CSN Login
Members Online: 5

You are here

Nephrectomy scheduled- feeling anxious

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

This is my first time posting on the boards, although I've been lurking since February. In July 2017 I thought I was having gallbladder issues. I had an ultrasound done and they discovered an atrophic right kidney (congenital, it's only 5.5 cm). My left kidney is a little larger (12.5 cm). At the bottom pole of the right kidney was a 3x3 lesion that only enhanced 6 Hounsfield units on CT. The radiologist placed it as a Bosniak II F. The urologist didn't think it would change but thankfully decided to follow the radiologists recommendation.

Friday Feb 9, 2018 I had my 6 month follow up CT. The lesion grew to 4.5cm x 3 and enhanced 15 Hounsfield units. I saw the urologist and a laproscopic hand-assisted nephrectomy (but will not be taking the adrenal) is scheduled for March 29, 2018. I've never been sick, never have had surgery, no other health issues. I know we won't know if it's malignant until pathology but what I've read in the medical journals and what my gut feeling is tells me it may not be benign (there are calcifications). I just turned 40, I'm a single mom, working full time as a Community Health Worker, and in graduate school for social work. Not that there is ever a "good time" to find out bad news, I'm struggling with the whole thing. Anyhow, I'm hoping to return to work in 2-3 weeks time as I don't have a strenous job and can do much from my desk. I have multipile food and drug allergies and the whole thing makes me anxious, especially the after care. Did anyone else have food/drug allergy issues? How did you manage? I don't take pills for anything usually (except a Benedryl as needed), how long did you end up using the pain medications? 

Thanks in advance for any wisdom and advice you have. 

 

Jenn

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

Hi! Welcome to the boards! Everyone here is fanstastic and really are a wonderful and supportive crew. I too am young and has a partial left nephrectomy 2 years ago. So far so good! I used pain medication while in the hospital and then at night for a couple of days. By the time a week had passed I was just using over the counter medication. I took it very easy though, so that probably helped. It’s never a “good” time but hopefully after the surgery you’ll be done with this forever!

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

I guess I'm most worried about the pain pills. I have a pretty high pain tolerance but I'm not sure how I will act on them haha, silly to worry about I guess? I'm also hopeful that after the surgery it will be done and over with! 

icemantoo's picture
icemantoo
Posts: 3351
Joined: Jan 2010

Glidergal,

 

We all were anxious in the begining. Even with a desk job 2 or 3 weeks until back to work may be rushing it. 

 

icemantoo

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

Hmm, I keep seeing a mix of thoughts on peoples time to go back to working. Being a single mom in grad school I'm trying to manage how this surgery is going to be, not just cost wise, but missed work. The second week did you feel like you were able to think a little clearer, but just feel tired? I'm wondering if since I'm home, if I'll be able to function and work on my school work (reading and discussion posts since it's an online program). I know I won't know how I'll feel personally but I like to think I'll be able to function somewhat! The thought of being trapped at home for a while without being able to drive is going to drive me crazy! Any advice on that :) I usually work 32 hours a week and intern 16 hours a week. I know it will likely be slow going to begin with. I think my biggest anxiety is not being able to get stuff done Laughing

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

I made an excellent recovery.  Week 1 was a bit of blur but straight forward and a bit better each day. I didn't need super strong pain killers after leaving hospital on day 3.  Moving around for at least one week, particularly transitioning from lying to standing was tough but doable.  I would say that I did need to rest as and when I suddnely felt pooped,  and get off my feet to alleviate the tummy swelling and the u-comfortableness from the  rummaging of the organs, they move an awful lot around.   The pain of the gas goes day by day and as far as I can tell isn't really helped by the pain relief.  Unless you are knocked out.  It just is.  Uncomfortable, helped by movement, heat packs, finding a comfortable resting position. 

 One thing I didn't do, and I love to do it, was pick up a book.   I just didn't have the energy or mental focus for a few weeks.  I was living my normal life, but not up for much mental stimulation. 

 I was slowly sweeping, cooking simple meals, walking (not driving till week 3).  One of the things with a partial neph is that your kidney is still there, but all sewed together.  You need to be careful that you are not going to fall and injure it and cause bleeding. I don't know how you get to work, but at week 2 I wouldn't of been happy on public transport on the street, buses etc.   There is a small risk that there is bleeding anyway from the wound.      My surgeon told me at 1 month follow up I was fine to resume all normal activities.   The stiches for the 5 wounds healed very easily and were not a problem for walking around.   At month 2 I didn't feel that wounds or swelling were on my mind.  At month 3 I had forgotten I had had the operation.   

