New here/surgery Coming up March 28th

love to have you with us but sorry you have to be here. I had a partial nephrectomy exactly two years ago yesterday. I was fortunate not to have to do bowel prep but have done those for colonoscopies. Not pleasant but no big deal. I had my surgery Monday morning, up and walking that evening, home Wednesday and at my computer doing work on Thursday. The day after surgery was toughest but they gave me painkillers so manageable. Otherwise it was honestly not nearly as bad as I had feared.

I walked for five minutes every hour and drank tons of water. Bought a recliner to sleep in but didn't need it. Able to walk upstairs and slept in my own bed. What I did that helped is I got a wedge pillow and piled more on top. Also got a long body pillow to support the side with the incision. I came home with a drain for a week so it supported that as well. Slept fine on my back like that. Getting in and out of bed is hardest but they'll teach you to roll in the hospital. 

For the way home get a large garbage bag for seat of car  that way you don't have to twist, just glide. It's the bag that slides and not you.  Also bring a pillow to cushion the seatbelt from rubbing. 

I went back to the treadmill after about a month, not positive. Ditto for sex. 3-4 weeks I think.  Hope your recovery is as uneventful as mine. A lot depends on tumor size, location, incision size, etc. Mine was 3.5 cm and the incision around four inches. No staples. So all that helped 

I'm wishing you the best And sorry this is so long winded!

foroughsh said:

Wellcome to the board no one

Wellcome to the board no one wants to join

I had open radical neph to remove 10cm tumor along with kidney and adrenal gland. My surgery was done on Monday afternoon, walk at around tuesday noon and wS home on wendsday morning. The insicion is less than 4 inch which is wonderfull. The surgery isn't walk in the park but we all have survived so will you. Every body is different at healling so don't put any pressure on yourself, take enough nap, eat healthy food, dink loads of water, walk and walk and walk, have someone foe at least one week to take care of you just in case of emergency, prepare foods before the surgery, have a pillow near by, and let your body heals, remmember that ourside heals sooner than the inside. There are many nerves, veins and organs ehich should learn how to behave differently anter the surgery so it takes time so about comming back to gym I think it's best to talk to your surgeon. I perssonally didn't come back for almost three months and the reason was more emotional as it was a big shock for me to hear "C" world. It took me long time to back on track, at least 8 months. I'm almost normal but this is a new normal which is far different from what it was before diagnosis day. Sex, I think 10 days after the surgery. My husband and I had one week trip abroad 22 days after surgery and I was fine with walking, exploring, swimming,shopping, ... However I had diziness,fever, nausea for ine evening and I had to take rest foe an evening,I think it had nothing to do with surgery.

I came back to work after six weeks and just the first two days was a little uncomfortable sitting on a chair for 8 hours.

My toughest fight wasn't physical, it was emotional, it took me long months to finally get over it.

Thinking of you and sending you good vibes

Forough

Welcome Ricksgirl....sorry about how you got here. You are journeying through the worst part of this....the waiting, the wondering the worrying. The surgery is no picnic, but generally it isn't that bad - now I had a total nephrectomy, so I can't speak to a partial. With 4 kids you will be itching to jump right back into things. But please take it easy. Your body will need to heal and you don't want to induce complications (hernia, for one) and delaying your healing. I suggest making meals ahead of time and freezing them to ensure that you don't need to worry about that. I was doing laundry within 5 or 6 days...but that was a no-no. I was kind of euphoric after the surgery - just so relieved that it was behind me and that it went well.

Good luck - will be sending good thoughts your way on the 28th!

Hugs

Jojo

ricksgirl said:

Thanks EVERYONE for all of

Thanks EVERYONE for all of practical advice - body pillow, garbage bag, gallons of water walking, resting (this will be the tough one for me). What pain meds will I take?? I vomit from most narcotics...is there something I should be asking for? I told my oldest and he took the news in stride (I did present it in a practical way). Telling youngers this afternoon. My parents want to help out, but not sure what to ask for?? Feeling burdened, but hopeful. Appreciate the kind words and support.

