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New to forum, new diagnosis need help for post surgery

Optimisticgirl's picture
Optimisticgirl
Posts: 82
Joined: Aug 2017

Hello,

I have been reading here for just a short while, my husband was just diagnosed 2 weeks ago with  7 cm x 3 cm x3 cm kidney tumor. Dr thinks it is RCC but from position may be TCC.  Supposedly confined to kidney to the best of the Dr's ability to tell with ct scans. He is scheduled for davinci robotic nephrectomy in 2 weeks.  I hope you know how comforting reading your posts are to new people like myself. I have been attempting a crash course in renal cancer and try to keep feeling optimistic.  My main question tonight is what can I expect when he gets home from hospital and what can I do to help him be as comfortable as possible? Did you encounter anything unexpected after getting out of hospital?  I know the Dr said one, maybe two night stay then home. Scary! Thank you in advance for any thoughts and ideas!

optimisticgirl

icemantoo's picture
icemantoo
Posts: 3280
Joined: Jan 2010

O-girl,

 

The first week at home is tough. Make sure he has stool softeners when the big day arrives. Don't have him push himself too much in the begining. Each day will get a little better with maybe a bad day in between.

 

 

Icemantoo

Optimisticgirl's picture
Optimisticgirl
Posts: 82
Joined: Aug 2017

Smile

Thank you! From my reading on here, you are the wise sage of long living after nephrectomy! Thank you for the inspiration!

Bay Area Guy's picture
Bay Area Guy
Posts: 450
Joined: Jun 2016

The hospital will give him an incentive spyrometer (or should give him one) that he should regularly use.  It helps to re-expand the lungs and to prevent pneumonia.  I've used one after each of my operations (two abdominal and one kidney) and it's helpful.  My dad had some God-awful number of operations and swore by the thing.

Also, walking is very important to help wake everything back up and expel the gas that he will undoubtedly have.  As ice says, however, don't push it too much.  It's important to walk, but it's also important to rest up and regain strength as well.

In terms of the robotic (which is what I had for what turned out to be my 1.7cm lesion), it's a little easier than an open.  But he might be sore in the incisions area (yes, I did say incisions.....there are multiple to get the robot arms in various nooks and crannies).  I found on both my open abdominal and on the robotic that sitting with a pillow pressed up against the area helps a lot in case of a coughing or, heaven forbid, a sneezing fit.

Best wishes for a boring operation and a swift recovery.

Optimisticgirl's picture
Optimisticgirl
Posts: 82
Joined: Aug 2017

Thank you so much for your great advice! I have looked up the davinci robot which is used in our area..it is amazing how that thing works.   I appreciate your help, thank you!

lauras
Posts: 2
Joined: Sep 2017

Im 2 weeks post op and its no fun, stool softeners is really good advice, also just watch how much you do i would feel good, i mean by post surgery standards and do too much and then have really bad days, you need to move but be good to yourself also use that damn breathing machine i ran a low-grade fever for a week and they were very concerned about pneumonia. It gets better, slowly but by no means is this a cake walk my incision is 12 in.

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

I also had robotic.  I spent 2 nights at the hospital.  As Bay Area Guy said, make sure he uses the incentive spirometer.  As a former Respiratory Therapist, getting those lungs back to normal lung expansion is critical so he doesn't have a pneumonia complication.  Due to sedation, pain meds, laying around more than usual and post-op pain one tends to breathe more shallowly.....not good for the lungs.  Short walks are important, so multiple times a day, with lots of rest in between.  Drink plenty of water, helps flush things out, keep that body temperature down in the normal range and help with the bowel activity....eventually.  Again, between being sedated and pain meds, usually takes a bit of encouragement to get those bowels moving again.  I also used a velcro lumbar support to give the feeling of everything being held together.  Helps a lot with moving from one position to another.  Another poster (Jan) always says she used dry ice with hers.  I wasn't aware of that addition or I may have tried it as well.  Personally, I did not have a lot of post-op pain, but I was VERY weak.  I typically am not the lay around type, so that was difficult for me to accept.  In time the discomfort eases and the strength comes back.  I literally didn't have much of an appetite after surgery for probably a good 2 weeks.  I would eat a few bites and feel so full.  It was nice that I lost a few pounds but the appetite returned and so did the weight.  Oh well.  Other than the above mentioned, have things for him that he may enjoy while laying around, books, movies, computer games, whatever.

