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Christopher C. Recipient

Low Flow alarms on HeartWare LVAD

Hello, my name is Chris and I have had my HeartWare LVAD for a little over a year now. Life with the device had gone mostly as well as could be expected although I have experienced one problem that is quite a nuisance and was wondering if anyone had some feedback or advice on how to tackle this problem. Every so often I get these alarms for low flow rate and and told to contact my VAD team. Their usual response is to drink fluids and this does work most of the time. However on two separate occasions I have had low flow alarms that do not resolve themselves even after drinking 3+ liters of fluid over a span of several hours. Here is where the tricky part sets in. My flow rates always tend to increase with activity and decrease when at rest (i.e. sleeping). These low flow alarms make it extremely difficult to get any sleep because as soon as I start to relax BOOM the alarm will sound. I’ve had nights where I could do nothing but pace around my bedroom just to keep the alarms at bay. I love my LVAD team and they are super however they seem to get stumped in regards to offering me a solution to this problem. First line of response is to tell me to drink fluids and call if the alarms persist. When and if the alarms continue the course of action is to come to the hospital where a fluid bolus will be administered. This option is not very attractive though as I live roughly an hour and a half away from the hospital. I am all ears to hear from you all on this subject. Perhaps some of you have had similar experiences or hopefully someone may have a better plan of attack on this tricky subject. What is found to be so frustrating as well is that even after drinking extremely large quantities of fluid my flow rates will not increase back to a level that will not sound an alarm for low flow. If anyone can help me out with this issue I’d be very interested and anxious to hear what you have to say. Thanks so much for any input possible!
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Anne W.

I also have low flow alarms - I received my heartmtate 3 14mths ago and the main issue has been the Low Flow alarms. Like you I was told to increase fluids and I do keep a flow sheet of fluids in and fluids out so I can always verify my fluid intake when they alarm. Like you we have a great LVAD team also but they were stumped. I contacted some friends in England who were spear heading the Heartmate 3 in Manchester and they gave me a few recommendations. 1. Fluid balance 2. maybe there is an arrhythmia going on 2. the LVAD space is smaller than normal? 3.timing of blood pressure meds. If taking meds at night or in the am maybe the blood pressure drops so consider re-scheduling blood pressure meds i.e. don't take two different blood pressure meds at the same time, space them apart - annoying I know because you have to take meds more than three times a day. Also LVAD three had a recall of its outflow graft assembly this past April. The classic signs are low flow alarms. So we contacted our team and they did an ultra sound and cat scan to rule out this and it seems the flow is not impaired in our case. So what to do. Our team reduced the power to 5400 (it was at 5600) and they also changed the hematocrit setting. The alarms when I went in this time were going off every half hour or so but unlike you they did not occur when I was lying down. So the team contacted the Abbot folks and they are now thinking it could be simply be positional. Certainly I can never sleep on my left side (which is fine I can do this) then I cannot sit on a bar stool (in our kitchen) for more a minute or two as it will go off as the abdomen pushes against the heart they think. I also need to keep my feet elevated when sitting if possible. I also recently discovered that Arondack chairs are ok as they stretch out the abdomen and don't push pressure against the heart. I am not a heavy set guy (170lbs with all my equipment on and 5.7" This next visit on August 1st they want me to have an x-ray of me standing and then sitting to see if there is any difference in the position of the pump. I feel fine but am frustrated with not really knowing what the reason for low flow is. If everything is ruled out then they say I will just have to live with it and be constantly aware of your positioning until it is second nature. Still happy with it though - feel great - off to Alaska next week for 6 weeks - Anyway keep us informed
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In reply to by Anne W.

Barbara Cole C.

Where do I Start! I have had my Heart mate 3 for 2 years and 1 month now( 1/5/2018) I'm happy over all the results of being able to walk and move around better. I didn't start having low flow alarms until I became more active in 2019. I had one in 2018 when I first came home from the hospital. It scared the BE-GEE- B's out of my husband and I. LOL! Well we can laugh about it now! Their solution  at  that time was to take an additional dose of the blood pressure medication This worked and it was just that one time. However after the summer of 2019 after I started back to walking first 4 days a week and had to reduce to 2 days, that's when the low flow alarms began. My LVAD team said that sometimes once you become more active that the need to hydrate increases. My alarms have increased almost daily over the last 2 months. My LVAD team has suggested that I do the following:

