a successful outcome where the patient was able to be stabilized after device failure and a new LVAD implanted. I know that happening is probably on rare side as people with LVADS have a weak heart to begin with, so the heart suddenly being able to pick up the slack and keep up isn't very common.

In my moms case, the nearest LVAD center is 10 hours away and her Aortic valve was sewn shut, so I know if her device were to fail, she probably wouldn't make it. But as I said, device failure is not in my top ten list of problems to worry about every day as the device has been through rigorous testing and can last for many, many years if proper conditions exist that don't introduce problems. So what it comes down to is this; how long would it take to get to an LVAD center if there was an actual device failure and what the current native function of the heart is.

I hope I was able to answer some of your questions. As I said, I am not an expert in this, but being at mayo with my mom for two months left me a lot of time to read, ask questions and do research so my role as her caregiver can be a successful one.

Redjade428's picture Redjade428
Thank you
Thu, 07/20/2017 - 10:34am (Reply to #2)

Thanks for replying!
My Mom and I both have gone through all of the training and my brother and i have gone through the manual, and i guess for the most part i realistically know the answers to my questions. I think the worst part is the weird/unexplained things that happen is what freaks me out and makes me question what i know about the device (ihope that makes sense cause it does in my head lol).
My parents originally lived 12 hours from the implant hospital and his doctor in their home town was not following Memorial Herman's bloodwork protocol so we did not find out about the GI bleed issues until 6 months later when he had to be medivaced back to Houston and receive a blood transfusion. Since implant date August of 2015 he has been back in the hospital 3 times - 2 for GI bleeds and one because LDH values skyrocketed.

Fortunately they have moved and are now within 2 hours of an LVAD center. We are much happier with this facility as they do not seem to panic about ever little thing and require transport to the hospital immediately.

I do not know if the aortic value was sewn shut, repaired or reinforced. I also do not know what his current EF is.

My Dad does have spread sheets that he fills out daily for all of his numbers and he keeps track of all of his values in the same binder.

There just seems to be some random things that happen that they are unable to explain. For example his LDH numbers skyrocketing. They put him, his heart and his pump through the paces, meaning a ramp echo, and still had no explanation for why we were seeing the increase.
He was having what sounds like heart palpitations, again no explanation. There were no recordings of any strange events on his contoller either.

His most recent hospital stay a cardiac resident did tell us after the ramp echo that the left side of his heart has recovered quite a bit, and while my dad has been told he has no transplant option, this resident tells us to talk to the doctor again but to also discuss removing the LVAD.

We just seem to get a lot of misinformation (starting from the very beginning of this journey) which makes me question a lot of what they tell us and makes me wonder if they will truly be able to catch the heartmate failing.

Dont get me wrong i am so thankful, as is my entire family, for the extra time we have had with my dad! There is just a lot of scary and incorrect info out there and every doctor seems to have a different point of view on things, it gets kind of difficult to sift through the muck for the correct info.

pschmaltz's picture pschmaltz
My mom also had to be flown
Thu, 07/20/2017 - 3:06pm

My mom also had to be flown back for a lower GI bleed, but hers occurred the day after we got home after she was discharged from Mayo. All she needed was a colonoscopy to get in there and seal the bleed in her lower GI, but no one locally would touch it due to the LVAD. Because she was losing blood, they had to medivac her back to Mayo that night. The doctors at Mayo were very nonchalant about it and said something to effect of "it's not a big deal".
They fixed the bleed, watched her for a few days and sent her home. No hospitalizations since. She did have a few days of "low flow" alarms at one point, but that was due to dehydration and we were able to manage that without the ER but with daily calls to the LVAD team with her vad numbers.

Increased LDH values are sometimes related to pump thrombosis (clots sticking to the pump). Did your dad ever have any low INR events, which cause increased clotting? Clots in the pump also can cause increases in power readings. As a comparison, my moms pump usually has readings in the ranges below:
Speed: 8800
Flow: 3.7 - 4.5 (lower in the AM)
PI: 7s & 8s (lower in the AM)
Power: 3.8 - 4-5 (lower in the AM)
Her last echo showed an ejection fraction of 20. She was at 9 before LVAD.
Her heart has also gotten a little better and has shrunk.

The condition of your dads aortic valve and ejection fraction really need to be known before even considering LVAD removal. I don't know if your doctors ever mentioned this, but my moms surgeon at Mayo said that instead of removing the LVAD, they can also just shut it off in an OR setting and see how the heart handles the strain. I know in my moms case, she will always have the pump.

You said his LDH number skyrocketed. Do you remember what it want from and to? Has his BP been stable?
On the bloodwork protocol that you said his local doctors were not following, were they checking his INR weekly?
Any infections at the lvad site, big changes in BP or something else that happened around the same time of the palpitations or other events?

