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Organisation Pre and Post Operation Partial Nephrectomy

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

Hi, firstly thank you to all the people old and new who post on the board.   I hope to be a contributing and useful member. 

 

I am schedueld for a partial nephrectomy laproscopically on 9th November in Auckland, New Zealand.   I am 50, female, good health and weight, husband, 3 teen kids and a dog.  Is an incidentally found suspected RCC of 22mm in right lower pole of kidney and in the kidney not on the outside, so a T1A grading.  I have only been disagnosed yesterday after scans over the last 8 days. 

 

I dont' work outside the home, but do a fair bit of housework, cooking and gardening and I like to be organised, it is my safety blankie.  I will not be worrying about housework and gardens.   Anxious about the operation as have a had a few ops in my life as well as complicated child birth so I was wondering what people felt helped most in avoiding siutation that had you known about them you would have had a solution or gotten prepared.    

I have a couple of very specific question with regard to pain/mobility/recover from Laproscopic Partial Nephrectomy.

 

Stairs:  I have 3 flights of stairs (10 each, so total 30) up to the bedroom - would you be locating a bed downstairs for the first week or so?  I am schedueld to be in a private hospital for 3 - 4 nights post op. I have one of these electrically adjustable beds (king single) like they have in hospital and I could set it up in a lounge downstairs near a bathroom. 

Shower Chair: Would a shower chair have been useful?  Or was showering easy enough once you were out of hospital? 

Compresion Support Garment: Did any of you find a compression garmet or wrap was useful to help with nerve pain or swelling from the incisions? 

Driving: How long before you felt like you could drive for 2 or 3 hours?  I have a home in the country - along winding roads, I am wondering how long before I would feel comfortable driving myself there?   I am assuming not in the first two weeks, it is also on an Island and the only way off for medical care is via helicopter! 

 

The things I have learnt from other surgeries: 

Comfy clothes and shoes for the hospital, reading glasses, phone charger with extra long cord, note book and pen. 

Dry hair shampoo

Lip balm, throat lozengers/soothers. Nice smelling moisturier and baby wipes. 

Prunes and porridge or your favourite foods that are kind to the bowel as well as stool softener pre surgery if approved by Dr.  Those generals aneasthetics as well as opiates are not kind to the bowel and I don't have any problems day to day. I don't need extra pain from being constipated and laxatives and I don't like each other very much. I am suprised how often people are not advised to prepare to avoid consitpation when getting scheduled surgery. 

Pre fill prescriptions if you can and find a good container to fit them all as well as a notepad to note what you took when (I lose track...) 

Remove nail polish pre surgery and store jewellry somewhere safe at home. 

A nice bag, good shoulder strap and handles for hanging  (clean reuable shopping bag whatever) to carry around the drain if you have one inserted.  

A cloth nappy (or towel the same size as a babies old fashione nappy/diaper) folded up in a zip lock bag makes a good heat/cool pad.  They are light, conform to you shape well and you can heat them by microwave or by just pouring hot water in them, or putting in fridge or freezer.  You can make several shapes and sizes.  They don't smell like wheat bags. 

A plastic garbage bag on the car seat can help with sliding in and out/around when getting in and out if you have difficulty when first driving again.

 

Thanks.  

 

 

 

 

MFoster
Posts: 17
Joined: Sep 2017

Hey! Wish you the best of luck with your surgery. I had a radical nephrectomy in July. I spent two nights in the hospital. The stairs may be difficult just due to the number of them. I could walk pretty good but getting up and down was a challenge. I could shower immediately. As soon as I got home, I took a nice, long shower. My incisions did not require any wraps. I had my surgery via the Da Vinci robot though so it may be different thank your procedure. I didn't drive for four weeks mainly because I was just exhausted. Being tired was the biggest concern. 

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

Thanks MFoster.  Good to know re the showering.  Nothing better than a good wash in your own bathroom  after hospital/surgery. Small pleaures eh?

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

Kiwi68,

It sounds like your application is in order and at 22mm your prognosis is excellent.

