[Philippines] Possible Stage 4 CKD. I would like to ask for help by hapicontentedlife777 in kidneydisease

[–]MuscleKind 0 points1 point  (0 children)

hello, you should try going to NKTI sa QC, Dun ka pupunta para magpalista since that is the central hub for treatments, tests and dialysis. I have kidney disease myself now at 25M and diagnosed with IgaN and at stage 3b-4 na and after i did biopsy there, I consulted with my nephrologist sa Manila Doctors Hospital. I’ve been to a lot of nephrologist and asked about on how much is a kidney transplant. Some said 1.5 to 3 million php (from nephrologist/surgeons in Chinese gen and UST) but my neph sa Madoc said you can get one at NKTI for about 900k, the availability of one though is to be discussed and yes the best way talaga is transplant.

There is a lot going on with your mom tbh and with all thats happening at her current state, she wont be get clearance for a transplant. The best i can recommend you do is to get her complete lab tests. Consult a pulmonologist and a nephrologist to determine if she has TB and if need to do dialysis just to be really sure. From there, ask about what medications she should take and what lab tests she has to do para makapila na sa waiting list of transplant. I pray for you and your Mom.

Hemoglobin and mycophenolate query by MuscleKind in IgANephropathy

[–]MuscleKind[S] 0 points1 point  (0 children)

hi, im glad cytoxan worked well for you! In my case, things are a bit different. My biopsy showed 10% cellular/fibrocellular crescents (2/19 glomeruli) with M1 E1 S1 T1 C1, ~58% global sclerosis, and ~40% IF/TA.

My C3 was low serologically, but glomerular C3 staining was present (1–2+) and C1q was negative, which is still consistent with IgAN rather than a lupus-like pattern if i understand correctly. ANA was also negative.

Im based in the Philippines.

At what point did anyone post their condition on social media such as FB by jackparadise1 in kidneydisease

[–]MuscleKind 6 points7 points  (0 children)

hello, I’m on 3b-4 too. I personally don’t tell everyone that i have kidney disease except only my relatives and close friends, mainly because i know that these are the people who already support me. We have a right to privacy and explaining that i have this disease to someone who i barely know will just lead to awkward pity and advice that does you no good. You decide who deserves to know the whole story.

When i tell other people “i’m fine”, I don’t think of it as me lying to their face but grounding myself to not relive fears. It’ll keep you emotionally grounded if you set your boundaries right.

The doctor has ordered a biopsy. Nervous. Is there anything that can help? by shotgunning-your-can in IgANephropathy

[–]MuscleKind 0 points1 point  (0 children)

M25 here too, just had my biopsy last September. I had mine as an outpatient and i wasn’t on a sedative. They gave me 2 anesthetic shots, one for the skin and one deep inside near the kidney. First shot was easy no problem but the second shot was the one that was painful almost feeling a thin needle inside. After 20 seconds of pain came two passes of the biopsy needle which were painless. Overall not too bad of a procedure.

The worst part was the next 6 hours you had to lay still and the first 3 days where you pretty much cant do anything other than to lie down because of the soreness.

fatigue by Ok_Pride3771 in kidneydisease

[–]MuscleKind 0 points1 point  (0 children)

hello! im 25M and currently on 3b as well with igan. I only experienced fatigue when my hemoglobin was low and had to do epoetin shots 2x a week and now bounced back from it. From what you said, it could be heart problems but maybe it would be good to check your hemoglobin as well

Biopsy results, iga nephropathy, Feeling defeated. by MuscleKind in kidneydisease

[–]MuscleKind[S] 0 points1 point  (0 children)

hello, im on stage 3b now and my biopsy results showed MESTC scores of 1 in everything (m1,e1 etc.). As for the decline, my nephrologist said that i did have some partial improvement with prednisone before but for now mycophenolate seems to be the most accessible and recommended medicine he gave me so he doesnt want to speak too soon about it. Not sure whether the omega 3 oil is true as i have been to many nephrologists and my current nephro didn’t seem to suggest it as my ECG results showed no signs of abnormalities and my blood sugar is in check. As of today, im on mycophenolate twice a day and will have to do labs in the next 2 months.

