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Husbands upcoming full nephrectomy

Lilhop's picture
Lilhop
Posts: 3
Joined: Oct 2014

Hi!  I'm new, scared, nervous and have lots of questions!  My husband (only 43 yrs old) was recently diagnosed with RCC after finding a large mass (13x 12x 12cm) on his right kidney.  Surgery is scheduled for this Wednesday.  The surgeon is planning on starting laparoscopically knowing there is a possibility of switching to open.   I just don't know what to expect!  What would be your best advice on how I can help him after the surgery?  Things to keep him comfortable?  Foods that may be more tolerable to eat?  Any advice would be so appreciated!

We have 2 young children with no family in town and his surgery is being done an hour and a half from our home.  Thankful we have close friends to care for our kiddos.....  But I'm wondering how much time he'll want me at the hospital and if it'd be a good idea for the kids to come see him.   After your surgeries did you mostly sleep and want to be left alone?  I want to do what's best for him!

i appreciate your input! 

Dave418's picture
Dave418
Posts: 95
Joined: Aug 2014

Hi, welcome to the club, wish you wouldn't be here...

I am 37 and had mine in beginning of September, not a walk in the park, but we have all gone trough it. For the first few days, expect some pain, and lots of sleep, those painkillers are powerful... I didn't eat solid food until the 3rd day after the surgery. I did ask my wife to bring my kids(4 and 7) in the hospital when I began feeling a bit better and everything was unplugged from me 3 days post-op. 

When I got home, my wife resume work and left me home alone, wich was ok for me. Some people would want someone besides them, everyone is different. For the first 2 weeks home, I just listen to tv, took some walks outside(longer and longer everyday) and of course, I read all the posts on this forum. Besides my friends and family, reading what people here had gone trough and how many survived has really helped me. 

I am now 2 months post sirgery and my body is almost 100% healed, but my mind is still hurt. It is a new life and we have to learn to live with the C word.

You are in for a long run, don't be afraid to ask question here and to your urologist. 

Best of luck to you and your husband.

Dave 

icemantoo's picture
icemantoo
Posts: 3283
Joined: Jan 2010

Lilhop,

There is no way to sugar coat the surgery. It is however over the years routine surgery . Those first few weeks are going to be tough and he will not be able to physically interact with the little  ones. Mine was 12 years ago (bip) before I Pads.

 

Icemantoo

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Hi and welcome. My husband had a full nepthrectomy exactly one year ago this week. I think each person is very different in what they want and need after surgery, but you will know your husband best. Mine wanted to be "left alone" by everyone except me, our daughter, and his mom. I taped a sign to his door saying "No visitors please" to keep people out.

My situation was a bit different since my husband got admitted to the hospital 5 days before his surgery and was very ill,  I had already been sleeping at the hospital, so I just continued to do so after his surgery. He was very happy to have me to help out after his surgery (e.g., getting him Gatorade when he wanted it, finding extra blankets, refilling his water pitcher, helping him reach his pain medication hand pump etc). That being said, he was also very very concerned about our little one, so he may want you stay with the kids for his own peace of mind. Your kids will do ok, it's amazing how they can suprise you in times like these!

Everyone's choices in recovery will be very different. We let our daugher come see him after he got his catheter out and he was physically able to be "his normal self" somewhat. That was his request. I think it was the second day after his surgery. It takes a while for the anestesia to wear off. My husband was very out of it for about 12 hours after the surgery which I didn't expect so be aware of that aspect when choosing to have your kids see him. Some kids might not like that. He will also be gradually introduced to solid food as he recovers, starting with only clear liquids. Once he is home, he will need to learn to hydrate properly with water, so if people ask if they can bring you anything and you don't know what to say tell them bottled water. 

 

Feel free to message me here if you have any more questions, you will get a tonne of great support here. Mostly from patients, but there are many great spouse caretakers here too. 

