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
Getting ready to start Dialysis
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DAF1234
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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.
Shilpiaggarwal18• in reply to
May i knw wat’s your mother’s creatinine??
• in reply toShilpiaggarwal18
Yesterday's result showed 52.
Shilpiaggarwal18• in reply to
I m asking abt creatinine??is it 5.2
Have you chosen between hemodialysis and peritoneal dialysis? Have you had the appropriate surgeries for either one? If not, you need to have it soon if you want to start in 3 months. You may not have symptoms today but that could change next week. Everyone's different.
I will try peritoneal. From what I’m hearing it has fewer diet restrictions. My concern is having the tube in me.😳
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.
Was the surgery bad? Did they put you to sleep? Did you have to spend the night? Sorry for all the questions but I’m terrified of the surgery. Never been in the hospital befor
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.
Thank you for your reply. I think I’m ready to get it done now. I’m just always scared of the unknown!😀
You're welcome! It's mice to be a part of this group, helpful questions and answers. I'm glad I'm not alone. Have a great day!
Me too!
I have done a lot of research on the Renal Diet Nutrition and the difference between the dialysis options at Davita.com and NationalKidneyFoundation.com. Those two sites have given really good insight for me.
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!
Thank you for posting. I feel better just reading this. How long have you been on dialysis? Is it Peritoneal? Are you still doing good?
I am currently 6 months post transplant now. I did do PD dialysis. I felt is was more gentle on the body and gave the most ability to work and live a normal life.
Do you want to do PD?
Congratulations on your transplant. Yes I would like to start with PD, for the same reasons.
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.
I am considering transplant but I have to get on the list. I agree my blood pressure is also getting very high. Was it a difficult transformation for you?
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
Well this is very encouraging. Thank you for the post. I believe attitude is everything and you have an amazing outlook on this. Stay positive and keep posting. I pray when I start I won’t let depression get to 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 !
Thank you Frankie. I wish you the best as well. Hopefully you will get the go ahead for the PD treatment.
Hi, I have PKD. I started in 2015 with GFR around 11. I’m now at 7 and not on dialysis yet although doctor says it will probably be this year. Prayers for you. God can do anything 😀
Good luck to you Bunkin, stay strong.
Thank you so much😀
May i ask your creatinine??
6.13
Can u plzz tell me, wat is your creatinine?? And is there any way to reduce creatinine??
I take Chitosan to help. Reduce. Not sure if it helps or not. Mine is slowly creeping up there
R u on dialysis or nt??
I’m not yet
God’s grace... wish u luck... i would like to ask is ur gfr 11 was in 2015 or this year
GFR is 7
Gfr is 7, Creatinine 6.3 and you’re still not on Dialysis. That’s amazing, how do you feel?
Hello Bunkin...My Gfr got down to 12 and Creatine about 4.2...I decided that it was time...although the only symptom I had was fatigue...I chose to do PD at night in my home and wanted to take my classes and learn all I needed while my concentration was still un-fogged...The Surgery was very simple...done at hospital under gerneral...sore a few days and then began my classes...I am now on PD cycler (Amia) while I sleep...I wake up and unhook and live the day as I normally would...no pain...no nausea and after only 3 weeks I feel so much better. If not for all the boxes and supplies (that we are in the process of building cabinets for them) I forget I am even on Dialysis...I also felt I had few symptoms until I started feeling good and realized how bad I actually felt....PD was definetly to way to go for me while i wait for a Transplant or Research to complete artificial kidney....Just pay close attention to your PD Nurse on septic and diet.. and problems will be very few
Glad you’re having a great experience. I did not but looking back I think it was partly the cycler!
Are you still doing PD ?
No I got my transplant feb 2!!
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