Stage 5 and not getting dialysis ?

[Tktlady]

I have read posts of people in stage 5 and not getting dialysis, don’t you have symptoms , edema , breathing issues ?

[Jayhawker]

Hi🐶

I’m in Stage V and not yet on dialysis. I’ve been in Stage V since early January of 2017, just about exactly 3 years ago.

I’m still eliminating fluid so rarely have edema. My BUN was elevated to 76. At that point I was pretty lethargic and found myself sleeping a lot. I also have severe anemia and so wondered if that was what the problem was. It wasn’t; instead, it was my BUN level. My electrolytes are in check. However, I have also developed secondary hyperparathyroidism. My blood pressure is generally good. I do not take blood pressure medications or use a diuretic. I take the following medications:

4 sodium bicarbonate (650 mg) daily (potassium)

3 auryxia (210 mg) daily (anemia)

2 rayaldee (30 mg) daily (hyperparathyroid)

I have not experienced shortness of breath. I have only had 3 bouts of itchy skin. I shifted to a modified vegetarian diet about 6 months ago. It has improved my creatinine and eGFR modestly. It has improved my BUN more—my BUN now comes in between 37 & 44. This is still elevated but clearly much better than 76.

But we’re all rather unique so my experience may be quite different from what others experience.

Jayhawker

[KidneyCoach NKF Ambassador]

Many people can be in stage V and not on dialysis. Some never have symptoms while others' symptoms are more severs. We all react to each stage of CKD differently. Stage V without treatment has many side effects, symptoms. Age, general overall health, other health issues, medications, activity levels can all be factors on "when" to start dialysis. These all can contribute to survival after treatments start or longevity if treatment is not started.

Blessings

[WYOAnne NKF Ambassador]

Remember that everyone is different. One person whose GFR is 12 may need to start dialysis because of all of their symptoms. And then there is someone at GFR of10 has no symptoms at all and is not on dialysis. Like everything, it depends on the person

[DadviceTV]

I was diagnosed stage 5, GFR 8, but while in the ICU the doctors got me stable at GFR 13. They said I needed dialysis within 45 days or I would be dead. I got labs daily as I worked with good doctors I diet and lifestyle changes. Never did dialysis and today I am stable in stage 3 with no symptoms. It will vary by person, but some people can recover enough kidney filtering to live normal with minimal or no symptoms. It requires commitment, a great health care team, and some luck.

[Tktlady in reply to DadviceTV]

Wow is good to know !! And glad for some

People success , can you tell me how long have you been in this boat ? Your age ? And any symptoms before diagnosis

[JOJOSMITH123]

In November 2017 my 78 year old mother was diagnosed with stage 5 kidney disease. Her Egfr was 15. She started PD diaylsis in May 2018. She was told in November of 2018 that she could have a 2 week break from it. She is still off it with an Egfr of 8. It's been a roller coaster but all I will say is everyone is different. She takes everyday as it comes and had very little symptoms. I'm sure she will end up on it again some day but for now she eats a good diet and most importantly remains positive..I wish you all well xx

[Hidden]

I am in stage 5, since Feb 2018. I have experienced severe anemia and currently taking EPO injections every 2 weeks and iron every day. I feel pain and cold rather severely due to the anemia. I have moderate nausea, moderate to severe loss of appetite and moderate sleep issues. I found that medical marijuana in small doses helps me. I vaporize and don’t burn, I tried to eat some edibles but they were gross. My doctor has been okay with it so far. I haven’t had any swelling or itching yet. I have polycystic kidney disease which enlarges the kidneys. So I am dealing with pain and fullness and often as well. My doc says I will start dialysis sometime this year, within perhaps 6 months. I hope you can hold off on dialysis as long as possible. Best wishes to you!