Ckd stage 3 pkd
Posted , 4 users are following.
Hi guys,
I'm new to the group and need some reassurance.
I thought i was going the hospital for an ultra sound, anyhoo I had that and the camera examination (don't know the tech term) for my bladder.
I had the first ultra sound, then after doing a urine sample, was told that my bladder was still half full! And that was not s good thing according to the nurse ??
I have had severe pain and blood in my urine for several weeks, I told my GP it was the cysts bursting, anyhoo I'm going for a CT scan hopefully in the next week.
My worry is that I'm heading to stage 4, what do you think.
Cheers, Karen
0 likes, 11 replies
weeled Tallulah_blue
Posted
Hi Karen, The camera looks for problems inside the bladder and the ct looks for external to the bladder. It may be muscular and tamulosen(sp) can aid that. I'm going back on the 30th for a follow up as I'm the same with regards to emptying my bladder. Could pee for Scotland, but half hour later I'm ready to go again. It's got to the point that when I go to the toilet, I sit, (I'm a guy) I pee,I wait for several minutes, then I pee again.
When you reach transplant stage, the new kidney does not have a oneway check valve like your old ones do.
Apparently they check for volume and flow rate, time to pee a certain amount of fluid before the plan their next course of action
I'll keep you updated
Burst cists,? Pkd by any chance?
Tallulah_blue weeled
Posted
Hi weeled,
Yes I have chronic kidney disease and polycyclic kidney disease, I'm stage three, I know it's the cysts bursting, do to the pain and blood in my urine, I'm concerned because my bladder showed it was still half full that I may be in the way to stage 4 😩
Gosh have you been tested yourself for the bladder
helen54849 weeled
Posted
Hi,
You are right, you have to drip your own body weight in water lol. I was started on 5 litrs a day bloody hell I haven't drank that much in years, then you pee in your catheter and see how much comes out (then a bottle when that is removed). It should be the same amount or .5 of a litre less. Sometimes you get a hyper kidney, they won't remove the catheter if you have this and you will be on iv fluids as there is no way you can drink what you are peeing. The girl in the bed next to me had this was peeing 10litres obvs couldn't drink this much so 4 litres oral and 6 litres iv. She is doing really well and has had no issues so its a good thing I think. I struggled with the 5 litres as it really is nearly my body weight. I got quite cross as they said why are you not eating, well I had to be honest it was rank (I don't eat food from a packet and I certainly don't eat cold food from a packet, secondly I was full there was no room what do you think I am , you can't have it always do you want me to drink or eat. Drink right then go away and leave alone to drink it grrrr.
weeled Tallulah_blue
Posted
Yeah, started tests on bladder about a year ago, I'm also pkd. Lol.
I was becoming used to the whole 5 minutes to pee carry on but it was my surgeon who was concerned. As Helen says, (she's an inspiration btw) don't worry about it. Things happen, docs will look into it, and hopefully deal with it. I'm 11% just now and I'm trying to tidy up loose ends before I go further for an op. I'm still not on any form of dialysis as I feel "ok" but the peeing issue is starting to pee me off.
helen54849 Tallulah_blue
Posted
Hello Lovely,
You had a cystoscopy. It is good that things are being looked into for you, I would see this as a good thing. Regarding progressing to stage 4 I wouldn't worry about that. Some people stay in stage 3 and never progress, there is a lovely lady on here who is in her 80's with one kidney and has remained at stage 3 thus far. I was stage 3 from 13 to 37 (I have Alports so there was only ever one outcome for me). Live your life, have your CT scan then take it from there depending on what the outcome is. Don't worry about something you (1) may not need to worry about yet, (2) have no control over.
Good luck with your scan and do let us know how you get on
Tallulah_blue helen54849
Posted
Thank you Helen,
I am a stress head at the best of times, I have so many health issues I bite myself, I've got my CT on Sunday 28th January, will let you know how I get on.
Cheers, Karen
helen54849 Tallulah_blue
Posted
Aw,
You have every right to be a stress head, its scary times and fear of the unknown. My friend in work has PKD I have known him about 10 years and he has seemed quite stable fingers crossed. His Mum has just had a transplant obviously she is old and managed quite some time before she needed to go on the list. I don't want you to worry about that bit it could be ages off. What I will say is that if it does come to it the whole transplant dialysis thing its not as bad as you would think and that's not an amature guess I have actually been through it and come out the other side. Hopefully it is as you think (you know your own body better than anyone) you have popped a cyst and things will settle down a bit for you. You are having all the right things done at the moment, so fingers crossed its just a blip. I knew my whole life that I would need a transplant it was just a case of when, even though I knew that I would need dialysis it was still a shock and I was dead brave in the hospital even made it out of the car park across a rounderbout and to a set of traffic lights before I started sobbing like an idiot (note to self the rounderbout would have been better for the breakdown everyone was looking at the weirdo bawling at the traffic lights lol). So you see its quite normal to be scared and so strange things, I am not usually a crier and the last time was May 2009 when my dad died but its ok to act up we have that right we are part of the CKD club. Yes please let me know what they say, its nice to speak to people who are going through/been through the same thing xx
Tallulah_blue helen54849
Posted
Ahh Helen, you sound really positive now though, I can only imagine the fear and upset never mind the trauma of having to go through all you have,
It is absolutely fabulous to speak to like minded people after all this time, I've often wondered if there was anyone else to talk to, my partner is super supportive but there's only so much understanding given if you're not going through the same issue.
I think for me the diagnosis given for ckd & pkd was the last straw, I've got other issues around my health as well, plus there's no one else in the family with these conditions or another hereditary one I have, so I'm obviously the luck one lol.
You are all great on here, well you guys who messaged me back lol, I really appreciate it.
Much love ??
kathi70354 Tallulah_blue
Posted
The procedure you had on your bladder with the camera is a cystoscopy. Not fun, huh? Had one this past summer and thought it very painful. I am surprised your doctor has let you suffer for several weeks with pain and blood in your urine! No antibotics prescribed?? As I have stated on this site, none of us are doctors so our advice is purely from ameturers who have experienced the same symptoms or are guessing. My advice is you find a GOOD nephrologist who specializes in kidney function or a GOOD urologist as this could be bladder related. In the meantime be sure you are drinking PLENTY of water, taking NO IBPROFINS, and watching your blood pressure. I am a 73 year old female who has lived my entire life with one kidney so I know your fear of the GFR and creatinine numbers. Don't worry until you have to!! And, make those appointments! Keep us posted.
kathi70354 Tallulah_blue
Posted
Sorry, by the time I posted my response you had communicated with others and I read your discussions. I thought this was your first experience with pain and blood in urine. I am being led to believe you do not live in the USA as I do. Reason. . .you are having to wait over two weeks for testing. My daughter is an MRI tech at a large hospital and she tells me we would all be surprised at the number of people who have kidney related issues. Don't worry until you gave to!! Best of luck!!
Tallulah_blue kathi70354
Posted
Hi Kathi,
It's my own fault, initially I saw a locum doctor rather than my own, so I was waiting for a CT anyway, the blood in my urine came after, when I saw my GP I was referred straight away, waited two days for the app.
I was not aware of all the tests and procedures that awaited me due to not receiving a letter informing me, thankfully 😅 it was not as bad as first thought, I told the GP my thoughts, burst cysts etc, feel like the 6 hours I spent at the hospital to me where a waste of NHS resources.
Yes I'm not American I live in the U.K. Liverpool, home of the Beatles lol.
I imagine the American health service is quicker as you have to pay. I hope you and you're daughter are ok.
Cheers, Karen