My dad has CKD stage 4.

[Danidan25]

Hi, I’m so glad to have found this group. My dad has been told today that his kidney disease has gone from stage 3 to stage 4. The doctor said that he thinks my dad will need dialysis in up to a year if things continue. He is 56 and a smoker. I and all the family are absolutely devastated and doing our best to find information on what could help prevent things worsening. We know the obvious, stop smoking, cut down on alcohol but the diet is overwhelming as there’s so many things to avoid. My dad doesn’t eat much anyway, but what do you consume on a regular day? I’d just like to hear about other people’s experience with stage 4 KD and also any information you have on dialysis. I’ve read some things that say life expectancy isn’t good once starting dialysis and some things state that people can live upto 30 years. Also I’ve read in forums that you can only have dialysis for so many years?

I’m going out of my mind with what ifs and just need some reassurance from someone who’s been here.

They have also found potassium in his urine and his blood pressure is high.

Thanks in advance.

[rabbit01]

That must all be very worrying for you. I am a similar age to your Dad but I am already on dialysis. I too used to smoke but I packed that up when I was diagnosed with kidney disease about five years ago. Anything you can do to help him to give up smoking would be useful but I know it is very hard. Suggesting anything diet related is difficult as it really depends on his blood results. It is very much an individual thing. For example even when my kidneys were running at less than 10% I still had a good ability to process potassium and phosphates but many people will not. So I would suggest he talks to his kidney doctor and hopefully will get a renal dietician assigned who can suggest diet changes based on his requirements. In my experience it is certainly worth making lifestyle changes as these can delay the need to start dialysis in many cases. I do wish him the best of luck.

[Danidan25 in reply to rabbit01]

Thankyou for your reply, I really appreciate it. How are you getting on and finding dialysis? Can you please explain how your lifestyle has changed and also how you managed to quit smoking? We have tried everything and the more we harp on to him about it, he gets frustrated and continues. I am also a smoker and I’m 28, I’ve ‘quit’ today and I’m finding it so hard so can understand how dad feels. I have two small children whom just idolise my dad and I’m so frightened to think that he may not be around to see them grow up, I can’t even imagine it. I want to do anything I can to help but I want to hear positives, can you still live a long healthy life after this diagnosis? How have you felt too? I ask this because I know dad must be worried sick but he won’t show any emotions and even jokes around with the doctor telling him he’s fine when asked how he’s feeling. I know lately he’s been getting so tired and his skin looks pale. He’s always been fit and looked young for a long time but now he’s aged fast. He works 10 hour days too and wondering wether to cut his working hours or if that will make things worse as he will be less active, also will be easier to smoke more. Sorry to bombard you with questions, just horrible being so clueless.

All the best x

[rabbit01 in reply to Danidan25]

I am doing well on Peritoneal Dialysis. I am doing manuals so it is 4 times a day. I have been on it since start of November last year. To be honest I should have started it sooner. I kept putting it off and it was not until I got to 7% kidney function, was feeling awful and my skin had turned a pale yellow colour that I was able to convince myself to have the operation and start. I really should have started around the 12% level as being on PD has actually halted my kidney decline so I may have been able to hold on to more function if I had embraced it earlier.

When I was diagnosed with stage 4 CKD five years ago I was told I would be on dialysis within 6 months. I was determined to keep going dialysis free for as long as possible. I was quite a big drinker so I cut that down. I did not just stop right away, I just cut back until it got to the point where I hardly drink any alcohol at all. I drank more water, ate more fruit and cut out red meat.

Quitting smoking was more tough. I had smoked for about 30 years. I got myself one of those e cigarettes and having that really helped me. When I fancied a smoke I just had a puff on the e cigarette and it helped. Then overtime I was able to go without that.

Through these actions I was able to extend the 6 months to over four years of being dialysis free.

Nobody can do this for your Dad. He himself has to have a “I’ve had it” moment where he realises that if he carries on doing what he is doing then he is on the fast track to dialysis. I was in denial for a long time and even when I had less that 20% kidney function I felt great and was doing well at work in a really tough job although for several years I had been suffering with severe tiredness although I had no idea why.

I was working full time until I hit 16%. I worked for a great company and they arranged for me to work from home about three days a week. This enabled me to work for another two years until I got down to 12%. By that time I was feeling very rough and so I went sick on full pay for 6 months and then my pay stopped although my company said they would try and keep my job open. Luckily I had a small insurance policy that pays out about 50% of my pay each month so that has kept me and my family going.

