Low blood pressure

[Dialysis Queen]

Hi I am a bit worried... I am a kidney patient with FSGS - been on dialysis for thirteen years now plus some more interspersed between two transplants. Lately, my bp has been pretty low both pre and post dialysis. It's about 110/60 pre dialysis and can drop to as low as 68/29 while on the machine (that was the lowest!) My weight is stable so I don't think I am dehydrated but I know that dialysing for a long time can put a strain on your heart and I am worried that my heart might be getting tired?

A long time ago I used to run really high blood pressures so don't know what could be the cause. I am seeing my consultant soon so will discusss with him. My ECG's that I have had all show regular rythm etc so just a bit puzzled.

Maybe I am just really laid back and stress free ! I doubt it !

Anybody else noticed this with your bp ?

Dialysis Queen.

[amanda in CA]

Just out of interest, have you had a course of steroids recently? I had really high blood pressure, then following a course of steroids, it has been low ever since, to the point that I have collapsed on a couple of occasions. I would be interested to know, because the doctors denied that the steroids had damped down some sort of inflammatory process that was causing my elevated blood pressure.

As to how to deal with it, maybe you are taking off too much fluid and dehydrating yourself. That seems to account for my very low blood pressure episodes.

[Angel]

Hi Dialysis Queen.

I have the exact same thing and mine also followed extremely high blood pressure. My levels can be pretty similar too yours and when it first started I was put through a barrage of tests to try and find the cause of this and nothing showed up at all. I have since learned there is a rare condition that us long term patients can get which affects the nervous system and unfortunately the only known cure is a transplant as that seems to reverse the problem-this is not something I have been able to try but it was my nephrologist who told me this and I pretty much trust he knows what he is talking about. The only things I have found that help is a drug called Midodrine but that has to be prescribed by a hospital doctor as it is unlicensed-this may have changed now as I have been on it for a long time. I also notice that if my Hb and/or my epo dose are on the high side this also helps but this is not a treatment they can keep up as it can be dangerous for the fistula.

One other thought is that I assume you are on haemodialysis and I wondered if you had a blood volume monitoring system at your unit. That could initially check your fluid levels and then the next point of call can be a chat with your nephrologist to sort out where you go next.

Good luck getting it sorted.

[JMan]

I tend to have low, but often low normal BP, I tend to feel pretty dizzy, faint, yucky if it drops, however a packet of doritoes usually sorts it out. I'm so used to not having salt, that sometimes that might be the cause for me anyway.

There is a conductivity test they can do to establish your dry weight if your dehydrated or over hydrated. As Amandas mentioned the amount of fluid can be an effect as well, I don't tolerate much above 2 litres, 3 at the most, and avoid it if I can.
I've already had 1 scare when I lost weight, ended up overloaded, with higher BP and the cardiologist started talking about heart valve replacment. Freaked me out, and no thanks! Amazingly my heart recovered once the fluid was removed.

My consultant prefers me to have a higher Hb round about 11ish, as he knows I function well on it.And it probably puts less stress on my heart. I've found that I can reduce my BP within minutes if its a bit high (occasionally it is), and bringing it up if I move about a bit, or think of something that's likely to put BP up, excitment or anger seems to work. LOL
Any exercise that normalises BP and is good for the heart, like swimming is likely to help, but obviously I wouldn't recommend swimming with a very low BP.
13 years is quite a while, to say the least...

[Angel]

The other thing you could try if you are on haemo is to have the temperature on the machine lowered-sorry forgot I also have this until today. Although my BP is low all the time this stops it dropping so much during dialysis so I have less of those awful drops down that haemo can induce.

[JMan]

@Angel, so that's why they do it. It never made sense to me before now. No wonder most of the patients come in with huge bags with rugs and blankets. I think they run the machines at 36 or something.
I've been at the unit once a week for IV, Vanc so noticed! I hope things are OK in sunny Somerset.

[Dialysis Queen]

I just wrote a long reply....submitted it and it disappeared !! Feeling a bit frustrated now I will keep this reply shorter in case it vanishes again.
Thanks to all who answered. Gives me a lot to think about. I run my machine at 36 degrees so any lower and I think hypothermia will ensue!
I think one possiblility is the scales at the unit are not calibrated often enough and hence give the wrong readings, maybe making it seem like there is more fluid to take off than there is in reality. I have asked them at the unit to increase the frequency of calibration but it is all to do with saving money. SO ....I am thinking of taking my own scales to the unit in future as they will be more likely to be accurate.

