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having open partial nephrectomy on Monday

pappy1264
Posts: 4
Joined: Apr 2016

I just had my pre-op stuff yesterday.  I am almost 53 yo.  When I was 16 I actually had surgery on that kidney (left) due to an issue with the ureter, so I already have a lovely 8" incision on my side.  Doc will be going through that scar again (ugh).  Cannot have robotic due to location of tumor (in the middle of my kidney).  Doctor said yesterday good chance I will have a chest tube put in to keep left lung from collapsing.  I will also be having epidural to help with post op pain control for first day or two.  Also because I had a trachoetomy at 14 months of age, I am at an increased risk of issues with the breathing tube needing to be kept in for a day or two (actually a smaller one put in), they said because the risk is because of all the fluid needed/used in this surgery?  I remember how hard it was for me at sixteen to get through that, so now at 52+ yrs, I am terrified!  Can people share stories of what to expect (as best you can, as I know each recovery is different)?  The first doctor I saw (who is the one doing the surgery) was like 'I think you will be better then you think you will be'.  But the doctor I saw yesterday (a female collegue) was like 'this is much worse then the other surgey you had.'  I wanna run and hide!  lol  I have so much cancer in my family (mom is in remission from breast, lost my oldest sister to breast, moms twin sister, my aunt, passed from breast as well.  Hell, I have had three scares already, lost my dad to brain tumor, hubby is in remission from non-hodgkins, he lost his older brother to liver.  Matter of fact my sister and his brother were diagnosed 4 weeks apart and they passed 4 weeks apart 5+ yrs. ago.  My hubby has been in remission from NHL for 18 yrs.  Hell, I have lost three of my dogs to cancer as well.)  So back to me.  Please give me some idea what to expect.  Thank you.

icemantoo's picture
icemantoo
Posts: 3313
Joined: Jan 2010

Pappy,

 

Welcome to the club which no one in their right mind would volunteer to join. I was nephed almost 14 years ago at a then young 59. I wish I could tell you that this was like a procedure and it is easy to get thru, but I would be laughed of this board. Getting nephed is major abdominal surgery and has been around for years. A partial which involves a little more cutting is a more recent surgery. All of us on this board have went thru this although without your extras. The one certain thing is that the surgery beats the alternative and the fact that you are having a partial suggests that your tumor is relatively small. The recovery for the first week or 2 is no fun, but after that every day gets better with maybe a bad day in between. If this cry baby can get thru it anybody can. E neph already. Letts get the little buggar out.

 

Icemantoo

pappy1264
Posts: 4
Joined: Apr 2016

Thank you.  It is 1.8 cm, and am told that is small.  It was found when I had an MRI for back pain (also have a bulging disc...Frown).  I guess I will know how I personally do when I get there.  I still remember how it was like all those years ago, and that was not with my kidney being taken apart and put back together again missing a part!  My biggest concern are my critters...I have a mini zoo (and it isn't that mini) and being able to take care of them again.  My family will help but I don't like having others having to do it, I have never asked anyone to, they are my babies.  But I know I won't be able to (they told me 3-4 days in hospital...just wondering how long after that before I will be able to at least feed everyone!)  It has been very emotional for me (there is a whole long issue that precluded this that has gone on for over a year that now has been pushed aside, as cancer trumps pretty much everything!)  I guess I just want to get it over with and get back to my life...I just hope it is not too long before I can do that.Tongue Out

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Basically they cut it out and monitor you afterwards.

You will get very emotional, thats to be expected: Cancer is a terrifying word but it sounds like they caught it early. So very little to worry about.

So we've all been there. Dont hesitate to share any worries or fears you have. Thats what we do.

Welcome.

I reckon you'll do very well.

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

I had a left partial 3+ years ago but mine was via robotic. I was in the hospital 2 days. I only took pain meds once after I returned home. Uncomfortable? Yes. Pain? No. Weak? Never felt so weak in all my life. I was 59 at the time. The first couple of weeks were the worst of it. Try to prepare meals in advance if possible and if you can get hold of one of those Velcro lumbar supports, it really helps when you're trying to get in an upright position. I needed the help of others the first week & then I was on my own. My biggest mistake was overdoing it at 2 weeks post-op. Ended up in the ER that night. Extreme pain & felt like I tore something internally. Stupid me. Listen to your docs regarding limitations.