In my moms case, she went through a few months of very low BP, dizziness, weak and just not feeling very good at all. After several weeks of trial and error with her BP meds and diuretics, they ended up stopping the Lasix and one BP med entirely and that fixed the problems she was having. But it took me to initiate that process and a lot of back and forth between myself and the VAD team to figure it out.

I know what you mean about one doctor saying one thing and another one saying the opposite. My moms local cardiologist doesn't have a clue. I am trying to get us moved to Phoenix, so we will be within minutes of Mayo down there instead of a 10 hour drive from North Dakota to Minnesota.

If I were in your position, and his LVAD doctors are not able to figure it out, it wouldn't hurt to get his records sent to a different LVAD hospital for another opinion.

Redjade428's picture Redjade428
So his LDH tends to stay
Thu, 07/20/2017 - 10:25pm (Reply to #4)

So his LDH tends to stay higher in the 600 - 700 range, the recent skyrocket had him up at 1200. They didnt find any clots, they actually inserted a camera throughhis artery to take a look - they same day they did the ramp echo. His INR numbers were stable, BP stable - the only reason they thought there was a problem was based on his bloodwork that Monday. His controller didnt show any events when the interigated it. The entire time he has had the lvad his ldh has been the same between 600-700, after the event when it skyrocketed his ldh has actually dropped to the mid 400's.

He had a minor infection at the drive line sight last October, which we caught before it even really had a chance to produce any puss. But that was months before the climb in his ldh numbers.

As for the palpitations we can not find any common event between them. The controller has not logged them as an event and the doctors have been unable to recreate it.

I dont know off the top of my head all the parameters with his pump (flow, speed, power etc) but he is very good about writing them down on his spreadsheets twice a day. He brings his binder to every single appointment he has so they can look over them. He even goes as far as writting down what he has eaten every day in his binder as well, so we always have it tolook back at for any events.

As far as his pump ever being removed or even shut off - it will never happen, it is just disheartening when someone throughs that little bit of hope out there, that maybe my dad will be able to go out on the boat with us to go fishing.

My Dad's first cardiologist when they got back home referred to him as a unicorn lol, he was one of 2 lvad patients in el paso at the time.

We have an appointment a week from tomorrow with his pa and lvad coordinators, i will be full of questions for them again - as my dad likes to introduce me "this is my daghter and she will performing your interogation today"

Thank you so much for taking the time to chat. You have given me a lot of info to track down and i appreciate it, as i am the minor 1/2 (my mom is his main caregiver, but i am backup) of my dad's caregivers it is helpful to have someone to talk things through with and get ideas for questions that i hadnt thought of.

pschmaltz's picture pschmaltz
Found something that is worth a read
Fri, 07/21/2017 - 9:57am

I was looking for something else today and came across this post:

It's about someone who had their driveline break and the pump stop, but they did not die as a result. It's an older post from 2013.

TN337's picture TN337
Wed, 02/07/2018 - 12:13am

Hello Redjade428 I hope everything is going well with your father. Sadly, I have some experience with an LVAD failure and I hope that isn't something your family will experience. My father had his HVAD for just 3 months when his failed and it was very sudden and unexpected. While I understand all people are different, this is the symptom he experienced. He experienced a black-out episode, but seemed normal after. The next day he experienced another black-out, but never regained consciousness. Multiple doctors can't explain what happened, just that the HVAD stopped. They are at a loss for an explanation since he wasn't having any complications.

cjruth58's picture cjruth58
My doctor, who is awesome
Thu, 02/22/2018 - 11:28am

My doctor, who is awesome told me the vad will continue long after I am gone. If there are issues, it will alarm, and you call your vad coordinator for direction. I have had a vad for 8 years now, and have not had an issue with the vad itself, only infection and clots, which can be fatal. There is an easy blood test that shows if there are clots or infection, which I take monthly. That test saved me when I was feeling fine while I had an infection and clot. The vads are designed for these tests, and are accurate. From my experience, infections and clots require more attention then the vad. I have, and will continue to trust and be grateful to the vad and everyone involved.
Sure wish you luck with your uncle. He is lucky to have you.

musician's picture musician
LVAD for 9 years now.
Tue, 02/27/2018 - 7:38am

From Ian Potts in the UK.
Could you tell me which LVAD you have please? I have had an Ventrasist one for 9 years, so I would like to see if the posts on the Forum are relative for me.

lhuckeba's picture lhuckeba
Pump failure
Mon, 06/18/2018 - 1:46pm

Regardless of the type of device implanted, each is designed with alarms for various things. You should contact your LVAD coordinator immediately if any alarm should sound. It could be minor to something more serious. But if an alarm sounds, it should be taken seriously. Your VAD center should have a physician or coordinator on call 24/7. Do not hesitate to call with any concern you may have. Time does matter. There is treatment, if caught early enough. If you are unsure about what to listen and look for, contact your LVAD coordinator for additional training. That is what they are there for.