I'm new myself.   being active and in good shape will certainly help.  get plenty of rest and let the family wait on you - they'll enjoy it.  My tip:  get an abdominal splint (Amazon)  really helped me to be more comfortable moving around 1st couple of weeks after open partial neph.  keep in touch!

Jay 

Jojo61 said:

Hi Ricksgirl,
Just a quick

Hi Ricksgirl,

Just a quick answer to your "medication" question. I have trouble as well. While in the hospital they ended up putting me on dilaudid. I hope you find something that works for you!

Hello and welcome~ glad you found this site. You'll find out how supportive and informative it can be.

If you have trouble with Opioids there are other meds that help AND ICE over your incisions really helps reduce the swelling. As a result I didnt need pain meds after 5 days, just ice and tylenol. BUT others may need it longer.

What they don't tell you is that dang GAS that is used to pump up your abdominal wall so the surgeon can SEE. It gets trapped in places like your shoulder and it really stings. I would just swing my arm about 360 degrees and try to walk it off.

I also used a velcro, lumbar WRAP used for bad backs. it really held in those sore muscles until they healed on the inside. Used it in bed/chair so I could get UP easier, then when walking.You are not allowed any exercise for 30 days. Or whatever your surgeon says, follow.

Also some of that nausea comes from the gen anesthesia still in your system (takes days) plus now you are getting oral pain meds. I asked for ICE while inpatient and the RN looked puzzled as I had pain meds ordered. Finally the PT therapist got me some ice inside a latex glove!! LOL It worked!

Keep asking questions. You'll get through this. Hope you have help at home, do you?

Hugs, Jan

ricksgirl said:

Thanks

You guys are great! I'm making a list of items: pillows/garbage bags for ride home, loose clothing, lumbar wrap, etc. Feel free to keep suggestions coming. Husband is taking 1st week off. My friend is organizing meal drop-offs (and visits as they work...). This news has made me lose my appetite, but I'm trying not to go into the surgery all frail and tired (good luck, me!). Can't seem to sleep well right now. I have a 165-pound dog so am figuring out help for walking him (doc says 1 month since he might pull?). Anyway, wishing you all good things on this first day of spring (though in Boston we are expecting snow)...

Ricksgirl,

Pain medications make you constipated. Ask for some stool softeners. No one in their right mind wants to be cobstipated a week after a neph when that big day happens,

Icemantoo

You will do just fine! Since it is a parital, it must be small and you got it early. That is great! Big relief there. You say a cyst, how big is it? Get a copy of all of your reports and make a file. He can't know for sure what it is until it comes out. Can just be a cyst, not cancer. I have seen that happen before.  Have you had any of the commom symptoms, night sweats, pain, fever, high blood pressure? Just curious as it was described as complex cyst, not a mass. But you should heal quickly and be fine. A mom with four children, a home based job and a strong will, you might not get any rest! But, take it easy at least for a week or two.  Sex? Ya see, you are already thinking ahead.  Try to cook some meals and freeze them before hand if you are able to do that. It will help on those days if/when you are tired. Get all the laundry, ironing done for the week as well. This way it won't be on your mind too much.  

My mom had a radical at 79 1/2 years old, four years ago.  She was in intensive care for 3 days and went home two days later. So, five days after surgery she was up cooking Sunday dinner like it was nothing.  She had robotic surgery.  Let us know how it goes. Don't worry, you will be fine and I am betting you will say it wasn't as bad as you thought it would be. THe waiting is the worst part! Hugs to you and the family.. keep us posted!

ricksgirl said:

Thanks

You guys are great! I'm making a list of items: pillows/garbage bags for ride home, loose clothing, lumbar wrap, etc. Feel free to keep suggestions coming. Husband is taking 1st week off. My friend is organizing meal drop-offs (and visits as they work...). This news has made me lose my appetite, but I'm trying not to go into the surgery all frail and tired (good luck, me!). Can't seem to sleep well right now. I have a 165-pound dog so am figuring out help for walking him (doc says 1 month since he might pull?). Anyway, wishing you all good things on this first day of spring (though in Boston we are expecting snow)...

