Anyone else with HFrEF (Heart Failure with reduced Ejection Fraction) have trouble keeping BP up, but lower extremity edema down?

I am in this constant battle of trying to get my systolic over 100mmhg.  On 80mg furosemide, middle dose entresto (sorry can't remember what the numbers are but it's the middle out of 3) twice daily, 25mg spirolactone, 5mg ivabradine 3xday.  After raising my dosages of entresto and ivabradine a couple months ago my bp tanked again.  Now I average 90mmhg sometimes dropping in the 80s.  At which point I assume I have lost too much fluids so I drink water all day, but then I will wake up to extra edema in my feet legs and pelvic region.  To get the edema to an acceptable level (and not gain 2 lbs overnight) I have to restrict my water intake pretty tight, but then I get bp drops and near syncope every time I stand or sit up, plus episodes of vertigo (spinning sensations).  If anyone has had this or a similar problem balancing fluid and bp I could use any tips.  Cardio says I'm doing all the right things to try and balance it, but I'm wondering if others have mastered the art better than myself lol?


5 Comments

A balancing act

by Gemita - 2021-04-24 09:00:34

Oh Asully,

Although I do not have heart failure, I have always struggled with low blood pressure and of course the pacemaker cannot help with this.  My blood pressure recently has been down to 80/47.  I believe the normal blood pressure range can be anything from 90/60 to 120/80, so unless you are feeling faint with your blood pressure values, you needn't perhaps drink so much water.  In fact too much fluid at any one time may not be so good for the heart anyway.  Go by how you feel, rather than the numbers you see.  I only take action when I need to and I am not always monitoring my blood pressure either.  I know from my symptoms when it crashes.  And like you I suffer from atrial tachyarrhythmias and they can certainly trigger low blood pressure (or high sometimes). My blood pressure values can be off the scale in either direction very quickly.

Apart from good hydration, I have to take on board more salt too.  Crazy isn’t it, we take meds to bring our heart rate and or blood pressure down and then we take more salt to increase it.  What’s the answer?  Perhaps to reduce the dose of our meds to a minimum to treat our condition without affecting blood pressure?  While you are prone to feeling faint, please stay safe and avoid driving.

Looking at your meds, I am not altogether surprised you have a problem.  If your combined meds are not improving your heart failure, I would perhaps respectfully ask whether you could lower the dose of the ones you have just increased to help keep your blood pressure stable?  I do not believe low blood pressure is going to help your heart failure, and it may even increase your risk of other problems if it deprives your body of oxygen as you try to carry out your normal activities.  

I know you are being well looked after and well monitored, but I need to ask whether your kidney/liver function is being regularly monitored to make sure that elimination of your meds is adequate and not building up in your body?  This happened once to me with Digoxin when it became quite toxic and wasn't being cleared quickly enough.  It can happen particularly if you develop poor kidney/liver function.  Also, are you being checked for endocrine problems - hypoglycaemia, parathyroid, Addison’s disease, thyroid, diabetes?  What about electrolyte imbalances, particularly potassium/sodium with your meds?  Do you have any hidden blood loss?  Do you have an infection somewhere?  Do you have any allergies?  Are you getting sufficient nutrients from your diet, like B vitamins to prevent anaemia?

I have to eat small meals throughout the day, preferably low in carbs since a large meal will cause hypotension as blood is diverted to my digestive tract to aid digestion.

Finally consider wearing compression stockings to help reduce pooling of blood in the legs, if it is safe for you to do so with heart failure?  And just to tell you what you probably already know, my doctors told me to act quickly if I come over faint by sitting down, or squatting down, or better still, by lying down and elevating legs. If you are unable to do this, cross your legs at knee level while sitting or cross your legs while standing, clench your buttock/tummy muscles and make tight fists (or just try tensing muscles wherever you can).  These counter-manoeuvres may help squeeze blood back up towards the heart and head preventing a faint.  Drink some water as soon as possible too.  Eat something salty too (but only if safe to do)?  Of course always get up slowly from a sitting or a lying position with low blood pressure.

Good luck Asully.  I am glad you are putting everything on hold until you have seen your heart failure doctor.  Sounds like a good plan

heart failure and low bp

by Julros - 2021-04-24 11:25:40

I do not have heart failure but I worked as a nurse on a cardiac floor for many years. I fear that your heart failure is worsening to the point that the heart is just not able to squeeze enough blood with each contraction. Compression stockings may help, but please do not decrease your medications or increase your salt intake without speaking with your doctor. You may need to take an intravenous medication like milrinone, that can increase your cardiac output. 

