Has anyone had a Neprectomy

[Braegorse]

I'm terrified as I'm booked in on the 20th and would really like some advice

[Caflohr]

I had a nephrechtomy 5 years ago due to a tumor. They were sure it was cancer but luckily it was benign. The tumor was causing all kinds of hormonal issues. Glad to be rid of it. They did what they call bandaid surgery and recovery was not difficult. I was in the hospital for 3 days.

I’ve done well with the one kidney even though I have stage 3b CKD. I follow a strict renal diet and have actually improved my kidney function.

I do follow up every six months with my PC and see a nephrologist about once a year. I worked with a renal dietician through Divita online.

Be your own advocate and don’t be afraid to ask for what you need.

Best wishes for a rapid recovery and successful outcome.

[userotc]

My mum has had a similar experience to Caflohr except hers was just over 4 years ago and tumour was cancerous. Also we are having to manage diet and well-being (main treatment for CKD) ourselves. This seems to be mainly because we are in the UK and her nephro has not suggested a dietician.

But we continually support mum and have relevant, personal experience and training.

Her eGFR has recovered to a similar value as when she had 2 kidneys which is good. We are now focused on trying to reduce urinary protein.

Good luck.

[sanscrip]

I had a radical nephrectomy a year last February. Keyhole surgery at Bristol Southmead (UK).

Surgeon was great, op took 90 minutes. Up and walking next day. Out after 3 days. Stitches out (at home with the District Nurses) after 7 days then rest and light exercise - no lifting for 3 months - wife had to do everything during that period, I think she suffered more than me post op.

Now fully recovered, can do everything as before but have to watch the diet and drink loads !! I do get tired a bit more quickly than before but a small price to pay for a life saving procedure.

I get an occasional twinge where my scar is but otherwise no after effects.

I am CT'd every 6 months to check for any possible cancer spread but so far all ok.

I worried a lot before my op , easy to say dont worry but from my own experience you'll be fine.

Good luck.

[Aus01]

Hi Braegorse. I had an open nephrectomy in Nov 2019 to remove my left kidney. I have suffered with PKD for many years and my kidneys had both grown to about 28cms each. The pressure inside my abdomen was pressing on nerves in my hip, internal organs and my liver, rib cage and stomach. The cysts were continually breaking and causing pain and bleeding including in my urine for sometimes up to two weeks. Pain killers were useless, ultra sounds only confirmed the obvious, my blood pressure was over 200, I looked like I was hiding a beach ball under my shirt and sleeping/moving was difficult. I was a spectacle a hermit a sideshow bitter with pain and discomfort. I was pleading with my nephrologist for help and then after three of the worst years of my life they agreed to remove one kidney however my GFR was only about 18 at the time so I had to have an AV fistula formed in my left forearm first which took another 12 months.

I remember clearly the fear and anxiousness before the surgery that you must be feeling now. Was I doing the right thing? Was this going to help me or create new/more problems? Certainly I was going to have to start hemodialysis soon after the surgery. How was that going to change my life?

In the end though I knew I could not go on the way I was and I found myself on a theatre table with many caring professional people surrounding me willing to help me. When I woke I was in a high care unit, the people were so caring and everyone was helping me recover. I had a 12 inch scar under my rib cage and I was in hospital for about 6 days and included my first dialysis. Physiotherapists came every day and got me up on my feet again. It took several more weeks at home to fully recover but the relief was better than I ever imagined and I am so grateful to everyone who helped me.

My health problems didn't end there. I had a small heart attack two months later from the high blood pressure leading up to the operation and a build up of cholesterol and had a stent inserted, I started hemodialysis three days a week for 5 hours at a time and worst of all I got shingles on my face and head. BUT the best thing I did was getting that nephrectomy. It changed my life...now I look forward to the challenges ahead knowing that there are good people ready and willing to help me with whatever comes next and I feel so much better. Stay positive and it will soon be behind you.

[Braegorse in reply to Aus01]

Thank you for your reply. My left kidney is also 28cm and is causing a huge amount of difficulties...I can not begin to imagine both kidneys being that size! My kidney us pushing against my stomach and nerves at the bottom of my spine and the pain really is unbearable at times. It's causing a mass in my stomach and this has now been going on for a total of 3yrs but has worsened over the last 18 months. My biggest problem is I suffer health anxiety so am driving myself crazy with worry. Xx

[Aus01 in reply to Braegorse]

That nerve pain was unbearable and it was definitely the turning point for me but it fully resolved itself after the operation. Looking at the other replies on here from Caflor, Userotc and Sanscrip (hello everyone) you should do well after your recovery. They make good points about diet and exercise in the future to protect your remaining kidney. I know your worried now and it will all start to happen very soon but remember this is only the beginning of your journey to full recovery. There are plenty of good people here that can give you advice on everything from dieticians to medications and exercise and these are all so important going forward.