I would prepare people at work and in the family that this is a big operation - even though the scars might look small.   You may well revover fast and well, but it is a big operation. I had my Mum come and stay (I am 50

, with a husband, 3 teens and a dog) and I was very grateful for the quiet company while I was miserable, someone to answer the door and do the heavy lifting of washing/cleaning and just be with me.  When she went home at week 2 I was very comfortable I could do most everything myself. 

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

I bought a recliner (that I have been wanting to get for a while now anyway) so I have a nice place to recover and not feel like I'm stuck in my bed :) I'm planning on pre-making a bunch of meals ahead of time. I drive and since my removal is on the right side, I am a little nervous about the belt being on the incision. I'm in school so any energy I have will go into getting homework done and working on my internship stuff. Work can wait :)

I've also got a list of friends who are willing to stop by and do my shopping if I need anything. Your list was SO helpful in getting organzied. Only 10 more days to surgery! YIKES

Supersum's picture
Supersum
Posts: 109
Joined: Aug 2017

Pain pills, if you need them, will most likely make you very relaxed and possibly slightly drowsy (no driving). Sometimes if taken in the evening they work as sleeping pills. They don't cause you to act in a strange way so no need to worry about that if you need to use them. You should not need to take many and instead you will probably find over-the-counter medication to be enough after a short while.

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

Thank you for sharing that. I took Oxy when I had my wisdom teeth removed (all 4 at once!) in my early 20's. I don't remember anything from the two days post op.... lol. By nature I don't take pills for anything. Rarely took an ibuprofen for pain (I always wonder if we just know we have things in our body and naturally stay away from certain things). Guess I'll play it by ear and try to follow Drs orders. He told me he will put extra numbing injections around the incision when he closes up and he's putting stitches inside so I won't need anything removed and should have less incision pain the first day. Yikes. 

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

Hi, I had all my stiches internally and it was awesome. No need to go to a Dr. to get stiches removed, no itching or irritating end stitch/knot.  Even the knot was buried.  The scars in March (op Nov 11)  are thin lines, except for one 3mm at lower belly that has decided to keoid a little and is itchy. 

CRashster's picture
CRashster
Posts: 241
Joined: Mar 2017

When I got sick, I had a hard time accepting it. I wanted to put off the surgery, I didn't want to take off work. I didn't want to do the pre-surgery. Then something in my head clicked. I had to just stop and let them fix me, however long it took. After that it was easier. You have to let them fix you.

Jackaroe's picture
Jackaroe
Posts: 23
Joined: Feb 2013

The wonderful thing is: you can be fixed.

 

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

I feel like I've started to come to terms with it. I know I want to be fixed, I have so much to live for and do. I know that going through this will make me a more compassionate, empathetic social worker too. But dangit, why. In most respects (other than weird food allergies) I'm healthy. Perfect blood sugars, cholesterol panels, Blood pressure etc. I've always been proud of being in good health. I lost my dad to pancreatic cancer 11 years ago. But my grandma has had breast cancer and other cancers resulting from the treatment over the years and is 93, still running a business. I like to think I'm more stubborn like her :) I'm also terrible at asking for help. And I find myself comforting others when I tell them what I'm having done. It's so odd.... 

Otrava
Posts: 9
Joined: Mar 2018

I was diagnosed with kidney cancer 2 weeks ago stage one and a week later told by the oncologist that my kidney must be removed the tumor is in the center of my kideny near main blood vessels and tubes. I will have the surgery but am scared!

 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

So sorry you had to find yourself here

The shock is devasting especially when you start reading.

The fear is horrendous.. We have all sat where you are and felt it so can totally understand 

i am sorry I don’t have a experience of a full nephrectomy only a partial but if I can re assure you that in most cases the surgery is straightforward.. in fact in most cases if a full nephrectomy is planned it is easier to remove as the kidney does not need to be isolated (less risk of bleeding)

lots of people only have one kidney [born with one, malfunctin ‘ donation )

whilst  it is a major operation  it is very doable... quite a few of our family here have had it done and doing very well

you have been referred to an oncologist 

what size  was the mass did they said i

the aim is too  too give You the highest chance of a cancer free future and lots of people here are doIng just that

I understand the fear but as I always say if  I can do it with my  hard to find veins and fear of pain then anyone can

keep us posted

Annie

 

 

 

 

 

 

Otrava
Posts: 9
Joined: Mar 2018

Thank you so much for the encouragement! I am scared but hearing everyones triumph helps me. The tumor is about 3/4 an inch and is said to be slow growing but I want it out as soon as possible!

