Nephrectomy scheduled- feeling anxious

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  • Steve.Adam
    Steve.Adam Member Posts: 463 Member

    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

    Sugar Gliders

    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.

  • Steve.Adam
    Steve.Adam Member Posts: 463 Member
    kiwi68 said:

    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. 

    Getting out of bed

    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.

  • Otrava
    Otrava Member Posts: 9
    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.

    Entire kidney will be removed Im sad

    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!

     

  • Otrava
    Otrava Member Posts: 9
    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

    Donna

    You are awesome

  • Otrava
    Otrava Member Posts: 9
    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.

    Hi, I also felt the same but

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

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    Otrava said:

    Entire kidney will be removed Im sad

    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!

     

    Octrava

    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

     

     

     

     

     

     

  • Steve.Adam
    Steve.Adam Member Posts: 463 Member
    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

    I think so too

    Donna, you are awesome.

    Steve.

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    edited March 2018 #29
    Good morning. Time will be

    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
    Glidergal365 Member Posts: 93
    kiwi68 said:

    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. 

    Thanks for the tips!

    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

  • Glidergal365
    Glidergal365 Member Posts: 93
    Otrava said:

    Entire kidney will be removed Im sad

    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!

     

    I'm so sorry

    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!

  • Glidergal365
    Glidergal365 Member Posts: 93
    AnnissaP said:

    Good morning. Time will be

    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.

    Thank you!

    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. 

  • Otrava
    Otrava Member Posts: 9

    I'm so sorry

    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!

    Thank you

    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
    Otrava Member Posts: 9

    Octrava

    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

     

     

     

     

     

     

    Annie

    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!

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    In the uk

     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
    Glidergal365 Member Posts: 93

    In the uk

     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

    He wouldn't commit to a return date

    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
    lken37 Member Posts: 12
    edited March 2018 #37
    I think worry is normal, but

    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.