Well stalling and denial did not work...who wants to help me prep for a full nephrectomy?

CCope81
CCope81 Member Posts: 21

I've spent the last few months in denial about the mass growing on my left kidney. Since it's grown over a CM in less than 6 months it has to go. Unfortunately Herbert the kidney mass is too close to the main blood supply to the kidney and there are too many risks associated with a partial. Anyone want to help me prepare for this? I bought a new recliner to sleep/live in for a couple days. Whats the pain like? How long? What works? What doesn't? Tips? Do's and Don'ts? 

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Comments

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    Welcome

    Ccope81,

     

    Unfortunately denial does not work. Think of how much better you will feel without Herbert.     I wish I could tell you it was painless, but I would be laughed off these posts. Sorry can not help you with the Prep.

     

    Icemantoo

  • Steve.Adam
    Steve.Adam Member Posts: 463
    edited November 2016 #3
    Hi CC

    I can't help either. I'm in a similar situation expecting to be scheduled for an operation in a month or two.

    So please tell us all about your prep, op, and recovery.

    I have recently become extremely curious about these things.

    Steve.

  • dhs1963
    dhs1963 Member Posts: 513
    Pain meds are your friend

    But, they are dysfunctional friends.  They seem good.  But, they keep you from doing much.

    Plan on beeing out 5-6 weeks.  DO NOT LIFT.  NO LONG TRIPS.  This is a MAJOR surgery.

    Good luck...

  • stub1969
    stub1969 Member Posts: 954 Member
    I had a partial, but...

    I can tell you to take recovery serious.  Don't overdo it (I did and experienced a sharp pain at my surgery site for a few days).  Other than your nerves getting the best of you pre-op is a breeze.  These are professionals and they know what they are doing.  Scans, blood work, questions, and evaluations are part of this.  Surgery itself wasn't too bad.  I appreciated our doctor keeping my wife and parents updated in the waiting room.  I'm sure most hospitals follow this procedure--if not, ask about it.  The first night and first week after surgery is pretty tough.  Take your time and keep up on your pain meds.  Each day gets better.  I encourage you to walk as much as you can.  There is a balance to walking too much and not enough--you'll know the difference.  One of the worst pains was in my shoulder.  The gas they used to "fill" me up causes this.  Walking and rotating your arm is the only remedy.

    You'll get some great post-surgery advice from this team/club of experts.  Take care and you'll be in my prayers.

    Stub

  • lobbyist0724
    lobbyist0724 Member Posts: 484 Member
    edited November 2016 #6
    I had an open partial surgery

    It is something that is hard to believe and accept as it is more a shock to us when we hear the news from the doctor. To me, the most important thing is to walk as soon as the nurse ask you to, it helps to speed up the healing, the pain, remove the gas from the body, improve bowel movement and etc... I didn't even need the tylenol after I returned home (except I took one before bed just in case, since resting is very importance for recovery). Don't overdo it, just 5 to 10 minutes, do it more often is more important than a longer duration.

    My tumor was located on the upper pole abutting the vein too, my doctor said there was a 15% chance he might need to convert to a radical (he said that's just by the book). The risk is mainly because there is a chance that they cannot stop the bleeding within the given time. But my doctor ensured me that it would be very unlikely. They mention it just because they can't wake you up from the surgery to ask you for a consent if a conversion is needed :) So I had a successful surgery that my doctor had to cut along the capsule of the tumor to avoid the vein. So I would say don't worry about it, it is very routine and I am sure your doctor has done at least dozens of this same surgery (likely more) and they all know how to avoid the vein when it is needed.

    YOU WILL BE FINE!!

    P.S. I was able to sleep on my side and I had never used my recliner, but a couple more pillows will be helpful!

    I wrote a long story about my experience, here is the link: http://csn.cancer.org/node/306100

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    Hi! Have you ever had any

    Hi! Have you ever had any abdominal surgeries? I have had several, last  2 were robatic laproscopic so just some discomfort in comparison. Those smaller laproscopic incisions are less invasive, so hurt less.

