CKD STAGE 3

[RIBBONPINK]

I HAVE PKD NOW I AM CKD STAGE 3 CAN ANY ONE HELP ME ABOUT THIS OR ARE EXPERIENCING IT WAITING FOR CT SCANS MY SYMPTOMS ARE BREATHLESS EXHAUSTION PAIN IN RIBS AND SIDES.CAN ANYONE TELL ME WHAT TO EXPECT PLEASE?

[bigkid]

The symptoms that you are experiencing are probably not specifically to do with the fact that you are at stage 3, I can say this because I have been at stage 3 since transplant three years ago. It is likely that the discomfort you are experiencing is either due to the size of your kidney, or maybe even the liver, which is pressing on your lungs or some other organ. This is the problem with PKD it causes all sorts of things other than just loss of kidney function. Generally speaking I think most people at stage 3 don't have many symptoms that are function related, more generally they suffer with rogue cysts or infected cysts. You are not along in your suffering or anxiety, the 'not knowing' is the worst thing and most off the time physicians can't actually tell you where the pain is coming from. I hope they can find an answer and bring you some relief.

[RIBBONPINK in reply to bigkid]

HI THANK YOU FOR YOUR REPLY I AM WAITING FOR CT SCANS AND FURTHER INVESTIGATIONS NOT JUST CYSTS IN KIDNEYS AND LIVER SOME OTHER TISSUE IN KIDNEYS AND AWFUL PAIN IN BOTTOM OF RIBS THANK YOU FOR YOUR HELP .

[Mgt8]

Hi

Stage3 was where I found out I had PKD too. Felt terribly 'full' very like being pregnant where all your organs get squashed up.

Everyone's different but if you read enough on here and talk to fellow sufferers, then you're sure to find similar experiences to share.

My kidneys are now 30cm and 29cm from my last scan and egfr13, so have just tipped into stage5. Dr still recons I have about a year to go before I'll need dyalisis though as kidneys are deteriorating slowly.

For a while at stage3, I remember my ribs feeling under pressure too. After a CT scan they found cysts on my liver too but not enough to cause too much worry as liver still working fine. After some time, either I got used to it or the pressure became less as I don't really notice that now, unless I'm lying at a certain angle in bed. Breathlessness also a problem and climbing stairs wore me out; still does really but I just do everything a bit slower than I used to do. Excercise (swimming) helps with the breathlessness a little and have recently had a set of 3 iron injections which have given my energy a boost. (Can climb a set of stairs now without stopping!)

it's hard to deal with when you first find out you have PKD. I'm sure lots of people on here will tell you that too but if you have a good doctor who can help you to ease your symptoms its a good help. ....and keeping blood pressure at a normal rate really made a difference to me..... it slowed the deterioration down.

Hope it all goes well for you.

Keep in touch with everyone on here and at your kidney unit as sharing can really help.......

[RIBBONPINK in reply to Mgt8]

THANK YOU I HAVE A LOT OF OTHER PROBLEMS TO COPE WITH AS WELL. FIBROMYALGIA. ARTHRITIS. STOMACH PROBLEM .DIZZY SPELLS.UNDERACTIVE THYROID.I USE A WHEEL CHAIR A LOT NOW WAITING STAIR LIFT AS HAVE BREATHLESSNESS AND PAIN IN JOINTS FLUID IN LEGS.I DO HAVE A GOOD GP.MY BLOOD PRESSURE LOW WHICH MAKES ME DIZZY.AWAITING CT SCANS CYSTS IN KIDNEYS HAVE GROWN THEY FOUND ON ULTRA SOUND TISSUE THAT NEEDS SCANNING SENDING ME TO SPECIALIST. I CAN ONLY TAKE IBUPROFEN IN SMALL DOSE. I TAKE NIGHTLY ANTIBIOTICS BECAUSE OF UTIS PLEASE KEEP IN TOUCH IT HELPS ME A LOT.

[khughes66 in reply to RIBBONPINK]

You should not take asprin unless 81 mg.my Dr said will cause u to go I to kidney failure faster.like poison when u have pkd. I am in stage 3

[Cisticola]

The pain under the ribs sounds very familiar to me. For pain I take Tramadol and Pregabalin. With these life is half-reasonable. As for the exhaustion, if you have had renal infections or significant viral infections you might look into whether this has triggered another condition like chronic fatigue/ME. A secondary condition like this could be compounding the kidney problem.

Other thoughts, based on my own experiences, does the pain prevent you from sleeping properly? Also, do you know if you are you anaemic?

[RIBBONPINK in reply to Cisticola]

HI I CANT TAKE ANY THING IN PAIN RELIEF EXCEPT IBUFROFEN IN SMALL DOSE AND I APPLY ARNICA GEL I HAVE CKD STAGE 3 AWAITING CT SCANS.I ALSO HAVE FIBRAMYALGIA ARTHRITIS DIZZY SPELLS .UNDER ACTIVE THYROID AND STOMACH PROBLEM .I AM NOT ANEMIC. ONE OF MY KIDNEYS THERE IS SOME TISSUE THATS WHY CT SCANS. YOU ARE VERY KIND TO REPLY THANK YOU.