Just wanted to stop in and say HI to you and to wish that your future surgery and treatments are unremarkable. You have come to the right place for any information you may need during your personal journey. I do not have much experience here, but all of my friends on this forum provide so information and caring thoughts, they are the best of the best.

I wish you well friend.

ricksgirl said:

Thanks EVERYONE for all of

Thanks EVERYONE for all of practical advice - body pillow, garbage bag, gallons of water walking, resting (this will be the tough one for me). What pain meds will I take?? I vomit from most narcotics...is there something I should be asking for? I told my oldest and he took the news in stride (I did present it in a practical way). Telling youngers this afternoon. My parents want to help out, but not sure what to ask for?? Feeling burdened, but hopeful. Appreciate the kind words and support.

Hi Ricksgirl and welcome!

I also am very sensitive to narcotics and vomit easily. Still, both of my surgeries, even though I told them not to give me morphine, they did. I woke up vomiting. I think the first surgery, to be clear, they gave me morphine. I talked to the anesthesiologist about that and he tried something different on the second one, but it also made me sick. Have a talk to your anesthesiologist about this.

After my nephrectomy, they had me take tramadol. It didn't make me sick. However, my second surgery they didn't want me to take it. They said it's hard on the kidneys.

In my opinion there is no way for the doc to tell even that it's RCC from the imaging, much less that it is clear cell or what. They can tell that it's 90% likely to be cancer, but beyond that they need the pathology. They also can't really accurately stage it until they have the pathology report. The pathologist will decide what it is, what stage it is and what grade it is. Before that, they are completely guesses.

I had a radical nephrectomy on the right side, but it was done laprascopically. Still, I ended up with a 6" horizontal scar on my right side (they wanted to take the entire kidney out intact), and another 4-4 smaller 1" ones sort of all over the place on my right side. I don't think I had to do a bowel prep. I think they just asked me not to eat.

My surgery was a Monday morning. I woke up vomiting Monday night. It's a tough surgery. Tuesday morning they made me walk to the door and back to my bed. It was tough. Tramadol for pain. It worked ok for me. By Tuesday night I was walking down the hall and back. Wednesday around noon I got to go home even though I had no bowel movement yet. I was a little worried about that. I started eating Tuesday. Liquids in the morning, and solids later that day.

I took care of myself. My bedroom at my house is upstairs. Before I went into surgery, I put a small fridge and a microwave in my bathroom and had my bathroom stocked with everything I'd need. I didn't want to have to go up and down the stairs. This worked out pretty well. Within a few days I was walking out in the neighborhood. The stairs really weren't much of a problem, but I'm glad I didn't have to do them often.

About 2 weeks after my surgery I was driving, but it hurt. In fact, sitting was the worst position for me for about 2 months. Laying or standing was best. I spent most of my time watching tv and walking around my bedroom or laying down or walking outside. Drink a lot of water.

I was off pain meds within just 2-3 days after I got home. Except occasionally I'd take tylenol if I was hurting bad enough in bed. Turning over in bed hurts like hell those first few weeks and getting up and down out of bed hurts.

I went back to work after 6 weeks. I'm glad I took off 6 weeks. I didn't think I was ready to go back, but I was. I got very tired by the end of the day for several more weeks, even a few months. I do a lot of sitting at work, and this was the most painful position because it put pressure on this 6" incision.

Advice. Walk soon and as much as you can. Drink lots and lots of water. Eat light, healthy, small meals. Get some fiber but gentle types. Don't lift anything heavy for a couple of months. It was 5 days before I had a bowel movement, and I think I'm very typical. It's a bit scary eating for 5 days and not having a bowel movement. The doc told me that as long as I'm not nauseous not to worry about it. I took Senna+, a mild, natural laxative which I think also has a stool softener.

If you take narcotics, they can be constipating. Keep this in mind.

About 2 1/2 weeks out, I did take a trip to Vegas. I drove most of the way there and all of the way back. This was about 4 1/2 hours each way. However, it was a bit painful and I got tired easily. I don't recommend it, but I'm just giving you an idea of what was possible.

