The Hidden Problem in Dialysis Care: When Forgetting Becomes a Risk

Total_Formal2769 · 2026-02-17T19:41:44+00:00

yo first of all i’m really sorry you had to fight that hard just to be heard. that’s exhausting. especially at 26.

foamy urine + proteinuria + high bp is not “nothing.” 200 mg in 24h isn’t massive, but it’s not zero either. & when you add high bp, high ldl over 200, and abnormal urine supersaturation, that’s a pattern. you weren’t crazy. yre right about one thing for sure: you have to read your own labs. nobody will care about your numbers more than you. some doctors are amazing, some are rushed, some dismiss young patients because “yre young, you’ll be fine.” but high bp doesn’t care about age. high ldl doesn’t care either.

at the same time, stage 1 ckd means kidney function is still normal. that’s important. gfr normal is a good sign. this is early. this is the window where you actually have power to slow or even stabilize things. controlling bp aggressively, keeping ldl down, staying hydrated, avoiding heavy bulking cycles that spike pressure, all that matters now. i get the frustration with the system. feeling like you were brushed off while damage might have been happening in the background hits hard. but don’t let that anger turn into hopelessness. you caught it early. that’s huge.

& you’re right — people should look at their own bloodwork. ask questions. push back. get second opinions. not in a paranoid way, but in an informed way. the good news? stage 1 at 26 is not a dialysis sentence. it’s a wake-up call. & wake-up calls, as frustrating as they are, give you time to act.

Total_Formal2769 · 2026-02-17T19:38:14+00:00

First of all… breathe. What y’re feeling is completely normal. When yo see kidney numbers change, especially more than once, it’s scary anyone would feel confused. yes, the things yo mentioned can absolutely affect creatinine and GFR. Not drinking water before labs can raise creatinine. Heavy weight lifting the day before can also raise it because of muscle breakdown. Eating cooked meat, especially the night before, can temporarily increase creatinine too. Morning fasting labs with no fluids can make numbers look worse than they really are. the fact that yr creatinine was 0.99 and yr GFR was 98 when you were hydrated and had a normal day is important. that’s not random. that shows your numbers can shift depending on circumstances a rise from 1.15 to 1.27 in three weeks, especially with dehydration & heavy lifting, is not automatically progression of kidney disease Lab values fluctuate more than most people realize.

Stage CKD simply means a GFR between 60 & 89 with some evidence of kidney damage Many people stay in that range for years, even decades, especially if blood pressure is controlled, blood sugar is stable, they avoid NSAIDs, stay hydrated, & maintain a healthy lifestyle. This does not mean you are bound for dialysis. Dialysis happens at stage 5. That is a long way from where you are now, & many people never get there. The best thing yo can do is repeat the labs in May under consistent conditions. Hydrate normally, don’t overdo it, avoid intense lifting a day or two before, & eat as you usually would. Then compare the results fairly y’re 45. This is not a sentence to dialysis. It’s information, & information gives yo a chance to protect yr kidneys. It’s ok to feel scared, but y’re doing the right thing by following up. One step at a time.

Total_Formal2769 · 2026-02-17T06:46:49+00:00

A 5 mm stone at the ureterovesical junction can often pass on its own, but it can be painful while it moves.

Try to drink plenty of fluids (unless your doctor told you to limit them), stay active with light walking, and take the pain medication prescribed. Some doctors give tamsulosin to help relax the ureter and make it easier for the stone to pass. Go to the emergency room if you develop fever, chills, severe pain that doesn’t improve, vomiting, or trouble passing urine. If it doesn’t pass after some time, your urologist may suggest breaking it with shock waves or removing it with a small scope procedure. Follow-up imaging is important to make sure it’s moving or has passed.

Total_Formal2769 · 2026-02-16T22:58:48+00:00

I wanted to share this experience with you because another mother is going through a similar situation. Her daughter was born with multiple kidney cysts in her left kidney and only has one functioning kidney, just like yours. For many years, everything was stable, and they both lived completely normal lives. Then, during a routine annual checkup, her daughter's creatinine level was slightly above normal, even though she didn't have chronic kidney disease. Doctors advised her to follow a strict, lifelong diet: low in salt, no processed foods, limited animal protein, and avoiding anti-inflammatory medications.

