Kidney failure

[Tiras]

Went to the doctor today, test showed kidneys functioning at only 50%. Diagnosed with stage 1 kidney failure. I have had fluid building up in feet, legs, hands& abdomen. The doctor told me if it is caused from the lupus, there is nothing that can be done? There might be some medication that may slow the progress down, but kidney failure would eventually be inevitable.😢

[Tiras]

Yes my doctor she is a nephrogist. I am scheduled for a sonogram of the kidneys on Thursday, then go from there? 😢

[Kaboom1250 in reply to Tiras]

Just seeing this now-my heart and prayers to you. Do not lose hope. There are ways and remedies and approaches that apparently, awfully, have not been presented with the diagnosis (poor form on Dr's part). You can and will fight through this. I am praying for you.

[DJK99]

Hey Tiras - just seen your post. So very sorry to read that. Must be quite frightening for you - and your partner. I'm not on here much these days as had rather a lot of stuff going on (the breast ca came back... so has big ole mastectomy 7 weeks ago). I wonder how you are getting on from time to time... and then I saw this. I so hope the tests show some kind of hope and there is in fact something they can do. I'll be thinking of you. D

[Tiras in reply to DJK99]

Thank you, hopefully starting testing will find defiant answers?

[DJK99 in reply to Tiras]

Definitive? And defiant?! Hope so to Tiras.. Everything crossed for you and your loved ones.

[Tiras in reply to DJK99]

We will get through this, I’m gonna live life and enjoy it as long as I can. Actually I had my grandson (before he left for school), hook up the boat to the truck, I’m going Bass Fishing today!❤️

[DJK99 in reply to Tiras]

Fantastic! Good luck on the line!!

[LalSD]

Very sorry to read this Tiras. I wish you a quick recovery. I will pray for you and it may take a long time with the right medication. With best, L

[Tiras in reply to LalSD]

Thank you!❤️

[Sarah74]

You’re doctor sounds like a hoot. What a terrible way to speak to you.They should say kidney damage not failure. I’ve only had 42% since the age of 35 and I’m now 47. With the help of medication and a food diet there’s no reason why you can’t have a relatively normal life.

xx

[Tiras in reply to Sarah74]

We will be starting testing on Thursday, hopefully find out more and or go to the next round of test?

[DJK99 in reply to Sarah74]

Wow. Yes, diet and proper hydration can change so much for the better, for so much. Great response.. Hope you doing well. D

[WinterSwimmer]

There are many things that can help with kidney function in lupus. It depends what kind of kidney problem you have. I have class IV nephritis and EGFR of less than 40% and take mycophenolate which keeps my lupus at bay and helps keep my kidneys stable. I know that other sorts of nephritis sometimes respond to other drugs and yet others seem to progress only slowly. If your kidney problem is caused by lupus the main thing seems to be be to keep that under control. Swelling of legs hands and feet is scary (did s/he give you a diuretic, to help with that?) but again there are drugs that can help and it is even possible that with the right help your kidneys can improve. Take heart - if your kidneys are really done for that is grim (but there are transplants) and in almost any other scenario it might still be possible to improve/maintain the function you have, regardless of what your doctor said initially. Good luck!

[Tiras in reply to WinterSwimmer]

Thank you for the information, yes I take a diuretic and have been for close to a year, actually increased from 20MG to 40MG about a month ago. Thankfully we are still in the testing stage, so maybe get a better answer of what is going on?

[chrisj]

I was under the impression that 50% function wasn't serious. I was never told my kidneys with that result were at stage one failure.

I picked up an e coli infection a few years ago, was given antibiotics and it cleared up I but still felt unwell, no appetite and stuck in bed. Lost muscle power too. A physio was arranged at home who told me to stay away from the top of the stairs. It all resulted in a hospital admission with a reading of kidney function at 13%, I was very poorly.

I recovered but my kidneys didnt. Function is currently at 26%. and there's nothing they can do here either. Its risen slowly over the years. I always ask about function when I go for blood and urine test results these days. Nothing to do with lupus as far as I know, its damage from e coli.

Please dont be afraid, its not as bad as it seems. I wish you well xxx

[lowraind in reply to chrisj]

Actually an efgr of 50 is stage 3. In my opinion, after 4 years of living with CKD, and working hard to improve kidney function, I do not agree that 50% function of any organ is not serious.

[Tiras in reply to lowraind]

I will have to agree with you, if anything is only working at 50% then only 1/2 is getting done! Hopefully the test we will be starting on Thursday will provide more and clearer answer?

[WinterSwimmer in reply to lowraind]

Many people manage perfectly well on 50%. But I think it is more about what is causing the loss of kidney function. Is is 50% that is likely to be stable? Or 50% that is likely to get worse? After my first bout of nephritis, my kidney function came back up to 50% with MMF. Since then I have had a second bout, and now my kidney function is in the high 30s. However, I would still say that I have a good quality of life, I can walk for miles, I work, and I swim up to a kilometre out of doors most days. Obviously that will not be the same for everybody, and I’m not trying to make the light of kidney failure, which is one of the more serious complications of lupus (They are not called vital organs for nothing). But if you and Tiras (the OP) can maintain 50% kidney function it is nowhere near so bad as it could be. I'm not saying I wouldn't rather have 50%, but I am trying to put a positive spin on a bad situation.

