Help

[buryboy]

Hi i'm 36 and found out 4 years ago i only have 1 kidney with simple cysts ? With a function that fluctuates 17 20%. I have been finding it hard of late, i fedl tired the moment i wake up, my gp is rubbish and my consultant changes every time.

Who can i talk to?

[MISSHJ]

My husband has PKD and both his kidneys are covered in cysts, although his function is currently at 28%, he is in agony all the time. He is now on morphine for the pain. He is also tired all the time and has no motivation. At times he was so depressed at the thought of this being his quality of life for the next x amount of years, it could be hard to live with. He feels none of the consultants care as they just laugh and joke when he sees them as if his life is light and funny. Luckily, his GP is very good and understanding, but only after a little moan by myself. Dont be afraid to tell your GP how it is affecting your life and how you feel about the way they are dealing with it. A bit of empathy from your GP can go a long way. I hope it helps knowing that there are other people out there who are in a similar position and know how you feel.

Hayley

[pluto94]

I am afraid tiredness comes part of the package , have you spoken to a dietician at the hospital yet ? They might be able to help with pointing you in the direction of energy foods that your system will tolerate. I found taking less starchy foods helped , but also vary your diet or you soon get bored of food.

[cmcginily]

Hi, with regard to your consultant changing each visit. You can request to see the consultant you saw last visit on check in you may have to wait for a little while but it is worth it to see the same person.

Christine

[nikityler]

I was diagnosed with PKD 24 years ago and now see the consultant every 2 months like you I seem to see a different one every time (Dorchester Hospital, Dorset) I have also asked to see the same one but hit a brick wall being told that they are a team and it is not possible to see the same one each time. I think this is the norm, however difficult it is. I am not sure which hospital it is but Dorchester does have a counciling service specially for kidney patients you could try this.

[buryboy]

Thanks every body. I go to hope in Salford Manchester but i don't get much hope from them.luckily I'm not in that much pain but i worry that this is now my life. I look very well when family found out they didn't believe me even my wife thinks I'm being lazy sometimes. As stupid as it sounds from what I've read i can't wait to start dialysis i believe you feel 100% better.

[cmcginily]

Hi There,

It is hard when the illness is hidden, people have no understanding of how we feel inside. Tiredness is a main feature of kidney disease you are not being lazy. Pain is also very draining and takes it's toll on energy levels. My pain is all right sided and lower back this is almost certainly kidney related. The lower back pain is usually posture related due to the weight of the organ in my case I have cysts in both kidneys and liver and the organs are very large causing pressure pain. I am stable in stage 3 at the moment and hope i never reach the stage where i need dialysis. Just rest when you can and keep your pain under control dont take anti inflammatory drugs such as ibuprofen or diclofenac they are bad for your kidneys.

Best regards Christine

[poppydolly]

Hi

I have PKD, diagnosed 10 years ago (im 55 now). i have got cysts on my kidneys, liver ovaries and probably in yet undiagnosed places!

i am now stage 4-5 with a function of 14. the strange thing is that i got most pain when i was at a lower stage with higher function. the worst was when the cysts would get stuck between my ribs !*!*!*.

my kidneys are hanging in there at the moment my main symptom is gout, i have had tiredness and itching in the past but that has gone at the moment (touch wood). i felt at first that my consultant was dragging me kicking and screaming into diaylsis but 18 months after he said i would be starting, i haven't yet and hopefully this will last for a while longer as i do not have a living donor available and i dont fancy going on line begging for one!

Just taking things as they go at the moment

Regards

[buryboy in reply to poppydolly]

I have had gout in my big toe twice, it's the most painful thing i have ever experienced. You can get medication to help will have a look at what i was on. The main thing for me is the constant pain down my left side and the tiredness. Seeing the specialist this Wednesday so i will see what they say.

[Kimmieb52 in reply to buryboy]

Try cherry juice and organic and vinegar,my friend swears by it !!! Good luck I hope you see this !!!