I've got PKD and my two kidneys are growing lots ( 25 cm each )

[crisgi]

They are starting d to be very painful some times . and because i suffer as well from IBS its more complicated . The question is : If you got a big kidney like my 1: How do do coupe with it. Do you feel breathless, can you do normal exercices, What is you perspectives for a transplant later on . Because at the moment my function i 59 %. and what does your docter tell you about it . Ive been doing drainage and for a few month i few a reliave . But does not stop my kidneys of growing .

[Electra]

Hi, there is a HealthUnlocked community for people with PKD, and you should find more people there with experience of large kidneys like yours. Just search for ADPKD in the list of communities.

[crisgi in reply to Electra]

Tks very much i will have a look at this website .

[Moggymolly1]

This is my first post, Ive just joined this network to find moral support from PKD sufferers. My sister and I both have PKD and very different symptoms. I am 41 and my kidneys are 18cm and I am stage 4 renial failure about to go on the donor register in the new year and dreading it due to alot of fear with seeing my family already go through this. I have no pain and have been leading a normal life. My sister is 44 has kidneys that are 23cm continuing to grow and she has had one hernia removed last year as the kidneys have ruptured her stomach linning. This was repaired but now the hernia has come back and she has to go to hospital for a second more major operation this month. She has bowel problems and cysts on her spleen and liver but her kidney function is normal. We both go to the gym and try and lead a healthy lifestyle but syptoms vary from patient to patient.

Our grandfather died at 39 from PKD and our father had dialysis at 49 followed by a transplant and then dialysis again before he died at 61.

Weeve just got to be strong and make the best of it and hope someday they will find a cure.

[nikityler]

I to have ADPKD along with my two sisters. We are all affected in different ways. My middle sister has just had both her kidneys removed each being the size of a new born baby and weighing 7kg (both), mine are enlarged but not sure what size and do affect my breathing. I currently am at stage 4 (19% function) and have lots of pain and discomfort. Unlike CMCGINILY I am unable to drink lots of water as this causes more pain, instant coffee is a no no but fresh coffee is better. Other things to stay way from are bananas and nuts.

[crazymetalchic]

Hi hun

I was diagnosed with advanced PKD when i was 40 im 46 now, no history of anyone in my family having it, It has passed down two both my children but they dont have it as bad as mine would have been at there age.

Size was a problem for me also but i couldnt have aspiration as i have so many cysts it would have been ridiculous. I think bowel problems (i also suffer from IBS also) tend to go with PKD possibly due to the size squishing everything internally. Large kidneys can make you very short of breath but so to can kidney failure causing things like anemia.

I have spent 8 months on dialysis, had my left pkd kidney (my largest at the time) removed to make room for a transplant kidney whilst on dialysis. three months after my husband became my living donor, i have currently had my transplant will be 2 years on 21 december. Right kidney is growning still. It is quite a major operation to remove large PKD kidneys so many are reluctant to remove them till absolute neccesary. Your function is still quite good which suggests to me you have fewer cysts than i do but they are very large ones. Are you seeing a nephrologist? renal specialist if not it would benefit you to be refered to one as soon as possible they have just started releasing results of a drug that has been tested the last 3 to 4 years which reduces cysts and kidney size it would be very good to be in the system when this finally becomes licensed. If you need anyone to chat to hun or need to ask me any questions please feel free to contact me I ill help you as much as i can yes you can live life and exercise when you get pain and its severe it can sometimes be a burst cyst then rest is advised till the pain passes. hope this has helped a bit. You are certainly not alone thats the main thing it is a very comon disease believe it or not.

Take care

Trace x

[humpstump in reply to crazymetalchic]

Hi, I just wanted to know more about the medicine to reduce cyst & kidney size. I have pkd, this is very scary to me. Thank You,

so much for your time & info.

[crazymetalchic in reply to humpstump]

Hi there,

The drug that was on trial is called Tolvaptan (JINARC TM) It has now been licenced as the first -ever drug to treat adults with ADPKD in Europe.

However, the governing body (NICE) have so far rejected it for use in the UK on the grounds the benefits of the drug are not enough to warrant the cost on the NHS. The PKD charity UK are fighting it and have recently sent surveys to members to fill in to prove how PKD affects every day life. The NICE committee met again on 7th July an appeal was made but we wont hear the results till September. Keep everything crossed! ..lol

It has been use to treat congestive heart failure in the past and works by causing loss of body water through the urine. It comes with side effects as does any medicine. These can include thirst, dry mouth, increased urination, headache, low blood pressure and dizziness. It has been mentioned in the past of increased risk of liver damage.

The positive side of this drug is that although it doesn't work for everyone with PKD it has significantly slowed the progression of PKD down, reduced the size of the cysts and in turn the kidney size. It is by no means a cure but Its a huge help and step in the right direction.

I'm guessing It will be licensed for use through nephrologists first before it filters down to the GP's.

Hope this helps and answers your questions, If you go on the PKD charity website Just put it in google make sure it is the UK site they have regular updates on there about it. There is also lots of positive information and support on there as well. I understand completely how you feel its still scary for me and I've been through most of it you wouldn't be human if you wasn't hun, the main thing is your not alone with it.

[cmcginily in reply to humpstump]

Hi humpstump

Unfortunately the medicine for ADPKD tolvaptan has not yet been approved by the powers that be. It will be reviewed again later in the year. It is a drug that has been shown to slow the growth of cysts and possibly reduce the volume of cysts. Testing is still going on at the moment. I agree it is a frightening disease but if you can stay well and look after yourself you can stay stable for many years. I am 57 and my gfr is 31. Apart from flank pain and tiredness I lead a fairly normal life. I work part time in a Children's Hospice as a nurse. I am reviewed by a renal consultant 6 monthly and have been referred to a pain control team. My kidney's and liver are covered in cysts I was referred to the transplant team and they said they were very impressed by my kidneys!! But I was not ready for a transplant yet. If I can be of any help message me. Best wishes Christine.

[Mgt8]

Hi

Im PKD, egfr17 and kidneys 25 and 30cm; not dialysing yet.

Found exercise difficult so took up swimming. Finding it works well as I feel supported in the water. Also the journey to the pool is good exercise in itself!

Also, using a pedometer gives me a positive boost as I can keep track of incidental exercise too.....

Hope this helps.

[cmcginily]

Hi Crisgi

I also have large cysts in both kidneys and my liver and also have irritable bowel. I have had pain and discomfort for many years. My egfr is 31 and I am almost entering stage 4 renal failure.

I manage the pain with paracetamol and codeine. I also use heat patches or a hot water bottle to ease the pain in my side. I use a TENS machine at work to keep me going.

I recently saw a pain control specialist who has started me on Lyrica which I am slowly increasing so don't know if it will help or not yet.

I have family members who are willing to be tested to give me a kidney if it ever gets to that stage.

The best way to manage it is to stay as well as possible, manage your blood pressure keep it low as this is the main enemy of the kidney. Avoid all anti-inflammatory drugs ibuprofen. nurofen, diclofenac and the like as they affect the kidneys badly. Eat healthily I try to avoid meat 2 days a week to let my kidneys have a rest. Drink plenty of water, avoid coke, coffee and alcohol. I do have an occasional drink on special occasions I am not a saint lol.

Hope this helps I am here to support you on your journey if you like.

Christine