[Tiras in reply to chrisj]

I can tell you this, when doctor saw only 50% function, she told me she was very concerned! Look at it this way, if you have a 6 cylinder engine in your car, and only 3 cylinders are firing, you have extremely low power and the car probably won’t go?

[WinterSwimmer in reply to Tiras]

We do start out with a lot of 'spare' power in our kidneys, though.

[CecilyParsley]

I am so very sorry Tiras, you must be in shock and so anxious. The lovely people advising you here will give you good advice and hope. Your Nephrologist assessment could be too pessimistic. Maybe get a second opinion. I really do wish you well

[Hidden]

Ask the Dr about rituximab infusions. I have severe lupus had problems with my organs including kidneys and rituximab has being life changing for the better for me. My thoughts are with you. Take care and never lose hope x

[Tiras in reply to Hidden]

Thank you & I will.😊❤️

[MandaM]

Hi Tiras

I'm sorry you've had this news, must be a shock and giving you all kinds of worry.

Back in April 2000 this was my scenario, only my kidney failure was further on than stage one. I was diagnosed with SLE & kidney failure by a renal consultant. Nothing could be done to stop the filters from the inflammation, scarring and failure. I had prescribed six months of IV. Cyclophosphamide given to me on the oncology ward of my local hospital. That was to buy me some time. It gave me five more years until I was well at end stage renal failure, my creatinine was 1600! My kidney biopsy produced completely drained of colour, kidney cores meaning their were shot! 😱 I was a stubborn mare, still working on that too. Anyway after my first grandchild was safely delivered on Jan 6th 2005 I let the renal team have me for dialysis training & transplant work up. I had two tenkoff ops first for peritoneal dialysis but those both failed to work for me. I had an emergency access put in my neck then chest for haemodialysis to start. Shortly afterwards these were taken away after I had a fistula made in my arm. That's reversed now. Due to transplant sisters keep leaving I was on haemodialysis for one year then it was time for my live, unrelated transplant donated from an ex boyfriend. I was lucky enough to have 3 people match & chose his kidney. The op was at George's London on March 8th 2006. It's the only part of me still going strong all these years later. I know I'm very matter of fact about it all, it's the way I deal with stuff, I just get on with whatever needs to happen. Please try not to worry, worrying just steals all your good days away from you. The renal consultants are excellent, you should be in very good hands if they are anything like my Brighton team. Can I just add that my father in law's kidneys are not great at all & he's been under the renal team for a few years & he's know almost 90! He doesn't have Lupus as a factor though but he's doing good. All the very best to you.

[Tiras in reply to MandaM]

Thank you so much!I’m not going to worry about it, I’m gonna live life to the fullest I can, (actually got the boat out and went fishing today). I start test on Thursday, so maybe can start getting some answers?😊❤️

[MandaM in reply to Tiras]

Hi Tiras Was there much in the way of fish? We are East Sussex, not great here, way too overfished. Breaks my heart. Hubby was fascinated in Devon in October to see how late the mackerel season was there.

Please update us after your appointment Thursday. Hope you get all the answers you need, afterall it's your body & you should know what's to come so all your future choices are informed ones.

All the best. 🍀

[Tiras in reply to MandaM]

I will up date as soon as I have some answers? The fishing here is great! I usually just catch & release. Every now and then I will keep a few for dinner, we have a lot of fish in the freezer.

We have some large Bass !

[honeybug]

OMGOODNESS Tiras ❤️‍🩹🤝I’m so sorry to hear this sad news.

I just said a special prayer for you my friend.

You are in my thoughts and prayers Tiras.

Love and prayers

EJ ❤️‍🩹🤝🤗♥️🥰🙏🕊🌿🌸🦋

[Tiras in reply to honeybug]

Thank you!❤️All I know to do is to carry on and hope for the best. I’m not going to stop living. Do what I want to as long as I can!😊

[honeybug in reply to Tiras]

Yes my friend…that’s the best attitude to have. I’m here for you whenever you need me.

I’m having ‘narcolepsy’ like episodes from my covid booster jab but I’ll answer as soon as I’m able.

Sending my love and prayers to you and your wife/family.

Abundant blessings my friend.

EJ 🤝❤️‍🩹🙏🕊

[LloydE]

1st had Renal failure in 1994, was 1 day from needing a kidney transplant and 2 days away from kicking the bucket. Nearly 30 years later, still drinking, still smoking (I know smoking is especially bad for the kidneys). Not yet needing that transplant (I will as some stage in the coming years). My kidneys are basically double my age but kidneys can last for 120 years. Will probably go downhill around 60 but unlike me if you keep to a clean good lifestyle no reason why you can't be ok for the next 20 years.