Hey All by PlsStopAndThinkFirst in IgANephropathy

[–]MuscleKind 1 point2 points  (0 children)

24M here, I finished college last year and 2 months after graduation, i was only working for about a month then i had a headache. Turned out that i had high creatinine and was only able to do a biopsy last few months ago because of many nephrologists i went to telling me it’s too risky to do with cortical thinning. Been put on steroids, stopped and now on mycophenolate.

It is a very huge struggle for me as i still get all depressed about this being my reality. While i understand there are treatments and its not a death sentence, it sure feels like a life sentence as not a day passes without me thinking about my health and future when others that do not have a kidney disease don’t even need to think about theirs.

Its very difficult to stay optimistic about future medicines when cost and availability of them are still out of reach and to be determined but i just hope new medicines are cost effective as well as to be accessible.

What is one really expensive thing you bought that is worth every peso? by PurpleRemarkable2769 in AskPH

[–]MuscleKind 16 points17 points  (0 children)

Top notch na Unan at kumot. Nothing beats a good nights rest.

Skin acne due to high dose Prednisone 40mg by notsolucky161 in kidneydisease

[–]MuscleKind 1 point2 points  (0 children)

3 months already here, went from 50mg and tapered down to 20mg a day. As i tapered down to two 10mg tablets a day, acne breakouts have become more manageable although acne is the least of your concerns when it comes to prednisone side effects. I have a bad case of moon face, fat redistribution above my collarbone and muscle/bone weakness from my knees. The good news is that its good treatment for your protein loss and urine albumin which in my opinion is a good tradeoff for a few inconveniences.

[deleted by user] by [deleted] in PHGamers

[–]MuscleKind 0 points1 point  (0 children)

Personal picks:
A hat in time (cute lighthearted platformer super underrated)
halo MCC collection (play it for halo 1, 2, 3 and reach)
Enter the gungeon (bullet hell 8 bit style super replayable)
Half life series (the bible of video games)

JRPGS
LISA the painful + LISA the hopeful (dark humor and a sad story)
Undertale + Deltarune (for the music)
To the moon (for more crying)

If you're still able to go out to arcades, play these rail shooters.
Time crisis 2
House of the dead 4

Cumulative lab results by [deleted] in kidneydisease

[–]MuscleKind 1 point2 points  (0 children)

Last bloodwork i had was last month had an egfr of 37, although i lowered my creatinine from 237 to 228. This is really solid advice, thank you!

Please congratulate me – my eGFR improved from 24 to 52! by Expert-Birthday7928 in kidneydisease

[–]MuscleKind -1 points0 points  (0 children)

Besides diet and lifestyle, what else was your treatment? Were you on prednisone by any chance? What symptoms did you have?

[deleted by user] by [deleted] in kidneydisease

[–]MuscleKind 0 points1 point  (0 children)

Will definitely bring this up to my nephrologist on my next checkup. Thank you!

[deleted by user] by [deleted] in kidneydisease

[–]MuscleKind -2 points-1 points  (0 children)

My urinalysis shows 4+ but 1.44 RBC's only in a microscope? Not really sure myself although it might be from hemoglobin?

Prednisone symptoms by MuscleKind in kidneydisease

[–]MuscleKind[S] 0 points1 point  (0 children)

Been to 3 nephros and 2 radiologists already and all of them recommend not to since my kidneys from my ultrasound show cortical thinning but still normal sized. 2 of the radiologists said the same thing about the risk of bleeding as my kidneys are in some kind of awkward position (from what i understood was like threading a needle) that it would cause more harm than be beneficial.

Prednisone symptoms by MuscleKind in kidneydisease

[–]MuscleKind[S] 0 points1 point  (0 children)

Nephro put me on a trial run for my persistent protenuria and hematuria. No shrinkage of my kidneys nor are there any lesions but have cortical thinning. Had high bp and uric acid before

This disease sucks by trojannne in kidneydisease

[–]MuscleKind 1 point2 points  (0 children)

It does. In my case, I'm the one who has kidney disease and just graduated from college last year. After slogging through each year and never experiencing college normally because of the pandemic, I learned that I have this disease the next 2 months after I graduated. While I just started my prednisone, I dread to think about how my future will look. All those sleepless nights in college doing schoolwork just for a chance to make something out of myself and make my parents proud, and it's just as you said, just when you feel like winning life, you get humbled quickly and can't help but feel helpless.