Nephrectomy advice

Hello 

i truly feel for your situation i had a left nephrectomy a few years ago. They wouldn’t let me leave until I could go up and down some steps. It’s not possible to sleep on the wards to much going on I had a catheter and they didn’t do a great job of care. It was covid times and in agony I walked those steps. To get home so day 3 I was home. They will give you pain meds to manage the pain once stabilised. Which maybe what they are doing just now. There’s no getting away from it, it is very sore and you will heal much better at home. Physio should help you with getting up and down from the chair or bed. They had a bed that moved up and down so it helped to. The nurses will visit you at home and you will need to injection yourself for 28 days while you heal. You will get your mobility back but it will take a while you can’t rush healing. They will discharge you when your well enough to leave and it sounds as if you might just need a little longer so be kind to yourself while they support you with the right level of pain meds. 
take good care. 

As above take all the time you need. Took me 2 months to get back to so called normal.. They wouldn't let me leave until I could inject the blood clotting jags but really wanted me out asap. I found it hard to sleep in me left side where I got my kidney removed. 

Everyone is different. Everyone's pain threshold is different. Everyone's surgery is different. And everyone's recovery trajectory is different. I am 30 years older than you and I tend to bounce back after surgery (I've had two now) which they find a bit hard to understand given my age, but I also happen to have a high pain threshold. They probably assume that someone young will recover quicker than someone much older, but this isn't always the case as it depends on so many factors, such as I've mentioned above. No two instances are the same, ever. I well remember that initial push-up from the bed...I thought I'd never be able to get out of bed ever again!!! but bit by bit, almost imperceptibly, I started getting out of bed slightly easier each time. I found my own ways of getting in and out of bed...the nurses found it really strange that I couldn't sit on the edge and swing my legs up. They said, how do you get into bed then? I said, I always kneel on the bed, and get in that way. I always do it that way anyway, and I found it feasible to do this after the surgery but I remember coming down from Recovery to the ward with one leg hanging over the side of the bed as they had tried to get me to transfer the way they wanted me to and I couldn't get my other leg onto the bed! What I'm saying is, do what works for you if you find something that does. My way of getting into and out of bed in those early days, was less painful for me than if I tried the "recommended" way. 

You say you feel a bit better once up and walking. Try walking a little bit further each time. Don't overdo it. My first surgery, I would walk up and down to the nurses' station about every hour. On day two I walked to the outside door (about twice as far) every hour...had a rest maybe, then walked back. I had them remove the catheter asap each time because I knew it would encourage me to practise walking if I had to get to the toilet.

I'm surprised that they are keeping you in so long just for you to become "more mobile". Is it that you don't have anyone at home to help? My nursing teams weren't really bothered that I was still having trouble propping myself on my elbow to get out of bed on day two...they still wanted me out on day three! You sound pretty mobile if you are making small walks up and down once you are out of bed. I actually couldn't sit down in the hospital because the chair provided was too low and I knew I couldn't get up from it if I tried to sit in it. So I spent the whole time between walking up and down and round and round my bed, and lying on the bed which was hard because of the getting on and off it - once I was on, it was a struggle to get off so I tended to stay off and just walk and stand!! 

Don't rush your healing. Healing seemed slow to me - by healing, I mean, the ability to get in and out of bed, to walk further than a few dozen yards, and once home, to walk further than 200 yards...but I tried to take things very carefully and not try to do too much walking or moving, and by taking things slowly I finally noticed this gradual increase in mobility and decrease in discomfort. However, this healing is best really done at home, because you are in your familiar environment, no sleep disturbances from others around you, and even things like the challenge of figuring out how to heat up a meal or - in my case - walk the dog without pulling on the surgical site, took my mind off what I still couldn't do and focused my mind on things I needed to start doing again.

Thanks everyone. Made it home yesterday after moving more. I dont think it helped that the staff on my ward were not very nice or helpful. The pain is still really high and I've just woken up after managing to sleep for an hour and 45 minutes. Luckily own sofa has a recliner chair so I have decided to sleep on thst instead of attempting to lie down in our bed which means getting up is slightly easier now. I know I have to be patient about my recovery but would just like a bit of relief from all of the pain! 

So glad you are home , I was so shocked I had a radical nephrectomy at addenbrookes 9 weeks ago .. I was back on the ward at 7pm and discharged at 11 the next morning !  As long as I was peeing and they made me walk 100 lengths of the corridor and said home was the best place foR me : I can’t deny I was in agony for 2 weeks but 9 weeks on im more or less normal . Get well soon xxxxxx

100 lengths!!! That sounds like torture!! 

It was agony but they made it sound like it was really normal so I just did it . Whilst I was struggling to lay back down in agony on the bed they said , can you phone your husband ?  , you can go now . I know they are short of beds but I never left the day ward ‍♀️

Hi,

I know it has been a while since your post but I wanted to reply as I hope it might help other people. I had a radical nephrectomy 6 weeks ago, my surgery was long and complex and I needed 2 weeks in hospital initially and then had to go back in for a week due to an infection. I found the care in hospital variable, sometimes it was very good and other times poor. I would advise anyone having major surgery to have someone to advocate for you, to ask difficult questions of the teams and to discuss poor practice so you don’t have to as I felt too scared and vulnerable to do that for myself. At one stage we had to get PALs involved and they were very good. I don’t want to scare anyone, mostly the care was kind and compassionate but having a person to speak up for you does make a big difference as in general it is the communication that is leaves room for improvement rather than the treatment itself. 
All the best to all undergoing surgery. 

I had a total nephrectomy 6 weeks ago and I was discharged the following day. Although I couldn’t fault the care I received from the nurses, surgeons etc during my stay at the hospital, I got PALS involved leading up to my operation. 

My tumour was picked up on a CT scan (for something unrelated) 5 years ago. I was never informed of it, nor did they monitor it. 2 years ago, it was picked up again on an US scan, again, I was unaware of it. In May this year, I had another US for gynae related issues. The tumour had more than doubled in size, and I had to read on my NHS app that I had been referred to urology for suspected cancer! I was sent for 2 CT scans, (abdominal and chest). I had to read all my results on my NHS app and Google the medical jargon as no one rang me to discuss/talk through anything. 6 weeks later, I saw the consultant who told me that they were 90% sure the tumour was cancerous and would have to remove my kidney!  It was a massive shock because I thought it wouldn’t be cancer due to the timeframe in which I saw the consultant. I also never expected to be told I’d have to have my kidney removed. Last Tuesday (5 weeks post op), I was told my tumour was cancerous. 

The lack of communication and empathy that I received was shocking! Also, at no point prior to surgery and after, was i offered any form of support, not even a leaflet! 

It was, and still is a lot to get my head around and still now, I find myself having wobbles about it all. 

Thank you for all the replies! I ended up being in hosptial for a week. Once I was finally home the recovery started to improve. The first couple of weeks were very hard but it did gradually get easier especially with daily short walks. Tomorrow will be 8 weeks since my op I am getting there fitness wise and have started back a few hours at work this week. Emotionally I have found it all a lot to deal with and still working on processing what has happened over the past few months.

I did put a complaint into pals as I was unhappy with the post op care at the hospital and I was able to speak with the sister of the ward who was very supportive and took on board my issues and would implement training for those who needed it.