Keep us posted,

Donna~

rja3d's picture
rja3d
Posts: 35
Joined: Mar 2016

I just joined the club after partial open neph on 19 Jan this year and you'll find that this is a great bunch of folks eager to help and encourage you.  I was in the hosp a week which was tough, but as others say here, it wasn't as bad as i expected.  I did alot of short napping and getting up and moving about the first two weeks after getting home.  I was able to bend over and do things, but slowly and deliberately and the abdominal splint made a big difference. after that, it's getting used to the soreness and stiffness of the incision site, etc.   Like others will say, you have to take it easy, and getting over 'major abdominal surgery' takes awhile.  Get through the surgery, which i'm sure will go fine, then come to terms with the cancer aspect of it one day at a time.   Best wishes to you!

 

Jay 

APny's picture
APny
Posts: 1994
Joined: Mar 2014

I'm so sorry for you'll been going through not only with your own issues but with family illness as well. I had an open partial two years ago this March and I can honestly tell you my fears and imagination were a lot worse than the reality. It's no picnick and yes, it's uncomfortable and limiting, but not nearly as painful and bad as I had anticipated. I did not have a breathing tube or a chest tub so not sure how that will add to the discomfort. I did have a drain for a week but I sort of got used to it. I was out of the hospital in two days and sitting at my computer doing work on day 3 or 4, don't remember. Was able to walk up stairs, sleep in my own bed, and get off pain killers after about a week. Make sure they get you up and walking as soon as possible. I was walking around the ward the night of my surgery. Also drink a lot of water. Make sure they give you a spirometer (some kind of breathing exercise thing) and use it to keep your lungs clear. I did that for 2 weeks post surgery. Wishing you the very best and hoping for a quick recovery for you.

Oh, and definitely have someone helping out with the critters. You don't want to be bending down feeding them or cleaning cat boxes if you have any. Don't know what kind of animals of you have but lifting them, bending, etc., or even walking them at a fast pace if they should pull you is not something you want to be doing for several weeks.

 

Allochka's picture
Allochka
Posts: 942
Joined: Nov 2014

Hello,

your cancer is very small, caught in time, so you'll be fine after the curative surgery. I am here because of my husband, he had open partial in DEC2014. After all it was not that bad. He had some pain and was weak for a while, but nothing too dramatic.

Apny is spot on about breathing exercises. My husband was told to do them, but ignored, and got pneumonia, kind of  post-surgery complication.

Good luck, you'll deal with it very well, I'm sure!

pappy1264
Posts: 4
Joined: Apr 2016

Thank you.  I have had surgery on that kidney before and did have to do the breathing thing.  I already have an 8" incision from the surgery at 16 yo, and do remember that.  I can still remember the first time and getting out of the hospital bed...ugh!  I actually got a craftmatic adjustable bed so that is good.  I have a pretty good pain tolerance but the doc I saw for my pre-op really got me nervous!  I am so glad there is a place like this!  

Critter wise, I literally have a zoo.  3 dogs and a bunch of small critters and I also do wildlife rehab and have those kinds here too.  Feeding isn't hard, so long as I can stand up, I can do it.  Kids and  hubby are here, so they will do whatever needs done.  I know I cannot take my 1  yo dog out, he is a major puller...the other two are well trained and do not need leashes, so thats good.

I HATE taking pain meds, but know I will need to, but I will be off them as soon as I am able!  

I appreciate everyone here and God bless you all for all you are and have gone through.  Been through cancer so much in my life, its crazy.  But I always tell people, in some strange way, it is a gift of sorts, a reminder to not take one minute for granted.  Nothing is guaranteed and it is so easy to get caught up in 'the small stuff' and waste time.  Live every day to its fullest, tell those you love every chance you get you love them, and don't put off doing something you really want to do...

donna_lee's picture
donna_lee
Posts: 997
Joined: Feb 2009

that means you're still 52; a young kid to me.  Which helps a lot.  Yes, you'll have tubes in and out, but it's for your family and close friends to see, only.  A foley catherter to catch urine while you are confined to bed, a tube to drain fluids from you abdomen into a bag, and either IV's or a central line to put fluid and meds into your body.  The worst part seems to be trying to not get a kink in anything and still try to get comfortable.  I too, prefer a spinal anesthetic, and since mine also was to remove mets to the liver and check for other mets, it was a lenghy surgery.  Into ICU sometime Thursday morning, to my room on Friday, and out of there on Tuesday.  I needed help standing and walking, and rested and slept a lot (in a recliner chair at first).  But by six weeks I was pretty well on the mend and was released to go swimming/walking/or whatever I could physically do.

Hospital facilities and proceedures have come by leaps and bounds in the past 25-30 years.  PCA pumps, beds that adjust easier, computer controlled meds administration and security controls, private rooms, etc.  You won't be allowed to shower, but take advantage on sponge baths and warm, body wipes.

You'll do fine.  Keep up good spirits and happy thoughts.  Don't dwell on your previous surgeries and/or you losses.  This is a new day for all of you.