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

I will never forget the call I got last summer about them finding a mass on my kidney. I have felt all the stages of grief. Mine is at the lower part of the kidney but it grew in 6 months from a small mass on the bottom all the way up the side. It scares me more to leave it in. Although I'm scared about having surgery and recovery, I'm more scared to leave that thing in! Good luck and I'll be sending good thoughts your way!

Otrava
Posts: 9
Joined: Mar 2018

We are together going through the same thing! I thank you so much! I also like your smile it encourages me! Why did your tumor grow so fast? I was told that mine is slow growing it is about 3/4 an inch. When will you have sugery? I am waiting to here from the scheduler and you also have children that is difficult!

Otrava
Posts: 9
Joined: Mar 2018

Hi, I also felt the same but I have to have  the surgery as you said fix me.

donna_lee's picture
donna_lee
Posts: 1014
Joined: Feb 2009

I realize your are busy, have a job, grad school  and "stuff" on your plate.

So I'll give it to you like it was presented to me.  "You have 5-7 months to live,....unless thay can do surgery."  And almost 12 years ago, I chose surgery.  It was extensive, as the tumor had mets to nodes and the liver. All those parts were remove, along with the defective gall bladder & main bile duct that had made we mention something to my dr.

It hurt a lot, I was sick with pancreatitis, but I was alive.  The cancer recurred in separate nodes 2 different times, requiring surgery- one easy, one difficult.

Would I go thru it again?  You betcha!  Otherwise, I wouldn't be here to give you advice.  The drug treatments available at the time were primitive and not really designed for long term survival.

Cancer changes the perspective we have about life and wanting to live.  So don't let anything get in your way, Jenn.

Be a survivor.

Hugs,

donna_lee

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

Thank you so much Donna_Lee for your encouraging words. Some days I'm really struggling with it because I'm a planner. I like to understand and know things. Everything about this is unknown. Unknown how I'll respond to anesthesia, unknown how I'll heal or how long it will take, unknown if it will set back my schooling and the grant I could lose, unknowns..... 

I know this is odd, but last summer I noticed my cat (13 years old) had a sudden personality change and wanted to be with me and next to me constantly. I actually said to him, what, do I have cancer? A month later I decided to follow up with the ultrasound for the on and off gastro pains I'd been having. Gallbladder was ok, found a small hiatial hernia which was likely causing those symptoms, and discovered the atrophic kidney and the mass. Watched it 6 months, Urologist was sure it wouldn't change and I'd be able to move on with life. He was so wrong. And I knew in my heart he'd be wrong. Even the last time I saw him he said, there's still a possiblity it's benign, we won't know until we take it out, but It's a weird one and I don't like the look of it. sigh.... Self-care is taking on a new meaning I think. 

 

Otrava
Posts: 9
Joined: Mar 2018

You are awesome

Steve.Adam's picture
Steve.Adam
Posts: 463
Joined: Oct 2016

Donna, you are awesome.

Steve.

Supersum's picture
Supersum
Posts: 109
Joined: Aug 2017

At the very least if can be disappointing and upsetting to need a nephrectomy, especially if we are otherwise very healthy.

However the procedure itself is very much routine now and is not something in itself which should have us overly worried.

People even volunteer to have a kidney removed when they donate a kidney, a recent well-publicised examply being pop star Selina Gomez's BFF donating a kidney to the singer https://www.unilad.co.uk/news/selena-gomezs-best-friend-urgently-donates-kidney-to-save-her-life/

The procedure is much simpler when the kidney is being removed for medical reasons because the focus is on just getting it out rather than preserving it for transplant.

You mentioned somewhere about stitches, you will most likely need a few external stitches to seal up a drainage hole (sometimes they try steristrips but stitches are better). You will need to know how these are going to be tended to when required (local doctor? visiting nurse?).

In fact, you are in a good position that you are in good health and you have plenty of time to plan and organise things to prepre for your procedure and recovery. This includes thinking about your allergies and preparing everything you need for them.

You can get some ideas about what you need to prepare for here (apart from the allergies): https://csn.cancer.org/node/312552

This can help focus your mind on preparing for the best possible outcome.

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

I've been trying to use keywords and search the boards and I feel like I'm trying to piece it all together since every experience is so different. I took a trip to the Oregon coast yesterday to get my feet in the sand and hear the ocean so when they knock me out that's what I'll be thinking of. Thanks for all the kind words <3 anxiety is not my friend! 

Steve.Adam's picture
Steve.Adam
Posts: 463
Joined: Oct 2016

Hi Glidergal,

I first read your name as Gildergal and was wondering if you are Dutch...

I have a possible recommendation, or at least something to think about. After my nephrectomy just over a year ago I healed very well. I had about 12 inches of incisions altogether and they all healed well without complications and really very little pain. i have had no pain to speak of since leaving hospital.

