Hi. I am 47 and have been diabetic since i was 9. I have been sitting at around 23 gfr for the past 2 years. About 3 weeks ago blood tests showed raising levels in gfr markers and im now at gfr of 6. I had fistula done about 2 weeks ago. It taking nicely but not ready. I have started a fortnightly drug for anemia and struggling to eat well ( gone from 58.4 kg to 53.2 in about 2 weeks. Extremely tierd ,dizzy and cant move about much due to energy/anemia/and postural hypotension. Serum sodium levels have raised out of green zone and holding fluid in ankles and feet. Potassium is ok at the moment. My renal/dialysis team are not doing dialysis yet and seem to be waiting for me to get worse before they intervene. Im just wondering how bad i need to be before i should be on dialysis? I feel at major risk of something life treatening happening every minute at the moment. My local dialysis clinic is so busy, im waitng another 2 weeks before im even seen again or have bloods taken. Any advice on if i need to push things for faster help would be great. Thankyou in advance
I am just curious why you are doing hemodialysis vs Peritoneal dialysis? It’s proven to keep residual function going longer than hemodialysis and it doesn’t involve needles. I understand some will say “that wasn’t the question asked, he’s made his dialysis choice,” but for me personally it’s a question that has to be asked. My first instinct is that because of your diabetic status you were told the dextrose in the solutions will cause major issues with your A1C and insulin needs. You don’t need to start with dextrose based solutions. We start all patients with Icodextran sugar free and do one exchange a day. No PD cycler. If your numbers dropped that quickly then it’s reasonable to think that with nurturing medication moves and choices you could bounce back slightly. I encourage you to examine PD. Hemodialysis doesn’t care about your GFR, your urine output….it’s always ready to use your fistula and clean the blood. Peritoneal does care about urine output, RRF, and it helps to prolong it will you fight for a transplant. Please consider that option. Wishing you the best experience with this disease
I’m male, 60 years old and I have polycystic kidney disease, grade 5, I still don’t undergo hemodialysis or have a fistula, and I’ve never taken the slightest care with my diet, but at the moment I have:
Potassium: 5 but was once at 6.
Creatinine: 8.07
Estimated glomerular filtration rate: 7
But despite everything, I don’t show any symptoms. Will it be normal?
John Agar has retired. I am not a nephrologist, but a long-time social worker. In my experience, most people who have your labs for creatinine and GFR are having bothersome symptoms. Most have chosen and started a treatment for kidney failure. You might want to check out the My Kidney Life Plan decision aid that Medical Education Institute that administers this forum created. There are many options for treatment for kidney failure and it’s important to choose one that fits with what you value most in your life. https://mykidneylifeplan.org/
You may not feel too badly because those who have PKD often do not have anemia. Anemia can cause a number of bothersome symptoms (feeling tired, having low energy, a poor appetite, memory problems, shortness of breath, etc.). Do you have itchy skin or swelling? Those symptoms are related to toxin and/or fluid build up in the tissues. Medical Education Institute created the Life Options site decades ago to help people with kidney disease learn what they could to stay as healthy as possible. Check it out. https://lifeoptions.org/
I hope you are seeing a kidney doctor (nephrologist) who is seeing you and drawing labs regularly. Ask to see a dietitian who can teach you what foods are safe and which ones you should limit. Medicare and other insurance in the U.S. may cover medical nutrition therapy when kidney function is 50% or less. You should be aware that high phosphorus foods that can cause itching and make bones brittle while high potassium foods can cause muscle weakness and even a heart attack. Another site MEI started is called Kidney School. It has 16 modules, including one on nutrition that may be helpful. https://kidneyschool.org/
I hope this information and the links I’ve provided are helpful.
Thank you very much for your response and for leaving links.
In fact, I sometimes get a bit itchy.
I am already being followed by a nephrologist and he advises me to do the fistula now, but I think I will wait until I have symptoms and when I really need it, I will do a catheter and only then will I move on to the fistula.
Maybe I’ll take more risks, but I hope to buy some more time before starting treatment methods.
Check out the decision aid to see if hemodialysis ( in a clinic or at home) fits well with your life. Could you do peritoneal dialysis? Have you been tested to see if you are a candidate for a transplant? Do you know anyone who would be willing to be tested to see if they would be a match for a transplant? I’ve known people who put off dialysis and told me they wished they hadn’t waited as long. People on dialysis can live an active life, work, travel, and enjoy family and friends. I’ve known people who lived decades after being diagnosed with kidney failure. That could be true for you too but only if you get treatment before pushing your body too far.