[Danidan25 in reply to rabbit01]

Thanks again for taking the time to reply. I’m sending your messages to my dad. Coming from someone else who’s in the same situation as him has got to be better than us keep getting on at him. He’s also a drinker, beer as soon as he’s finished work up until he goes to bed. Also a hard worker like yourself. I really appreciate you taking the time to reply, it’s a big help. X

[rabbit01 in reply to Danidan25]

No problem. I hope it helps him. Even if he just starts by making little improvements every week then these all add up overtime. He has the advantage that he was diagnosed earlier than me so hopefully he can keep going dialysis free even longer than I did. I do wish him and you well.

[LutherPDX]

Hi there. "My dad doesn’t eat much anyway, but what do you consume on a regular day? " We know much more now about a healthy CKD diet, than when I was in Stage 4. (I've been on dialysis 9-ish years.) Perhaps the biggest change is we now know a vegetarian diet can help hold off dialysis more than a meat-based diet.

"I’ve read some things that say life expectancy isn’t good once starting dialysis and some things state that people can live upto 30 years" Just don't look into that. There are so many variables to life expectancy that no one forecast applies to all.

"Also I’ve read in forums that you can only have dialysis for so many years?" They're probably talking about Peritoneal dialysis (One of the forms of dialysis) It isn't always limited - and even then it's rarely limited anyway. IF this applies Dad, he would then switch to hemodialysis.

Online forums are not the best way to educate about the FACTS of CKD/ERSD. People think that what applies to them must apply to everyone and that isn't true. You'll find some people lying in their answers only to improve their 'status' in social media. A very few people are even lying about being on dialysis!

[janeths466]

Hey! I know this can be tough, the life expectancy is good if you follow your diet, have good attitude and hopes. It is definitely stressful to be in that environment or so my mom has told me. She is only 44 with me and my siblings. Both of her kidneys do not work since I was 14 and is stage 4 renal disease. She has been there for 7 years. I know she can go for more. She got rid of a lung tumor last year in an induced coma in dyalisis, and is currently battling breast cancer on dyalisis. So dyalisis is just a bonus right now. My mind keeps filling with what ifs and I am 21 especially because of her new cancer and me with my very small siblings.It will get better I promise. Your dad is strong and so are you. You will get used to this routine if you remain hopeful!! Best wishes

[Danidan25 in reply to janeths466]

Bless you, her, and all of your family. That is really really tough. I’m so sorry you’re having to go through all of that. Thanks so much for your reply. Although I wouldn’t wish it on anyone, it’s comforting to be able to talk to people in similar situations.

[WYOAnne NKF Ambassador]

First thing he needs to get his BP under control. Call his doctor and see about that getting done. High BP can cause more kidney and heart damage.

You should see about a referral to a renal dietician. When he goes he needs to take his lab results with him. A good dietician should be able to come up with a diet just for him. There are some on this site that are at Stage 3 and 4 and have been able to stabilize their CKD by changing their diet.

He needs to drink plenty of water everyday - 2-3 liters.

You can find out more about dialysis from previous posts on this site. Look to the RIGHT on this page and you can click, under Topics - Hemodialysis and Peritoneal. You will also see that there are others on this site that have been on dialysis for 16 and 18 years....

Have they been able to tell you the cause of your Dad's reduced kidney function?

Have you been talking to friends and family about your Dad's CKD? If it were me I would see if someone was willing to be a living donor if your Dad needed it. Many living donor transplants are done before the patient even starts dialysis.

Please feel free to ask us on this site other questions. But please understand that we can not diagnose, but only speak from our own experience.

Good luck to you and your Dad.

[KidneyCoach NKF Ambassador]

Welcome and hope you will find some answers. Firstly dialysis longevity will depend upon many factors like age, other health issues, smoking, diet etc. I have been on dialysis 18 years. Its been a tough road but it is doable. My "diet" is so entrenched it is merely habit and I don't really think too much about what is limited or restricted. I also do home hemodialysis which allows me a much less restricted dietary and fluid restrictions from in-center 3X/week.

May I suggest kidneyschool.org kidney.org aakp.org These are just a few credible sites offering quality information about kidney disease.

Life does not end with a diagnosis. It merely changes.

Blessings