 

 

 

Icemantoo

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

Icemantoo, thank you.  Yes I definately do not remember signing up to this club.  I am very fortunate, I am getting to attend the country club version of RCC,  I live 3 doors from my doctor, 8 doors from the place with the CT scan and 2km from the specialist and the choice of 2 hopsitals that could do the surgery and I have full and comprehensive private medical so the whole shebang will cost me less than $500.  Free if I went public as in NZ there would be no charge, but I am in a hurry and well, who doesn't want value out of their health insurance?   I would have the same surgeon, just not at a private facility.   I am flying in my mum to keep me company for 2 weeks post op, and my kids are at an age where mum being under the weather for a while is not a biggie.  I even have the procedure post major school exams for 2 of them, so they won't be distracted or upset by a sick parent and should be able to make a decent effort at Christmas celebrations/hosting.  We have our long summer break here in December and January and hospital referals and surgeries are difficult to come by if you get sick in December.  I feel terribly fortunate in a lot of ways, though I know in a while I will feel just terrible and as the Dalai Lama says 'that too shall pass'.   It seems very surreal to be grateful for a kidney mass.   But I know right now I am a little bit lucky.  Hopefully my luck holds for a few more weeks. Wink

medic1971's picture
medic1971
Posts: 200
Joined: Sep 2015

Sorry you're here, but I am glad it's a small one in there.  Here are my thouhgts to your questions:

Stairs:  I have 3 flights of stairs (10 each, so total 30) up to the bedroom - would you be locating a bed downstairs for the first week or so?  I am schedueld to be in a private hospital for 3 - 4 nights post op. I have one of these electrically adjustable beds (king single) like they have in hospital and I could set it up in a lounge downstairs near a bathroom-  Yes that is a lot of stairs to be dealing with.  Don't risk falling or hurting yourself.  You will be up and walking every day, in fact you will be up and walking about 6 to 8 hours after surgery, but don't push it with the stairs.  I may be a week or two before you feel like going up and down stairs.  just take it easy and do not push yourself. 

Shower Chair: Would a shower chair have been useful?  Or was showering easy enough once you were out of hospital? You won't need it.  In fact I took a shower my second day post-op and needed no chair.  

Compresion Support Garment: Did any of you find a compression garmet or wrap was useful to help with nerve pain or swelling from the incisions?   No the only thing you will need is something to brace your abdomen when you get in and out of bed.  I used a pillow or a rolled up towel.

Driving: How long before you felt like you could drive for 2 or 3 hours?  I have a home in the country - along winding roads, I am wondering how long before I would feel comfortable driving myself there?   I am assuming not in the first two weeks, it is also on an Island and the only way off for medical care is via helicopter! I was told no driving for 4 weeks.  I could ride in the car but no driving for me.  I spent two nights in the hospital, 5 nights in a hotel room , and then flew home by myself exactly one week after surgery.  

 

Good luck and keep us posted.  

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

but very small and easily manageable

I think you must mean your surgery November 9th

Stairs. Agree with MedIc.  That is a lot of stairs so I would use that fancy bed you have.  First couple of weeks once you come down the stairs you sure won’t want to go back up in a hurry and you need as much rest as you can

 

Shower Chair.   You will manage without after 5 to 6 days but plan your shower Do your hair first in case you start to get tired 

 

 

Compression Agree with Medic. Although it did help I found it more stressful to get it on and off so in the end I just used  a very large towel as a support and as a anchor to get in and out of bed

Driving. Four weeks but  that is largely due to the braking issue.   I will leave the rest to you but again be very careful of the tiredness issue  It can suddenly overwhelm you

 

I hope to God that you are not carrying around your own  drain or catheter and that they are attached to the body or on a stand

Keep us posted

 

Annie

 

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

Thanks Annie, the hint on the hair first is a good one.   I know that overwhelming feeling when you think you are feeling so much better and tackle something and it turns out you weren't quite so recovered as you though.   RE the drain, my friend had to have a breast removal and she had a drain into a big container and it was in for about 3 days and she had to carry it around so the bag was a good idea.   I guess that isnt' something that happens with this operation and it's drain.  Will get the bedroom set up downstairs to avoid the stairs and make alternate arrangements for driving until next year. 

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

That is a lot of stairs and moving a bed is a great idea, at least for the first week.  But do you have someone to move it back?  Do NOT take part in that post-op!!  I used a "compression wrap", or lumbar support, whatever you prefer to call it for a few weeks and it helped immensely.  I admit, I didn't use it initially because I wasn't aware of it until I went back to work and one of my coworkers suggested it.  (I worked in a hospital) No need for the shower chair....at least not for me.  Driving?  I had my first follow-up at 1-1/2 weeks and my doctor was okay with me driving because I was already off all meds.  Looking back, it probably would have been best to have someone drive me.  For me, I felt like I was in a fog till about the 3 week point.