Best wishes and Hugs,

donna_lee

 

 

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Once the catheter was out, he was able to shower. But it took a couple of days. And he didn't have any abdominal drains that I recall. 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I would see if you can get someone to help you from the start when you return. Of course, you think, and hope, that you wont need any help, but better safe than sorry.

At worst it'll be someone to share a cuppa tea with

PonyWave's picture
PonyWave
Posts: 33
Joined: Apr 2016

Hi Pappy, 

i understand how you feel about your critters! My dog's litter of five puppies were three weeks old when I had my surgery. I'm a super attentive mom and trying to bend over to take care of them was the worse part about my recovery. But who can resist puppies? The pain was well controlled on Vicodin for me until I moved around too much. I slept sitting up on the couch for about a week which helped a lot. We bred my girl before my cancer was diagnosed. The litter is now 6 years old! We kept two girls and friends have the others.

I'm very happy that they caught your cancer early. 

And with hope for you and something to hold onto - I just had surgery this week for something unrelated to the kidneys and the pain was 100 times worse! I cried!

Good luck!

rja3d's picture
rja3d
Posts: 35
Joined: Mar 2016

Praying for a successful surgery and good recovery for you.   let us know how you're doing.

 

Jay

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Well Pappy I am sorry I missed posting this BEFORE your sugery day (today). I meant to.. Remember there will be that gas they use to pump up your abdominal wall so they can SEE inside better. That gas gets trapped, often in the shoulder and it hurts. I did circular motions with my arm to help get rid of it. Remember, the pain won't kill you!

I also HIGHLY recommend wearing a lumbar velcro wrap used for bad back issues. I wore it after two abdominal surgeries and it really helped hold up those sore muscles. I also place dry ice blocks inside near incisions to keep the swelling down. As a result I didn't have to use as many Pain pills. I also wore it to bed so I could get UP easier or to get up from a chair.

Let us know how you are doing. I am thinking of you now. These "daze" will be over soon and you'll be in recovery.

Gentle hugs, Jan

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Can you share more about your imaging so far and diagnosis and what kind of surgery they are doing? I read and re-read your post and don't see if they are doing a partial or radical nephrectomy? My tumor was also in the middle of my kidney, and they told me I wasn't eligible for a partial because of the location (center of the kidney is where all the blood supply routes in and out through the kidney).

Usually they can't do a diagnosis of kidney cancer until they get the tumor out and look at it under the microscope. Imaging isn't enough. Unless they did a biopsy? Even with a biopsy, you won't really know what it is until pathology slices it up and looks at it under a microscope. Then they'll let you know exactly what it is.

Regarding the surgery, I had a radical right nephrectomy. I had no tubes except the catheter and IV. Catheter came out pretty much right away. My surgery was around noon Monday. I woke up late Monday night (felt pretty bad for sure), but Tuesday morning bright and early they had me walk to the door and back. It was hard but I did it.

I'm awful with pain meds. They may me nauseous. So I had no opiods from the start. They sent me home with some tramadol, but I took that infrequently and switched to tylenol pretty quick within 2 days of coming home. If you can avoid the opiods, your bowel function will return faster. They are very constipating.

Do the walking, breathing treatments, drink plenty of water. Don't overdo it. You're going to be tired for awhile. I took 6 weeks off work. I was glad I did. Was doing some driving about 2 weeks after. Honestly, I was tired for quite a few weeks. However, I lived alone and was able to care for myself from the start. I had robotic laprascopy but ended up with 1 x 6" incision because they wanted to remove the kidney whole.

They used glue, btw, to seal my incisions. That was new. I could shower from the beginning.

Waiting for bowel function to return was one of the most frustrating parts of the surgery. I was pretty well cleaned out before the surgery. Surgery was Monday. No BM until Saturday I think. Maybe Friday night. Eating for a week and no BM was a little scary. Nurse told me as long as I didn't feel nauseous not to worry about it. I took senna plus as directed and ate reasonably bland, healthy, lite food.

Hope it goes smoothly for you.