1) Drink more water 2) Increase your activity to the level I did during the summer * this is a challenge since I live in extremely cold climate in the winter months. 3) Watch sodium intake 4) watch my positioning as I sit or stand as well as elevate my feet when I sit. 5) Don't go outside when the temp. is below 20 degrees( if they haven't mentioned it, the cold weather is an enemy to those with heart conditions of any kind. It makes it difficult to breathe,} so If I have to go out, I have to wear a mask as well as cover my mouth with a scarf to keep the cold out of my air passage.  Sooooo as you can see I have done all of what's been mentioned here and I must say if I pay close attention to all mentioned here, it appears that the alarms are reduce and I can go days without one.  It's a relief to see that others are facing this same challenge and to know that I'm not the only one dealing with these annoying Alarms.  ( in addition, I just recently had my 2 year check up with x-rays and scans, no mention or appearance of a twisted drive line thank God) 

Well, after reading all the responses here, It is causing me to be more diligent in keeping up with routine to avoid these pesky alarms. I hope reading my post will help someone as the other post have helped me. God bless everyone.

Barbara

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Anne W.

I also have low flow alarms - I received my heartmtate 3 14mths ago and the main issue has been the Low Flow alarms. Like you I was told to increase fluids and I do keep a flow sheet of fluids in and fluids out so I can always verify my fluid intake when they alarm. Like you we have a great LVAD team also but they were stumped. I contacted some friends in England who were spear heading the Heartmate 3 in Manchester and they gave me a few recommendations. 1. Fluid balance 2. maybe there is an arrhythmia going on 2. the LVAD space is smaller than normal? 3.timing of blood pressure meds. If taking meds at night or in the am maybe the blood pressure drops so consider re-scheduling blood pressure meds i.e. don't take two different blood pressure meds at the same time, space them apart - annoying I know because you have to take meds more than three times a day. Also LVAD three had a recall of its outflow graft assembly this past April. The classic signs are low flow alarms. So we contacted our team and they did an ultra sound and cat scan to rule out this and it seems the flow is not impaired in our case. So what to do. Our team reduced the power to 5400 (it was at 5600) and they also changed the hematocrit setting. The alarms when I went in this time were going off every half hour or so but unlike you they did not occur when I was lying down. So the team contacted the Abbot folks and they are now thinking it could be simply be positional. Certainly I can never sleep on my left side (which is fine I can do this) then I cannot sit on a bar stool (in our kitchen) for more a minute or two as it will go off as the abdomen pushes against the heart they think. I also need to keep my feet elevated when sitting if possible. I also recently discovered that Arondack chairs are ok as they stretch out the abdomen and don't push pressure against the heart. I am not a heavy set guy (170lbs with all my equipment on and 5.7" This next visit on August 1st they want me to have an x-ray of me standing and then sitting to see if there is any difference in the position of the pump. I feel fine but am frustrated with not really knowing what the reason for low flow is. If everything is ruled out then they say I will just have to live with it and be constantly aware of your positioning until it is second nature. Still happy with it though - feel great - off to Alaska next week for 6 weeks - Anyway keep us informed
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Brian L.

What is your fluid regiment each day? If I don't drink a minimum of 64 ounces of water (not just fluids) each day, then I risk the low flow alarm going off. Note that drinking soda or coffee defeats the purpose of hydration. You almost have to take twice as much extra water for every soda or coffee drink. Moreover, once the alarm sounds, it takes a lot of time for you to take in enough water and have it circulate into your system to defeat the low flow. This is why they suggest the hospital visit in dire circumstances, as they can get the fluid into your system quicker by IV. I say this as one who had had his rash of low flow alarms over the two plus years of my LVAD. Invariably, I can look back and notice that I have either not put in the proper amount of water (again, not just fluid) over the course of the previous 24 hours or drank too much caffeinated fluids or take in too much salt. I usually can see it coming (my flow will drop from high 4s to low 4s then the occasional 3 before I reach the 2.5 alarm leve, but there are occasions when I get a single "erratic" reading and alarm and everything goes back to "normal". In this latter situation, I just try to sit a lot (steady standing seems to be a little more difficult when the flow lowers) and slowly take in as much water as possible until I have a period of "normalcy". I suspect these latter readings are just a "normal" abnormal occurrence. It is only when the alarm continues that I get concerned. I would talk to your LVAD coordinator about the number of occurrences. I only get concerned if I start to get dizzy prior to or after a low flow alarm, as then I assume it is persistent and not just a short term fluke. I only call my LVAD team for low flow alarms when they are persistent. Thankfully, taking a seat and drinking water rather continuously usually gives me enough to get back to 'normal." Although, there was the time I fell over while kneeling for communion. I got right back up. But, since, I definitely get asked every Sunday as I come into Sunday School if I have drank my water and have plenty in my bag. LOL!!!!
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Fred T.

