Radical nephrectomy recovery

Skath,

I can relate although I was much older when I had my neph. I turned 59 a week before my neph. This is major abdominal surgery and is much harder on us than some of these kids on this board in their 30's and 40's. From my experience I was back to a slow normal at 6 weeks. My biggest accomplishment was going water-skiing 11 months after my neph. I expect no less from you a year from now. The next couple of months you should find it a lot easier. The first month can be described as hell. Here's to a normal recovery from one fellow oldie to another although I now have a lucky 13 years between the neph and I.

Icemantoo

first, most of us feel alone. This is a very personnal issue that most appreciate but can't feel the physical and emotional impact. Except us. So vent away. Your life depends on your doctors committment. I deal with 2 oncologists now. Both are very receptive, open and we share all discussion re: my care. Both are very approachable. I really believe they care about my life as much as I do. That is very encouraging and I believe I get the best care available. Maybe now is the time to choose a new care team. Most long term survivors here have done the same. If you aren't comfortable with your doctor then you can't commit 100% of your effort to prosper.

Pain is so varied. Some breeze through this some don't. It will improve. You've had a major insult to your body. Some are better in a month. Some take a year. So many variables. Size of tumor, location, vacularization, surgical technique, conditioning and fitness level influence your recovery. As a generalization, those who are most fit, recover with the least problems if there are no complications. Consider non-opiate pain relievers. A physical therapist can help mobilize, stretch, and soften scar tissue. Plus they can explain all your strange feelings. Worth a shot.

I know just how hard this is. Particularly if you have had no previous heaalth or physical issues. You have no baseline to relate to what is within the standard deviation of what is normal. Hang in. I can think of no one suffering the effects of their surgery for the long term.

APny said:

Kathleen, you’re just about a

Kathleen, you’re just about a month out of major surgery that assaulted nearly every organ in your body, not just your kidneys. It takes a long time for our bodies to adjust and if you’re in a lot of pain it’s senseless to suffer. Ask for medication. It is not a sign of weakness; it’s common sense not to be in pain. For one thing, walking, and walking a lot, helps in healing. But how can you do that when you’re in pain? 

Yes, everyone heals at a different time but one month is not nearly enough to recover completely from a radical nephrectomy so if you still need meds to cope with the pain then you should take them. You can take a gentle laxative and/or stool softener along with them to prevent constipation. Walking and drinking lots of water also help with constipation.

If you’re uncomfortable with your urologist, please find another, preferably one with extensive knowledge of RCC. Not being listened to and getting our questions answered is frustrating and provokes anxiety, and that’s something you don’t need on top of trying to recover from this assault to your body.

Wishing you the best and don’t get down; it will take time and it will get better. And yes, unfortunately you do feel alone with this. Others may express sympathy and concern but really, unless you went through this I don't think they truly get the emotional, psychological, and physical impact of this diagnosis. Hugs xo

I thought the same right after mine on Sept 1 of this year. 

It takes a while for your body to accept the loss of an organ. figure there was a void where everything has to reposition itself and heal. Bad sleeping, discomfortable changing of daily habits.

It gets better day by day week by week. 

I had an awesome surgeon, great cutter, good hands but his bedside manor was the worst. He was direct, to the point and informed me of the worst possible outcome. In the end though it was his skill at a cutter, not his bedside manor that did the surgery for that I am grateful.

The emotions I felt where very depressing, but they faded along with the discomfort. Mine where mostly of helplessness, an inability to control this. I settled into my new routine and its now just a new normal. I look at it this way, we adapt and overcome, we continue despite odds or feelings. At first I thought about my unfortunate situation all the time. Now I think about it mainly when I have an apointment or take my meds, sometimes when I look at my scar, but no longer constantly on my mind.

Would I wish to not have cancer or discover it earlier, damn right, but its not an option I just think of continuing the fight, living on. 

I hope all works out for you, you can always come here and vent, get some support or encouragement. I have probably taken more from these boards than I can give but thats the nature of thinks, we are better together than alone and here we are never alone.