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014
I'm 36 and I had an open radical nephrectomy two months ago and a new member of this forum! 
well, It all depends on him, in my case, the surgery started at 3:30 pm and ended after three hours, I felt terrible pain in the recovery room but it was tolerable with the help of painkillers, after one hour I could communicate but i don't remember  all details now, i gained my 100% awareness after 2 hours. I could talk to my friends and smile at their jokes the first night, during the night i could turn to my left side by the help of my husband, the first try didn't work but it was awful to lie down on my back for long time so I tried later and could do it with my husband's help, I could do it on my own in the morning, the next day I had pain but wasn't a big deal anymore, I walked with the nurse's help for few steps around noon which caused a terrible dizziness so I had to take a rest and a nip, then I walked in the afternoon almost alone and continue doing it almost 4-5 times a day, I stayed in the hospital for 2 days, and on day two I could walk almost easily by support of the wall, I started eating normal foods from the day two, and didn't need to sleep more than normal but spent my time on sitting and reading or watching movies. I couldn't lie down for almost 5 days because the moment I went to sleep I had cough so I had to sit down and go to sleep. 
I stayed at home the next 3 weeks and day by day I gained more strength, so I went on a journey (with my surgeon's permission) during the fourth week and spent a lovely week abroad like there was no surgery at all, and after coming back normal life began. 
I don't have children but in my case I didn't tell my mum I had the surgery unless I came back home because it would be very hurting for her to come and see me in the hospital but my close friends were there for me which was  great, I really needed their support.
I think a patient's body will recover soon especially if the patient is young but what is more difficult is his soul, thoughts,mind,.... I'm doing my best but after two months I'm not 100% successful yet, so take care of him in both physical and emotional 
wish him health
Tbuck1971's picture
Tbuck1971
Posts: 50
Joined: Jun 2014

Lilhop,

 

I had my full nephrectomy on December 3, 2013.  The first day was a blur to me, I just wanted to sleep and wasn't too active.  Day two I was up and moving around pretty well.  I didn't mind visitors, but I can tell you if they lingered for longer than 15-20 minutes I would get too tired to have any sort of conversation that was beneficial to either.  I would actually feel worse the longer folks stayed as I would get sleepy and then I would feel bad like I was letting the visitor down by not being up and aware.  I needed a bunch of sleep and felt as though I was being rude.  They didn't mind so much, but I did.  My suggestion is that if you allow visitors while in the hospital to make sure folks understand he should not be bothered for too long, be rude if you need to be, be blunt and advise people once he is out 5-10 days he would be better to come visit.

Foods - my first meal was soup.  I loved eating ice and sprite, sierra mist.  He needs to stay hydrated and water will get old!  I also ate lots of jello.  I know this sounds terrible, but about one week out from my surgery I was Jonesing a McDonalds' hamburger.  Why I have no idea, it's yucky!  I had a very limited appetite and my belly felt full all the time.  When I did eat it was very little.  I asked my wife to pick up a McDonald's happy meal and I killed the little hamburger and super small fries.  I enjoyed the toy too!

Comfort - My biggest problem was getting upright.  Please be preparred to help him raise himself up from a lying position.  At first you may need to do all the lifting, do not rely on his ability to pull himself up at first.  Grab him and pull him!  My wife was not the best at this and it tended to frustrate me a bit.  That pain lasts for 7-10 days minimum.  I found I rested well at night, don't hesitate in taking the appropriate amount of pain meds, but I found after a few days I was ok with minimal use and tylenol mostly.  Walk, walk , walk, as much as possible then rest, rest, rest as much as possible.  A recliner would be nice to have to make his movement easier from flat to upright.

Kids - my kids were great, but they were 10 and 12.  Younger may be too spontaneous and should be watched closely. 

 

Other - He'll be fine and moving around in no time.  My first big treat was going out to the Target and driving the scooter around.  It gave my wife a chance to get out and I was about to go stir crazy also.  My surgery was in December so I just wore a lot of flannel and relaxed with good movies, etc.

 

Best of luck.  Sorry to be so wordy, just wanted to help with advice!

