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Recovering from radical nephrectomy

wendyleigh
Posts: 9
Joined: Jun 2009

I had a radical nephrectomy on May 06, 2009. I had renal cell carcinoma on my right kidney. The tumor was 7cm. My body is still not back to normal and I feel like I should be doing a little better than I am. I still find it very difficult to wear pants. I also feel like a lot of people think well she had the surgery to take out the kidney and the cancer is gone so she is fine now and it is all over with. Problem is I don't feel that way. Everything happened so fast. I am worried it will come back somewhere else. Does anybody else feel this way?

icemantoo's picture
icemantoo
Posts: 1548
Joined: Jan 2010

Garym,

Just do what I did. Stay up for the full run without falling. Ride the wake back and forth. Use 1 hand most of the time. Drop a ski at the end. It helps having done all of these things when I was much younger, like between ages 13 and 16.

Icemantoo

Kjackrascal
Posts: 6
Joined: Dec 2010

Von55, thank you so much. I appreciate the honest reply. I have done a lot of research about the surgery and it matched to a lot of what you said. My surgery is Jan. 26th and I've tried to anticipate everything but I'm realizing I can't control every outcome..which is scary on its own. I can do all the research in the world but I still can't expect and prepare for or control the unexpected. Now is just time to relax and get my rest.

As for getting the "good" kidney ready, well, I have been doing that already since I was told that it has been doing the work of both kidneys for a while. The "bad" right kidney masses have eaten thru the kidney. My lifestyle, thank goodness, is good. Don't drink coffee, sodas much, or tea. Don't smoke and never have been overweight in my life except for the past 4 years when other illnesses gave me complications which limited my ability to exercise. But I always walked and tried to work out on my Wii when this kidney allowed.

But now I experience a lot of flank throbbing and sometimes sharp pain in my rib area and just all around discomfort and pressure which is making the surgery a welcome blessing!

But all your experiences make me a stronger person because I realize there is light at the end of the tunnel and I can & will survive this. Thanks again for your helpful words and I'll keep you posted on my status as things progress.

Von55's picture
Von55
Posts: 57
Joined: Aug 2010

All the very best to you, Kjackrascal! I'll be thinking of you on January 26th and praying for your full recovery. The experience may change your life for the good in ways you never expected, and I hope that this is so!
Von xx

LoriT_13
Posts: 2
Joined: Jan 2011

I recently found this support page after trying to convince myself I was ok and didn't need support. I'm 40 yo and recently had a laprascopic radical nephrectomy (December 7, 2010) of my left kidney. It turned out to be rcc thankfully enclosed in my kidney, stage 1. Recovery has been very rough.
In some ways I feel extremely blessed that they found the cancer. I was 3 months pregnant when I was diagnosed with galstones. Through that process they found the mass in my kidney. I had my galbladder removed while pregnant, my son was born on October 8th. I had the CT scan to check the tumor the day after I delivered him.

I'm so worried that I won't be able to take care of my baby. Thankfully my mom has been able to help me since surgery. I am just now getting back to lifting him at night on my own. I pray I will continue to get better. I can't wear my normal pants yet. I'm still running around in pj's and sweats. The incision pain and swelling is extremely uncomfortable. I also tire easily.

I am struggling with the question of should I tell my older boys the tumor was cancer? I have 3 older boys (21, 18, & 15). I told them about surgery for the tumor but not the results .
Any advice is greatly appreciated. I'm very scared of the year to come and the risk of returning. Even though I'm told it's less than 5%.

God bless.

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icemantoo
Posts: 1548
Joined: Jan 2010

LonT_13,

What a bummer,having RCC Surgery right after delivering a baby. I had the same surgery back on 8.1.02 and I am doing fine. It is only natural that you feel a little tired 1 month after surgery considering the galstones and pregnancy. It may take a little longer for you to feel stronger and I have no doubt that a month from now you are going to feel much better than today. As for the recurrance rate that is something that the odds are strongly in your favor and any recurrance can be delt with at a very early stage. As far as telling your boys it is you that has to be the proper state of mind. You had RCC, you had the surgery, it was caught early and you probably will not have any further treatments or limitations for the rest of your life. Welcome to the club.

