glomerulonephritis and sickness?

[Becks26]

Hi I'm hoping someone will be able to help with some experience they may have had! I'm having a kidney biopsy on Tuesday due to them thinking I have glomerulonephritis but I have other symptoms (nausea, vomiting, weight loss and tiredness) which doesn't match to the disease so biopsy will reveal all (cringing at the thought of the procedure!) I just wondered if anyone else had experienced glomerulonephritis with these symptoms or was anything else identified after biopsy? I'm only 26 and my gfr has reduced by 20% in 2 weeks Thanks!

[rabbit01]

Hi, These symptoms are pretty common symptoms of kidney problems especially when you have a sudden and rapid decline in your egfr so I don't know why you think they aren't. I have the same as you glomerulonephritis and my symptoms are the exactly the same. Best of luck with the biopsy.

[SHAZZA39]

I wouldn't worry about the biopsy you'll be fine. I had one last year the worst part isn't the biopsy but having to lay on your back for 6 hrs after so take an mp3 and a good book with you. My biopsy confirmed glomerulonephritis and since last year my kidney function is down to 15% - I'm facing the prospect of dialysis but the positive thing is it's not the end of the world whatever age you are if you look after yourself you can do most things in life. Your renal team will support you.

[Becks26 in reply to SHAZZA39]

Thanks shazza39 really appreciate your response! My nephrologist said they wouldn't do dialysis for me it would just be straight to transplant which I would personally prefer I think, hopefully won't get to that but I've come to the decision of whatever happens, happens! How do you feel on a daily basis? Do you get any of the sickness? I'm nauseous 24/7 and sick at least once a day but I feel fine within myself just a bit bored of it all but glad I'm getting some answers x

[Sunsetter]

Hi Becks 26 - I had a biopsy on 18th May 2017, and I found the whole experience and lot better than I'd expected. The team at Northampton General Hospital were wonderful and really looked after me which helps. First they take your bloods and weigh you etc, then you do have to wait for the results, in my case a couple of hours before, they can start the biopsy itself, they have to make sure it's safe to do it and what your baseline functions are. You then get taken to a treatment room and like on your tummy and they use an ultrasound to locate your kidney's and decide which one is best to use - they used my left kidney as it was slightly closer to the surface. They then let me know exactly what they were doing and because the needle they use and the cutting device that takes the biopsy makes a loud clicking noise they let me hear that so I wouldn't get a shock when it happened. They then injected a painkiller into the area and tested it to make sure I couldn't feel anything. They then asked me to take a breath and hold it at a certain point so they could get the needle in at the right place and take the sample. They had to do that 3 times and afterwards, I was allowed to roll over on to my back and they showed me the very thin little worm of red material in a jar which was going to go off to the lab for testing. I would say it wasn't painful but uncomfortable when the need went in and the biopsy was taken - like a pressure as it has to go though your skin and a big muscle, but other than that it was fine. Then I was wheeled into another room and my blood pressure and temperature were taken every 15 mins for the first hour then every 30 mins for the next and gradually reducing. I needed to produce a blood free urine sample before I was allowed home, but you do have to lie on your back for 6 hours and towards the end they gradually raise up your shoulders and head a little so you're not dizzy when you finally have to get up to go home. I quite enjoyed the lie down, as I had my kindle with me and the nurses brought me drinks and a sandwich so I was very happy. I don't have the same kidney condition as yourself, so I don't have any treatment but just need to try and keep the kidney function I've got by eating healthy and getting enough exercise and rest and try and hang on for as long as I can. Don't worry at all about the biopsy. I wish you all the very best going forward. X

[Becks26 in reply to Sunsetter]

Hi Sunsetter, wow thank you so much for your detailed response that's really put my mind at ease! So good to know it's not as bad as they make it sound, I'll be a lot more relaxed now I must admit I'm quite looking forward to the lying down part as I've got a 1 year old so I'm constantly on the go so it'll be nice to relax and be looked after haha! Hope you're doing well, it's good news that you don't need treatment bet that is a weight off your shoulders thanks again for your help xx

[Nicolala]