 

Options

by Terry - 2021-04-24 18:38:03

HI ASULLY,

If you do get His bundle pacing, as your Mayo trained EP suggests, look for natural ventricular activation to relieve your heart and provide immediately improved hemodynamics. According to the reports, it may take a while for completion of "reverse remodeling," just as it takes even more time for what your doctors call "pacing induced cardiomyopathy" to occur.

Scroll down to "If I have heart failure subsequent to conventional pacing, can my heart heal itself if I convert to His bundle pacing?" on <http://www.his-pacing.org/the-list-his-bundle-pacing-papers/> for study reports. See Karen's story on the home page. She was healed from pacing induced heart failure - Dr. Hoyt, Iowa Heart, Des Moines.

Terry

Thanks everyone!

by asully - 2021-04-24 20:55:56

I know 90 sbp doesn't sound low to most folks, but with my ejection fraction, and severe left ventricular systolic dysfunction moderate right ventricular dysfunction etc etc lmao they want it over 100sbp.  Sound weird I know, but ideally they would have me around 130sbp which hypertensive in normal patients lmao.  I get a complete blood panel done for all things advanced hf every 6 weeks (including liver/kidney/and electrolytes).  The advanced HF dept does it on all patients on a STAT machine so they can decide if u need to be placed on inpatient right then and there (this is a really nice feature instead of waiting 24-48 hrs for outpatient labs.  HF doc said at last appointment to back off (lower the dose) on either the entresto or the furosemide if I can't keep it over 100 (he trusts my judgement and I am well practiced in monitoring my own meds.  But since I am already getting mild lower extremity edema I can not back off the furosemide (missing even one dose can cause me to retain absurd amounts of water then spend a week adding extra diuretics to get it off.  I really don't "want" to  lower the entresto back down to the lowest dose because we are trying to uptitrate to optimal therapeutic dose.  I have about 15 pairs of super fancy compression socks, I just hate wearing them as I am sure anyone who has used them can relate, I do use them post procedures etc to prevent clotting.  I am getting near syncope every time I sit up or stand up etc but since I am pretty young and flexible I just squat when I feel the tingle and my vision goes out, this elevates the orthostatic hypotension until I stand again, then squat, then stand, repeat.  I probably look like a nut job who thinks their a frog to my neighbors when they drive by lmao.  Next HF appt a week from Monday so I am trying to tuff it out until then, appetite is terrible, prob combo of meds and worsening HF.  As for milrinone, we haven't had to use it on me outpatient yet, it is guaranteed down the road.  Back in November post mitral valve replacement they had me on it till 24 before discharge (about 9 days).  But I had gone into acute right sided failure following the valve replacement (spent 4 days on a iabp).  Anyways, I am rambling,  I was thinking maybe I need to spread out my water consumption so I am still keeping blood volume up but not drinking it faster than it can absorb so I don't have as much fluid build up?  Or maybe I shouldn't drink as much fluids after my diuretic wears off (the effects only last about 4 hours, so drink while it's active in my system than limit intake the rest of the day...I was given permission to split my fursemide dose into two times a day, however I found that it became ineffective at 40 mg not causing me to diurese.  Maybe a different diuretic?  Of course I will go over this with the doc, but his answer is usually your guesses are as good as mine try them and see what happens.  
 

Edited to add:

We are about 99% certain my tachycardia is just plain old sinus tachycardia now, now signs of irregular SVT.  This means there isn't really much they can do as it is simply my heart beating faster to compensate for my declining cardiac output.  The ivabradine aka corlanor is really the only med out right now for HFREF patients who have resting HR above 70bpm. Now that they upped my dose to 5mg tid we have noticed a drop of about 10-15bpm on average putting me between 95-110 on average now...a tad slower when the meds first take effect and for about 30 min after.  Not ideal, as I am still "running too hot". In other words although it's a compensatory mechanism for low cardiac output it will lead to more rapid decline over time....but this is the nature of HF.

Entresto

by Tulp - 2021-04-26 00:34:11

I had big pb with entresto and too low BP. I had to stop taking it. Every time I changed positions I blacked out.

My FE was very low (15%), and I had an acute pulmonary edema.

Perhaps you should ask your doctor if there is an alternative to Entrésto.

 

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