I am really on the edge now.

[fartikins]

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.

[MissArtist]

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.......

[fartikins in reply to MissArtist]

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.

[MissArtist in reply to fartikins]

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

[fartikins in reply to MissArtist]

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.

[MissArtist in reply to fartikins]

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.

[fartikins in reply to MissArtist]

Thanks so much for that

[MissArtist in reply to fartikins]

You are very welcome❤🙏

[nonna70]

I am glad to know there is a newer and safer form of gadolinium contrast available to us if I should need it in the future.

[fartikins in reply to nonna70]

I hope it will be available in the uk,

[Starrstruck]

Hi I am sorry you are so distressed. Where I live in USA they never use dye if your gfr is under 30.My gfr is 22 right now,next month who knows.Find out if the procedure is so important its worth ruining whats left of your kidney function. Ask all the questions you need to ask before the test,do not be intimidated, its your quality of life after all .keep us posted,praying for you

[Beachgirl32]

take a minute on breathe through all of this questions you have here ask your doctor . I know when I was in stage four I said no to dye the transplant center was upset because. Said no to ct with contrast they were like well we won’t see the image of your kidney well I said no not going to happen . They did it without the contrast and golly they could see everything fine . Ask question do you have to use a dye fir this test and ask what is this test looking for . It good to read that there another type of dye cause my husband is allergic to iodine and the last cat scan they change it for him to some nuclear test that would see the same thing so it interesting when they had to find another way they did .

[fartikins in reply to Beachgirl32]

thanks for your reply

[horsie63]

If this is what they are offering to get to the cause of your constant UTIs then carefully evaluate the risk versus the benefit. I can’t have contrast due to my thyroid but if I had to live with unknown UTIs I’d push for no contrast and have the procedure done.

[fartikins in reply to horsie63]

thanks for that

[Green306]

There is conflicting information about this. My friend just had CT scan with egfr of 10, is on dialysis, and refused contrast. They gave it to her anyway and it pretty much destroyed what function she had left. The ER doctor said she would be fine since she was already on dialysis. This is in USA.

[fartikins in reply to Green306]

Thanks for your reply - that is why I am scared.

[renegade70]

contrast dyes now a days are more localized and apparently do not spread in the same way they used to. at least that is what my hospital's mri dept explained to me. i also spoke with my nephrologist about the dangers of contrast dyes and ckd and she told me that only one of her patients in the past 20 years had a bad experience ?

[fartikins in reply to renegade70]

thanks for that

[renegade70]

by the way i have a prostate mri scheduled in the next month.already had a biopsy, no fun either. honestly, i am not totally convinced but what do you do when they are looking for cancer. i feel between a rock and a hard place.and am not convinced with any advice i have received. wish i could be of more comfort. best of everything.

[fartikins in reply to renegade70]

thank you

[Blackknight1989]

Maybe this site will help. Several opportunities for support via phone, video ot face to face. This is a British site fyi.

Link:

kidneycareuk.org/get-suppor...

[drmind]

A few years ago i had a CT scan of abdomen without contrast and it came fine. A gastro doctor ordered it. My gfr at the time was in the 30s. Good luck with your procedure

[fartikins in reply to drmind]

thanks for your reply

[fartikins]

thanks for your reply. I am going to have to get some answers