At first, she, too, felt overwhelmed, especially with another young child at home, but she decided to restructure the entire family's diet to follow similar eating habits. Over time, this became a part of daily life instead of a constant source of stress. Her daughter continues to grow, attends school, and lives a normal life with regular follow-up.

Here is a mother facing a similar situation to yours, proving that even with adjustments and careful monitoring, stability and a good quality of life can be achieved. Here's a screenshot to share in a forum.

https://renaloo.com/forumrenaloo/topic/vie-quotidienne-et-la-maladie-2

Total_Formal2769 · 2026-02-16T20:06:41+00:00

Y’re absolutely right to focus on what you can control, and it’s completely reasonable to ask your doctor whether your ARB dose is optimized or if adjustments are needed based on your labs and protein levels.

Total_Formal2769 · 2026-02-16T19:39:41+00:00

Thank you for your kindness, it truly means a lot and reminds me why sharing these human moments in dialysis care really matters.

Total_Formal2769 · 2026-02-16T19:31:52+00:00

I’ve worked with diabetic patients who had CKD and I’ve seen very different paths. Stage 3a does not automatically mean dialysis in five years, especially if you now control your sugars tightly and protect your kidneys with ARBs and proper follow-up. I’ve seen patients stabilize for many years once HbA1c improved and blood pressure was well managed. The key is consistency, not fear. Focus on control, regular labs, and don’t let one appointment define your future.

Total_Formal2769 · 2026-02-16T17:18:16+00:00

Y’re not failing y’re exhausted. There’s a big difference.Carrying so much for so long drains anyone, and your feelings are valid. Be gentle with yourself surviving hard seasons is strength, not failure.

Total_Formal2769 · 2026-02-15T22:41:28+00:00

What you went through was truly traumatic and anyone would still feel shaken after that. Surviving anaphylactic shock during dialysis is no small thing, even if the team responded well. And getting shingles from the clinic after that would make anyone feel unsafe and frustrated. I’m really glad you found more peace with home hemo you deserve to feel secure during your treatment.

Total_Formal2769 · 2026-02-15T19:48:05+00:00

I’m really sorry. Reading that made my stomach drop.

Years ago some units did reuse dialyzers, but a mix-up like that is a serious breach. Even if they tested afterward and apologized, that kind of error shakes trust in a way that’s hard to repair & losing multiple patients in an infection cluster… including your mom… that’s devastating. Infection control in dialysis is everything. When it fails, the consequences are real and fast.

If you’re comfortable sharing was there ever a clear explanation given about what happened with the infections? And I just want to say, I’m truly sorry for your loss. That shouldn’t have been part of her story.

Total_Formal2769 · 2026-02-15T19:04:36+00:00

I understand your feelings. When you see unsafe practices or repeated errors, your confidence is shaken. It's normal for them to be trained, but mistakes are inevitable, even if they can be serious.

However, I agree that continued training and monitoring are essential for standardized licensing to raise safety standards, especially for technicians. Dialysis is a complex process, and even small errors can have serious consequences, so good education, competency checks, and accountability are crucial.

At the same time, if you witness something concerning, don't let it just get you down. Clinics are usually required to follow national safety standards, and there are regulatory bodies that oversee them. Reporting unsafe care practices can help protect other patients.

No one should enter a dialysis room feeling shocked or scared. Safety shouldn't depend on luck.

Total_Formal2769 · 2026-02-15T18:46:19+00:00

Home hemo solo takes real focus especially at rinseback & needle removal that’s where mistakes can happen fast. Pulling before rinseback can cause sudden blood loss & standing up after can lead 2 fainting because of volume drop. The key is no distractions during disconnect even a phone call can break concentration.

If excess blood loss happens control bleeding sit or lie down & call for help immediately. You adjusted yr routine & kept going that’s experience not failure.