Matt

tkmj914 said:

Hi,
My Dr, is the same way,

Hi,

My Dr, is the same way, it's annoying. He is a fabulous surgeon, very technical but lacks in bed side manner.

Can you use a binder while you are sitting for work? I used one for driving and walking and it helped a lot. Hope you start feeling better soon. I am only 5 months out but am doing better everyday, you will too!

First of all, Skathleen, I am sorry for all you are going through. I do think a "good" surgeon have people skills too, especially when it comes to cancer surgeries. But that is my point of view.

Now did you have a laproscopic/robatic type surgery? That usually has a better recovery time. I also would check with your primary or this surgeon to see if you are anemic. I remember ASKING for a lab to test for anemia. Surgeon never ordered it thinking I should be find due to a laproscopic surgery being less invasive. However, I WAS still anemic. I already started on over the counter SLOW FE as it prevents constipation. I felt so much better as a result. That is just one aspect of recovery.

I used a lumbar velcro wrap used for bad backs sold in drug stores or medical supply stores. I wrapped that around my abdomen and it helped support healing muscles/ligaments/nerves. AND I put in dry ice over the incision to help reduce the swelling and pain. That way I was taking few to no more pain meds.

Have you ever had any abdominal surgeries? I have had two laproscopic/robatic and healed up rather quickly. I remember asking to stretch my legs on my giselle exerciser and was told NO exercise of ANY kind except walking for a month. Have you been walking?

And are you eating properly? Your body needs nutrients for healing too.

Let us know how you are doing. I care how you feel, ok hon?

Sending you healing, gentle hugs,

Jan

I found sitting to be the worst position for me after my surgery. I would not have dreamed of going back to work after only 1 month. I'm very glad I had 6 weeks off to recover. For me, sitting put pressure on the worst of my incisions which was 6" long. The best positions for me were standing or laying down. While I was recovering, I spent a lot of time walking around my room watching TV, or laying on my back. But I think walking around was the best for me. I walked a lot and drank a lot of water. I also started walking outside twice a day and made each walk a little longer than the previous one. I really think this helped me recover.

When 6 weeks was up, I didn't think I was ready to go back to work. Sitting was uncomfortable probably for another 2-3 weeks. I sit all day long at my job. It helped to get up frequently for short walks.

I was very tired for probably 2-3 months.

For the first year after my surgery, I'm sorry to report, I had lots of odd health issues. My blood pressure went up for the first time in my life I had to go on blood pressure medication. I was having issues with fatigue and nausea at times. I developed vertigo over a period of a few weeks that made it hard for me to drive. I had odd pains in my lower back.

The feeling of the skin on my abdomen never returned. It feels numb. I think it will be like that since I'm 3 years out now.

It took a good year for me to feel "normal". It takes a long time for your insides to heal. The insides heal slower than the outside. You may have issues with scarring inside (adhesions they call it) for the next several months.

I recommend walking and lots and lots of water. Eat healthy. Try not to sit too much until your incisions are very healed up.

Hope this helps.

Todd

P.S. Personally, I think you should be off narcotic pain medication by 4 weeks out. It might be causing your concentration problems and it certainly will not help you feel more energetic. Switch to tylenol if at all possible and get off those soon too if you can. You should be healed up enough not to be in pain by now. If you're having bad pain 4 weeks out, your doctor needs to investigate what's the source of this.

I had a partial nephrectomy that resulted in a 12 inch incision that went from the middle of my back to almost my belly button.  I was only 49 at the time and in good shape. I had delivered three children (one weighing 9lb 8oz) naturally with no medication and was surprised that my recovery from my nephrectomy was so painful.  It took me 5 weeks before I could roll over without terrible pain. When I complained to my Doc six weeks into recovery that I was still expieriencing pain he would not prescribe anymore pain killers for me.  Give it somemore time - by 8 weeks I was back to bowling on my womens league.