Hope something in here helps. It takes your body a long time to adjust to a radical nephrectomy. I hope you're getting a partial. If you are getting a radical, monitor your blood pressure closely for the months following surgery. See a nephrologist and get your remaining kidney checked out soon. I advise you to see a medical oncologist soon after your surgery, preferably one who specializes in RCC if possible (if that's what you have). They are much more familiar with how this cancer spreads and they might want to order other tests to make sure you are cancer free and also to get a baseline for further imaging later. Your urologist/urologic oncologist will want to follow you. However, if other disease is found, you're most likely going to be referred to a medical oncologist because they are the ones that manage/treat metastatic disease. Personally, I wanted to get their advice early and have them follow me since I felt more comfortable with having a doc that know about metastatic disease following me instead of a doc that was going to pass me off to someone else if something new came up.

Sorry for the length of this. I really hope something useful came to you from this and I wish you well. You can do this. You're going to be fine. Don't get caught worrying too much about the future.

Best wishes,

Todd

medic1971 said:

Hello there

Well I hate to welcome you here, but glad you found us...

I am 44 years old and I have a 6 year old daughter.  I had a robotic partial nephrectomy this past October at MD Anderson.  I am going to echo what everyone else is saying, waiting is the worst part...

Surgery was easy, recovery on the other hand, was a bit harder than I thought, BUT it wasn't horrible by any stretch of the imagination.  Those first few days weren't a lot of fun.  They will have you up and walking not long after surgery.  Walking was the easy part getting up and down out of bed was the tricky part.  Using a firm pillow to help brace yourself will help getting up and laying down.  I was on Rx pain meds around the clock for the first few days and then I only took them at night for the next couple of weeks.  Let the doctor know that pain meds make you nauseated so they can write you for something to help with that.  Medications like Zofran and Phenergan will help prevent nausea and eating something beforehand will help too.

The bowel prep was no fun; in fact I was still feeling the effects of that a couple days AFTER surgery.  They had me drink two bottles of Mag Citrate the evening before surgery and well let's just say I had a squeaky clean GI track when it was all said and done.  

I took off work 6 weeks, however I've been at my job for 20 years and I had 15 weeks of sick leave. It's hard to use sick leave at my job so I took it.  I could have gone back to work in about 3 weeks if I had to.  I'll admit I was kind of in a fog for about 3 weeks or so, but then one day out of the blue I left like myself again.  The soreness in my abdominal muscles was there for about 4 months.  The soreness reminded me of what it feels like after doing a lot of crunches the day before.  

Have something to do at home.  I watched old episodes of Big Bang Theory, WRKP, and played X-Box.  I'll warn you, laughing hurts. 

The lifting restrictions are a real pain in the arse.  I had to sometimes stop and remind myself not to be picking things up.  

My wife only took the first week off from work and after that I was good to go on my own.  

Sex part is kind of trickery, those sore abdominal muscles can quickly kill the mood.  It may take serval weeks before you are ready for that.

During your recovery the most important thing is to listen to your body, your body will let you know if you are overdoing it or now.

Good luck to you and if you have any questions please feel free to post them or you can message me too.  

Please keep us posted.

Jason

I'm one of those (perhaps rare?) people that narcotics make me very nauseous no matter what they give me. I've gotten so frustrated by this topic, I can't begin to tell you! Every time I've been in the hospital I go round and round with the doctors and nurses wanting me to take narcotics. They assure me we'll try this narcotic or that narcotic or we'll give you this anti-nausea drug or that anti-nausea drug. None of it has worked and I've tried them all!

I've woken up from 4 abdominal surgeries vomiting because they insisted on giving me some kind of narcotic while I was out, despite telling them beforehand that I'm very sensitive to narcotics and them giving me a wrist band saying "narcotic sensitivity".

What is up with that at the hospitals? Why are they so insistent that pain is such an awful thing? I'd take pain over nausea any day of the week. When I've had really serious pain (for example, with kidney stones), not only did I have nausea from the pain meds, but the pain meds didn't relieve my pain. So I got pain and nausea. 

Sorry for the rant. But when I saw your old too familiar "zofran or phenergan will solve that problem", it brought back such bad, bad memories. Please don't take it personally. I'm glad it works for some, though.

Best wishes,

Todd