Best regards, Icemantoo

LoriT_13
Posts: 2
Joined: Jan 2011

Thank you.
I think I am going to take sometime to deal with my emotions and get stronger. Then sit down with my older boys at once and talk to them.

upreetdhaliwal
Posts: 1
Joined: Mar 2011

Dear Icemantoo,
I started following this thread after my 76yr old father was diagnosed and within days had a nephrectomy for stage 1 RCC (clear cell).
He is currently 17 days postop, and doing very well psychologically and physically. However, I have concerns about the function of the other kidney. His blood urea flucuates between 40 and 60mg% and the createnine between 1.4 and 1.9. Today they were 55 and 1.9.

I need reassuarance on
1. how soon the other kidney is up and running. My father is a hypertensive (20 odd years) and a very recently diagnosed diabetic (both conditions very well controlled), and
2. How often does renal function have to be monitored.
thanks, Upreet

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icemantoo
Posts: 1548
Joined: Jan 2010
Von55's picture
Von55
Posts: 57
Joined: Aug 2010

Hi! You must be a very special lady to cope with all of this! I can't imagine the stress of a new baby on top of your diagnosis and surgeries. I can relate to the dilemma of whether or not to tell your older kids though- mine were 29,25, 24, 22, 12 & 9 when I had my surgery last Sept (open partial, left kidney). That's a lot of years being a Mum and taking responsibility for the welfare of your kids. For me it was really hard telling them I was ill- however old they are they still see us as invincable & strong & there for them. The possibility that we may NOT be there is an unbelievable shock & like any Mum I hated to put them through it.
It's really important though to not shield your kids from life but to help them find their own inner strength to deal with realities- this was very hard for me, but it proved to be a very positive thing for them. My being vulnerable has allowed them to to be strong & supportive in ways that may not have happened otherwise- plus, it's a trust thing. Showing the kids that you trust them enough to be honest with them demonstrates that you have faith in their characters, and that's an amazing gesture for their self-esteem!
The other thing is that you're going to need support for quite a while, esp around the house, and if the kids understand the reasons for this they may be more cooperative! I've been doing a lot more than I can actually deal with and I'm still exhausted, although my husband is wonderful & very helpful. If people want to help- let them! If you can manage to put yourself & your healing first for a while you'll be so much more able to cope with everyone's agendas later.
All the best to you, and please let us know how you're doing!
Von xx

lcsmithfam
Posts: 9
Joined: Dec 2010

I just wanted everyone on this site to know how much reading all of the posts has helped me to cope and understand what I am going through. I went to the urolgist in July, 2010, for overactive bladder issues, had microscopic blood in urine - CT showed tumor in right kidney - not related to bladder. As for most of us, the kidney cancer was found when looking for something else. We are the lucky ones!!! Diagnosed on July 20, 2010 and had open radical nephrectomy on Aug 30. I was 53, 20 lbs overweight, but had been walking 30 mins most days. The surgery was rough, but I was kept comfortable. Had a WONDERFUL surgeon and my husband and family (sister!!) took excellent care of me. Spent about 4 weeks at home recovering.

I am a LUCKY one to have had a small (3.5 cm) tumor totally contained in the kidney, stage 1, clear cell, class 2. No further treatment needed. My remaining kidney is doing well!! I try to be careful - watch out for salt, eat much more healthily!!!

I used a back brace (puchased at drug store - wide elastic band with velcro) when having to walk and it helped a lot.

I went back to work as a legal asst the first part of October. I am trying to walk again each morning and I have lost that 20 lbs. I still tire very easily and I am still sore with a "stretching" or "buring" feeling near the incision on my side and my back. It doesn't go away - does anyone else experience this? It is hard to bend, reach, and i still can't sleep on my right side and the rib is sore. Just wondering how long it takes now that I am at 4+ months.....

I am encouraged by everyone who is doing so well after their ordeals. It is so inspiring to see the support offered to those who are newly facing this and the to each other who have come through it.

I am so blessed to have the diagnosis that I did. It really refocuses your life, changes priorities. I pray for each of you - for your surgery, your recovery and for your long term survival!!!

I would love to hear from others as to their experiences and how they are doing!! God Bless!!