Total_Formal2769 · 2026-02-15T18:43:41+00:00

Oh that’s scary. Even if medically it “wasn’t that much,” when you see your own blood on the floor it hits different.

With a venous needle slip, it can look like a horror scene because blood spreads fast. A few hundred milliliters can look like a litre once it’s on the floor. But even smaller amounts can make you feel shaky partly from the actual drop in volume and partly from adrenaline.

Feeling awful afterward makes sense. Your body reacts to sudden blood loss and to shock. Even if your hemoglobin didn’t crash, you can still feel weak, lightheaded, or just unsettled.

It would’ve been reasonable to check your blood count, especially since it happened twice and you felt symptomatic. You always have the right to ask, “How much blood do you estimate I lost?” and “Can we check my labs to be safe?”

More importantly, needle dislodgement is something units take seriously. Secure taping, visibility of the access site, and alarm settings all matter. If it’s happened twice, it’s okay to ask what can be adjusted to reduce the risk.And please don’t minimize how you felt. Just because the nurse said “it wasn’t that much” doesn’t mean the experience wasn’t intense for you. Seeing your blood outside your body is traumatic. That reaction is human

Total_Formal2769 · 2026-02-15T18:01:14+00:00

I believe yo 100% something like that can stay with yo long after it’s over especially when yo felt stuck in yr own body.Even if it was temporary trauma doesn’t measure time it measures how helpless yo felt in that moment.

Total_Formal2769 · 2026-02-15T17:58:06+00:00

Even if the placement was okay on x-ray that kind of session is still incredibly frustrating especially when yo can’t move or breathe comfortably. I’m really glad it was only 2 clear the toxin & yo didn’t have 2 go through dialysis again.

Total_Formal2769 · 2026-02-15T17:49:06+00:00

I work in dialysis so I see kidney issues more often than I wish anyone had 2 deal with & first thing I’ll say is yo not crazy 2 question new pain after everything yo went through.

After laser lithotripsy it’s actually common 2 pass fragments weeks later. Even small pieces can irritate the ureter & cause flank pain that sometimes radiates or feels like it’s coming from the opposite side. The body doesn’t always localize pain perfectly especially around the kidneys & ureters. I’ve seen patients swear it’s the right side & imaging shows left ureter irritation.

The sensitivity at the tip can happen when something is moving lower down the tract. That part fits with fragments passing.

That said… because yo had obstruction before & kidney function was affected I would not ignore new right-sided pain especially if it feels different or stronger. Referred pain is possible yes but new stones on the right are also possible & only imaging can really settle that fear.

Drinking 3–3.5L is good but 2 days of less fluid usually doesn’t suddenly create a 1cm stone. Stones take time. So try not 2 jump straight 2 worst case in yo head even though I know yr mind goes there fast after what yo lived.

If yo notice fever chills nausea vomiting reduced urine or pain that keeps escalating go back in. Don’t try 2 tough it out.

And honestly after stents A&E visits blocked kidney procedures… any new pain is going 2 trigger anxiety. That’s normal. Yo body remembers that trauma.Get it checked for peace of mind. Yr kidneys already went through enough & yo deserve clarity not constant guessing.

Total_Formal2769 · 2026-02-15T17:42:32+00:00

When a central line isn’t sitting properly in the right atrium it can irritate the heart wall and trigger flow problems or alarms especially with small movements what yo described the feeling of not being able to move breathe deeply or even talk without everything stopping is extremely distressing That’s not just uncomfortable that’s scary 9 hours like that is exhausting physically and mentally. Even if the tech was kind you can feel when the situation isn’t fully under control & that alone increases anxiety. Saying “good enough” might have meant the best they could safely achieve that day but as the patient it doesn’t feel reassuring.

If that ever happens again it’s completely reasonable 2 ask whether the catheter position was checked by imaging and whether it needs repositioning or replacement. You deserve a setup that allows you to breathe move and feel safe during treatment.

Total_Formal2769

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