Hi Paula, I am CKD 4 and used to feel the same as you. I started by watching my potassium intake by avoiding bananas, tomatoes and other high potassium foods. Next, i increased my water intake to ensure that I was fully hydrated. I started to resume gentle exercise and that helped. After a couple of weeks I started to fell a bit better, It is a slow process. I have severe sleep problems , so that does not help. I think discussing our fears with people like ourselves helps and I think you are in the right place here. I am nearly 80 so other age elated faactors crop up , but generally I feel good about my life, so look at the positive things, like you are still here and that is better than the alternative, Many people have worse problems than us . All the best.
Thank you for replying , I’ve just read back my intro , I do sound a bit negative but it just feels like a lot just now. I’m grateful for the advice duly noted. I will be sure to drink plenty, (does it have to be water ?)
No, it can be squash. But, avoid High Juice or concentrated, I use Robinson lemon Barley water. Lists of what to avoid are on the internet . Good luck B
Hello Kidney Community. My name is Thando and im on stage 5 ckd. My kidney declined so fast from beginning of last year when I was diagnosed , I was in stage 2, but it went down very quickly even when I was given medication to slow down the progression. So now im about to start Dialysis as my eGFR is below 15, im anxious about the whole thing as I am a mother to 2 teenagers and a 5 year old. Next week I have an appointment to discuss dialysis and I have decided to go for APD , the dialysis that I can do overnight at home as I am a full time worker and on work visa, I must work and meet my contracted hours so as to not violate my visa so attending dialysis sessions in the hospital is not going to work for me, im just hoping I will be suitable for the APD as it will make things easier for me. I feel exhausted and tired all the time, its not easy living with this condition. I just hope and pray , things work out, as they are preparing to put me on transplant list. Im happy to have met this community who understand and are in the same boat as me. Thank you.
Me and you same story, im also about to start Dialysis as a full time worker and a full time mother. Im just overwhelmed and anxious how all is going to work out for me. The worst part is that im on work visa which im supposed to meet my contracted hours , or else my visa would be violated.
I hardly sleep right throught the night, I wake up 3 to 5 times at night going for a pee. I pee a lot at night and thise trips to the toilet disturbs my sleep, sometimes I end up failing to fall back to sleep and would be going to work in the morning and will be tired and exhausted all day. I wonder if my sleep will get better once I start Dialysis.
I sympathise , I have the very same problems, although being retired helps. No matter what time I go to bed , i am still awake at 3am. then i sleep on and off until about 9.30
Hi there, I’m Sophie. I’m 35 years old and I’ve been struggling with kidney issues for 13 years. I’ve had a pyeloplasty, 5/6 stents, and have hydronephrosis and, I’m due PCNL surgery to remove kidney stones. I struggle a lot with pain but mentally, I’m finding it difficult to speak to people about this as I’ve never been diagnosed with CKD although my right kidney doesn’t function as well as it should/my other kidney. I hope it’s ok for me to post here and I’m not a fraud in the kidney community
Welcome to Kidney Community @SMGreen. It’s great to have you as part of the community and it’s absolutely OK for you to be contributing here. Sorry to hear about some of your struggles. I hope you find this space a good place to connect with others.
Thank you so much - I’ve got surgery (PCNL) and another stent being fitted next Friday so if anyone has any experience of this that would be great to chat. I’ve got complex kidney anatomy so it’s a slightly longer operation and I am always incredibly sick from anaesthetic so will be kept in hospital for a few days!
Hi my name is Ann Hotchkiss and I have kidney failure and have been on dialysis twice a week for a year. I was on dialysis three times a week for a year before that but I was having such bad side effects i had no quality of life. So talked to my consultant and agreed to twice weekly. This has suited me better but my urine produced is down and I know my consultant wants me to go back to 3 times but I really can’t face it what do I do
Hi Ann. What has your consultant said about the outcome of staying on twice weekly. I guess that the final decision is with you but what are the consequences ? All the best B
Hi @Ann. Welcome to our new online community. Sorry to hear about your experiences of dialysis. I hope you make some useful connections in this space and hear from others who are going through something similar.
Hi everyone, I’m Dalila. I’ve been living with lupus (SLE) for over 20 years, diagnosed in my teens, and with lupus nephritis for the past 11 years. It’s been quite a rollercoaster, but I’m really glad to join this forum and connect with others living with kidney disease
Hi @dalilatm. Great to have you as part of Kidney Community. I hope you make some strong connections here and find it a useful space for sharing experiences.
