I just came across this site while looking for advice on increasing kidney function

[Julesrich]

I have CKD stage 4 and my last GFR was 24. My doctor wants to discuss urinary diversion surgery but I am reluctant as this is major surgery and my right kidney function is not as low as my right. Has anyone had a GFR this low and not resorted to surgery

[Bassetmommer NKF Ambassador]

HI Julesrich,

Not sure what you are asking about because your question is not clear. All surgery is risky for CKD patients. But then your doctor probably knows that and is aware of taking precautions. I am not sure what the surgery you are talking about is for. Can you give us more information?

[Julesrich in reply to Bassetmommer]

Hi Bassetmommer thanks for responding to my post. I had radiotherapy treatment for cervical cancer over 30 years ago and unfortunately developed radiotherapy damage to my ureters whch caused blockage resulting in kidney damage. In 2004 I had surgery to my right kidney using my duplex kidney/ureter to replace damaged section and reinsert into blader using boari flap. In 2014 I had the same procedure to my right kidney as the same happened to the right ureter. Since then my GFR has gradually reduced due to the same problem occurring again, ie scar tissue and radiotherapy damage. My last GFR was 24% and my doctor said he wants to discuss surgery, ie Ileal Conduit, bladder removal. This is major surgery and I actually feel well and my right kidney function is not as low. I am considering saying I do want this surgery, at least not in the near future. I would like to know if anyone else has been in the same position as me. They have told me I am not suitable for kidney transplant, I guess maybe due to my damaged ureters. I am under The Royal Marsden Hospital in London, which is one of the best so I guess they know what's best for me but it's scary.

[Sammi_n_Munk in reply to Julesrich]

Hi there Julesrich. Wow. Sounds like you have quite a lot to consider. I’m glad to hear, at least, that you still feel well. That’s always a good thing. I truthfully don’t know much about the surgery of which you speak, however, it’s probably something you should speak to your specialist about, and perhaps even a second and third specialist, just to get as many opinions on this as you can.

Ask your physicians if this is something that you can wait on, or is it something that is absolutely necessary at this point in time. Could this situation change with time, where you might possibly lose the opportunity to have this procedure done in the future, should you choose to hold off on it? I have an aunt who lost a chance at a hernia repair surgery that she had put off while her mother was ill, and ultimately, her own predicament worsened to the point where such a surgery was no longer an option. She still suffers from the consequences of that decision, I’m sorry to say.

I suppose the best advice I could give to you is, ask as many questions as you can about the pros and cons of the surgery, if you decide to do it now, or later. Consider everything, and ask them why it’s important to do it at this point in time. And remember, get as many opinions as you can from other doctors as well.

I’ll keep you in my prayers, dear. I wish you all the best. Please do keep us posted on any progress. God bless. 🙏😊👍

[Julesrich in reply to Sammi_n_Munk]

Hi Sammi thanks for your reply and advice. I will definitely ask the questions you suggest and I was thinking about getting a second opinion from a Nephrologist. Some of the posts on here have given me hope as they some seem to have a lower GFR.

[SissyFaye in reply to Julesrich]

I agree. Get a second opinion. Was your colon affected by the radiation? I had extensive radiation damage throughout my digestive and urinary systems.

[Julesrich in reply to SissyFaye]

Hi Sissy I have radiotherapy damage to my bladder, although this doesn't trouble me too much just the occasional light bleed as my bladder lining is thin. I now have a bowel blockage but doctor is unsure what this is as tests results were inconclusive but I think it's probably radiotherapy damage. Also the damage to my ureter which in turn caused my kidney disease as I listed in my previous post was due to radiotherapy damage. I have read of people having lots of problems due to radiotherapy and feel blessed to have reached 69 years of age and the time to spend with my daughter's and grandson. In the end a 2nd Egfr showed an increase in my kidney function so I didn't need the urinary diversion surgery, which was a great relief. I hope you are coping okay with your health problems. I'm in the UK and there doesn't appear to much in the way of support for long term radiotherapy damage health issues

[19Willow62]

I had a urostomy /urinary divertion almost 20 years ago and apart from coming to terms with the change in my body i have never regretted it. I am now living with stage 4 occasionally sliping down to 5 with an EGFR of between 22 and 16. Was as low as 14 at one point. The diagnosis is simply degenerative kidney disease with unknown cause. Surgery was the right option for me but i would caution to think very carefully about it. It a big op and a long recovery journey. I hope this helps.