Best wishes,

Donna~

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

I had a radical or total nephrectomy so I am not sure if my experience is relevant to you or not but I have given some of this advice to others going through the procedure.

Bed placement

One way to approach your bed placement is to consider whether you are doing everything you can to create a positive recovery environment. For me I would want everything working in my favour as much as possible and this would mean no stairs to bed if that can be avoided. If downstairs has bathroom, kitchen, lounge, and exit for walks then downstairs might be the best place for the bed if that is possible.

Getting in and out of bed
 
The most pain and difficulty will most likely be getting in and out of bed. As you have not yet had the operation you have the opportunity to practice getting in and out of bed before surgery.
 
Bedding and sleeping plan needs to understood, arranged, and practiced before operation.
 
You will not be able to roll onto or lie on the wound side.
 
You will not be able to get out of bed on the side where the wound is.
 
You will need to sleep on the side of the bed away from the wound and have the bed and room arranged so you 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.
 
You should practice this to get a general understanding about what needs to be done. Any pain will later force you 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.

You might also like to try using a solid chair beside the bed to get out of bed if that is useful. 

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 can also tell medical staff (e.g. nurses) after surgery that you need to be shown how to get in and out of bed. If you are lucky someone might be able to show you how to do it but do not rely on this most likely you will not be told.

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

Walking

Walking is essential to your recovery.

Start planning where and how you are going to walk 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. At first you might be nervous around cars such as car parks and crossing roads as you will not have any agility to move out of the way of a car coming too close to you. It is really good to have a walking buddy with you for the first few days.

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

Stiches and dressing removal

If you required stitches make sure you have a strategy to have the stitches removed and dressing changed. I am not sure what the procedure is within a private hosptial / insurance context.  Most public hospitals do not supply this service and require patients to attend their local medical center which has a dedicated nurse on duty or can provide a referral to a district nurse if one is available.

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 taking into consideration healing time to make sure the wound is healing and there is nothing such as dried body fat preventing final healing.

Nutrition

You can consider including a nutritional powder in your diet there are a number of different types, some of them have a higher component of protein which you might want to avoid or include, 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 but if you are in NZ I would be thinking Sustagen Hospital Formula in plain, vanilla, or chocolate with fibre if you can get it. You can drink this with dairy, soy, or almond milk or just with water if you prefer.

You might not feel like having heavy meals. If you like bread then that is a great start invest in some good quality bread for making toast to go with foods throughout the day or just with a spread.

If you like eggs then prepare these in your favourite way every day they are easy to digest and full of goodness.

Use herbs and spices to make food more appealing. For example if you like pepper you can buy a small container of peppercorns with its own grinder to spice up your food. If you like 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.

Don't stress out about what you are eating during this stage it is not a life-long diet just a short diet to get you back on track then you can adjust to what you think your optimal diet should be.

Driving

Tiredness is an issue with driving. Even if you can do a long drive you might be exhausted later so it might not be worth it.

I did my first short drive 7 days after operation (some people do it a lot earlier but I had no need at all to drive).

I drove 75 minutes 10 days after operation, almost all driving done on a freeway, with a short break in a freeway roadhouse just to look after myself.

A few days later (so 13 days after operation) I drove the 75 minutes back the other way but this time I drove off the freeway and took a longer break at a suburban shopping area about half way, again just to make sure I remained in good shape.

Best Wishes

Supersum (Melbourne AU)

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

Thank you so much for all of that.  I am taking it all on board and all of it makes excellent sense.  I will even write down the questions for the staff at hospital before I go in.  I live very close to my Dr.  3 doors, so getting the stiches removed is not a problem.   It is absolutely ridiculous how close I am to everything, I live on a side street off a medical mile.   

I am very lucky to have 3 teens and a husband to help out but even more lucky to have my Mum come to stay for 3 weeks.   All aorund our house is flat paved area and a tennis court sized flat lawn so I can do lots of walking away from any obstacles, except maybe a very large dog we own who I will make sure stays out of my way for while.   I hadn't really thought about food yet, (only 2 days confirmed for surgery) but I spent a lot of time this year cooking for a friends 20 year old with a broken jaw who is a rugby player and had to have puree'd food with high calories so I have tons of glass jars and special meal packs to make food into.   Also lots of recipes that have a bit of flavour to get over the blandness of all the food being soft.  I will make sure I make myself up some frittata and quiches this week and some single serve meals.   Thanks you for taking the time to give me examples of how to get in and out of bed.  These are the things that are so hard to learn from experience. 