[jajaja]

RibbonPink, I am sorry that you are having such difficulties.

I think your pain medication needs reviewing urgently. Your GP may refer you to a specialist pain centre if they have no better solutions. Ibuprofen is on the list of drugs that are bad for the kidneys and we are usually banned from taking them. Paracetamol is OK, and there is a "ladder" of painkillers of increasing strength that are also used.

Many of us have found the indigestion/acid reflux drug omperazole is brilliant! The reflux can cause some problems which you would not guess were related to indigestion. This is something your GP can prescribe if you don't have it already -- just explain the need.

Low blood pressure sounds good -- most of us need something for high blood pressure. But I know low bp can be a nuisance and a real concern. Don't let your doctors forget it while they look at other things!

Good luck with it all.

[RIBBONPINK]

I AM ALLERGIC TO PARACETAMOL CODEINE ASPRIN SOME ANTI BIOTICS THEY MAKE ME VERY SICK I TAKE OMAPRAZOLE EVERY DAY AND ANTI SICKNESS TABLETS BUT I ONLY TAKE ONE TAB A DAY OF IBUPROFEN ITS THE ONLY PAIN RELEIF I CAN KEEP DOWN I HAVE OTHER HEALTH CONDITIONS AS WELL HIATUS HERNIA. FIBROMYALGIA.UNDERACTIVE THYROID .DIZZY SPELLS.ARTHRITIS.JUST WAITING FOR CT SCANNING.THANK YOU FOR YOUR REPLY.

[jajaja]

Quite a few people with PKD have a hiatus hernia. It is probably one of the reasons why I find sleeping well propped up on pillows works best for me. I reckon sleeping that way also makes it easier to breathe.

Painful joints often go with failing kidneys. I am sorry if you also have arthritis as well.

You could talk to your GP about whether now is the time to move up the ladder of painkillers. The next stop is often tramadol -- have you ever had that prescribed?

Good luck with the scans.

[RIBBONPINK in reply to jajaja]

YES IT MADE ME VERY SICK AND PARACETAMOL I CAN ONLY TAKE IBUPROFEN ONE TABLET A DAY

[jajaja]

Ibuprofen may quietly be making your kidneys very sick. I suggest you go back to your doctors and ask for painkilling patches. I am not sure you will get them but it should get your doctors to think more about how to help you. Have you been offered a TENS machine to try?

[jajaja]

... and don't forget the benefits of warmth for helping with the pain. Hot baths, electric blankets, electric heating pads etc. They are not a heavyweight solution, but they help.

[RIBBONPINK in reply to jajaja]

THANKYOU I USE HEAT PAD FOR MY LOWER BACK

[RIBBONPINK]

I HAVE TRIED TENS DOESNT WORK FOR ME. I WILL MAKE AN APPOINTMENT WITH MY GP ABOUT PAIN RELIEF I CANT TAKE TRAMADOL IT MAKES ME SICK.PARACETAMOL.CODEINE THE SAME.AND WITH ALL MY OTHER HEALTH PROBLEMS ON TOP AND FLUID IN LEGS IT IS VERY DIFFICULT THANK YOU FOR YOUR HELP JAJAJAX

[jajaja]

It definitely sounds as though you need to be referred to a specialist pain centre. It may be that you can take one of the other painkillers with an anti-nausea medicine.

Looking back at your question, you ask what you can expect. I found that for me, I always felt that I could just about cope OK where I was, but worried about how I would manage when my kidneys got worse. What I found was that things didn't really get sharply worse. My body seemed to adjust to a new "normal" and when I would slide down a bit, I would also re-adjust a bit. So things never became as impossible as I was afraid of. I hope you find the same -- just keep putting one foot in front of the other, however hard it seems. And somehow you just push on through the problems.

[RIBBONPINK in reply to jajaja]

HI JAJAJA I AM NOW USING ELECTROMAGNETIC ACTIPATCH IT IS HELPING ME THANK YOU HOW ARE YOU DOING?

[tikathapa]

i am same disease patient

[RIBBONPINK in reply to tikathapa]

HI THANKS TIKATHAPA I AM WAITING TO SEE KIDNEY AND LIVER SPECIALIST TAKES AGES.HOW ARE YOU GETTING ON?

[Wmspl]

Hi I am too at stage 3, so far liver parameters are fine and egfr varies 47,46,47

I have so far not experienced any pain and usually eat normal.

From last week I have stated more on fruits such as apples, Plums, various cherries and grapes... Every day cumcumber and carrot.

Rice in the afternoon and night tea with no sodium biscuits.

I had however always a taught what will happen to my kids... But now I have become used to it.

My middle son is 16 & has cyst's in both the kidneys, We have not informed him yet because he is studying science & wants to become a doctor.

We plan to inform him once he is in 2nd year of his course, the nephro informed me not to worry for my son, keep checking Sonography every year.