Early CKD Support
4,057 members1,496 posts

Pyeloplasty- how long is it usual to wait?

Hi, would really appreciate any input on this.

I was diagnosed with 'gross hydronephrosis' in 2016. (I know thats not really a diagnosis but a symptom, but this is all I have in my notes). The urologist did multiple investigations then referred me for pyeloplasty. The waiting list was long and it was considered non-urgent as my kidney function is not too bad (it is up and down but not ever been awful and they have stopped testing so I have no idea what it is now). So I just last week saw the urologist at the hospital where they said previously they could do the operation- but now they are saying they can't do it and have to refer me out of area. He has said they will put it in as an urgent referral but the other area may change that so I have no idea how long now I may be waiting.

Does anyone know how long it is usual/safe to wait? I do have a stent now but they have to take it out as it has been in over 6 months and apparently may have stopped working.

Thanks if anyone can advise!

3 Replies
oldestnewest

Hello Misfratz, I have looked up 'gross hydronephrosis' on the computer, and am surprised you have been on a waiting list for so long - you have not said which country you are living in, so I am assuming its the UK where waiting lists are very long! I would go back to your General Practitioner and say you are very worried about what the urologist said, and that you would like to be referred to an efficient Renal Department who will see you soon. (of course, if you have appropriate medical insurance, you can get a much faster consultation through the private practice route).

Whatever you do, please do not let it rest at this point, you are entitled to see your doctor again until you are helped, that is what they are there for. If you are not taken seriously, find another doctors' practice that will accept you - its easy to change if you can find another practice near you - OR you can ask to see another doctor at your existing practice.

Sorry not to be able to offer much practical advice, but hope this will help you, good luck - Curleytop1.

Reply

Sorry for the delay in getting back to you- yes I'm in the UK, and unfortunately in an NHS trust which is in special measures. I'm going to try and make a GP appointment this week as have been feeling awful over the weekend- unfortunately my work have pretty much run out of sympathy as it's been going on for so long so I'm trying not to take any more sick leave, I am kind of at the end of my tether really. My family are trying to organise private if we can't get anything sensible from NHS but have been quoted £8000+ for the op which is obviously not the kind of cash most people have readily available! I sadly don't have insurance but seriously considering it for the future now.

Thanks so much for replying, I really appreciate it.

Reply

misfratz, thank you for your reply, I'm pleased I have been able to help you a bit. Now I know you are in UK, I've had another thought - what about contacting your local television station, particularly the news and local information section? They may agree to highlight the local situation, which could lead to improvements in the service for kidney patients. If you do not get any better service from your local GPs, I don't see that you have much to loose by letting the local community know what is going on by whatever means you think is best. If you are lucky someone locally might be able to help you further - wish you well - Curleytop1.

Reply

You may also like...