Best wishes,

Donna~

Optimisticgirl's picture
Optimisticgirl
Posts: 82
Joined: Aug 2017

Thank you! Alot of great ideas. Much appreciated!

DreamOnDeb
Posts: 112
Joined: May 2017

Hi Optimistic,

PLEASE ask your Dr./Surgeon about this before he has his nephrectomy.....

Your husband's situation sounds exactly like my husband's.  He just had a nephrectomy yesterday, and he's home today.  It went really well.

My husband's surgeon said that he had to be POSITIVE whether his tumor was Renal Cell or Transitional Cell, so he HAD to have a biopsy first.  The reason is this.....if it is TCC (Transitional Cell), then the whole kidney PLUS THE URETER that goes down to the bladder MUST be removed.  If it's RENAL CELL, then just the kidney can be removed.

SO say, for example, that they go ahead and remove just his kidney, and then the pathology report comes back and says that it was TCC (Transitional Cell Carcinoma), your surgeon is going to say, "Oh my, i just screwed up.....his ureter should have been removed too!"  Then what?  They have to go back in?  

The reason for this is that TCC acts more like a bladder cancer than a true kidney cancer, and that's why the ureter that's attached to the bladder must be removed as well.

That's why it kind of scares me that he's scheduled for surgery already without being positive as to what type of cell it is...RCC or TCC.

Please talk to him about that first.  Just trying to help.

My husband's was NOT TCC.....confirmed by the biopsy.

Optimisticgirl's picture
Optimisticgirl
Posts: 82
Joined: Aug 2017

Thank you DreamonDeb! Yes the Dr is automatically taking the ureter due to this issue. He also has a family background of TCC in grandmother and cousin both passed from it. It seems strange to be hoping for a certain type of cancer, but I am rooting for RCC! :-) 

Wishing you and your husband all the best!

Thank you again for your great advice!

 

DreamOnDeb
Posts: 112
Joined: May 2017

Very good!  I feel better now...lol.  My husband only spent one night in the hospital and he's recovering really well.  Good luck to you and your husband!!!  Hugs and healing prayers!

APny's picture
APny
Posts: 1987
Joined: Mar 2014

Agreeing with advice to drink lots of water and do as much walking and as soon as possible. I also hugged a pillow when coughing, laughing, or sneezing. I even hugged it while walking. Yes, the breathing apparatus is a must. I used it every hour. A couple of things suggested on this forum worked great for me, such as bringing a large garbage bag on the day he's going home. Put it on the car seat and this way he can easily swivel in and out without moving his torso. Bring a pillow too to cushion the seat belt. Get a large body pillow to prop up against the incision side when in bed. I was lucky to be able to sleep in my own bed thanks to the body pillow. My surgery was open but not nearly as bad as I had feared. So the robotic/lap should be even easier on him. All the best to both of you.

Optimisticgirl's picture
Optimisticgirl
Posts: 82
Joined: Aug 2017

Thank you for the great ideas, never would have thought of a garbage bag but makes perfect sense! Much appreciated! I am making a shopping list as I read. 

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

I had to take stairs real slow. Moved a gravity lounger into living room for first week as I had hard time getting into and out of bed.the chair helped a lot. Watched a lot of tv, and caught up on some reading. When not napping.The surgeon limited lifting anything over a gallon of milk for 6 weeks. I moved slow and tried not to lift anything!

