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Vikki R. Recipient

Low Flow

Hello, I’m 58 years old wife, mother. My CHF started in my early 40s secondary to Rocky Mountain spotted fever destroyed my ventricles. Now as of Dec 16, 2019 just out of the hospital 2months Feb 16. It’s been a roller coaster with my heartmate 3. Many low flow incidents, and high PIs. I’m either to wet or to dry it’s roller coasters.  Has anyone experienced the low flow??

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William W.

Vikki,

I have had an LVAD, Heartmate 3, and I get that from time to time and my team does not feel it is an issue. What is your PI normallyand what the other times?

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Wendygail F.

My husband (Heartmate 3) experienced the same problem ....it turned out not to be a problem (and he was drinking enough) the LVAD team leader told us that many across all states were experiencing this that had no expectations...we were told that the flow numbers were our gauge as that is the aim with the LVAD to bring congestive heart failure patients to a better flow of blood....ask your Lvad people about this....we were surprised but it all made sense and worked out.

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In reply to by Wendygail F.

Vikki R.

Wow that’s so interesting, my team wants to prevent low flows 

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Dennis S.

My wife has had her LVAD for a little over 6 months and I believe we’ve gotten low flow alarms maybe 3 times (always out in public of course). Never a problem...just increased fluid intake. As far as PI is concerned, I was pretty focused on PI numbers but the doctors have told me numerous times that there’s not much significance to the numbers. I think there’s too much variability to matter. Less concerned about PI now. 

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In reply to by Dennis S.

Vikki R.

You story helped me a lot I have multiple low-flows with speed dropping 5450, I don’t drink much water it’s rough but I drink at least 4 bottles a day some days. 

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In reply to by Dennis S.

Vikki R.

Dennis, thank you, I have multiple low flows still whether I’m hydrated or not, I could be laughing or bending over and still have low flows.

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Janelynne M.

I had this problem when I first got my LVAD Heartmate 3.  Was in and out of the ER several times.  Finally the team called in the company who made them in Boston and they adjusted the levels of each and it has helped a lot.  Finally getting some sleep at night. I also had a plural effusion which was drained and a colonoscopy.  I know the alarms going off all the time are a nuisance and it would be nice if they could lower the volume.  But at least the amount of alarms has been less.

Hope this helps.

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Reiss T.

Yes, I have had a huge number of low flow warnings over the past 9 1/2 years with a heartmate II, but they are only detected when my device is interrogated. I am not aware of them when they occur. I always need to do a better job hydrating but suspect there may have been an electrical problem with my old controller. I just got a new controller a couple of months ago due to wear and tear of the driveline and it will be interesting to see if the problem is ongoing.

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Michael H.

  I too have heartmate 3 and have many low flow alarms I have kept my team informed also PI runs high 8-9-10 range it was 11 one time and I called them . I had a right heart Cath. in December at my 1 year birthday my team works closely with the Cleveland Clinic and they told me they ( the clinic ) are aware but don't have a solution as yet . At one time I changed my controller to see if that may be the problem no difference good luck I will post if I have a solution .

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Lisa J.

Hi Vikki. I have a heart mate III since September 2018. When I left the hospital I had several  low alarms.  I never felt bad when it  even went off went off in middle of night.  Always seemed to go off when resting so I would get up and move around.    I suspect this is an issue with III.  They thought it was due to my blood pressure as I was drinking plenty of fluids.  I also passed out a few times when I would stand up. No alarms!  just a thud on the floor.  All was fine as I would immediately recover. But so annoying.  Finally they changed my controller and lowered the alarm to go off at 2.0. (Requires FDA permission)  Alarms stopped!  We were able to  take away some meds and no more dizziness/passing out from low blood pressure.  I also found if I exercise every other day it helped with all numbers.  A solution needs to be found this seems to be a problem with III.   Luckily my team was pro active in finding a solution.  After a year I did find my numbers all improved as I got stronger.  Time and communication with team was key for me.  Good luck and stay strong!  

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In reply to by Lisa J.

Vikki R.