 

Tom 

tyjsbtn
Posts: 50
Joined: Sep 2014

I had my full nephrectomy in August and I don't even remember the 1st 2 days. Once they took me out of ICU and put me in a regular room it was a bit better cause they had taken me off the heavy meds and I could move around some.  I was not put on regular food until 5 days after the surgery.  For me I prefer to be left alone when I am not feeling well and was always ready for visitors to leave (but that is just me).  You know your husband the best and I am sure that you will do what works for you.   As for the kids, I have young grand kids (3 & 6) and I just told them to be easy with me because I had a boo boo.  Of course my grandson (3) wanted to see it immediately and was impressed by the scarLaughing.  He has been really careful to not jump on me and still asks me every time I see him if I still have the boo boo.

myoung790
Posts: 75
Joined: Sep 2014

I am 2.5 weeks post a radical nephrectomy for RCC.  My tumor was much smaller.  I am 41.  I went in with the hopes of a partial, but unfortunately lost the kidney due to the placement of the tumor.  They were able to covert to the nephrectomy once inside and mine was completed robotically.  I went back to work today light duty and feel pretty good overall.  A bit tired, but good.  My pain was minimal after a couple of days.  My girls, both 6.5, did come to visit me in the hospital.  The first week was the hardest, but I enjoyed company and interaction.  I will say that getting up on your feet and moving is quite helpful.  Food was not of any interest to me until a week or so post op.  

Everyone is different.  I just listened to my body.  When I was tired, I slept, when I could do more, I pushed myself a little bit.  

Good luck and I am sorry you had to join our little club here.

donna_lee's picture
donna_lee
Posts: 967
Joined: Feb 2009

I had about the same size tumor, right side, kidney removed 8 years ago.  Yes, have the kids visit.  Of course, it's a bit startling for them to see someone they love in bed with tubes and lines.  But it also helps them understand why daddy can't have them jump on his lap or rough-house.  My grandsons were in grade school and they were great.  Once I had to start walking, that's what they wanted to do, was walk me thru the halls. The pre-school girls were big-eyed and just knew grandma was sick.  I really appreciated seeing my husband sitting at my bedside as I came out of the 11.5 hour surgery (lots of mets), but he also took time to go places with our daughter and her boys when he knew I would be occupied.

Anesthesia slows everything, including digestion. And pain meds can be constipating, as can just sitting around.  Easy to eat and digest foods-noodle soup, apple sauce (apple saws as my granddaughter wrote), burger meats, plenty of fluids and pretty much anything that sounds good to the recovering patient.  Even pizza.

A reclining chair was great and I slept in it for the first few nights at home.  That way I could get up by myself and make it to the nearby bathroom without help.

By 6 weeks, he'll be driving himself around town and walking or swimming.  Have hope.  Everything is going to go well.

Donna

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Lilhop, I'm 47, and I had an open partial in July of this year.  My surgery was at 8 a.m. on Thursday and I was sent home on Saturday.  The doctors and nurses encouraged me to walk around the hospital the afternoon/evening of my surgery.  Thursday, Friday, Saturday, and Sunday were rough.  Monday (4 days after the surgery), I felt relatively strong, and started walking 6 miles each day.  I live exactly 1.5 miles from the beach, so I took the opporunity to watch the sun rise in the morning and set in the evening to experience nature's beauty.  The walking hastened my recovery.  I did not have any onerous dietary restrictions when I left the hospital, and the doctors gave us some orders to avoid spicy foods and other particular foods.

A couple of suggestions for your husband, which will largely depend on him and how it goes.

1. A recliner is a good idea.  I slept in a recliner for about 1-2 weeks after surgery.  I tend to sleep on my stomach, and that was difficult.  The recliner was good for me.

2.  Have plenty of water ready for him to drink.

 

3. Sneezing, coughing, and laughing will be painful for a week or so.  My hospital gave me a sneeze/cough hug pillow, and that was a nice thing to cling onto whenever I had to sneeze or cough.  I love the laugh, and I remember 2 or 3 days after my surgery having to hang up on a good friend because we were laughing so hard--that hurt so good.

4.  My doctors recommend Tylenol 2 or 3 days after getting home. Tylenol did nothing for me, and they let me switch to Aleve.

5.  I was scared and worried beyond belief prior to the surgery.  Please tell your husband not to read the internet prior to surgery.  That gave me a lot of needless worry.  Looking back at the whole thing, the few days after surgery were a little rough, but I consider the experience relatively mild, and got me to a much, much better place.

