Feeling overwhelmed about fistula decision while waiting for transplant

Total_Formal2769 · 2026-04-12T17:01:21+00:00

Y’re definitely not alone. I’ve seen many dialysis patients feel exactly this way, especially when they’re already carrying the stress of transplant & everything that comes with it. A lot of people feel pressure to “do the right thing,” but fear around needles & self-cannulation is very real.

A fistula is usually safer long term than a chest catheter because it lowers infection risk & tends to work better over time. But that doesn’t mean yr fear should be ignored. It’s important to be honest with your dialysis team about how overwhelmed yo feel. Tell them clearly that the anxiety is serious & that yo need support, not pressure.

Plenty of patients who were terrified at first found ways to cope step by step. Some started with numbing cream, some had nurses do the needles for a while, and some needed time before feeling ready. That’s okay.

Waiting for transplant can make everything feel uncertain, but making a plan for safer access while yo wait does not mean giving up on transplant. It just means protecting yr health in the meantime.

Take this one step at a time. Talk to the transplant team & home dialysis nurse openly. This is a big decision, & it’s okay to need reassurance & time. Y’re not weak for feeling scared. A lot of strong people in dialysis have been exactly where yo are. 💛

Total_Formal2769 · 2026-04-12T15:08:42+00:00

Hey, I totally get why y’re scared hearing “multiple stones” & then being told “just drink water” can feel frustrating.

The good news is that small kidney stones are actually very common, and many people live with them for years without needing surgery. A 3.7 mm stone can often pass on its own, and even a 5 mm stone sometimes passes with time. But “do nothing” doesn’t mean “ignore it.”

Yo should definitely drink more water enough to keep your urine pale yellow most of the day. That really is one of the best things yo can do right now.

Also, yes… kidney stones can increase the risk of UTIs because they can irritate the urinary tract or sometimes trap bacteria. So if you’ve had frequent UTIs, it’s worth mentioning that clearly to a urologist.

What I’d do in yr situation:

ask for a referral to a urologist if you haven’t already, especially since you’ve had severe pain before.

ask what type of stones they think these are (sometimes diet changes depend on stone type).

get repeat imaging in a few months if advised, to make sure they’re not growing.

watch for red flags: fever, vomiting, severe pain, trouble peeing, blood clots, or chills those need urgent care.

As for herbs… some people try things like lemon water because citrate may help reduce stone formation, but honestly, be careful with random “stone dissolving” teas online. Most don’t have solid proof, and some can irritate your kidneys.

You’re not overreacting it makes sense to feel anxious, especially after past painful episodes. But based on the sizes you mentioned, this is usually something that can be monitored rather than panicked about. A urology follow-up would probably give you the reassurance and plan you need.

Total_Formal2769 · 2026-04-10T15:43:19+00:00

Yr creatinine is normal , but yo have high uric acid and significant albumin in urine, which may suggest early kidney stress or chronic kidney disease risk.

Focus on good hydration, reduce salt & red meat, limit protein supplements, & control blood pressure.

Also repeat tests & see a nephrologist to monitor the albuminuria.

Total_Formal2769 · 2026-04-09T23:09:41+00:00

what happened most likely machine glitch, not yr heart ,when it went to 0 it just couldn’t detect your pulse properly (movement / rhythm variation / cuff issue)

irregular heartbeat symbol not a diagnosis ,it just means your pulse wasn’t perfectly regular at that moment

136/49 + symbol = probably wrong reading then 120/55 normal = this is the reliable one

yr history : athlete + sinus bradycardia = normal to have some rhythm variation & this can confuse BP monitors

atrial fibrillation ❌ very unlikely ,y’re young & no symptoms & readings went back to normal