Optimisticgirl's picture
Optimisticgirl
Posts: 82
Joined: Aug 2017

Gravity lounger sounds like a winner.  Thank you for the idea, he comes home from hospital today or tomorrow.

JMGateley
Posts: 2
Joined: Aug 2017

This is the start of my second week after having a partial nephrectomy on my left kidney. I am 36 years old with a history of testicular cancer. I am relatively good health but I am slightly overweight. The first week was very rough. I found that it was easiest to get confortable in a recliner (just be careful that it doesn't take too much effort to recline or to sit up after reclining). Most of my big pain came from moving and trying to initially sit down or stand up or lay down and get up. I stopped taking the pain meds I was prescribed on Sunday evening after having the surgery on Tuesday. I felt it was time to switch to something not as heavy. Be prepared to aid him to get comfort in whatever way he can get it. He may not feel like eating and drinking as I had no urge to do so but it is important to hydrate and to keep soomething down as his diet allows. Even broths and jello are better than nothing. Do not eat anything that could cause him to be nauseous other anything heavy. That can cause discomfort and if vomiting can cause severe pain. I dry heaved a few times I think from the pain meds and mixture of anasthesia and it was extremely painful. I found having a pillow or something to squeeze when coughing or riding in the car home was good to help to absorb the pain or keep it down. Gatorade and water are good to have on hand. I took time to walk each day around the house or whatever I could do. I started walking down the driveway to get the mail. Then I went a little farther to walking down my block. Just be careful not to over exert him. It can be more harmful than good. He may get to feeling better and think he is alright. He still needs to take time. Time is the biggest thing I am finding is the thing. Take time to rest, to take care of yourself and him, and take time to feel okay that it's alright to not do anything if that makes sense. I work a lot and tend to puch myself. I had to learn it was okay to not do ANYTHING. Sleep is good and it helps the body heal. If he can walk once every hour or so then thats good. I do not mean miles, but rather trips around/through the house. Do what you can and take it one day at a time. I hope that helps and I wish you and he a safe journey.

Optimisticgirl's picture
Optimisticgirl
Posts: 82
Joined: Aug 2017

I appreciate your helpfulness so soon after your own surgery.  I hope you have a quick recovery and will do my best to heed your advice!  

Thank you!

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

If we have no appetite I tink we should not eat. It is our body communicating with us. I had no food for 4 days after my surgery and still recovered perfectly. If we're well nourished then we have reserves to get us through.

If I had to go through that again I would eat a very light diet for a couple of days before surgery.

Steve.

Optimisticgirl's picture
Optimisticgirl
Posts: 82
Joined: Aug 2017

Thank you! His appetite has been waning ever since being diagnosed, I think from anxiety.  Time to stock up on soup and broth!

APny's picture
APny
Posts: 1987
Joined: Mar 2014

I also had absolutely no appetite and lived on toast, broth, and soft boiled eggs for quite a while. At least 5 days or so. I did drink a lot of water though. So don't worry if he has no appetite. It's perfectly normal. A little broth is most likely enough especially the first couple of days. 

Optimisticgirl's picture
Optimisticgirl
Posts: 82
Joined: Aug 2017

Thank you for the advice, I would have been concerned had I not heard from several people about lack of appetite. Much appreciated!

 

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

Reiterate what others have said. Drink LOTS of water, and as soon as able to do so--walk as much as possible.  I pushed myself on day 3 after surgery to walk 2 miles and on day 4 upped it to 4 miles, and it was worth it, as I recovered quickly from OPEN surgergy (not laparascopic or robotic).  I had a beach near me, so walking was a pleasure.  But we are all different, and recover at different rates.  I had a cough/sneeze/laugh pillow too. Sneezing was the worst.  Good times!

I like your screen name.  Good luck!