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

To prevent from getting "backed up" after surgery (pain meds will do that!) make sure he is eating a good diet and is having regular bowel movements before his surgery. I wasn't on top of this for my husband in the hospital and he ended up having to take some awful laxative stuff the night before his surgery. Also, my husband's stayed 5 nights after his surgery. Not everyone gets discharged fast, totally normal. It took him a while to start having bowel sounds (gas). Not to be gross, but don't be suprised if you are praying for farts. Anestesia slows down your body.  The longer the surgery, the more anesthesia which may mean slower awakening of the bowels and longer hospital stay. NOT a huge deal!!! 

 

Also, your husband is having his surgery exactly a year to the day of my husband. I will be thinking of you both. 

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

I forgot to mention the constipation, and the anticipation of a regular bowel movement.  It eventually came, but like the Tom Petty song says, the waiting was the hardest part.

JoanneNH
Posts: 115
Joined: Sep 2013

Another full nephrectomy patient checking in.   I couldn't bend over for several weeks and slept sitting up on the couch propped up by pillows.   The hospital may or may not give him a pillow.   He should hug this against his side if he has to sneeze or cough.  I held it against my side when I walked for a couple of weeks.   Also make sure he has something between him and a seatbelt; I used a towel or small pillow.   Constipation was a problem for me also.   When I got home, I started taking small amounts of Metamucil several times a day.   I took the max amount of pain medication at the soonest interval to keep on top of the pain and not let it get a hold.   The worst pain for me was after they took my epidural out and the anesthetic wore off.  Just some suggestions.   Stress was very high prior to surgery and that's normal.

Lilhop's picture
Lilhop
Posts: 3
Joined: Oct 2014

I'm so thankful that a friend referred me to this forum, it's nice knowing that people care enough to respond and keep these boards going.  I appreciate all of you taking the time to help me :)

JoanneNH
Posts: 115
Joined: Sep 2013

Please come back and let us know how things are going after the surgery, and take care of yourself, too.

Laura76's picture
Laura76
Posts: 49
Joined: Aug 2014

Sorry to hear your here

 

Give him lots of support after, it's a hard thing to go through, and facing the fact "i had cancer"!

Scary. it's an emotional roller coaster!

 

 

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Obviously you are in the middle of something we all know too well, but I just wanted to let you know I was thinking of you and update us all when you get a chance to let us know how surgery went. 

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

First let me say, Welcome and glad you are asking ahead of time in behalf of your hubby what to expect. Yes, everyone may be different. Sorry you both are going through this, but know it is doable and you'll get through this for sure!

I have had 2 robatic/laproscopic abdominal surgeries and neither hurt that much. I remember pressing on my 5-6 incisions and felt NO PAIN!! Of course I was already loaded up with pain meds during surgery, but I needed little to no narcotic pain meds after a few days. Again, each is different.

They will get him up a few hours after he gets into his regular hospital room to stand. He'll have those compression wraps put on his legs to prevent clots forming. AND he'll have a catheter which most men hate. They will insert the cath when he's asleep in surgery room, but will take it out in his room. Once you are able to walk and get to the bathroom, they probably will take it out. I just had a male friend go through the same surgery I did and he didn't get his cath out until he was being discharged even though he was walking the halls. AND since he was used to biking 25 miles several times a week, he could not sit still at home and took walks 2x a day.

Expect him to be tired, maybe a bit groggy on those pain meds. ANd because your body is healing. Eating properly and rest is good.

I highly recommend a lumbar, velcro wrap used for those with bad backs..but I used it to go home in and when I was home it really supported the sore abdominal muscles getting up and down. I even wore it to bed at first. Both my surgeons said it was okay to use.

Now since I had a radical nephrectomy, I had an unusual reaction to the pain meds. I was yaking away in the RECOVERY room, hyper and hyper verbal for DAYS!@ I could not sleep hardly as I was so hyper. But that tends not to be the case for most. I think it was because I now only have 1 kidney.

So look into getting that lumbar wrap, its very adjustable. I even put dry ice pack inside where my largest incision was (where they removed the kidney) and it helped reduce the pain and swelling, more than the pain meds. I used the dry ice alot as it was flat and wide.

Some folks get nauseated and may even vomit on pain meds. Or may be a bit off balance on them.

