Radical Nephrectomy

Hey, I haven't had a nephrectomy, but I just wanted to highlight that it looks like you might have added a mobile number in your post.   You can edit it out before the spammers catch it!  

Hello everyoneI 

I had my kidney removed last August. 

I went on immunotherapy for 4 months but had to stop treatment as I developed side effects. 

I have sarcoidosis in my lungs but have been put on steroids which has helped with my breathing. (Caused by my treatment)

The fatigue is unbelievable I have never felt so tired.

The recovery from the operation was straightforward with no complications 

I hope everyone is keeping well 

Thanks, not sure how that happened but the moderator dealt with it.

Hi Mike M yes a very similar experience as I had a radical nephrectomy last September unfortunately mine started as a robotic surgery then escalated into a full blown operation due to the size of the tumour hidden by my kidney it was having a party.

I was reasonable fit and after 3 months went back to work but still felt fatigue I like cats united started immunotherapy and also had side effects which meant even more fatigue. I feel like I am almost getting back to normal however my friend has made an appearance once again as I get regular CT scans due to immunotherapy trial.

I do think that it takes longer for your body to adjust to having just one kidney but everyone is different.

Take care

Mike 

I really think having a positive attitude helps but I know that it's always going to be at the back of your mind no matter what.

Hi cats united I also had a similar experience especially with the immunotherapy which I still would do again but the side effects were almost as worse than the operation.

It took me being admitted again for my consultant to investigate my treatment by another doctor to give me a course of steroids which stopped the side effects immediately also made me hyperactive to be honest.

The fatigue was really hard as I would just fall asleep at the kitchen table regularly and didn't watch a full movie or program without falling asleep.

Take care

Mike 

Hi Cats United, thanks for replying, good to hear from you. For me, I think I just don't like fatigue, hopefully it's only a few little things which are causing it, I have my next scan in 2 weeks so fingers crossed. Best wishes and take care.

Thanks Mike. Hopefully for me it's just that a few little things are adding up and causing the fatigue. I think the operation affected me a bit more than I originally thought it had. It's definitely important to keep positive. Sorry that yours became more complicated. My operation was thankfully straight forward. Best wishes and take care.

Hi Mike, I'm 7 weeks post op from an open radical nephrectomy (2.2kg tumour and left kidney removed).I was diagnosed with chromophobe renal cell carcinoma and by all accounts am lucky as no further treatment required following the op; I'll have 3mth scans as well.

I guess as it's still early days the fatigue I am experiencing is not surprising, time will tell how long it lasts. Aside from this and the discomfort from the op and effects of the pain meds (gabapentin) I'm pretty good.

I've not had any blood tests to determine any issues from the op, but reading your comments I'll ask the questions. How did you know you had to take the supplements and other treatment?

Thanks, 

I am 12 weeks post op from a radical. No further treatment or meds at the moment.  I always had poor energy levels anyway but I think now I am even more fatigued than usual. Fortunately at 67 I am retired and I also have another serious condition so I just take it easy. I doubt I could hold down a job. 

Hi AJ, well done, glad to hear you got through your operation well. Yes, at 7 weeks you will definitely still be feeling fatigue. Also, there is a lot of internal healing going on still & for at least 12 weeks, I was advised that by a friend who is a senior hospital physiotherapist who has specialised in preparation for & recovery from operations. In terms of my fatigue, it's likely I'm a specific case here. I think what happened to me is that the cancer & the operation knocked me a bit. Whilst 4 / 5 months later I was feeling really well & with good energy levels, I then took a bit of a dip for a number of months since. But likely this is specific to me. I had a DNA test last February & it indicates that I have specific issues metabolising Magnesium & also vitamin D. So I think the operation knocked me a bit more than I'd originally thought & I then needed to supplement. I was getting a lot of migraines for a period (lack of magnesium can cause, I got checked out by a neurologist via the NHS). Also, I have a genetic condition (gene mutation) which means I have a mild version of Haemochromotasis (tendency towards high ferritin (iron) levels in the blood. So I'm getting that treated now, it's a fairly simple treatment, you just give a lot of blood or get a lot of blood taken over several sessions, but that's leaving me more fatigued as well. What I'd say is don't be shy about getting your full blood count & eGFR levels checked, as regularly as you feel, particular if you ever feel your recovery isn't going as it should or if you take a dip for a while. Of course, recoveries are never linear anyway. But I think blood tests nowadays which can inform where you may need to intervene / take supplemenents etc. are great tools to have & use. Let me just finish by wishing you all the best, these are big life events we've been through. I hope you have a fantastic recovery. Take care.