Hd67xlch's picture
Hd67xlch
Posts: 149
Joined: Apr 2016

1. multiple different strains of medical grade thc oil, keeps you from needing pain pills, very effective

2. two quarts of high quality bourbon ( in hindsight I should have placed a cooler next to the couch to keep from having to get up for ice for the bourbon)

3. several different types of chips/cookies strategically placed around the house, for when the thc oil kicks in

That was about the extent of my preperations

Stairs, my wife lost me the 1st hour after coming home from the hospital, she had fixed up the downstairs bedroom so I wouldnt have to climb the stairs, she found me in bed up stairs, no problems going up or down the day of being released

Drving I was driving the day after I got out of the hospital, no issues

Showering, no issues was showering day I got home

Its really not that bad recovering, mine was a total kidney removal lapriscopicaly, my biggest obsticle was getting up out of the couch after melting into it, I found it easiest to just roll over onto the floor and  then get up from my knees on the floor.

You will be fine, good luck

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

Thanks.  I don't mind bourbon, might have to have mine with coke.  Re the THC if our new prime minister gets a hurry on then I a might be in luck.   Glad to read a recover that seems pretty straight forward. 

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Chips/cookies for when the oil kicked in ahahahahaha!

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

Wow -- I love your list of things preparations.

My house is all one level, so I can't speak to the stairs. However, it's spread out, pretty much one room deep, so I definitely got my walking in. Getting up and going into the kitchen for ice for your bourbon (or coke) or just refilling your water glass counts counts as points towards your walking. Walking helps get rid of the Evil CO2 gas, which helps get rid of the (mostly referred) pain. Walking is good. The first week I walked for 5 minutes of every hour I was awake. It really helped.

Nope on the compression garment, nope on the shower chair (unless you want to shave your legs -- your balance might not be the best to stand on one leg to do that sort of thing... but heck if you're 50 and in good shape, you can stick your leg in the sink).

As for getting in and out of bed, I got those risers for my bed (where they advertise that when you buy them you can STORE TWICE AS MUCH UNDER YOUR BED! Since the only thing stored under my bed are a dog chewie or such hauled in by the current dog-in-residence, the storage concept was not a particularly effective selling point). If your dog is short, remember to put a chair or a hassock for said canine to use getting on the bed, because you're not going to be up to bending, twisting, and picking up much right away.

Speaking of which, that's what made me want to wait the most before I drove my car. Braking wasn't a problem. It was the twisting that was. Of course you twist a wee bit to look to the left and right. Rather than only using the mirrors, I back up a car by twisting my torso, putting one hand on the seat back, and looking out the back window. You are NOT going to want to attempt to rock that technique any time soon. My surgeon totally freaked that I was twisting as much as I was (I was proudly showing him a seriously modified tai-chi move I'd developed for the my-body's-healing-now interim and I thought HE was going to faint).

I did my best to avoid the people-swallowing sofas (2 of our 3). The recliners went bye-bye some time ago because they were bad on my back on a good day. I had to remind myself to Sit Up Straight (because of the pain and fatigue, I was tempted to hunch over... OUCH). Having a large fitness ball to arch my back over helped ever so much. Rather than getting down on the floor, I put it on the tame sofa. It was SO nice to stretch gently! 

You won't need to stick to a soft diet for long. I didn't get any narcotic pain medication (and was off the Tylenol within 3 days), so having a sluggish digestive system wasn't an issue. (Un)fortunately, I had quite the opposite challenge, which certainly got me up and moving QUICKLY at times.

Oh, and for getting up out of bed, a chair, the sofa, coughing, etc -- We have a rather firm memory foam pillow that's for fastening to an office chair to support one's lower back. That and one particular family teddy bear both worked great as a hugging aid when moving about. I was able to sleep on my side (I put another memory foam pillow between my knees, plus had a pillow to keep me from rolling over and twisting my torso during my sleep).

And, I made a point of dressing up a little when I went out to my doctor's appointments and such. It just felt good. Baggy saggy sweats and tee-shirts and sweatshirts get real old real fast. 

All the best --

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

As for the drain (and I had mine in for a week after discharge to home), I just wore something with big pockets. It wasn't a problem.

