Stage 5 CKD

[Jsea]

Hi Everyone,

Note: I also posted this in the Stage 4 section as the site doesn't seem to have a section dedicated to Stage 5.

I am currently in stage 5 of CKD. (FSGS) I am trying to find others in a similar situation to get an idea of what I should be feeling / experiencing. I realize not everyone will be the same but there should still be some common similarities. I feel like this will help me relate and potentially let go some of the frustration and/or depression.

I was diagnosed with CKD roughly 5 years ago. (@ 35 yrs of age) Everything was relatively fine (outside of a lower than normal GFR) until February of last year when I suddenly went suffered from Acute Kidney failure. Thankfully my Kidney function was restored but my GFR fell from 52 to 18. Since then, my GFR has slowly declined to the current level of 10-12. Now I am waiting on transplant testing / my GFR to fall to single digits for a transplant or dialysis.

Is there anyone else currently in Stage 5? (or even late Stage 4) If so, can you describe a normal day or what you experience in regards to pain / difficulties? I was diagnosed with Focal segmental glomerulosclerosis (FSGS) but I am interested in responses from anyone with all types of CKD.

I also have an ulterior motive as the specialist(s) believe the CKD is a secondary, if not a tertiary, condition but they are unsure of the primary. If I can compare different symptoms and group the similarities, perhaps I can see what is not common to assist with a determination.

I am at my wits end contending with this disease. My quality of life is beyond sub-par and I find myself exploring the darker parts of my mind because of this. I don't want to let this continue / fester as it will only hurt me, and my loved ones, in the long run.

Thank you to all that take the time to read & respond.

[Hakemq8]

Were you aware of the kidneys problems (I mean you know what's the GFR and the creatinine were)?

Just hold on brother, you will be good, I hope life treats you better, you still young brother, I feel the pain you have and how it effects the people surround you.

[rabbit01]

Hello, I am at stage 5 with 10% eGFR. I gave up work a year ago once my eGFR reached 12%. I am on the transplant list but not yet on dialysis although my nephrologist wanted me to start PD February. The main problem I have is tiredness which comes on in the mid afternoon and pretty much does me in for the rest of the day. I get nausea in the mornings and the occasional bout of Gout as an added bonus. Like you I get depressed about it all but I try to keep positive and active. I have lots of interests such as model making and that really helps take my mind off of it. I have given up trying to explain what it's like to friends and family as they have no idea how kidney disease affects you.

[Bunkin]

I am stage 5 and have been for years. My GFR is 8. I have the typical fatigue. Sometimes nausea and sometimes my back feels tired and I have to lay down if I overdo. I have high blood pressure and Hyperparathyroidism. Other than that I’m pretty good. I’ve been healthy all my life til the last 5 years(or longer). You’re in my thoughts and prayers. God can do anything 😀

[RhenDutchess123 in reply to Bunkin]

hello Bunkin....i am at 15 GFR....i get tired mid afternoon also...i also suffered from hyperparthyroidism and had 3 removed...made such an improvement in my bone pain...that was almost 3 years ago and i still have normal parathyroid and calcium readings...i also take a liquid B12 complex in mid afternoon...rest about 1/2hour and wake up refreshed and ready for the rest of day.....when i get depressed and worried i play my word puzzles on my phone...they help keep my mind strong...other than that i too feel fine...even when i go on dialysis eventually ...i hope i can stay positive..i have talked to alot lot a people who have done PD for 10...12...15 years and other than the time for exchanges their lives have not changed that much...stay strong and best wishes for you !!

[Bunkin in reply to RhenDutchess123]

Thank you for those encouraging words. I always try to stay positive but there are days when the depression gets to me and I really have to remind myself to take it one day at a time. Not worry about the future, as no one is guaranteed to see tomorrow. You just never know. Live your life to the fullest and if you’re saved, you still have eternal life to look forward to in heaven. That brings me peace of mind ❤️❤️

[RhenDutchess123 in reply to Bunkin]

God is Good....

[Bunkin in reply to RhenDutchess123]

Yes he is!

[Gracemae]

Hello,I have been on dialysis 18years.In the year 2000 I had a bilateral nephrectomy.Both kidneys removed.I don't let it define me.Everyday it's a new normal,I just gotta roll with it .Dialysis days,I feel like I have been through the ringer.I used to not need to rest after but now when the fluids are shifting its better to sleep during.I have hobbies and keep busy with them.I have low bp and have to do things when I feel up to it.Some days I get the things done I want other days you gotta let it go when I can't.When I get too tired I will sleep for a hour or so,gotta listen with how the body's doing.My friend said The minds willing, the body not so much.Somedays are more challenging,but am glad to have everyone I can get.I have to remind myself on occasion.Take each day as it comes.☺

[Bunkin in reply to Gracemae]

You’re an inspiration!

[RhenDutchess123 in reply to Gracemae]

just curious if you do dialysis at home or at a Center....

[JoanneLi]

Hi, I'm stage 5 with 11% GFR. Like most here I get tired, have some nausea and have renal anaemia. I am on the transplant list, working full time, not on dialysis.

[Jayhawker]

I’m in Stage V and still working full time too. How long have you been in Stage V? Are you on dialysis yet?

Jayhawker

[Dicken]

Hi J I have stage 5 CKD, and have had it roughly 2-3 years. My GFR is now 11, but unlike you I am not holding out for a transplant or Dialysis. This all started about 6 years ago when I discovered I had Cancer stage 3. It turned out it was a tumour in my womb. It was very advanced so I started radio/chemo almost immediately. I came through ok, and thought that was the end of it, but on my call up after 6 weeks they found they had missed some. This was the start of my problems.I was ordered to do another blast of chemo as well as radio. My body hadn't had enough time to recover and basically it burnt all of my insides, leaving alot of me like tissue paper. After been admitted everything seemed to go wrong. I had to have a stoma (which I hate) numerous surgeries trying to improve my situation but no luck. My bladder was damaged with the therapy so now I have a nephrotomy changed every six weeks. The stoma is for life and however much I try it seems to let me down at the most unexpected moments. When I'm out, with company, middle of the night. You name it it does it, and it is so embarrassing. I suffer numerous UTIs and have done since surgery. I do everything right but it doesn't seem to matter. I have had every anti biotic going but after an initial period it always returns . I also now have a strong smell to my urine, and it's very dark, as I also wee naturally sas well as my nephrotomy . All I can say is it smells like Ammonia. I have all the usual symptoms of CKD but now I am vomiting daily. This is horrendous and all it is is green bile. I understand how fed up you are, because I am the same, and have dark thoughts. I used to be such an extrovert. Very lively and chatty. Now I am a 54 year old woman who hardly ever goes out. Really depressed, and I constantly ask. "why me?". I'm not a bad person, so why have I been dished up this- well it's not a life it's an existence.

I would like to hear more of your situation so we can compare and swap advice, because God I need some!!!

I'll wait to hear from you.