I was on a low carb diet for 2 years before the surgery and that is an anti inflammatory diet. So I would recommend a diet that lowers inflammation. I would say avoid sugar and flour and especially avoid vegetable oils which are high in omega 6 fat and promote inflammation. Maybe eat high omega 3 foods which are anti inflammatory.

Maybe I was just lucky but I am pretty sure that diet helped a lot. Doctors and nurses told me several times that I was doing very, very well.

I also recommend a light diet for a couple of days prior to surgery. Constipation is a certainty so you might regret large meals the day before.

Steve.

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

I thought SugarMamma may not be the best tag line for this forum HAH! 

I've been gluten free for about 4 years (mom is celiac), Corn free, almost no dairy except for some half and half in my coffee and sugar free for over a year. I have a lot of food sensitivities so no preservatives either. I only use Olive Oil. I've dropped 65 pounds in the last year just eating as natural as possible, mainly Chicken, lean pork and veggies that I'm tolerating and not reacting to. I'm curious how I will heal because of it too :) Thanks for your input! I bought some Ducolax anticipating issues. What other things do you wish you had on hand during the time you can't drive? 

 

Thanks! 

Jenn

Steve.Adam's picture
Steve.Adam
Posts: 463
Joined: Oct 2016

Hi Jenn,

We had a sugar glider at home for a few days when I was a kid. My uncle cut down a tree and found a young sugar glider but no parents. They brought it to us to take to a wildlife sanctuary. It was named Hoodat for reasons I don't know. (Who's that?)

If your little cuts and scratches heal well then the big stuff should too.

I have no family to look after so my recovery was quite untroubled. I just slept and walked for a couple of months.

I was very tired to begin with. Everybody underestimates this. Even after 6 or 8 weeks I was still having tired days. I lost a lot of blood and it took my haemoglobin that long to get back to low normal.

I had an easy time but no responsibilities so no reason to push things.

You'll almost certainly be more tired than you expect so you might as well plan for it.

I was in hospital for 9 days. When I got home I didn't need any help with anything around the house but didn't do much and did it slowly. It was 3 or 4 weeks before I really stretched out and walked upright.

I prefer a folded towel for sneezing and coughing. Not a pillow guy. I was lucky and sneezed very little but I kept using that towel for weeks. It was like a security blanket. I took it to the toilet with me. I hope that is not TMI.

Steve.

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

A box to put your meds in so you can move them aroud to wherever you are camping out.  

A notebook to write down what you took when. 

Comfy, roomy clothes to wear - I chose knit dresses, no waistband. 

Proper comfortable shoes for walking in to avoid trips.  Fluffy slippers are nice but not sensible footwear. 

Clean up at home and makes some meals or orgnaise a grocery delivery etc. 

The medicine I found helped most to avoid constipation was a lactulose based one.  I don't tolerate some of them with sienna.   Important to start before the operation and opiod use.  

Something at home to eat if you are nauseas or unwell and just don't want solid food.  I was eating a lamb roast 1 hour post op, very unusual and needed none of the soft foods I prepared, but lots of others ate very lightly post op and suffered nausea and subsequent dehydration, feeling worse from not eating.  It might be a meal replacemen shake, or boiled eggs, soup, mashed veg.  Just something you know you like to eat/drink when not well. 

Organise the bed so that you can roll out on the side your operation is not on.  Someone here told me that... I would never have thought of it. 

Simple heat pads (small towel in a zip lock bag with some water and microwave works easily and mould to the area,helpful for neck/shoulder pain from gas). 

A small pillow for holding on wound for travelling in car and sometimes getting up and down or when coughing. 

Some people really appreciate a lumbar support.  I didn't need them.  I did appreciate my adjustable bed.  Otherws like the recliner lounge to sleep in for a few days. 

Let people know if you want visitors or not and what they could do to help you out. Maybe it is kid pick up drop off. A meal.  I didn't want any visitors. Too tiring. 

Find out when your preferred doctor (GP) is available for appointments and what to do in an emergency once you are home. How will you get there?  What do you need to take with you etc.  You may not need this informaiton, it will be more comforting to have it organised.  Eg. my GP works only 3 days a week, not something I usually focus on, but if it is her I wanted to see I would know which days she was avaialble and what times.  Also useful to know when to skip the GP, send a message to the surgeon and go to the hospital.   

Your surgeons out of hours contact details if that is something he or she does.  An understanding from them when you should call them, your GP, the hospital. 

Someone to pick you up from hospital. 

Steve.Adam's picture
Steve.Adam
Posts: 463
Joined: Oct 2016

Interesting... I got out on my neph side.

