Phosphate binder, not so good : my boyfriend... - Kidney Disease

Kidney Disease

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Phosphate binder, not so good

Justicelover profile image
16 Replies

my boyfriend was diagnosed with kidney failure in August 2019 and since he got into Davita dialysis a month after, they prescribed him this pills 3X 3 times a day with every food to block the potassium since the kidneys supposedly weren’t working ok, he did so, and he never failed getting them, but, on January 2024 he got a stroke, and he spent one month at the hospital, and I asked the doctor he was in need of those pills and he said not, until the blood test showed some high potassium, so he didn’t get any the whole month and after being discharged he never took them before since he was tired of so many pills prescribed, but we were monitoring the potassium levels and he never needed, apart of tired, this medication gave him most of the time diarrhea, my conclusions, don’t get as many pills as they want to, just keep monitoring your own health by yourself, sometimes I asked for results and they didn’t provide me with those, they’re just trying to get advantage of the medical

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16 Replies
Bassetmommer profile image
BassetmommerNKF Ambassador

First of all, sevelamer is for phosphorous, not potassium. And it blocks you up, so I am not sure that was causing the diarrhea. He may have had high potassium as well, but that is a different binder. So sorry about the stroke. Hope he is better.

Justicelover profile image
Justicelover in reply toBassetmommer

Phosphate binder to control serum phosphorus but they said it is for both, potassium and phosphorus

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Justicelover profile image
Justicelover in reply toBassetmommer

he’s not better, he passed away 2 weeks ago, but thank you for the comment

Beachgirl32 profile image
Beachgirl32 in reply toJusticelover

I’m so sorry for your loss . I know this is hard on you and not getting answer prayers lifted to you and your boyfriend family . Yes we have to be advocate of our on health you are so right there.

Justicelover profile image
Justicelover in reply toBeachgirl32

🥺🥺 he sadly passed away 2 weeks ago, that’s why I want to help people and let them know so they can leave healthier and longer

missdc profile image
missdc in reply toJusticelover

I know you want to help people but we, as kidney patients, need the medications doctors prescribe. Kidney failure leads to death, taking people off of meds can shorten our lives considerably. Please leave helping kidney patients to the doctor himself/herself and allow yourself time to grieve

missdc profile image
missdc in reply tomissdc

I am also very sorry for your loss. I live with 2 kidney diseases, and I was born with one kidney. I say let doctors do the prescribing bc every kidney patients is different. I need different help than others, yet in 2018 I didn't know I had kidney disease at all.

My body was hiding the fact that I had one kidney until I had ckd from the difference.

Fast forward to today, and I've been diagnosed with a second kidney disease called renal tubular acidosis (RTA). And I've had both my whole life. If I try to self-medicate, I can also get build up or life-threatening kidney stones. It's all based on my diet, I can't eat a lot of greens. Because of this, I will eventually have an imbalance one day and rely on modern medicine to fix it.

But until then I take sodium bicarbonate to prevent my blood from being too acidic from the RTA.

Justicelover profile image
Justicelover in reply tomissdc

I’m sorry to hear about your situation, is very rare that you can not get greens, 🤔 but I think every body is different, for my boyfriend we had some hope, I think your situation is very different from some others, hoping the best for you.

Pisces101 profile image
Pisces101

I am so sorry for your loss❤️. Your message is important: we need to know why meds are prescribed and if they’re really necessary. Too many people have taken too many meds. I hope your road ahead won’t be too bumpy, finding your way without him. Take care!

Justicelover profile image
Justicelover in reply toPisces101

Thank you, for the condolences, it is very hard, 😞 but know I want to make and awareness and help people to understand better this disease and they can get better treatments and better health

drmind profile image
drmind

So sorry for your loss. Sending some prayers and hugs that your have some family and friends close as you journey through your grief.

Justicelover profile image
Justicelover in reply todrmind

Thank you for the condolences, I really appreciate it

Bassetmommer profile image
BassetmommerNKF Ambassador

I am sooo sorry for your loss. And you are pretty wonderful to be so supportive, even now. Best to you.

Justicelover profile image
Justicelover in reply toBassetmommer

Thank you so much, I think most people from here, is concerned about me more than the people from his dialysis, nobody has called me yet to say “I’m sorry for your loss”

TDPowers profile image
TDPowers

So sorry for your loss. Could I ask do you think it was the phosphorus binder that caused the stroke? Did they give you the answer to the cause of death? Thank you you

Justicelover profile image
Justicelover in reply toTDPowers

I think the binder just complicated a lot of things, this pills in order to work usually gives you diarrhea, is not that is a binder but since you don’t have to much time the food in your stomach, you don’t allow the body to absorb a lot of stuff in your blood, in his case, he was most of the time in the restroom after eating, from that, it was difficult for him to gain weight, and he was with anemia as well, we think he got the stroke because of the high blood pressure, and we don’t know the cause of his death, but they just assumed it was all for the comorbidities and they didn’t want to do any further exams, but at the moment of his death, he had kidney failure,high blood pressure, anemia, edema, ulcers, water in his lungs, water in his heart, possible heart failure, red and white blood cells low, and at the beginning of the dialysis he just went there because of a shock for the kidneys, he didn’t have any of this diseases but after dialysis

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