11 WEEKS AFTER PARTIAL KIDNEY REMOVAL AND STILL IN PAIN ,CANT BEND,WEAR JEANS ETC

Hello I'm so sorry to hear about what you have and are going through.Firstly it may help to talk to one of the nurses here please phone the Macmillan support line at the phone number is at the side of the page. I had open surgery so can't comment on robotic surgery however many of your experiences following surgery sound bad practice to me as does the standard of or lack of care. Leg bags are often used but should not be placed on the bed with you as this can as you say prevent drainage.Blood can flow back into the cannula that your medication is given into.All in all it sounds like you had a nightmare experience.You could put in a complaint about your care through PALS every hospital has one ( patient advice and liaison) 11weeks is a short time as there is still a lot of healing going on inside I was told not to drive or lift anything heavier than a cup for the first three months.I didn't always do as I was told and found if I over did things it would wipe me out for a couple of days. It maybe worth while phoning the consultants secretary to chase up your scan date also you could contact your urology nurse specialist for the same and for advice. As for other people's experiences off running marathons etc well we are all different and individual so it's not a race to see who recovers from surgery the quickest you have to go with how you feel.Yes we do find out who are true friends are too and also some people do tend to think that once you have had your operation then all is wonderful but those that stick around are your true friends the others are best forgotten.I hope things start to improve for you soon Cruton

Hi Cruton,

Really appreciate you taking time to message me.

Thank you for the good advice I will do as you suggest. It has been a nightmare to say the least.

3 Months! wow. But feeling the way I do I can understand that time frame. I nearly at 3 months ...feels like three years.

Wish you well too.

Hi Drumboy.  You really have had a bad time and a rough deal by the sound of it. Since 2009  I've had three operations on my left side: first a kidney removed, then a adrenal gland, then some more tissue from where the kidney was.  These were all major openings and my side now looks like a map of the London underground!   However, I've been fortunate to make a good recovery from each op within a couple of months.  The last one (January) left me with more discomfort than previously and I got pains like a large needle being driven into my lower left abdomen and groin.  I couldn't wear a belt, but braces are OK.  Walking more than 300 yards or so was uncomfortable for the first couple of months, then I got myself an abdominal truss (used for intestinal problems usually).  This helped me considerably.  However, sounds like pressure may not be helping you. 

I think you've every right to be making a fuss and demanding the surgeons sort the problem out.   I had a specialist cancer nurse allocated to me and she gave me her contact details.  I've phoned and emailed her several times and she's been able to sort a number of issues out for me, talking directly to the surgeon and his secretary and thus bi-passing some of the bureaucracy.

My good wishes go with you.

Thank you for the good wishes , sounds like you have had a rough time too . The large needle is exactly what it feels like ,spot on .a belt is a no no as well for me .

i hope you have seen the last of operating theatres .

fingers crossed 

kind regards

Oh god poor you.  I am disgusted to hear that in the private sector you had this experience. I have always sworn by private care I had my partial nephrectomy in 2013 privately as well I must say the hospital I was in I was not over keen but the surgeon was amazing!  You should really go back and see the consultant who did the surgery book an appointment.  I am in Essex so if you feel like you need another surgeon let me know and I will direct you to an excellent one.  I had open surgery but the pain still gets to me after nearly two years I do not think you should rush yourself I know that we expect miracles but it takes a long time.  Me too like had a double whammy had a heart operation three weeks prior to finding out about the cancer!  People are people I have had the same have no clue as to how we feel I have had a breakdown with the anxiety have decided to not bother with some so called friends and family now as you say talk is cheap! Take care and get your follow up CT scans done as well.

Best Wishes

Hello Drumboy. I hope by now you've experienced most relief from your surgery. I am a 55 yo female who donated my left kidney 14 years prior and healed completely. But in 2016 had a partial nephrectomy 4cc RCC found on remaining kidney. Surgery went well, but had a huge clot in ureter that blocked urine flow and built up enough pressure to burst the sutures in kidney. Stent was in for 3 months then removed. For the past year and a half I've had constant pain at the kidney site, not the puncture sites of robotic arms. Now I've been on narcotics this entire time round the clock. Have met with the surgeon, had every test available with no abnormal results. Yes, I've also been told I needed counseling. It's very frustrating. At this point I'm just tired of this unrelenting pain that feels like someone has stuffed their hand up under my rib cage and is holding on. I have been told by a GN that there's a certain number of people who have had a surgery of any kind that will experience chronic pain . There is no reason why this occurs, but it does happen. I find that validating but also sad for me to not eventually be pain free.

Hi , thank you for taking time to message me . I had forgotten all about that post . It will be 3/4 years I can't remember as have this flu that's going around at present .

How dreadful to think you gave up a kidney and the other one developed Cancer . Theres no justice for some people is there ? 

The blockage sounds horrendous , that didn't even dawn on me that could happen . I hate to think how they sorted that out ? 

I do feel for you , I have never felt quite the same since the operation and still things like sweeping up with a broom makes it all ache and feel tired a lot of the time . My outlook and disposition has changed and I'm very depressed a lot of the time . I haven't worked properly since and Im having to sell the house due to financial pressures . Money has literally ran out . And move to a cheaper area . The yearly scans are like Russian roulette each year waiting for the results as I sure you appreciate ? Friends just don't under stand the implication of it all . What really pressed it home was the words the consultant wrote in his summery of the scan in November . " There is no sign of decease reoccurrence" he was only stating facts but it only that tiny word "no" that makes that sentence ok .  I had to read it several times . I'm just very edgy still . Life pretty grim with one hing and another and no sign of things improving for the moment . Could always be worse of course .

I wish you all the best Drummerboy 

Same as you, robotic partial nephrectomy.  I was uncomfortable for 18 months +. The numbness will always be there and is disconcerting.  I wore a nightshirt and dressing gown for 8 weeks before I even tried trousers. Didn't drive for  10 weeks. Still don't feel completely ok now although subsequent scans have been clear. Some urological issues ongoing but not cancer. 

X

I'm so glad someone "reactivated" this thread recently. This entire forum is by far the most comprehensive community Ive come across of REAL experiences, as opposed to what the hospitals and surgeon's tell us "should" happen.

I am 8 weeks post partial nephrectomy, and the pain in the kidney area/flank is crippling recently. I came looking for some answers, as it's the weekend, and even if I call on Monday, getting a call back is iffy at best. 

On one hand terrified of the prospect of years of potential pain, but on the other, strangely reassured by the fact that others have suffered the same.

 I was told only that I shouldn't drive for 2 weeks, or work for about 4. That's it. So was I supposed to be all better by then?? 

I stayed out of work for 5 weeks, and am back, but going at it so slowly bc the pain and exhaustion gets overwhelming. I work for myself, so cutting back on my working so much to accommodate the "healing" is a financial strain. I can totally see how the original poster is finally suffering, even years after surgery.

I'm beginning to feel like noone believes me. Today has been excruciating. The incision sites are also all very tender, but the kidney area is throbbing. My flank is also painful to the touch in the kidney area.

I was diagnosed, completely by accident, at age 46. Told I should be in my 70s before I even potentially got RCC, but LUCKY ME. I went from feeling young, to now I feel elderly. 

Everything has changed.    :/

Hello I don’t know if you are a memebernof the fb group called Uk kidney cancer support network? It’s a excellent site with lots of advice etc, go and see your GP but you could be suffering with nerve damage due to the incision, I’m sure your still in shock as you’ve not really had time to digest what has happened.  I’m 18 months on and still have days where I think about it but it does get easier.

Hope you feel better soon

Lisa x