Post operative recovery updates - hints

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Hi all , I’m two weeks into a recovery after a robotic assisted partial nephrectomy on my right kidney . First off let me say I’m so grateful for the quality of NHS care and treatment I’ve received at my local Trust and subsequently at a National centre , just convinces me further how we need to fight for our NHS. 
I was operated first thing on a Wednesday and discharged 2 days later on Friday as all had gone well - 2 out of 3 concerning growths removed , 5 portal points on my tummy . Drain removed morning after surgery as was catheter . Don’t panic if you don’t get impulses from your bladder straight away , it took till midnight till mine started to “ wake up”. Apparently it’s not unusual to have it reinserted and then removed later . As soon as drain out I got up and sat in a chair and took a walk every 1-2 hours , whilst sitting or lying down I did foot/ calf stretches . Did feel tired and pain relief meant my appetite was off . I had anti emetics but to be honest I only felt better after I was physically sick , sometimes I think Our bodies just need to get rid of crap . First week home took th8ngs slowly but kept moving every couple of hours and had 2 short walks outside daily. Now end of week 2 my energy levels are returning to a recognisable level , stitches starting to dissolve and glue nearly all gone . I found as a woman forget the bra for a while , wearing a cotton vest/ T shirt was MUCH more comfortable . First week virtually no cloth8ng that puts pressure on the portal points , week two trousers bearable . You have to shower not bathe and I found the warm shower soothing even if you can’t lather up the tummy area . I sleep on my left so I was fine but don’t worry your body seems to automatically protect the healing area . No lifting and if you feel tired listen to your body and rest . I’ll find out soon if the margins are clear - the surgeon was pretty clear he thought the histopathology results would be favourable . Either way the thought of surgery was much worse than the actual experience . Thanks to all you lovely people who reassured me .

  • Sounds good!  Brilliant, wishing you all the best and continued recovery.  

  • Rennie I really admire your self discipline and motivation to keep moving so frequently. Unfortunately I had very degraded mobility for another issue before my kidney trouble started. Anyway you are a shining example of a speedy and straight forward recovery. For many people the reality does not seem as bad as they feared. So thankyou for giving the forum such a detailed account. Good luck to you.

  • Thanks Simon , sorry to hear of your mobility issues . I am so grateful I went into this without pre existing challenges other than high blood pressure . Whilst I was in hospital I saw just how many ppl with kidney problems have very complex problems that get in the way of them being able to do the things I did . Believe it or not it helped motivate me as I knew there were no reasons I shouldn’t maximise my recovery opportunities . I said I would share my journey when I first came on this forum so anyone finding themselves in a similar position might be able to use some of my learning . For me it was not knowing that scared me so much. Kidney cancer , as with so many cancers is not one thing and as each of us is so individual how our bodies cope is equally different . I particularly found my named CNS such a support , just knowing she was contactable by phone even though I only needed to do so once was such a boost . 
    Simon , I wish you well and thank you for your good wishes . 

  • Thanks Rennie. I am seeing an orthaepedic consultant this week. Top man in the county. Its the first appointment with anyone since my CT scans so hopefully he can see what is up. I was quite fit until suddenly struck down a year ago aged 66. It was only the investigations for my legs that detected my kidney cancer, For me, the cancer at least at the moment is the least of my problems. Long may it last. You mention complex needs. Due to my cancer they immediately took me off Imraldi injections for my hydradenitis. It has taken me three months to get alternative treatment. Good luck to you.

  • Good luck Simon , hope you get it sorted . Please do let us know .

  • Yes ! very reassuring.... glad your ok and on the mend...im 3 months in after diagnosis so still awaiting 1st consultant appointment...very tired, list alut if weight over 4 months..unable to eat much...pain in left flank area too...linda

  • Hi Linda sounds like you are having quite a time of it . Is it worth chasing your consultant’s secretary for an appointment and let them know you will take a cancellation at short notice . In my early days I did a lot of chasing and it did pay off , know it’s hard as chasing also takes energy . The Health Service is under such pressure it’s also possible that some referrals fall through the cracks . Once you have your treatment plan things should progress and having a named CNS is really helpful as they advocate for you. 
    Please keep us informed about your progress . Lots of love .

  • Hi Simon, did your appointment go ok?

  • V good of you to ask thankyou. I had an odd experience I have posted about in that my scans were not like the same scans I apparently had seen with a different consultant. There is a possibility my kidney tumour damaged the route of the nerves down that side. Or it might be some kind of internal polynidal sinus. Referred back to urology. Onwards we go.

  • Well not quite what I expected Simon , was rather hoping you would have a diagnosis and treatment plan . Fingers crossed you get a Consultant appointment quickly . Best wishes and thanks for taking the time to update on here .