Like I said earlier I am seeing my doc in April so will go over everything with him then. He will be able to tell if I am dehydrated or not so will take it from there.

Once again thanks for your answers and at least the good thing is that my bp is not running dangerously high. I know what a hard balance is to get with everything and maybe my bp will get back on track sooner rather than later.

Sometimes maybe I try to be too ambitious and take off too much fluid. I know last Thursday I got severe cramps and I am not as young as I used to be (43) so perhaps my body just can't tolerate so much now. However, that does not explain the low bp pre- dialysis.

I will talk it all over with my doc next month.

Thanks all.

Dialysis Queen

[Dialysis Queen]

Weirdly , my BP was normal pre dialysis , during dialysis and post dialysis on Tuesday ! WAHOO !
I have been an inpatient twice since Christmas so just wondering if my bp has been low due to my body recovering from the illnesses that kept me in? Due to being ill, I have also been a bit low in spirits since the New Year so maybe that has a bearing on how your bp reacts...for instance if you are angry it goes up so maybe it IS to do with how I have been feeling. I was much happier in myself on Tuesday and this reflected in my bp. So I think I may have stumbled upon the reason for the low bp. I was low so my bp was too! I need to cheer up ! lol.

Dialysis Queen - thanks for all your answers. If it does continue to stay low I will talk it over with my nephrologist.
XX

[sweetiex]

hi my hubby has been having low blood pressure issues as well,in general he has this problem anyway,especially if he gets an infection or becomes unwell,this past week he has been going on low and coming off really low,i go with the higher number the top one usually goes on at 110 with fluid onboard,anything around a litre and a half to 2 litres coming off,at the end of the treatment its usually around 93,this past week though bp at 102 with fluid coming off and today 80 after treatment,which took ages to come up to 93,around half an hour,sister in charge wants him to see his gp as she insists its not the dialysis ,my hubby is a heart transplant patient so have to be on the lookout,he has been thirsty lately and does tend to snack quite a bit,related to whats going on i dont know,the scales are dodgey at the unit,the ones you sit on,quite a few patients complain about them not being right,they are going to do a bvm on him next week,to check see if theres fluid issues or its something else wrong

[Pam]

Hello Dialysis Queen!
I recently had a bad bout with a virus and was in the hospital twice. When I was home after the first hospitalization, I became extremely dizzy every day. I would lie down and take my b/p-it got as low as 70/56 and I had trouble walking across the room. My mother had to help me walk. Everyone assumed it was dehydration, but as a PD patient, I have little fluid restrictions and was drinking enough. All the docs were confused as to what it could be making my pressure drop so low.
Finally they figured out that I was anemic! I received 4 units of blood in all and guess what? No more b/p drops, light-headedness or any symptoms! With the first transfusion, my hemoglobin was 4 and the second, it was 6.
Has your doctor checked to see if you are anemic? You'd think it would be obvious for them to check, but sometimes they overlook a simple thing like that.
Take care,
Pam

[Dialysis Queen]

Hi Pam,
Thank you for your post. Strangely - I am not anaemic. My hb is 13.5 ! Because I have four kidneys - (admittedly none of them work ha ha) I have my two native kidneys and my two failed transplants inside me and they say that the kidneys are making HB for me - Whoopee at least they are doing something right!
So the bp being low is not down to anaemia. Interestingly though you did mention having a virus, well I was in hospital over Xmas with swine flu and I am wondering if it's the outcome of having that.
I am not too worried about it only when it drops on dialysis because that can be quite scary as it already low before I go on.
Like I said , I am seeing my consultant this month so maybe answers will be forthcoming then.
Also the scales at the unit are still well dodgy!
TTFN

Dialysis Queen. x

[Dialysis Queen]

Update for you. My Neph said that it "quite normal" to see patients who have been on dialysis for along time run lowish blood pressures. I don't know why this should be. Having been on dialysis 13 years now - I must be "quite normal".
He did detect a slight heart murmur when he examined me on Tuesday and I am hoping this was just down to running a high potassium and nothing serious.
I feel fine in myself so I am not going to worry too much

Wishing you all a happy Easter.

Stear clear of the Easter eggs as they are high in potassium!!

Bye for now.

DQ x