Getting up and moving around is helpful and good for healing. Yes, I wish I had a recliner, but did okay with  getting up from my bed. I used a bed handle  that slipped under the mattress to hold onto when getting up from bed. He may need something to hold onto in getting up.

Also using a pillow over the abdoment whenever he is getting up, getting out of the car, or out of bed even in the hospital is very helpful.

I hope only the best experience for him and glad he has you!

I love the picture of the two of you.. so loving and cute!!

Gentle Hugs, Jan

Lilhop's picture
Lilhop
Posts: 3
Joined: Oct 2014

For this group, your support and comfort.  Husbands surgery went well, they were able to do laparoscopic although due to the size if the tumor they had to make an 8inch incision to get it out. They said between the tumor and the kidney it was the size of a baby!!!  He came home after 2 days.  He's been getting a bit more energetic every day.  His appetite is still pretty low but I'm making sure he's getting some nutrition in him.  I'm so happy this part is over  and that he's home healing.  Now just waiting on the pathology report  and for the medical board to review his case.    I appreciate you all!!!!!!!

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Great news for you and your husband!!! Before you know it, he will be back to normal and this will be behind you guys.

Dave418's picture
Dave418
Posts: 95
Joined: Aug 2014

Glad everything went well for the surgery. Hope you get a good path report. 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hi...so glad that your hubby's surgery went well. My tumor was a biggie as well. It is amazing what they can do with laprascopy, isn't it? After the surgery, you feel the big relief that it is all behind you. Your hubby will get stronger each day. After about 6 days I was doing laundry and cooking meals....very gingerly, but so happy to be able to return to a normal life. Laying down at night was the biggest challenge for me. But it was okay. Some people used a recliner which is a great idea. Use ice on your husband's surgery area ...great idea from Jan! I didn't find the tylenol 3 did much, so I didn't take many pain meds at all. Everybody's recovery is different, though.

Good luck with the path report. Keep us posted!

Hugs

Jojo

 

 

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Your husband had a baby, mine had a football!!! So glad to here it went well. 

DonMiller's picture
DonMiller
Posts: 109
Joined: Feb 2013

Don't get too worried about the pathlogy report and if possible avoid the internet because almost all of it is out of date.  I had a big tumor also  11.2 CM Stage 3 Grade 3.  The tumor invaded the renal sinus and muscular branches of the renel vein. I started googling stuff and almost went crazy. Well I was back at work in less than a month and that was almost three years ago.  I still get tired by the early evening but otherwise my biggest issue is dealing with the week before my scheduled scans. I do think it is important to see an oncolgoist as soon as possible.  There may be a clinical trial you are interested in but most of them have to start between 60 and 90 days of surgery. 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

don't let your husband get to active too soon. This is one of those times that he deserves alot of slack for not doing much. For the rest of his life it won't have mattered that he took a couple extra weeks off and relaxed. Make sure he heals well before doing too much. In retrospect, he will never regret it.

jason.2835
Posts: 337
Joined: Nov 2014

Hi.  I'm 35, I just had a radical left nephrectomy on Oct 21 2014 (originally planned to be partial).  Found a 3.9cm mass on the kidney about a month and half prior so the good news was that it was small and confined to the kidney.  

Most people have covered everything here; take recovery slowly and follow the DOC's orders... I actually have my follow up this coming Friday when we will go over the pathology of the tumor... It's a long road and you have to wrap your head around the fact that cancer will become a part of your lives forever, even if it never comes back.  But stay positive and take it one step at a time. 

myoung790
Posts: 75
Joined: Sep 2014

Glad that all went well and recovery is going well too.

Ed J
Posts: 34
Joined: Oct 2014

I found that taking pro-biotics after surgury helped with the BM's.  It's been a year now and so far so good, except for a bulge on my left incision side.  I wear a brace and it helps a lot.

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Glad to know your hubby's surgery is over and he's home under YOUR special care!!

 

Yes, don't have him rush his recovery. Tell him he doesn't want to have any hernias or other complications that could result in other surgeries ok?

And YOU need to take care of you as well!! Again, he's one lucky hubby to have you at his side!

Keep us informed and let him know how much we care. We'll walk along side him on his journey!

Better days.. life is grand again!!

Warmly, Jan

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