Don't be afraid to take matters into your own hands

It's unfortuneate, but with the health system in the USA, possibly in more areas, we have to constantly research and second guess our care providers. If you take your doctor's word for everything, follow their instructions to the last detail, you might find yourself fighting for your life. 

Lately I've become such an advocate for my own health care, that I check every result, every test, and question every decision made. Why? Because it saves my life! The latest example of this is proved by my blood test results yesterday. In my previous blood test last December, my potassium level was 4.3 which is perfect really. I had been down to 3.8 in the months previous, so I suggested a potassium supplement and was given 750mg daily. When I started having issues with electrolytes after taking Carvedilol, I suggested taking 2 potassium a day and luckily my doctor agreed. So that put me at 1500mg a day. Well... just before I started taking Entresto, I read that it can substantially raise your potassium level; so with that in mind, I asked my doctor if I should temporarily go off potassium for a month or so just to see what would happen with the Entresto. He said keep taking it..... and my instinct told me not to so I stopped the prescription. 

Well it's a good thing! I had my blood checked yesterday and my potassium level is at 5.0 which is higher and considering 5.1 is considered borderline high and you should take measures to lower it, I'm GLAD I listened to my self and didn't take potassium this last month. I could have ended up in the hospital with hyperkalemia. 

The good news is that my bloodwork looks better than it has, some numbers that were lower came up a bit, and some that were higher came down so my kidneys are functioning great, and I'm seeing improvements in my levels across the board. I'll watch my potassium rich foods for awhile and keep taking the same dose of Entresto until my potassium level drops a little. 

It's frustrating how we should second guess our care providers... and if we don't, we'll be the ones to suffer. Please take this message as a bit of advice and don't be afraid to ask for bloodwork. When you get the results, do your research to see what each thing means. Don't just leave it all up to your physicians. They have never sat down with me and discussed my results, not even once. If it's not life threatening at the time of your visit, it's put on the back burner and you never know what could be potentially a threat later. 

4 Comments

Self Reliance

by Gemita - 2024-05-01 16:38:22

Janene, it is reassuring to hear from you and to know that Entresto appears to be doing no real harm and your body is tolerating it well, at least at your current dose.

I have never been afraid to take matters into my own hands.  Today we are all living longer with multiple long term health problems, maybe having to take multiple meds and various treatments in order to stay stable and relatively symptom free.  Doctors are frequently expecting patients to monitor their own blood pressure, oxygen levels, glucose levels, heart rate/rhythm, carry out self catheterisation and things like this (I am already doing all of these things and more) and they would be all the busier without the patient getting involved.  It is almost expected of us today, so what you are saying is nothing unusual. 

I wish we had a simple machine to monitor electrolytes without blood testing, perhaps even a simple machine to measure kidney, liver and other important organ functions, so that we wouldn’t need to run to ER/A&E so frequently or struggle to get a doctor’s appointment.  Self monitoring of electrolytes could give early warning of a problem.  I am sure it will come!  Ultimately though we all benefit from having a caring doctor who will work with us, listen to us and help us to manage our condition as effectively as possible.  I am not sure that you have found such a doctor Janene but you are clearly benefitting from being able to rely on yourself.

Sources of Potassium

by Penguin - 2024-05-02 07:47:47

This link provides some useful information for lowering potassium levels in kidney disease.  

It might be helpful as it identifies the main dietary sources and gives advice re: moderation when kidney function is an issue. 

https://kidneycareuk.org/get-support/healthy-diet-support/lowering-your-potassium-levels/

Personally, I wouldn’t mess around with electrolyte management too much without medical advice. I’m sure it’s sensible to raise your concerns and to ask about causes such as medication (Entresto), but in my experience doctors don’t seem to worry about reference ranges hugely, until there’s a significant rise / fall above normal. Perhaps there’s a reason for that? 

I’m pleased you’re feeling better with the new drug regime. 

Penguin

by R2D2 - 2024-05-02 21:43:39

I understand what you're saying, but... electrolyte balance is SO important and yet none of my doctors concern themselves with it. Once your potassium is high, it takes awhile to lower it and in my serious condition, I can't afford to be lax about it, especially since the last time my levels were off, I got shocked. 

The nurse that did my blood work said it's very important to keep my electrolyte levels in check, and not leave it up to my doctor. The nurse that called me today said I was right to stop the potassium with my Entresto. 

So.... this is yet another example of why you shouldn't completely rely on your doctor for everything. They make mistakes, sometimes serious ones.

However, this latest mistake has my doctor on alert. Instead of waiting a year to see me, he's decided I need monitoring with my Entresto and made an appointment for June 12 to check my levels again since only 1/2 of the lowest dose raised my potassium by that much. 

Electrolytes

by Penguin - 2024-05-03 04:45:53

Hi Janene, 

Not sure I was in a great head space when I posted to you and my post is a little unclear. 

I agree that you did the right thing.  My point was supposed to be that advice re: lowering potassium levels on the kidney site / link that I provided needs to be followed with caution and ONLY if you have been advised medically to lower your potassium due to kidney disease. I think you said that your kidney results are good currently.   

I agree that checking info received from a doctor acts as a second back stop in case something important is overlooked.  However, there's a fine balance with electrolytes / meds etc. and  personally I'm not confident with messing around with that without medical supervision and someone qualified telling me what I can and can't do safely. 

 

 

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