MFoster
Posts: 17
Joined: Sep 2017

I had this surgery 7/21/17 and it was the easiest surgery to date recovery wise. Easier to sit in recliner for a few days. Drink lots of water. My main issue was being tired. I also had an allergic reaction to Dermaflex used to glue my incisions and it was the worst! At four weeks post-op I began peeing alot and burning when I pee accompanied by pelvic pain. I've been treated for kidney and bladder infections but nothing is helping. Hope your hubby has a smooth operation and easy recovery. 

Optimisticgirl's picture
Optimisticgirl
Posts: 82
Joined: Aug 2017

I certainly hope they find the reason for your pain or hope it soon disappears on its own! His surgery was uneventful but he was not prepared for the after surgery pain. He is a tough guy but this has knocked the wind out of him. Thank you for helpful advice! 

Supersum's picture
Supersum
Posts: 103
Joined: Aug 2017

You asked "what can I expect when he gets home from hospital and what can I do to help him be as comfortable as possible?"

Here is some advice which would have been helpful for me. It might not be helpful for you I do not know your situation.

Getting in and out of bed
 
 The most pain and difficulty will most likely be getting in and out of bed. Patient is lucky he has the opportunity to practice getting in and out of bed before surgery.
 
 Bedding and sleeping plan needs to understood, arranged, and practiced before operation.
 
 Patient will not be able to roll onto or lie on the wound side.
 
 Patient will not be able to get out of bed on the side where the wound is.
 
 Patient will need to sleep on the side of the bed away from the wound and have the bed and room arranged so he can get out of bed from that side.
 
 One of the main movements in getting out of bed after surgery is to roll onto your wound-free side.
 
 Getting in and out of bed takes place at the edge of the bed and involves moving from a lying on the side position to a sitting position on the edge of the bed when getting out, or moving from a sitting position on the edge of the bed, to lying on the side, to lying on the back when getting in.
 
 Patient should practice this to get a general understanding about what needs to be done. The pain will later force him to do it as properly as possible but it is better to get ready beforehand.
 
 Here is a good example of getting out of bed from 1:41 in this video.
 
 (NOTE - the whole video does not apply to a kidney patient because a kidney patient might have very little core stomach strength and will not be able to roll onto wound side)
 
  https://youtu.be/LkFMRm_lO3Q?t=1m41s
 
 You can go to the start of the video to get an idea about how to get into bed, but remember it is not made for kidney patients in particular so core strength might be lacking and patient cannot roll onto the wound side.
 
 This is a good basis for practice but I did not follow it exactly because the pain forced me to make some adjustments such as not keeping my legs together the whole time.
 
 Here is an interesting video using an aid to pull on to get in and out of bed. I didn't see this until bad pain had passed but I think it would have been useful at the beginning as I had to do things on my own.
 
 https://www.youtube.com/watch?v=aiDy0d7sKQo
 
 Please search on google for terms such as
 
 getting out of bed after kidney surgery
 getting out of bed after surgery
 
 You also must tell medical staff (e.g. nurses) after surgery that patient needs to be shown how to get in and out of bed. If you are lucky someone might be able to show him how to do it but do not rely on this most likely he will not be told.

If patient does not have pain after surgery then that will be fantastic news and his time learning and practicing getting in and out of bed would not have been wasted because it would have contributed to him understanding he has some control over his situation and helped in developing a positive attitude that he can do things in preparing for and recovering from his surgery.

I will try to add some more later.

Optimisticgirl's picture
Optimisticgirl
Posts: 82
Joined: Aug 2017

Thank you..so many things we take for granted until something comes along and slams us with reality. :-)  Great help, much appreciated!

randyradiohill's picture
randyradiohill
Posts: 66
Joined: Aug 2017

.

Supersum's picture
Supersum
Posts: 103
Joined: Aug 2017

<deleted>

randyradiohill's picture
randyradiohill
Posts: 66
Joined: Aug 2017

i apologize...I thought I started a new thread.  

