Hi Phil, I’m new(ish) here too and recently went through surgery to have my kidney removed. This is a really useful forum for questions, sharing concerns. Let us know if we can help.
Well I didn't feel good for all sorts of reasons. Technically difficult and the diagnosis had been missed at my crummy local hospital who then resorted to telling lies. Not the best time especially as I have other conditions. Anyway it is done now thanks. Needed two anaesthetists and two surgeons . Whilst on PCA pain relief it is not bad but it gets harder after that goes. I still feel hot and sick but at least I can sort of walk to the toilet without dreading it for hours beforehand. They think they have got it all.
If you are not happy with the hospital you can use the Patient's Leason Service, who are independent of the NHS and will fight your corner. It is painful when recovering, but you should not be in agony, ask to get your pain relief revised. Don't forget you have had major surgery, but it does get better slowly, and don't forget mentally you have taken big knocks, finding you have KC when you weren't expecting it followed by a major surgery is a lot to deal with! If you this is bothering you, don't try to be brave, get some support, I can speak with some experience having suffered from depression from my time in the services. Be kind to your self and get as much help and support as you can, it's a lot to go through and you don't have to do it on your own!
Already exhausted Complaints Investigation , they made 3 serious factual errors in first paragraph of their response so it has been escalated. PALS are arms length but not independent here. In fact PALS often cancel their own work to fill in Reception roles etc. talk about a conflict of interest. It is more acceptable to go via Chief Exec.but my local hospital is still in Special Measures. I already was having other treatments elsewhere so it is all now in another county....where I keep coming across other people with horror stories from my local area.
Being told you don't have cancer and then it only being picked up when a Rheumatology Professor reads back on the real results is not good. I could have walked around forever with no idea. They had even despite scans etc. tried to put it down to womens' trouble or constipation. This despite me peeing pints of burgundy red urine,having to pee 30 times or more a day ...fortunately the Rheumatologist has known me for years and he and I went through all tbe records as he knew I don't make a fuss and had to be ill. I had previous pyelonephritis in that kidney causing sepsis....even that didn't make them careful. Yes, I am pretty annoyed. Thanks for lisyening and responding. How are you doing? xx
Quite good. My kidney was removed in 2008, then in 2012, 2015 and 5 weeks ago had ops on my lungs to remove some KC. It's not lung cancer, just KC that has moved. So I am stage four but stable. So I have not needed any of the special drugs yet!
I count myself lucky like you that it was found in the early stages, and not spread everywhere and a short future.
There is a up side to all this, you realise the material things in life aren't important, but time with my wife, or going out for meal with the kids, or having a laugh with friends is the most enjoyable things in life.
Hopefully life will settle down for you now, and you can start to enjoy your life