    What HURT was the trapped gas in my shoulder! They pump up your abdomen with this gas so surgeon can SEE around other organs and such. It doesn't come out like tummy gas does. It gets trapped for several days. I simply moved my arms in circles and got up and gravity seem to eventually move it out.

    You can walk, but no exercise for at least 30 days. Listen to your surgeon's instructions and follow them, even when you feel better.

    Now yes, there is tenderness, esp, around the incisions. So I wore a lumbar, velcro wrap and put dry ice blocks over the incisions (the largest one where the kidney is removed from) and THAT helped reduce the tender swolleness. Drug stores sell these wraps. They are for bad backs, but supported my aching, sore muscles.

    I didn't have a recliner, but many use it. I used a grab bar that slides betweeen the mattress and box spring and used that to pullpush myself up. Also you need to roll gently to your side and push yourself up.

    Take a deep, full breath, then as you move, let this breath out slowly, with teeth apart, blowing slowing through your mouth. I use it for ANY kind of intrusive movement or procedure where PAIN is anticipated. THIS is probably why I can say I only had discomfort, and not excruciating pain.

    As a result of using ICE, I was able to stop opiates in less than 5 days and move to tylenol and Tramadol ( a narcotic, but its not an opiate). Because you only will have 1 kidney, you can no longer tax your remaining kidney with NSAIDS (like advil, ibruprofin).

    You'll make it, we all do. You'll get your energy back but you cannot RUSH this healing time. You don't want to cause anything inside to rupture or not heal well.

    Keep a list of questions and we'll be here to help you in any way we can.

    Sending you calming thoughts, ...so.. do your breathing exercises to keep yourself relaxed.

    Warmly, Jan

     

  • myoung790
    myoung790 Member Posts: 75
    edited November 2016 #8
    I lost my right kidney 2

    I lost my right kidney 2 years ago.  I was 41 at the time.  Had a robotic surgery.  I actually didn't feel all that horrible.  I was tired for a bit, but was able to go back to work after a couple of weeks.  Honestly, I was more uncomfortable from all the gas.  

    You will be fine and your will feel so much better once this is past you.  I'm scheduled for my CT scan in December.  Here's hoping there are no issues.

  • donna_lee
    donna_lee Member Posts: 1,023 Member
    Besides the recliner....where to start?

    Make sure you have all affairs and papers in order; and I don't mean you should have another affair at this time or put paper on the floor for the dog.

    Bowel prep the night prior is a necessary evil.  Depending upon what they have you use, some can be more irritating to the exterior posterior than you would wish for.  Have Desitin or diaper rash ointment close at hand for after the baby wipes.

    Get your house ready to return to: light juices, yougurt, bananas, soups.  Carbonated beverages aren't recommended since the adage is bubbles in/bubbles out.  And extra gas in the digestive tract is something you don't need at this time.  Have friends, family, etc. lined up to bring in a meal, do the laundry or dishes, bring in the mail, run errands, etc. Have extra throws, blankets or pillows near where you will be roosting during the first few days and within easy reach for you.  Cell phone, new batteries in the remote, a couple of new magazines won't hurt, either.

    Sleep is your best friend, and it will help you in recovery.  If you have a shower with a hand wand and a stool or seat, so much the better.  It will feel good just to sit under the warm rain and get the hospital betadine, smells, sweat, Foley cath bag and drain tube messes off your body. 

    Clothing comfort is what you want. Long T's, Nighties, or really loose PJ's. Then loose sweats.  Unds, if you can wear them will help you feel like you're getting better.

    The pain meds you will be given have codeine, which is constipating.  Continue to eat and drink plenty of fluid.  Metamucil or a similar product can help during this stage.  Nausea and vomiting is not normal.  Call the doc if this develops.

    Get outside as soon as you can.  Smell the fall air, watch the birds, or watch people.  Have someone take you to a coffee shop and enjoy being in public so you don't get cabin fever.

    Be alive, be hopeful, Survive!!!  That way we can all be happy.

    Love and hugs and all best wishes,

    donna_lee

    It's been 10 years, but who's counting?