Thanks to you all for talking LVAD . I’ve only meet a couple of others . At hospital and 1 in cardio gym. My flow alarm almost always goes when I get out of bed. First the routine: record vitals. Then start my daily intact of h20 & meds. I do enjoy a cup of coffee. Only one as Brian mentioned caffeine is no no as well as sodas. Drink just water!! I’m not the best. Computer guy, but I’ve learned to open “my LVAD” A couple of other topics: -Light headedness from low flow. -Low heart rates -Say 50 -low blood pressure 100 and under. LVAD team wants it low- -Dizzy anyone? ( - fainting or near anyone? -infections? The above looks bad but all in all the LVAD Heartware. Has brought a good life ! Last how about life quality and decisions: Destination/ bridge/ recovery. Has anyone decided to X plant?? God Bless you. FD
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In reply to by Fred T.

Vikki R.

I’ve had my heartmate 3 for 3 months on March 16. I had low flow  incidents with fainting thru out hospital stay fainting when alarms go off at home they have given CT scans that show left ventricular size is small, echos that show regurgitation, the low flows are very scary I stay hydrated with 64oz of water no soda or coffee, then I’m fluid overload so the tell me to take lasix the next day low flow alarms. I really don’t see much of a change, I was sob before lvad I’m sob after lvad. I’m worried my right ventricle is sick, thanks for letting me vent❤️

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Edward Joseph P.

Contact your coordinator and get the device replaced.
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In reply to by Edward Joseph P.

Vanette J.

I had low flow all the time I went to see my doctor and the found out that the lvad was failing and had to be replaced ask your doctor to check to make sure your driveline is not twisted like mine was

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Moritz B.

Hi, I am suffering low flow alarms for a long time. The LVAD system calculates the blood flow from hämatocrit value (the lower the value the more hydrated). 1. Drink slow but steady (3l at once does not work, better drink one glas per hour to stay hydrated) 2. High blood pressure leads to high Watt, low blood pressure to low watt--> and as this the flow value 3. A thrombus is inside your LVAD system (but this only applies if your flow rate drops suddenly) What you can do the following especially to habe no alarms during the night. Lay down flat in your bed and put the feet up a bit with one or two cussions. This will increase your flow value. When standing up, dont make it too fast (low blood pressure). Ask your LVAD-coordinator to change your hämatocrit value in the device or the low flow threshold. Best of luck for you and greeti gs from Germany. Moritz
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Andrej S.

Hallo Moritz B.

ich bin leider nicht so gut in englisch.

ich sehe hier im Forum auch keine Möglichkeit Dich per PN zu kontaktieren.

Ich entschuldige mich, dass ich im englischsprachigen Forum auf deutsch schreiben

mit freundlichen Grüssen

 

Andrej

 

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Vanette J.

Hello I just got out the hospital Sept 3 because of low flow and my reason was my lvad drive line was twisted they had to do the surgery over but the beeping and the noise from the lvad stopped and I'm abel to breath better and walk better

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Marsha M.

We are planning a trip to the Naples, FL area soon.  When i use the locator on the Mylvad app, it shows the closest locations for LVAD assistance if needed are in Miami, which is a 1 1/2 hour drive from where we plan to stay.  Does anyone have any contact info in this area?  We are assuming a hospital emergency department would be able to handle a heart emergency, but are hoping to find a heart clinic or cardiologist in the area who is familiar with Heartware/Medtronic LVADs.  

Appreciate any information.  Thanks!

 

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In reply to by Marsha M.

Bonnie M.

My husband has a HeartWare, was implanted at Mass Gen Hospital  in Boston on 8/31/19, but we live in the winter in Florida. He is cared for by JFK Hospital in Atlantis, FL. I show this is about  2 1/4 hrs. from Naples. Dr. Waqas Ghumman and Dr. Sajid M. Mirza are the BEST! The phone number is ‭(561) 548-5823‬. It is not that much further and is much easier to maneuver than Miami. I would highly recommend JFK over Miami. Good luck!