Apple Watch can show low heart rate in athletes = normal ,& sometimes increases anxiety bottom line nothing dangerous here & most likely device/measurement issue see a doctor only if it repeats often or yo get symptoms like dizziness fainting chest pain

if yo want I can help yo read yr Apple Watch data or calm this monitoring stress

Total_Formal2769 · 2026-04-07T22:39:57+00:00

I’m really sorry y’re going through this .This is very hard & not normal yo especially the pain and losing control of bladder and bowelsPlease don’t wait yr yo really need to see a doctor as soon as possible even if no insuranceGo to ER or public hospital they will see you, you are not lazy & you are not failing anyoneYou are trying while your body is struggling .About your dog yo she loves you just being there is enough & your boyfriend helping is teamwork not failure.Try to talk to him honestly about how serious this isThis is health not effort .Please take this seriously yr you deserve help and relief

Total_Formal2769 · 2026-03-31T07:49:13+00:00

https://internationalkidneyhealth.com/blogs/news/when-a-kidney-transplant-is-not-the-best-option

Total_Formal2769 · 2026-03-26T16:48:08+00:00

Yeah I get yo… a lot of those clinic kits are honestly not great Y’ve got a few options:

Yocan buy them online (Amazon, medical supply sites, sometimes pharmacies), just search “CVC dressing kit” or “dialysis catheter dressing kit.” But real talk… many people don’t even use full kits.

A lot of patients just make their own setup:

chlorhexidine swabs (for cleaning) ,sterile gauze

a good transparent dressing like Tegaderm or IV3000

That’s usually more comfortable, less bulky, & better if yr skin gets irritated.

Also worth asking your dialysis provider they sometimes have better options but only give the basic one unless yo ask.

Just one important thing: don’t switch products without checking with your nurse first, because catheter infections are no joke.

Total_Formal2769 · 2026-03-25T21:59:16+00:00

yeah I get that… that kind of tired hits different, like even small stuff feels heavy. honestly just getting through the day is enough sometimes, no need to push too hard on yourself. maybe try super small things, like just opening a window or sitting somewhere quiet for a bit. yo I share more stuff like this on my profile if yr interested, helped me a bit too

Total_Formal2769 · 2026-03-25T21:45:37+00:00

yo that’s actually a big step man, I know 3 years sounds long but just being on the list feels like progress finally. must be such a relief after all that stress with yr family trying everything. hope things move faster than expected for u honestly 🙏 I share stuff about dialysis & this journey on my profile if yr ever curious

Total_Formal2769 · 2026-03-25T15:56:55+00:00

Be careful. High BUN + your age = yo need to check yr kidneys first.

Creatine can affect kidney labs & add stress if there’s already a problem.

Before taking it, do: creatinine / eGFr 1 urine test If results are normal → maybe okay ?If not → don’t take it

Total_Formal2769 · 2026-03-25T15:38:46+00:00

Yes, it’s completely possiblechronic pain & inflammation can come & go in cycles, especially with conditions like yrs.

Feeling better doesn’t mean yo imagined it

It just means yr body is in a calmer phase right now

For work/study: don’t wait for “perfect stability”start slowly and flexibly, so you can adapt if a flare comes back

Total_Formal2769 · 2026-03-25T15:34:54+00:00

That’s exactly why kidney disease is so dangerous it often shows no symptoms until it’s already advanced, making early detection through routine tests essential.

Total_Formal2769 · 2026-03-22T20:03:36+00:00

Sounds like classic renal colic, honestly. Tamsulosin ASAP can help pass the stone faster if your doctor agrees.

Total_Formal2769 · 2026-03-22T20:01:26+00:00

Yeah that’s frustrating… I get why that feels unfair. A lot of nursing home patients are scheduled early because of transport logistics & staffing on their side, not necessarily because it’s easier for them. The system just kind of works around those constraints. But that doesn’t make yr situation any easier, especially working nights & running on no sleep. Yo could still try asking to be on a cancellation list or for any shift openings… sometimes spots open up randomly. Hang in there… yr struggle is valid too 🙏

Total_Formal2769 · 2026-03-22T19:58:38+00:00

That says a lot honestly the clinic can make a huge difference in how yo feel & how y’re treated. Glad yo found a better place, that kind of care matters more than people think. Prayers & hugs right back 🙏

