Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Hi I have PKD and ESRD at 11%. I have recently spect 3 weeks in hspital with sever pain in my left side between ribs and pelvis.. The pain lasted fr about a week and the gorss hematuria lasted 6 weeks with me then having to deal with symptoms of blood loss. I had gynaecological investigations aswell as kidney investigations although the blood was lost through my urine. I got all clear from gynaecologist but was discharged by urologist who were unable to confirm diagnosis even though they had CT and MRI scan as they said they need to refer to cancer colleagues. They have called me a couple of weeks ago saying that after having meeting and looking at scans both my kidneys need to be removed. Since I had already planned a double nephrectomy with my nephrologists and transplant surgeon. I thought this was odd. I asked if after they removed kidneys would the 'thing' be gone. They would not discuss further over phone. My appointment is tomorrow at 10.30 and I am very frightened about the diagnosis' Has anyone had similar situation to this and what was the diagnosis. Do they remove the kidneys as a precaution or if something definitley found?
I don't know why you planned to have kidneys removed but this seems as though your decision was right. usually its best to leave them because they are important to your body and do things that dialysis can't replace, such as regulating electrolytes.
please let us know what you learn at your appointment.
I dont think it was right for them to tell you over the phone that you need your kidneys removed, and then making you wait 2 weeks to tell you why. That kind of thing should be said, and explained, face to face, or so I think.
Anyways, dont think of the worst. I think that if it was really bad, they probably would have asked you to come down ASAP, and not have you wait a few weeks. Lets hope Im right on this.
Best of luck on tomorrow's appintment.
PKDAD
My mom had alot of issues from kidney size (although much smaller then mine) but had a nephrectomy while on dialysis and says she wishes she had done it sooner because it made a huge difference.
I will continue to think of you and pray that whatever needs to happen will make your quality of life better.
Yes I do work and have done full time since 1985. My employers are a major bank who treat their staff very well- and I'm not talking about bonuses. We have a very strict sickness policy at work and sstaff are taken to disciplinary if they are absent for more than 4 times in any 12 month period. I, however have had very little time off during my working life and even when I have been sick in a morning with pain I always try to make it into the office in the afternoon. I was a manager up until 2 years ago but the job became too much for me as I was struggling with the pain and couldn't focus so I stepped down to a clerical job. I am very well paid for what I do and really enjoy my work- although it's a struggle they know that I have not abused the sickness system and for the last 6 motnhs I have been working half days but still getting paid for full days. Any time I want a break I go and lie down in the first aid room- in fact a lot of my colleagues have renamed it Julie's room. Because my op is only scheduled for end of October I have agreed a 3 day week return with them starting n monday but the days are flexible- i.e when I can manage and again they are still paying me my full salary. My mother took early retirement at the age of 50 due to PKD but she did not have distending belly and her EGFR is better than mine. But since she retired I feel that she has gone down hill as she regularly does not get up out of bed because she says she can't. I think there's something in mental attitude becuase on a weekend when I don;t have to get up I feel that I can't but I manage it on working days becuase I feel that I have to to keep a normal independent life. I do use Tens machine if pain is really bad and have refused morphine tablets due to sedative effects. I already take a whole bunch of sedatives and know that I couldn't work if I took anymore. I must say though that my work life balance is very poor as I am way too tired to do anything other than work and sleep. We are all different though and I can see that through all the members in my family and the different problems each of us have. Do you take sedatives for sleep - I am on quite a high dose so ususally don't have too much trouble sleeping- that said due to recent events I have hardly slept. I go back to work on Monday but not sure if I can keep it up much longer still got problems with low hemaglobin due to blood loss for 6 weeks and have really struggled just doing small chores around the house like changing the sheets on my bed- so maybe I'm too optimistic- I'll let you know how I get on next week and thank you for your prayers and thoughts- mine are with you also.
Since you were going to have your kidneys removed anyway, lets hope the cancer was "encapsulated" in your kidney and when they are removed, that will be the end of it.
Many have said here that kidney removal is a delicate surgery.However, most have agreed that in the long run, they are happy and pleased they went ahead with the procedure. So keep up the good spirit, and best wished for you.
PKDAD