  • rhominator
    rhominator Member Posts: 233
    edited November 2016 #10
    Hi There

    I was hit with the hiccups and nausea after my full neph. [brutal]  I don't know how you can prepare for that, 'cept to have an advocate in your camp to get you the meds you need right away.  My wife made sure I got everything I needed from the doctors and nurses in a timely fashion.  And my church's support network was there for my wife while I was in the OR for five hours.  So, I guess it comes down to having people around that you can count on to help you out.

  • Footstomper
    Footstomper Member Posts: 1,237
    edited November 2016 #11
    OK CC I did this May 1913

    Take a minute to imagine how bad you think this is going to be.

    Its going to be a whole lot better than that. So relax. Nothing in all this is as bad as we think its going to be.

    You're going to have major surgery. Thats easy: You sleep and then a professional does all the work.

    Do you have a partner or friend to support you in the first weeks after? You will need help. There will be some pain, but its manageable (nowhere near as you are imagining) and there are painkillers.

    The first week is the most difficult but it will soon pass.

    I was prescribed physical therapy and it helped incredibly. If its not offered I would suggest you ask for it.

    You will be given a blow-into-thing-ammygig to excersize your lungs. Use it!

    I wont offer much advice, Donna and Jan have got that covered, all I would say is Good Luck

    and above all DONT PANIC! You'll be fine. Promise.

  • duster10
    duster10 Member Posts: 29
    edited November 2016 #12
    Open Surgery?

    My only experience is with open surgery, and while the first 4 days were rather brutal, it got noticably better every day after that.  Rhominator said he got hit with the hiccups.....I cant imagine anything more painful.  Hiccups/coughing/sneezing, were all agonizing due to the open surgery.  Outside of that, it was simply a scenario of being able to not move much at all for a week.  After one day, all I took was extra strenght tylenol.  I did take a little hydrocodine to help me sleep, but you will find what works for you.  I DID NOT take Jan's advice about some type of stomach wrap.  That would have been a VERY good idea, I think it will really help out on the soreness.  

    I am 2 months post-op....I played in a golf tournament (54 holes in 3 days), 2 weeks ago.  The week after surgery I thought I might never golf again, and yet 42 days later, I am swinging a golf club as hard as I can......thats seems crazy.  You will do fine, I am sure of it!

  • Bay Area Guy
    Bay Area Guy Member Posts: 546 Member
    edited November 2016 #13
    Laparoscopic or Open

    Do you know if the procedure will be one or the other.  Lap surgery should entail a little less pain and a shorter recovery time than the open.  If you do have an open and the surgeon goes in through the abdomen, have a pillow with you when you're sitting in a chair or lying in bed.  If you cough, sneeze or just try to get up, hold the pillow nice and tight against your abdomen for support.  While my kidney surgery was a robotic assisted laparoscopic partial, I have had experience with open abdominal surgery.  The pillow was my saving grace while the major muscles of my abdomen were trying to knit back together.

  • sblairc
    sblairc Member Posts: 585
    edited November 2016 #14
    Netflix, headphones and earplugs

    In case you have sleep issues (hospitals suck) and earplugs to help you get a good night sleep if you are particularly restless. My husband was the acdtual patient, but I was grateful for the earplugs, lol!!! 

    It can truly be the little things that make the BIG differences. Like soft ice packs for back pain (or any muscle pain/gas shoulder pain)

  • sblairc
    sblairc Member Posts: 585
    edited November 2016 #15
    Kids? Be careful

    Just be careful around your kids. Don't lift them if they are that age. Make sure if you have young kids, they know to not run or jump on you. Make sure you really watch that. 

  • Footstomper
    Footstomper Member Posts: 1,237
    sblairc said:

    Kids? Be careful

    Just be careful around your kids. Don't lift them if they are that age. Make sure if you have young kids, they know to not run or jump on you. Make sure you really watch that. 

    Kids?

    Buy a sturdy tennis raquet?