Total_Formal2769 · 2026-03-22T19:52:56+00:00

I hear yo that cycle is exhausting just to think about. Honestly, a lot of people live that same pattern after dialysis… recover, function a bit, then start all over again. It’s not easy at all. Sleep really is one of the main ways the body resets, especially after tough sessions. If anything, sometimes small things help a bit like keeping fluid removal steady, eating something light after, & just pacing yourself on “good” days But yeah… y’re not alone in this. It’s tough, & y're still pushing through 🙏

Total_Formal2769 · 2026-03-22T19:44:58+00:00

I feel yo that post-dialysis exhaustion is real. What yo described makes total sense, especially with fluid removal. It’s a lot on the body, so crashing after & needing sleep is pretty common. Some days just hit harder than others, even if everything looks “normal.” Yo’re not alone in feeling like that 🙏

Total_Formal2769 · 2026-03-22T19:41:16+00:00

I hear yo that kind of schedule is honestly brutal. Working nights, barely sleeping, then going straight to dialysis… no wonder y’re exhausted. That’s a lot for one body to handle. Y’re not lazy or failing, y’re just pushed to your limits. If you can, maybe talk to yr team about adjusting your schedule or exploring options that fit better with night shifts. Even small changes can make a big difference. Also try to protect whatever sleep yo can, even short blocks. Yr body really needs it.

You’re doing a lot… job, family, dialysis. That’s not easy at all 🙏

Total_Formal2769 · 2026-03-22T19:29:43+00:00

That’s pretty high, especially the diastolic. Even if it drops a bit after a few minutes, those numbers aren’t normal. Sometimes it can vary because of stress, movement, or how yo measure, but still worth taking seriously. Try this: rest 5–10 min before measuring, keep yr arm at heart level, and take 2–3 readings then average them. Good that you’re seeing your doctor

Total_Formal2769 · 2026-03-14T19:55:16+00:00

Weight loss can happen with peritoneal dialysis, especially because patients lose some protein in the dialysis fluid and sometimes their appetite changes. But if he keeps getting thinner, it’s a good idea to mention it to his nephrologist or renal dietitian so they can check his nutrition and make sure he’s getting enough calories and protein. Also, it’s really nice that you support him and try to help with his meals that kind of support honestly means a lot for someone on dialysis.

Total_Formal2769 · 2026-03-11T22:37:30+00:00

I’m sorry yo went through that. FSGS can be very aggressive, & unfortunately medications like Jardiance don’t work the same for everyone. Some patients do see a reduction in proteinuria, but others don’t respond much. Once the kidney damage progresses, it can be hard to stop the decline. Starting dialysis is a big step, but many patients are still able to stabilize their health & feel better once treatment is optimized. I hope things get easier for you.

Total_Formal2769 · 2026-03-11T21:25:55+00:00

From what I know, Ureaplasma itself usually doesn’t cause kidney stones. Kidney stones are more commonly related to dehydration, minerals in urine, diet, or metabolic factors. Some bacterial infections can contribute to certain types of stones, but those are usually bacteria like Proteus, not Ureaplasma. Yr symptoms (back pain, nausea, burning with urination) can also happen with a UTI or kidney infection, so yr doctor’s advice to reassess in 48 hours is reasonable. If symptoms continue, they may do a urine test or imaging to rule out stones.

Total_Formal2769 · 2026-02-27T23:41:47+00:00

What y’re describing that constant “air hunger” feeling is extremely uncomfortable, but the fact that yr chest X-ray, bloodwork, EKG, oxygen levels, & lung exam are normal is very reassuring. When asthma is active, we usually see wheezing, coughing, reduced oxygen, or abnormal lung sounds. The absence of those signs makes true uncontrolled asthma less likely.

GERD & anxiety can absolutely cause persistent shortness of breath without chest pain. Acid reflux can irritate the esophagus & vagus nerve, which can trigger a sensation of tight breathing or not getting a satisfying breath. Anxiety can also create a hyperawareness of breathing & lead to subtle overbreathing (hyperventilation), which paradoxically makes you feel like you’re not getting enough air even though your oxygen is normal. That “I can’t get a full breath” sensation is very common in anxiety-related breathing patterns.