Best,

Todd

pappy1264
Posts: 4
Joined: Apr 2016

It was rough.  They said 'until we get it out, it is considered cancer.  You have about 15% chance it is benign.  Well, guess what, IT WAS BENIGN!!!  I beat the odds!  That being said, I had a very rough time.  Two days of blood pressure so low (I normally do run low), they were really panicking.  It was because of the epidural that was put in for pain, so after a day, it was shut off.  Then on the second night, I got the worse pain on the RIGHT side, under my ribs, so bad I could barely breath.  Ultrasound did not show anything.  Took me four days before I was even able to get out of bed!  But on that fourth day, things started to change dramatically, as the pain in the right side (it was so much worse then the left was) began to subside.  I finally got to eat solid foods on Friday, and went home Friday evening.  I am not doing bad, although lot of gas build up and cannot go the bathroom (have been on colace all week  and they did give me an enema in hospital on day three, although had nothing in me then!  Sorry if that is tmi...but figure here there really is no such thing.)  I am doing well painwise (well, the gas/pressure is getting to me, but its not really painful, again messing with the breathing more then anything).  Hubby just went and got me dulcolax suppositories...party on a Saturday night...lol  Just want to get things moving and some relief.  Honestly, I am surprised how little pain I have in my left side.  They 'reused' my incision (doc said it was tough but they were able to do it), but extended it about 4" more around the front.  I do have low RBC, Hemogloblin and Hematocrit, but they did not say anything about taking anything for that.  I will call primary this week just to touch base regarding that.  Again, I tend to run borderline normally.  I have good energy, although am resting as I feel needed.  I have only taken 1 5mg oxycontin today so far along with my colace, and have been fine.  Even in hospital, I was not taking a lot of pain meds (it was as I requested it, and I didn't need it alot, mostly at night.)  I do have staples, and go back on the 18th for follow up.  I also had central line in neck but thankfully did not need chest tube!  Only time I got nausea was in recovery, and again later that night but did breathing exercises and it passed.  My doctore said I am very lucky, as they do not see it being benign very often.  Oh, I my tumor was an oncocytoma  Thank you everyone.  If I can get my insides moving, I would be doing fantastic!  lol

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

WOW you sure have been through a lot! Hope you heal up soon.

I figured I was anemic and the surgeon never told me to take anything. Well I made him check it and I was anemic. Start taking OTC, SLOW FE at any drug store/Target. It will help with the anemia.You can wait till doctor tells you to take it, or start now as it will make a difference in your strength.

Cutting on the previous scar should help with your healing. Be careful you don't push itas you don't want to get hernias/adhesions.

I used a lumbar wrap with velcro endings to wrap around my surgical area. Got it at a drug store. Used it for a couple of post surgeries, even wore it to bed so I could get UP. Really really helps!Then I would place dry ice near the incision and trust me, it will reduce the swelling fasterthan ALL the pain meds (with the pain meds).

That trapped gas is awful. I would swing my arm (best you can) to move it out.

Senna S (stool softener/laxitive) works well too. It is over the counter. lots o f WATER and expect it to take awhile. I got off pain meds in 5 days which made me feel better faster. I useTramadol (narcotic but not opiate) and even Tylenol with ice for that swelling.

Glad it is BENIGN! WOW!

Keep us posted as  to how your recovery is doing if you want.

Gentle hugs,

Jan

mrou50
Posts: 389
Joined: Mar 2013

Great news congratulations

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Congratulations! I reckon you've just won the lottery we've all been enrolled in.

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Good news. After 3 1/2 years here, I can't remember it being this 10-15% number they mention. That's just great. We're glad to see people be able to leave here fully cured.

Good luck to you.

Todd

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Yes!! Love to hear some of us beat the odds and have no cancer!! 

Rest well (make sure to check the dosage of your stool softener, I made that mistake after my daughter was born and assumed I should only take 1 tablet but the dose was 3!!)

All else fails, a smoothie "power boost" of 10 prunes (soaked overnight) and 2 tablespoons of Chia seeds added to a fruit smoothie might help. 

icemantoo's picture
icemantoo
Posts: 3313
Joined: Jan 2010

Or should I say Kidney Pie. You are proof of a benign one showing up every so often. Unfortainately for Newbies it usually is malignant.

 

Icemantoo

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Its bloody lovely, and after my diagnosis I eat it with more relish than ever before. If you've never tried it, do so if you get the opportunity. Ive heard Americans say all sort of things about Steak and Kidney pie: that the kidneys are kidney beans etc. No the steak is steak and the kidneys are kidneys. 

They taste bloody lovely, as do devilled kidneys for breakfast

APny's picture
APny
Posts: 1994
Joined: Mar 2014

That is wonderful news about it being benign. Sorry you went through a bit of rough time there but I think the diagnosis made it a lot easier to bear. Wishing you a speedy recovery and do discuss your anemia with your doc. I take Slo Fe for chronic iron deficiency anemia but at first it can constipate you. So wait until you're regular to take it and do discuss it with your doctor first. Too much iron is dangerous too so if you're not iron deficient you shouldn't be taking it. All the best!

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

I would recommend routine follow ups anyway because you have proven to be prone to kidney dysfunction. Make sure you do your part to stay well.

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

You're a lucky one.

God Bless and rest easy.

Donna~

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