I had a right nephrectomy.  Starting from the first time that nurses told me how to get out of bed I used the right side. I am right handed.

The technique was to roll to the right and get my knees and lower legs more or less ready to sit up. Then I pushed up into a sitting position. I maintained a slight lean to the right the whole time so my wound was not stretched. The first time was a kind of act of faith because I expected it to hurt, but it didn't. I think it was ok every time after that but I was very careful every time.

I think the first time was 2 or maybe 3 days after surgery.

Steve.

Steve.Adam's picture
Steve.Adam
Posts: 463
Joined: Oct 2016

You reminded me of my anaesthetist. He had so much trouble finding my veins and arteries... He was so distressed by it that he had to go outside for 10 minutes to calm down. Poor guy. That helped take my mind off things... "No worries mate, It's cool." And then I was out to it.

When it was all over I seemed to have tubes in me everywhere so I guess he figured it out.

Steve.

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

That is quite interesting, especially the cat!  But they do say pets can pick up on cancers, have heard that many times.  Donna Lee's words are powerful, and she's such an inspiration.  I'll just agree with everything she has said and reiterate the fact that she's still with us.  Surgery can be stressful and recovery painful, for sure.  Personally, my "Bob the Blob" as I refer to it, was a bit smaller and I had the DaVinci procedure to get rid of it and truthfully didn't have much in the way of pain to speak of.  Guess I was a lucky one.  I was in the hospital 2 nights and only used pain meds once after I got home.  Mind you, I was uncomfortable for sure, but nothing worthy of pain meds.  I was very weak and that bothered me more than anything else.  Just listen to your body, and rest, rest, rest.  In between the walks and breathing exercises.

Best wishes & keep us posted,

Donna~

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

Good morning. Time will be your best friend. I understand your situation as I too am a single mom. I had my surgery in November and took a good 7 weeks off from work. I went back for 1 month only to have to go off again. It really sucks to know we have to face all of this and then still worry about bills and work. Please be kind to yourself. There will always be bills and there will always be work. There won't always be good health. Please be gentle to yourself after surgery and take your time. Do not push yourself too hard and put yourself backwards. Everyone has a different experience. Mine has been quite a long road, but I had a radical nephrectomy. Be honest with yourself at all times about how you feel. If you are sore or tired....rest. I wish you all the best!! You are in the right place and will get great info and encouragement here.

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

Reading everyone's stories and experiences has been the best part of this process. I'm one of those people who needs to understand things to feel a peace. Reading medical articles helped too. I guess having worked in healthcare most of my life that's how my brain works. But it's different when it's you instead of about someone else. I've convinced myself I will be out of work at least 3 weeks and will see how I feel about part time work after. But I've also started to accept that I may need all 6 weeks. I am hating not being able to plan. I'm guessing that's a personality thing haha. Did you start off slow? I can do desk work and not do home visits etc for a while until I'm feeling comfortable, so I was thinking part time for the first few weeks I go back. Is it just that you feel really tired? I know my case may be a litle different too because the kidney being removed is atrophic, so its only done about 5% of the work most of my life. I imagine it's harder to recover from a partial where the organ is trying to heal itself, or someone who has always had two functioning kidneys. I guess time will tell right! 

I really appreciate everyone's insights and willingness to share their experiences :) ya'll are amazing. 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

 have read old literature that recommended 4 week recovery

The recent literature says 6 weeks

My surgeon said 6 weeks and I was back in five at a desk job .its was tough but doable.. it’s the exhuastion 

i understand you want to know but if you tell yourself three weeks you will  be pushing yourself to meet that irrespective of whether You are ready or not 

yes part time is a very good idea. You dont  want   The added pressure of full time and trying to keep up with every one else

what did your surgeon say

Annie

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

On my Short Term disability paperwork they put 6 weeks, but in my surgical consult he told me he has seen people return within 2-3. It depends on how my body responds to the surgey and heals. I told my work I expect to be out until April 30th at least and then I will see how I'm feeling. My priority is going to be school and doing things for my internship hours. I have to get 146 hours between April 1 and June 15th to complete my term. They are giving me a bunch of reading and stuff I can do from home to meet my hours so I can pace myself and not push too hard :) My paid job can wait. 

lken37's picture
lken37
Posts: 12
Joined: Nov 2017

I think worry is normal, but mostly unnecessary.  As far as the pain pills are concerned I expect you will find you won't need them very much.  I think I took two the first day after surgery then went to tylonol.  I too have a fairly high resistance to pain  Just I spent one night in the hospital then went home and have done well since. 

Subscribe to Comments for "Nephrectomy scheduled- feeling anxious"