Its bad enough having to wait until Friday for this cystoscopy but this morning I received a letter from the radiology dept about my upcoming ct scan on Wednesday of next week.
I am ckd stage 4 with a gfr of 20.
I am in two minds about cancelling the whole thing because it has all caused me so much distress.
I now find out that I may have to have a contrast dye for the scan of my bladder area.
I know that contrast dye is really dangerous for low gfr people like me and I am not sure whether I can have the scan without the dye/contrast - I am not really sure what the consultant is looking for here.
What do fellow members think of this dilemma - I cannot get to speak to anyone until Monday about this but I am trying to hold on to my gfr along as I possibly can and I don't want anything to put that to risk.
Also I am so scared of the after effects of the scope because in the uk there is no back up for anything that can go wrong. you have to go to A and E and wait for 14 hours - not good if you are in pain or can't pass water. You can't go back to the hospital where the procedure was done because they have not got the facilities you may need.
just feel that there is nowhere to go at the minute and I would appreciate some advice - thanks for reading.
I am New Here and Need Some Help
Just now learning my GFR's were low for 5 years.
Should I take another pill? 
Its my turn to worry now
I was just told I am 3a ckd and looking for guidance as the internet research has scared me
There is a special dye they use for kidney patients that is more kind to your kidneys just make sure you ask for it it was made for patients like you and me my gfr is 7. my creatinine is 4.6 for last 2 years Im still alive and doing well. that dye is necessary for them to help you, you must not worry so much there is absolutely no side effects from the dye or from your MRI or PET scan you need to relax have faith in your medical team I've had two cycsctopies im still alive i am 70 years old. If you don't know. why you are having this exploratory surgery why aren't you asking your doctors? You need to have them explain everything to you write stuff down you need to be your own advocate not knowing why you are having this surgery is on you, for not speaking up.......
hello - thanks for your reply - I am in the uk and I was wondering if you know the name of this contrast dye. No one tells you anything here and you can ask until you are blue in the face. I do not want the contrast dye because of my gfr - the cystoscopy is for constant uti.
I do not know the name i will Google it in a few minutes if I recognize the name I will get back to you...... my cycscopty showed cancer in my bladder. So I was happy to have the pet scan with dye so as they could see what was wrong... they removed my bladder so cancer would not spread to other body parts, I am cancer free for 5 years now unfortunately i have kidney failure due to chemo therapy for the cancer blew my kidneys out......I wear a urostomy on my stomach as my new bladder you need to have this exploratory surgery so they can see why the UTI'S. Might be something simple they can correct. Worrying will make u sicker let the surgeon know your feelings but have faith that they are trying to get to the bottom of your problem so they can manage your health and you will feel better
Thanks for your reply. you have been through such a lot.I am just the most nervous person in the world though - its awful when your world has been turned upside down but you sound so positive.
The name of the dye they used on me was gadolinium its safe for kidney patients and dialysis baptists which I go to dialysis 2x a week they use this dyebon me for tests absolutely no after effects I bet your doctors have already ordered this special dye for you........you can google " name of dye safe for mri tests for kidney patients" and read all about it yourself hope this eases your mind.
Thanks so much for that
You are very welcome❤🙏