  • CCope81
    CCope81 Member Posts: 21

    Laparoscopic or Open

    Do you know if the procedure will be one or the other.  Lap surgery should entail a little less pain and a shorter recovery time than the open.  If you do have an open and the surgeon goes in through the abdomen, have a pillow with you when you're sitting in a chair or lying in bed.  If you cough, sneeze or just try to get up, hold the pillow nice and tight against your abdomen for support.  While my kidney surgery was a robotic assisted laparoscopic partial, I have had experience with open abdominal surgery.  The pillow was my saving grace while the major muscles of my abdomen were trying to knit back together.

    Robotic?

    I got a call today to pre-register which is stupid because they will still register me when I get there. But he said a robotic nephrectomy was what I was having. 

  • CCope81
    CCope81 Member Posts: 21

    Hi There

    I was hit with the hiccups and nausea after my full neph. [brutal]  I don't know how you can prepare for that, 'cept to have an advocate in your camp to get you the meds you need right away.  My wife made sure I got everything I needed from the doctors and nurses in a timely fashion.  And my church's support network was there for my wife while I was in the OR for five hours.  So, I guess it comes down to having people around that you can count on to help you out.

    Hiccups!?!?! That sounds terrifying.

    I hate hiccups on a normal day!

  • CCope81
    CCope81 Member Posts: 21
    edited November 2016 #19
    donna_lee said:

    Besides the recliner....where to start?

    Make sure you have all affairs and papers in order; and I don't mean you should have another affair at this time or put paper on the floor for the dog.

    Bowel prep the night prior is a necessary evil.  Depending upon what they have you use, some can be more irritating to the exterior posterior than you would wish for.  Have Desitin or diaper rash ointment close at hand for after the baby wipes.

    Get your house ready to return to: light juices, yougurt, bananas, soups.  Carbonated beverages aren't recommended since the adage is bubbles in/bubbles out.  And extra gas in the digestive tract is something you don't need at this time.  Have friends, family, etc. lined up to bring in a meal, do the laundry or dishes, bring in the mail, run errands, etc. Have extra throws, blankets or pillows near where you will be roosting during the first few days and within easy reach for you.  Cell phone, new batteries in the remote, a couple of new magazines won't hurt, either.

    Sleep is your best friend, and it will help you in recovery.  If you have a shower with a hand wand and a stool or seat, so much the better.  It will feel good just to sit under the warm rain and get the hospital betadine, smells, sweat, Foley cath bag and drain tube messes off your body. 

    Clothing comfort is what you want. Long T's, Nighties, or really loose PJ's. Then loose sweats.  Unds, if you can wear them will help you feel like you're getting better.

    The pain meds you will be given have codeine, which is constipating.  Continue to eat and drink plenty of fluid.  Metamucil or a similar product can help during this stage.  Nausea and vomiting is not normal.  Call the doc if this develops.

    Get outside as soon as you can.  Smell the fall air, watch the birds, or watch people.  Have someone take you to a coffee shop and enjoy being in public so you don't get cabin fever.

    Be alive, be hopeful, Survive!!!  That way we can all be happy.

    Love and hugs and all best wishes,

    donna_lee

    It's been 10 years, but who's counting?

    Thank you!

    So many things I didn't think of! I was wondering if I should get a band like I did after having csections. I remember the support being helpful. I didn't even think to stock up before surgery. 

  • CCope81
    CCope81 Member Posts: 21
    edited November 2016 #20
    52 incapacitated adult clients, 5 kids, 2 German Shepherds

    a husband and a partridge in a pear Tree. I think I am less concerned about the actual surgery then I am about having to manage my life while trying to recover. I'm hoping to have my 4 new clients out of the hospital and settled into adult family homes or nursing homes before I go in. Difficult but not impossible. My kids range from 17 to 2 and 4 of the 5 are total a$$holes. I'm worried about the two youngest who are boys and want to crawl on me like I'm a jungle gym. My husbands taking 12 days off but he's a train conductor and will be gone again for 2-3 days at  a time by day 13. So I need to be better by then. I wonder if I can put this off a bit longer. 

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    No delay

    Herbert is big enough already. You are not going to be better in 12 days so line up some more help. The longer you allow yourself to recover, the better you will be in the long run. Do NOT try and go back to work for a month or 6 weeks and part time at first. and get your husband to take some more time off to help with the kids so that you can rest and recover.

     

     

    Icemantoo