Husbands upcoming full nephrectomy

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 

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. 

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 said:

I had my full nephrectomy in

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 scar.  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.

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.

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.

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.

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. 

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

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