radical neph March 22. 2023

tonmonte

Good afternoon

I felt like I had an obligation to sign up and post for this site helped me tremendously. I didn't have time to do it before surgery but now I am in the position to be thankful, grateful, and willing to help others. Here is my story and some tips for others>

• 62 years of age, history with uric acid stones that started at 50 . The only med a take is allopurinal to keep uric acid down.
• good blood pressure, very healthy, heavy set but solid . Road bike, played hockey, and still walk regularly
• at 50 through imaging they discovered renal cysts on both kidneys but mostly on the left , never were concerning until Feb of 2022 when my doctor said lets look into it for the cyst was 3.2cm in size located on the upper pole of the left kidney. Kidney specialist said I have mild kidney disease but would never to on dyalisis given my GFR is 95 and at my age I my kidney are functioning normal.
• Ultrasound said no solid mass, MRI inconclusive, CT in Dec of 2022 with contract stated RCC in that 3.2cm mass.
• saw surgeon in Jan of 2023. He said I'm the surgeon and you need surgery for its confined to the kidney .....xray confirmed. He said I need a partial and given where its located he still put it at 85% success rating. He said I need a full cure given my age. I signed off in the event I needed a full removal.
• Surgery was scheduled for March 22. Walk walk walk and walk......get it......before surgery my BP was 130 over 84.....and I was walking 15 to 17 miles per week. My GFR average 95 for both kidneys. Once more please stay positive and walk, walk, walk just like forest gump. It helps with your recovery. The planned surgery was 3 small incisions and it was not roboitic surgery.
• I awoke to the doctor saying things did not go as planned , the next day he said I had lots of sticky fat on the top of the kidney but the good news is that my right kidney is very good (albeit I do have a cyst or two on it!) The surgeon said they attempted sparing but the fat and the small size of the tumour (finding it in the fat ) complicated matters. For margin reasons and as well excessive bleeding lead them to make a decision to remove the entire kidney by incision of approx. 5"
• Tests on the kidney stated it was a low grade cancer and would need to be tested once a year only.
• POST surgery
• I tolerated pain and was on morphine one night of the two in hospital, I took tyennol the rest of the time ......but do not be a a hero. Take your meds!
• I was out of bed 2 hours after surgery but vomitted in my firsts attempt
• I was walking the halls the next day, and walking my street 4 days after surgery , walk walk walk if you can!
• I have noticed a changed but I do get itchy at different places of the body. It could be my mind!
• Phsically I am ok but mentally no given it was rated at 85% and ended up loosing a kidney with a 95 GFR for both kidney emotionally hurts!
• I am not sheduled to see a kidney specialist until July but I demanded to see my doctor next week for a new GFR reading and ask about why I'm itchy! Is it kidney disease. Before I had slightly higher protein in my kidneys, normal potasium, normal sodium, normal phophorus.
• I am even more cautious about eating......they say do not change your diet with one kidney.....do so please....watch the things above.
• In end......take the advise from people here....the surgery will make you a nervous wreck but its not that bad, stay positive, take your meds for at least the two days after the surgery if your not a pill taker! 4 weeks later I can walk 5 miles in one walk no problem every second day......I am loosing weight and I don't miss the foods that I ate.......buy an air fryer......if you like pizza have it veggie style with little sauce and cheese, if you like pasta have it white with garlic and olive oil, eat berries as your fruit.......and maybe get a second opinion as well for I didn't . I don't blame the doctors but it was a blow loosing a kidney for my mind was set on that 85% success rating...life has changed and I am worried silly about that right kidney with a cyst on it. I hope if I am still labelled as having kidney disease this saga doesn't continue.
• God bless all of you, stay positive and enjoy life best you can with your loved ones. Its different for all I realize this but if there is hope take the calculated risk but you never know how things will go after surgery. Good luck to all.

AliceB1950

Hi and welcome. Why do you seem so concerned with a GFR of 95? That's so much better than most of us could ever hope to attain. Most people post-surgery drop to the 30s, and eventually settle in somewhere above 50 if they're lucky. As my nephrologist explained (and I only saw her once several months after surgery just to touch base, and so she'd get my blood and urine results from then on) if you've got one kidney, don't expect the same numbers as a person with two. I had my nephrectomy in 2018 when i was 68, and my numbers are just now settling in above the 50s. Not one of my doctors have ever been concerned, and I see a PCP, a urologist, and an oncologist (dye to other cancers I had), plus I'm followed by the nephrologist.

tonmonte

https://csn.cancer.org/discussion/comment/1705504#Comment_1705504

Thank you Alice. I'm happy things are working out for you. Allow me to clarify...my gfr was 95 with two kidneys but yet haven't had a follow up with a nephrologist. Scheduled for July. I am seeing my family doctor this week ....the only change I've seen is the intermittent itching and my mind is telling me the sole kidney can't keep up ....I'll demand blood work this week. Maybe the nerves that were cut with the incision are healing or damaged resulting in itching like pins and needles I don't know....that's the problem with the mind...the worry etc...guessing starts! Regards

AliceB1950

Your gfr looks to be fine even with 2 kidneys, and there are probably hundreds of reasons a person can itch.

Having a tumor on one kidney likely affected your numbers by a small amount. It's never good to jump to conclusions based on one reading.

tonmonte

https://csn.cancer.org/discussion/comment/1705537#Comment_1705537

Thank you. The gfr ranged from 92 to 95 with two kidneys and yes the tumour. I'll find out what's it decreased to with the one kidney later this week and again in July when I see the nephrologist

tonmonte

Hi for those interested regarding gfr dropp with one kidney....95 in Dec 2022 with two kidneys....56 blood test result yesterday. Red cell count down likely to excessive bleeding during surgery....creatine spike from 74 to 117 which is likely expected.

donna_lee

With tongue in cheek, "It's a numbers game." Eat plenty of red meat/proteins to manufacture RBC and WBC...which makes creatinine go up and eGFR go down. Also don't get any older. My eGFR was 54 prior to Radical surgery for Stage 4 cancer (mets to liver, and nodes), and that was 17 years ago. Now I'm lucky to be at a 30.

My Nephrologist and PC are my drill sergeants, now. Drink lots of water, avoid carbonated/flavored beverages, avoid fats., etc. For the next few months, I know I'll be fixing and eating lots of veggies...as my husband plants some good stuff and some weird stuff. Kale is not my favorite.

Pain after surgery goes with the territory. And part of it is your new awareness of your body. And that is a good "problem" to have. I had no visible symptoms, until a regular exam showed Haematuria, and the last minute US showed masses in the kidney and liver. And the rest is history.

Best Wishes in the battle. donna_lee

tonmonte

Thank you Donna. All the best to you. Your right rbc wbc is normal now but I've seen my creatine go from 117 to 130 and my gfr from 56 to 50 and urea higher. So I'm concerned with the one kidney....I had sciatica and I haven't been able to walk and I need to be more disciplined with diet...all plant based protein going forward . The 6 point drop on gfr has me stressed. I got an appointment with the nephrologist next week thanks again

donna_lee

But at least you celebrated my birthday in style, i.e. fancy gown, special meal, getting a bit high, transfer by special wheeled vehicle, and attendants every place you turned. And probably didn't sleep well after the celebration. At least you didn't have to get up to go to the bathroom.

Enjoy your day. donna