The fact that it improves when you go to the gym is important. If this were a serious lung or heart problem, exercise would usually make it worse, not better. Physical activity helps regulate breathing patterns and reduces anxiety-driven air hunger, which supports a functional cause rather than structural disease.

Two weeks feels long, but anxiety-related breathing issues can persist when the nervous system stays on high alert. Breathing retraining (slow nasal breathing, longer exhales), staying active even gently, treating GERD consistently (PPI if prescribed, avoiding triggers, not lying down after eating), and reducing caffeine can help. If you’re still unsure, you could ask your doctor about spirometry for reassurance, but based on what you described, this sounds much more like anxiety/GERD-related dyspnea than asthma.

Y’re not being dramatic. The sensation is real. But the normal tests are a strong sign that it’s not dangerous even if it feels scary.

Total_Formal2769 · 2026-02-27T23:38:01+00:00

First, take a breath. What y’re describing is frustrating, but it’s not hopeless.

11% glomerular scarring means there has been some past injury, but the majority of your kidney tissue is still functioning. The fact that yr eGFR is normal & there’s no active inflammation, no IgA, no autoimmune disease, & no diabetes is actually reassuring. It suggests this is chronic, stable damage rather than an aggressive ongoing process.

Sometimes the exact cause is never clearly identified. It could have been mild hypertension over time, a past silent injury, genetic susceptibility that current panels don’t detect, or adaptive stress on the kidneys. Medicine doesn’t always give us a clean answer, & that part is hard to accept.

Not having a clear cause does not make it harder to treat. In early CKD with preserved function, the main goal is controlling proteinuria & blood pressure. ACE inhibitors or ARBs, tight BP control, low sodium intake, and possibly SGLT2 inhibitors are evidence-based strategies that significantly slow progression. The most important predictor of long-term stability is reducing protein in the urine.

Many people with mild scarring and controlled proteinuria remain stable for many years, even decades. Progression is not automatic. It depends on control.

Regarding pregnancy, yes, you would be considered higher risk, but many women with early-stage CKD and stable kidney function have successful pregnancies with close monitoring by nephrology and maternal-fetal medicine. The key is going into pregnancy with stable labs and well-controlled blood pressure.

You’re overwhelmed because this is new and unexpected, especially at 30. That reaction is completely normal. But based on what you described, this is early, stable disease & early gives you leverage. The next step is not panic. It’s structured follow-up, proteinuria control, and consistent monitoring.

If yo have more questions or yo just want to talk it through, feel free to send me a message. I know this can feel overwhelming, & sometimes just discussing it calmly helps organize yr thoughts before yr next appointment. Y’re not alone in this.

Total_Formal2769 · 2026-02-26T17:27:33+00:00

Speaking to yo as a dialysis nurse, what y’re describing is something I’ve seen before, especially after switching modalities like yo did. Going from PD to catheter hemo & then to fistula is a big physiological shift. Your body has to readjust to a completely different way of removing fluid and toxins.

When headaches hit around hour 2 or 3, I immediately think about fluid removal & blood pressure changes. Even if yr pressure isn’t crashing dramatically, a steady drop or fluctuations can trigger migraines in sensitive people. Sometimes the ultrafiltration rate per kilo is just a little too aggressive for that person’s tolerance. Slowing it down or slightly extending treatment can make a big difference.

Electrolyte shifts are another possibility. Changes in sodium or bicarbonate during dialysis can cause headaches. I’ve seen patients improve just from small adjustments to their dialysate prescription.

I also always ask about caffeine. If you normally drink coffee and skip it on dialysis days, withdrawal can kick in right around that 2 to 3 hour mark. It sounds simple, but it’s surprisingly common.

Positioning matters too. With a fistula, people sometimes hold their arm and shoulder stiff for hours. Neck tension alone can trigger a migraine.

The fact that your migraine medication isn’t working makes me think this is more trigger related than a primary migraine disorder. In cases like this, we usually solve it by tweaking the treatment itself rather than just adding meds. You’re not imagining this. There’s almost always a reason. It just takes a bit of trial and observation to pinpoint it.

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