Thank You, Lisa, your story sounds like mine. While I was still in the hospital I fainted from low flow they changed my speed from 5600 to 5500. It really Hasn’t  helped. My team believes its because I’m not drinking enough water but I beg to differ I can be hydrated and have low flows because I laughed or repositioned my upper body.  Now with COVID-19 it’s a struggle whether or not I should go to hospital my alarms may go off once a week but low flows happen all the time and I feel really bad.

 

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In reply to by Lisa J.

Vikki R.

Thank You, Lisa, your story sounds like mine. While I was still in the hospital I fainted from low flow they changed my speed from 5600 to 5500. It really Hasn’t  helped. My team believes its because I’m not drinking enough water but I beg to differ I can be hydrated and have low flows because I laughed or repositioned my upper body.  Now with COVID-19 it’s a struggle whether or not I should go to hospital my alarms may go off once a week but low flows happen all the time and I feel really bad.

 

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In reply to by Lisa J.

Vikki R.

Thank You, Lisa, your story sounds like mine. While I was still in the hospital I fainted from low flow they changed my speed from 5600 to 5500. It really Hasn’t  helped. My team believes its because I’m not drinking enough water but I beg to differ I can be hydrated and have low flows because I laughed or repositioned my upper body.  Now with COVID-19 it’s a struggle whether or not I should go to hospital my alarms may go off once a week but low flows happen all the time and I feel really bad.

 

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In reply to by Lisa J.

Vikki R.

Thank You, Lisa, your story sounds like mine. While I was still in the hospital I fainted from low flow they changed my speed from 5600 to 5500. It really Hasn’t  helped. My team believes its because I’m not drinking enough water but I beg to differ I can be hydrated and have low flows because I laughed or repositioned my upper body.  Now with COVID-19 it’s a struggle whether or not I should go to hospital my alarms may go off once a week but low flows happen all the time and I feel really bad.

 

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In reply to by Lisa J.

Vikki R.

Thank You, Lisa, your story sounds like mine. While I was still in the hospital I fainted from low flow they changed my speed from 5600 to 5500. It really Hasn’t  helped. My team believes its because I’m not drinking enough water but I beg to differ I can be hydrated and have low flows because I laughed or repositioned my upper body.  Now with COVID-19 it’s a struggle whether or not I should go to hospital my alarms may go off once a week but low flows happen all the time and I feel really bad.

 

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In reply to by Lisa J.

Vikki R.

Thank You, Lisa, your story sounds like mine. While I was still in the hospital I fainted from low flow they changed my speed from 5600 to 5500. It really Hasn’t  helped. My team believes its because I’m not drinking enough water but I beg to differ I can be hydrated and have low flows because I laughed or repositioned my upper body.  Now with COVID-19 it’s a struggle whether or not I should go to hospital my alarms may go off once a week but low flows happen all the time and I feel really bad.

 

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In reply to by Lisa J.

Vikki R.

Thank You, Lisa, your story sounds like mine. While I was still in the hospital I fainted from low flow they changed my speed from 5600 to 5500. It really Hasn’t  helped. My team believes its because I’m not drinking enough water but I beg to differ I can be hydrated and have low flows because I laughed or repositioned my upper body.  Now with COVID-19 it’s a struggle whether or not I should go to hospital my alarms may go off once a week but low flows happen all the time and I feel really bad.

 

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Dennis S.

Hi Vikki, My wife is using an app called Drink Water Aquarium. Tracks water intake and reminds you to drink. There are a number of similar apps but she likes this one. Hope that helps. Be safe. 

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In reply to by Dennis S.

Vikki R.

Thank you Dennis, I’ll look into drink water aquarium 

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In reply to by Dennis S.

Vikki R.

Thank you Dennis, I’ll look into drink water aquarium 

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In reply to by Dennis S.

Vikki R.

Thank you Dennis, I’ll look into drink water aquarium 

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In reply to by Dennis S.

Vikki R.

Thank you Dennis, I’ll look into drink water aquarium 

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In reply to by Dennis S.

Vikki R.

Thank you Dennis, I’ll look into drink water aquarium 

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In reply to by Dennis S.

Vikki R.

Thank you Dennis, I’ll look into drink water aquarium