Hi Becks

You've been given really good advice and information here. I was diagnosed with fsgs- a type of glomerulonephritis - 30 years ago. The biopsy, whilst uncomfortable, is your best bet of a clear diagnosis. One thong i would say is this. The idea of transplantation before dialysis is nice, but there are no guarantees because it relies on finding you a match. I was 17 when diagnosed and waited 20 years for a kidney, despite being told I'd get one before I was on dialysis. I'd been dialysing for 16 years! I just wanted you to be aware of this. Good luck. X

[Becks26 in reply to Nicolala]

Hi Nicola, thanks for your reply had my biopsy on Tuesday so just waiting for my results next week now! Thank you for your response I really appreciate your honesty, how are you with your fsgs now? Hope you are well I totally understand about the transplant and dialysis, like you say it's a nice thought to be able to just have a transplant but inevitably I'll be on the waiting list for a while! I was shocked when he said they'd go straight to transplant rather than doing dialysis as the first port of call and see how that goes, not sure on the reason why possibly my age?? I'll let you know when I get my results next week and see what they say from there! Hoping I won't need another biopsy any time soon anyway they're fairly unpleasant aren't they haha xx

[Nicolala in reply to Becks26]

Hi Becks,

I started dialysis 3 years after my diagnosis. Been on for 27 years now. The FSGS recurred in the transplant straight away, which mostly happens with this particular disease. However I am well and go to work still etc. I hope you get positive results from your biopsy. X

[Becks26 in reply to Nicolala]

Hi Nicola, can I just say you look amazing considering you've been having dialysis for 27 years (not that you are old at all but you look fabulous!) I did wonder about reoccurrence in the transplanted kidney, I guess it depends on the kind of disease you have? Are both of your kidneys affected by it? Thank you very much, got a CT scan with contrast dye soon as well so full health check box has definitely been ticked! Xx

[Nicolala in reply to Becks26]

Becks

Yes both kidneys are affected and now shrivelled up to the size of an egg! Thanks for the compliment; lots of make-up and good lighting! I'm 46 now. My kidney disease was diagnosed at 17. Most kidney diseases do not recur in transplants- just unlucky I guess. I will never have another. I'm quite happy as I am. I do nocturnal dialysis at home every other night.

Once you have a proper diagnosis you will know exactly what you are dealing with and can begin to look forward.

[Becks26 in reply to Nicolala]

Oh gosh really at least you can do the nocturnal dialysis must make things a lot easier for you! Although I'm sure it's not the most pleasant thing at least you have your days free rather than being stuck in hospitals

You look fab, if I end up needing dialysis etc for such a long period I hope I look half as good as you do! I'm 26 with a 1 year old and currently feel like a haggered witch with zero time on my hands haha. Thanks again for all your help it's much appreciated being able to speak to someone about it all xx

[Zazzel in reply to Nicolala]

HI Nicolala,

I didn't realize one could be on dialysis for so long. That should give a lot of hope to a lot of people on here.

Are there other things you do to keep yourself healthy? Do you have to be careful about how hard or long you exercise?

Do you have to have someone else perform the dialysis hookup for you or can you do the whole thing yourself? I've wondered how home dialysis works and if it's complicated. I guess like everything else, it takes training and then you are good to go, but it sounds a little intimidating.

I'm so glad that you are able to work and are so positive. CKD is such an unpredictable disease (although isn't all of life). It's good to know there are options.

Thank you for sharing and many blessings and healing thoughts being sent your way!

[Nicolala in reply to Zazzel]

Hi Zazzel

I guess I don't have a secret. I just live my life. I used to go to the gym, but the only exercise I do now is to walk my dog.

I do home dialysis on my own. I live alone. It is quite unusual but after so many years of dialysis I know it all very well so I was able to persuade doctors to let me. It's all complicated at the beginning, but you soon get the hang of it. I always ask questions. I know this disease and dialysis well. I know the diet and I won't say I've always stuck to it, but I do ok. For me, a positive attitude has always been important. I dialyse so I can have a life, I don't live to dialyse. I work. I see friends and you wouldn't know I was ill unless I told you. Tiredness is my enemy now and I do run on empty most of the time. Good luck to you, and thank you for your kind words.

[Rosemary201 in reply to Nicolala]

You are inspiring. I too didn't know one could be on dialysis for so long. Thank you for your message. You're obviously a beautiful person in & out.

[Zazzel]

Thank you for your reply. I wish you well😊