I had a visit with my Dr. yesterday. EGFR is down to 10. Although I am still not showing symptoms Dr feels we should start considering dialysis no later than three months. According to my neurologist symptoms are often not seen in PKD patients because the progression is very slow. Not sure how I feel about entering “the new normal”. Feeling grateful for not having symptoms. New appointment in Four weeks will know more at this time. Any advice would be helpful. Thank you.
Getting ready to start Dialysis - Kidney Dialysis
My mum also got same words from her doctor yesterday...... I was almost depressed at the thought of dialysis for her. Seemed like it spelt doom. But joining this platform yesterday, I've been reading up and panicking less....... thanks for sharing your story.
I had the PD tube surgery on January 29th. For the first 3 or 4 days it was sore and I had restricted movements and did not lift anything heavy, which I mean anything over 5 lbs. I have been to the nurse to have bandages changed and the area cleaned and she made sure the catheter was working. Now, a month later, it is healed and I no longer am sore and am able to move normally.
It was an out patient surgery, From the time I went in till the time I left after the surgery was a total of 3 1/2 hours, including recovery time. The surgery was about 30 minutes. I was under anastesia, yes. I was hurting when I came out of anastesia, but the nurses were very good at giving me pain meds When I went home, I was tired for the first day and didn't take any pain meds after that. It was just awkward to get used to because of the catheter being in my abdomen, I felt a little pressure with most of moving around. I felt "normal" about a week later and didn't feel pain or pressure at all. Hope this helps. Its the first time Ive had surgery so I was really scared too but it wasn't as bad as I thought it would be. If you are a side sleeper, you may not be able to sleep on the side it is on for a bit but really, its good now.
I also have PKD. I felt exactly the same as you. I also was at a GFR of 10. I was very nervous and didn’t really understand why i would start dialysis if i had no symptoms, but here’s the thing, I’m so glad i did!
Starting dialysis was very overwhelming. You want to feel in a good place and unsystematic when you start.
Once i started i felt so much better. I realized although i thought i felt fine. I felt even better after dialysis.
I hope you will feel the same. Good luck. You will do great!
I can feel your reluctance as I felt the same way. My creat was at 5.5 and my eGFR had crept down to 10. My doctor had explained that it was better to start now as I had experienced a rise in my blood pressure and that my labs were off. I had a low hemaglobulin and hematocrit with a high level of PTH. I also was concerned for fluid overload. Within several months of starting peritoneal dialysis, my creat went up to 10. I am glad I started when I did.
Have you considered transplant as an option long term? Hold on as you experience this journey.
Yes, but you can adapt to the night time PD. The machine is something you must get used to. Once you get a routine in setting up the machine, you will be good to go. The training will explain everything about the aseptic technique. I got on the transplant list at two places and was successful in getting kidney transplant after eight months. Keep the smile through the process....
I too have pkd my consultant started me on dialysis when my gfr was down to 10 even thoúgh I felt absolutely fine he said it was better to start now while I'm feeling well and he was right I chose to have peritoneal dialysis but with the machine overnight while I'm sleeping best choice I ever made it doesn't interfere with my life at all I've been doing it for two and a half years now and it's never stopped me doing anything I have traveled to 5 different countries in the last two years I take my machine with me and Baxter delivers all my fluid to whatever hotel I stay at I count myself lucky as so far I've never been ill and feel like there's nothing wrong with me hope when the time comes you will feel as confident as me
I was also told at 10 GFR that it was time to begin dialysis, I have PKD as well, my potassium and phosphate were very high despite diet restrictions. Other things in my blood work were off as well. I had a fisula put in place back in July 2018 in preparation as they said PD would not be possible because my kidneys were so large. Now I am meeting with a surgeon to determine if I can do PD as I hate hemo and I conferred with another Nephrologist. I hope and pray I can. Wish you the best !