Nephrectomy scheduled- feeling anxious

Glidergal365
Glidergal365 Member Posts: 93

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

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Comments

  • Kat23502
    Kat23502 Member Posts: 179 Member
    edited March 2018 #2
    Hi! Welcome to the boards!

    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
    Glidergal365 Member Posts: 93
    Kat23502 said:

    Hi! Welcome to the boards!

    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!

    thanks :)

    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
    icemantoo Member Posts: 3,361 Member
    Anxious

    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

  • Supersum
    Supersum Member Posts: 109 Member
    edited March 2018 #5
    Pain pills, if you need them,

    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
    Glidergal365 Member Posts: 93
    icemantoo said:

    Anxious

    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

    back to work?

    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

  • Glidergal365
    Glidergal365 Member Posts: 93
    Supersum said:

    Pain pills, if you need them,

    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.

    thank you

    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. 

  • CRashster
    CRashster Member Posts: 241 Member
    Acceptence.

    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
    Jackaroe Member Posts: 23
    CRashster said:

    Acceptence.

    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.

    The wonderful thing is: you

    The wonderful thing is: you can be fixed.

     

  • donna_lee
    donna_lee Member Posts: 1,041 Member
    Hi to you, too

    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
    Glidergal365 Member Posts: 93
    edited March 2018 #11
    CRashster said:

    Acceptence.

    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.

    about the acceptance....

    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.... 

  • Glidergal365
    Glidergal365 Member Posts: 93
    donna_lee said:

    Hi to you, too

    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

    Thank you :)

    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. 

     

  • Supersum
    Supersum Member Posts: 109 Member
    edited March 2018 #13
    At the very least if can be

    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
    Glidergal365 Member Posts: 93
    edited March 2018 #14
    Thank you!!

    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
    Steve.Adam Member Posts: 463 Member
    Anti inflammatory diet

    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.

  • Steve.Adam
    Steve.Adam Member Posts: 463 Member
    The knock out

    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.

  • Glidergal365
    Glidergal365 Member Posts: 93

    Anti inflammatory diet

    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.

    I own Sugar Gliders :)

    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

  • hardo718
    hardo718 Member Posts: 853 Member
    edited March 2018 #18
    Welcome Jenn

    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~

  • kiwi68
    kiwi68 Member Posts: 110

    back to work?

    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

    Hello from New Zealand

    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. 

  • kiwi68
    kiwi68 Member Posts: 110
    edited March 2018 #20

    thank you

    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. 

    All the stitches buried

    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. 

  • kiwi68
    kiwi68 Member Posts: 110
    edited March 2018 #21

    I own Sugar Gliders :)

    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

    Things to organise.

    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.