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kitkatz
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« on: January 18, 2016, 11:15:50 PM »

My BP is low again.  The doctor says it is caused by my leaky heart valve and pulmonary hypertension.  Seems dialysis attempts to bring everything back into hemostasis and the blood pressure crashes.
Midodrine is to be picked up tomorrow from the pharmacy and taken two times a day to help with the low BP.  Here we go again.
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Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
kitkatz
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« Reply #1 on: January 19, 2016, 12:14:58 AM »

And another echocardiogram has been ordered for Wednesday at 9:30 to check the heart valve again.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
PrimeTimer
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« Reply #2 on: January 19, 2016, 01:38:00 AM »

And another echocardiogram has been ordered for Wednesday at 9:30 to check the heart valve again.

Sorry to hear this. Hope the echo comes out good and the Midodrine puts things back on an even keel. I know this is different but before she had a silent heart attack and diagnosed with congestive heat failure, my mother had low blood pressure for years and they finally concluded that it was "normal" for her. But, later on they discovered that she also had an enlarged heart on one side. They put her on Coreg to help strengthen the beat of the heart and the output of blood. Over the course of about 4 years, the Coreg had actually firmed the heart muscle up a bit but nonetheless, she had to remain on the Coreg for the rest of her life. BTW, they think the enlarged heart may have been caused from either having Scarletina as a child (mild form of Scarlet Fever) or else a virus in later years had done the damage, we'll never know. Hope they get to the bottom of your low BP and come up with a solution that is best for you and your lifestyle. Tell them you want to be the spry cool granny and have much running around to do! Babies to chase and spoil! Altho if I could just sit back and rock in a chair most of my day I don't think I'd mind that. 
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Michael Murphy
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« Reply #3 on: January 19, 2016, 04:59:52 AM »

I know how bad low BP can feel,  I hope the echo echo come out ok, i hope the BP is fixed with the medicine,  you are important to a lot of people who use this site.  My guess is you don't often hear how much it means to so many.  Please be well we need you.
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cassandra
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« Reply #4 on: January 19, 2016, 01:47:57 PM »

Good luck tomorrow kitkatz

    :grouphug;      :grouphug;



Love and luck, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Vt Big Rig
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« Reply #5 on: January 19, 2016, 05:48:50 PM »

Good Luck in the morning. Good Numbers!!
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
PatDowns
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« Reply #6 on: January 19, 2016, 08:37:00 PM »

Midodrine can be a nasty med.  I know from personal use.  I went through about a one year stage of having extremely low BP - both off and on dialysis.  Had all the tests and only explanations offered were venous pooling and a symptom of long term dialysis (20+ years).  Was started on low dose Midodrine - 10 mgs. x 3 daily.  Within a few weeks I was up to 60 mgs. a day with my BP only going up to 80s/50s and feeling worse.  Dug deeper in researching.  Found out that low BP can also be a symptom of fluid overload in dialysis patients.  Even though my lungs sounded clear as a bell and not showing any edema, the extra fluid was collecting in my abdominal area.  I decided to stop taking the Midodrine and began to SLOWLY challenge my dry weight.  Within 8 weeks I had lowered it by 4 k (which was scary in itself because I only weighed around 65 k to begin with).  NEVER experienced cramping and by the time I quit challenging, my BP was staying in the 104/64 range with a heart rate running 75-88, both on and off dialysis.  Going on 5 years now.  Something to think about and see what your neph thinks.

Also, don't be surprised if the results of your echo show "moderate to severe" mitral valve regurgitation.  In my situation, the cardiologist said it wasn't uncommon if the heart was having to pump extra fluid in the body.  He also suggested challenging my dry weight and repeat the echo in four months.  However, the difference between the two of us - I haven't experienced heart problems while you have - may make this a moot point.  But still, bring it up to your cardiologist if this shows up.

Wishing you the best - PatDowns.
« Last Edit: January 19, 2016, 08:40:50 PM by PatDowns » Logged

Frank Moiger aka (previously) NoahVale and now PatDowns, the name originally chosen by a good dialysis mate who died in 12/2013.  I started in center hemodialysis as a 22 y.o. in 1978.  Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant.  Former Associate  Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6.  Self-employed since 1993.

Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600 
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
talker
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« Reply #7 on: January 20, 2016, 09:53:23 AM »

My BP is low again.  The doctor says it is caused by my leaky heart valve and pulmonary hypertension.  Seems dialysis attempts to bring everything back into hemostasis and the blood pressure crashes.
Midodrine is to be picked up tomorrow from the pharmacy and taken two times a day to help with the low BP.  Here we go again.
That all goes well for you.

When I first started experiencing LBP (low blood pressure) upon standing up after dialysis, I used certain mental techniques to quickly overcome it.
Gave it no further thought, as I had heard it was one of the dialysis side affects. This was about eight months or so into receiving dialysis. Was around this period of time on dialysis that LBP started while I was two hours into a session.
Being a newbie with dialysis changed rapidly into hours of dialysis research. The usual too much to fast came up, pump speeds, along with hours and length of dialysis sessions, were things that came up.
Upon speaking to the nephrologist, Midodrine came up. Looking at possible side effects I decided, 'who needs that kind of possible reactions'.

Recalling my decades past, protocols, for working outside under hot suns that caused people to 'pass out' or even 'pass away', I went into my files to refresh my memory banks.

Up came Cayenne, yup, common red pepper.
Ha, I mixed it (red pepper) with water and drank it. Did it work? Absolutely, and I worked under hot suns, sweating away and enjoying what I was doing, even in the face of warnings, that it could be fatal.

Where is this discussion headed!

Not so much the 'what of it' as the 'why of it'. (Wont bore you with the details.)

The 'why of it', was how red pepper handles all blood pressure.
-----------------------------------------------
(my notes)
Cayenne (red pepper)should be used by anyone who has problems with the heart or blood pressure. It is beneficial to both. Cayenne pepper helps blood pressure regardless of whether it is initially high or initially low. It relaxes blood vessels, while causing the heart to beat more efficiently.
------------------------------------------------
Long story short, I started carrying a two ounce bottle of Cayenne (red pepper) with me to my dialysis sessions.
When I feel a LBP event is going to hit me, I squirt a dropper full of red pepper directly into my mouth. In seconds my blood pressure normalizes and goes up.
Not every dialysis session has LBP events, but I'm prepared for any that do show up.

Oh by the way, a cautionary note here.
I did decades ago learn that one does not just pop red pepper into the mouth or even a loaded gelatin capsule, without some  uncomfortable consequences.
You start out gradually, and increase the amounts slowly,
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Be Well

"Wabi-sabi nurtures the authentic by acknowledging three simple realities: nothing lasts, nothing is finished, and nothing is perfect."

Don't ever give up hope, expect a miracle, pray as if you were going to die the next moment in time, but live life as if you were going to live forever."

A wise man once said, "Yesterday's the past, tomorrow's the future, but today is a gift. That's why it's called the present."
nursey66
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« Reply #8 on: January 20, 2016, 10:21:34 AM »

My hubby had low BP issues when on dialysis , the Neph had him take Midodrine about half way through the session, and that prevented it. I did not hear about any bad side effects , of coarse you have to be able to monitor your BP when you get home from dialysis. He also had Lopressor to bring it down if it got too high, but that was never an issue. Sometimes he only took half a Midodrine pill, depending on how the BP was at the time.
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Noeyjerd
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« Reply #9 on: January 26, 2016, 10:28:42 AM »

My bp is all over the place. One day it is 198/108. The next day it can be 101/60. Same meds each day. People's bp usually drop on dialysis? mine goes up.
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