The article of clothing that had the BEST pockets was a pair of drawstring rayon pants that were ice-dyed colors that could best be described as "clown barf." I was seriously considering burning them afterwards (and thought I'd at least thrown them out) but was quite horrified to find them folded nicely in the closet recently. 

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

JerzyGrrl, thank you.   It's all those silly things that I will remember.    My dog does not need a stool, she is curently taking up the entire 3 seater lounge - a Bernese Moutain dog and around 90 lbs....  She will be coming no where near me the first few days, even the wagging tail can be a deadly weapon!   After that she is a like a big cat and will probably give me great comfort.   One of the big things is I won't be able to take her with me in the car as she won't be able to get into the car (a big SUV) without me lifting her so the kids or husband will need to come with us.   Won't be for long though.   I am lucky it will be getting warmer here so I can wear some summer maxi dresses (if I don't get to the leg shaving)  or shorter sun dresses and embarassingly a few of my kids onesies.... which are loose and baggy and don't really touch you anywhere.   I too like to dress up to go out and about, and always feel better if I look better,  so I might ditch the camoflage onesies from the boys for a nice Peter Alexander pink and grey one with dogs I will nick from my daughter. 

 

Re the backing of the car, I have to back onto a car ferry - down a steep incline then back up onto the ferry to get to our other home, so I will now have an excellent excuse for any less than stellar driving.... you can't use the backing camera because of the steep incline, add in some rough water, night time and it's quite an interesting driving experience.

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

Hi Kiwi!

 

I am 7 weeks post neph... I think you covered almost everything needed after surgery and at home!  I found that I did not use the shower chair at all so it goes back to storage!  I did find a wedge pillow in bed helpful but if you have a recliner to sleep in that would be even better!  the first couple weeks getting up from a laying position was difficult.  I also wish I had known to travel with a pillow on my abdomen to hug while riding.  My trip home was an hour and it wasn't the most pleasant ride even with pain meds.  Hugging the pillow is also handy when you cough, laugh or the worst... SNEEZE!  That first sneeze had me in a panic when I felt it coming on just a few days after surgery!  I did not use a compression garment.  I couldn't stand the weight of even stretchy pants for a few days.  Even today I am still wearing elastic waist pants because wearing regular pants for long periods causes a couple of my incisions to "ache".  I did not have a drain at all.  Wishing you well and an uneventful surgery and recovery.  

Angie

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

Angie, thanks for the informaiton.  I shall have a pillow collection!  My sister is a GP and has mentioned getting Strataderm one of the silicon based scar treatment gels to aid in scar healing and to reduce scar tissue.   Have any of your Doctors talked to you about that? 

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

Kiwi,

No they haven't but I want to do something for them.  I have 5. They all look good and well healed and I look at them as battle scars!  I took a picture of them a week after the surgery and then last week and can tell a big difference in the healing and redness. Is that medication over-the-counter?  A friend recommended mederma for the scars but I haven't tried it yet.  

Angie

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

Stratamed is the sterile gel they can put on in surgery and you use it until the wound has closed. Dressings can go on top of it if they are still needed.   Strataderm is the ointment that you use after that and up to a few months.  It is an alternative to wet silicon dressings and is gaining popularity in Australia and NZ.  In NZ only the skin cancer society are promoting it. My sister who suggested it is a general practioner (GP)  in Australia.  I talked to the rep when ordering mine today, it is over the counter here. She told me you can use other medicines or treatments under the strataderm product and then their product goes on top to create that barrier that stops the wound drying out and prevent excessive scarring or to reducing already there scars.  Mine were between $90 and $70 NZ for 20g so not exactly cheap but I am assuming neither would be dressings and this seems easier you can apply it every 24 or even 48 hours after showering.   I hate sticking plasters with a passion.   

https://www.stratpharma-online.com/global.html  Is the website if you need to find out more specific information.   

The only other things I have been told about scars is taping them down initially to stop raised lines and covering them with zinc based thick suncream when going out in the sun.    My stomach hasn't seen sunlight for years so that should not be a problem! Aesthetically I am not that worried about scars, but I would like to ensure i do everything I can to avoid any scars that are painful. 

Edit:  I see there are other silcone gel products around.  After going all the way to Switzerland to contact the company and contacting the distributor for NZ I find out that the Auckland Skin Cancer Clinic (ALMOST ACROSS THE ROAD FROM MY HOUSE) stocks them!!   Lol. Oh well courier will be here tomorrow with it.   

https://www.skincancer.co.nz/Services/StratadermStratamed/

 

 

 

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