Optimisticgirl's picture
Optimisticgirl
Posts: 82
Joined: Aug 2017

Your emotions are common. Trying to stay optimistic helps, but those sneaky bad thoughts will sometimes find their way in. My husband and I are relative newbies, only 1 month since diagnosis and yesterday was surgery day.  So many ups and downs in so few days can be overwhelming. I found comfort once I found this group and read the stories and saw how peoples lives have changed in ways...but they still had life! And so much of it!  I heard cancer and my mind immediately went to all the dark thoughts...this place helped balance my thoughts, showed me there is life and hope after hearing that dreaded word. Best of luck to you, keep posting and updating, your experience will help others. Thank you!

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

I just took a minute to remember how I felt just after I found out I had a tumour on my kidney. Agitated is a good word for it. My mental focus kept shifting away from whatever I was doing and back to cancer. 

I guess you'll calm down after a while like most of us seem to. Learning a lot about our situation helps.

We are all with you.

Steve.

 

Supersum's picture
Supersum
Posts: 103
Joined: Aug 2017

Hello how is your dear husband progressing? I hope he is recovering well and you are remaining strong during this difficult and demanding time of caring for him.

Nutrition

Other people have given great advice for nutrition.

You can consider including a nutritional powder in his diet there are a number of different types some of them have a higher component of protein and these can be prepared in a shake with milk for an added boost. I do not know what is available in your area to give you a specific recommendation.

If he likes bread then that is a great start invest in some good quality bread for making toast to go with foods throughout the day.

If he likes eggs then prepare these in his favourite way every day they are easy to digest and full of goodness.

Avoid heavy red meat such as steaks in the beginning they can be difficult to digest.

If he has a craving for red meat see if sausages are acceptable they are a softer alternative

Use herbs and spices to make food more appealing. For example if he likes pepper you can buy a small container of peppercorns with its own grinder to spice up his food. If he likes chilli then a sprinkle of chilli can be good on some foods. Also herbs such as parsley, oregano and garlic can make food more appetising.

Constipation

Constipation can be overcome by eating prunes (not drinking prune juice). Best tasting prunes are unpitted prunes (prunes with the pits still in them) and organic is best because they will be unprocessed in any way.

If he doesn't like prunes then that is okay he is not meant to "like" them, they are medicine.

If he really doesn't like them and can't eat them or they are putting him off his other food then he won't be able to eat them.

Clothing

You might have already discovered he will need to wear loose fitting pants such as loose elastic waist track pants, even better if you get a pair with an adjustable tie. He can pull these up above the wound area. He can expect to wear these for at least four weeks. If a shorter time than that then that is great, if a longer time then there is nothing unusual about that. 

If it is acceptable to him he should avoid tight underpants. If he wants to wear underpants he should avoid briefs and avoid boxers which hold penis and scrotum tightly. Best option is a loose light-cotton boxer with just enough elastic tightness to remain up while being loose in all other parts. These might be available in larger Chinese-run discount bargain shops if there are any of these in your area.  If this is not acceptable then that's okay just let him wear whatever he feels best in. 

Sometimes he might like to have pants hanging low around the buttocks below the wound area this can be good in the privacy of his own home.

Stiches and dressing removal

If husband required stitches make sure you have a strategy to have the stitches removed and dressing changed. Most hospitals do not supply this service and require patients to attend their local medical center. This should have a dedicated nurse on duty.

If the drainage hole is weeping into the dressing then get that seen to as soon as possible.

Have the stitches removed as soon as possible to make sure the wound is healing and there is nothing such as dried body fat preventing final healing.

Walking

Other people have given great suggestions about walking such as starting small, just going out to the letterbox or around the house to begin with.

Slow short walking to begin with there is no rush for long walks. Husband might be nervous around cars such as car parks and crossing roads as he will not have any agility to move out of the way of a car coming too close to him.

Confidence and walking distance can increase very quickly just work out where he likes to walk such as parkland and go there walking it can have a massive impact on his mood.

Best Wishes !

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