Cheryl

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

I'm new to kidney surgery, but not new to open abdominal surgery. My tumor is small 1.3 cm on my right kidney, but the surgery is going to be the big slice open since the tumor is sitting on the main vein leading into the kidney. Doc thinks that eliminates the laproscopic option, unfortunately. I'm a teacher, and since tumor is small, we can wait until summer to remove it. Projected surgery date: June 13.

I've had an appendectomy, a hysterectomy, a hernia repair -- all open abdominal surgery. The hysterectomy was the easiest because they don't slice through muscle. The others took the traditional 6-12 week recovery time since they do slice through muscle. So, if your open surgery takes months before you are moving around and pain free, don't be surprised. Your mileage may vary, and laproscopic is reportedly easier.

For my partial or whole nephrectomy (won't know until they get there), my urologist plans to go through my back. Has anyone else had that approach?

Kjackrascal
Posts: 6
Joined: Dec 2010

No, I didn't get that approach. They went in thru my abdomen. We have similar histories..I too have had a hysterectomy, and hernia repair. Instead of appendectomy, I had to have a gall bladder removal.

With this nephrectomy, I also had a hernia repaired with mesh..all abdominally with the robot. Mine too was dragging on main artery and the Da Vinci worked just fine. I had 2 baseball-sized cysts and several ping pong balls wrapped on the artery!

Abdominally, the robot is one of the best options out there. I originally was told that I was to have an open surgery but at the last minute my surgeon said the robot would be so much better for my overall recovery that it would be a shame not to try it. I'm glad they did. I'm 5 days post-op and doing remarkably well.

Hopefully, that will be an option for you. Wish you the best.

Kjackrascal
Posts: 6
Joined: Dec 2010

Hi All,

You have been so supportive and helped me so much with my pre-surgery anxiety that I had to let you know about what has happened since my total nephrectomy on Jan. 26th. I'll try to make it as brief as I can.:-)

Surgery done by Da Vinci robot and was able to do my nephrectomy laparascopically with the exception of a 4 inch scar where the surgeon had to squeeze out the cysts. Still waiting on pathology - staying hopeful. Even if it was cancer, my doctors say that it was contained.

As for the Bosniak 3 cysts, originally I was told it was 13cm but turned out to be more than TWICE that size with multiple cysts invading the kidney. Hardly any kidney left. Don't know what caused it but it was totally the reason for the abdominal pressure,pain, and high blood pressure I had on a constant basis.

In hospital, I had complications with high white blood cell count, partial lung deflation, as well as extremely low potassium levels. Since I'm asthmatic, a respiratory therapist came in to work with me to help me breath better which helped a lot. Now, 5 days after surgery, I can take deep breaths without too much pain. I was able to get well enough to go home two days after the surgery.

Walking has been the biggest trial but also my biggest help. I'm walking more everyday but still stiffly but getting better everyday. I'm now able to sit up without pillows but still sleeping most of the day to recoup my strength. I just can't stress how much better I feel now that that monster is out.

Pain is tolerable with Vicodin. It has gone reasonably well.

Thanks to all of you who shared your words of wisdom with this "newbie" and your healthful prayers. Take care and I'll keep you posted on that pathology report. And for those recently dealing with this and surgery is to follow - listen to your medical team after surgery and don't panic. You can get through it. Each day will be better than the last.

Thanks again.

lcsmithfam
Posts: 9
Joined: Dec 2010

Glad to hear you are doing so well!!! Try using a back support (brace) that you can purchase at the drugstore. I used a 12" with velcro fastener and found it to be a big help, especially with walking!!! I had a radical open nephrectomy August 30 and am now walking on the treadmill each day for 30 mins!! You will get there - take it slow.

The biggest problem that I have had is a constant burning or a feeling of stretching along the incision, more in my back. My family doc thought it might be nerve damage and has just started me on neurotin, which may be helping some. I have heard that there is sometimes nerve damage and when you consider how big the incision is, it sure seems possible!!

I hope your pathology comes back favorable, or like your docs said, it was contained. I was one of the lucky ones in that the removal of the kidney was also the cure.

My best wishes to you and to everyone who is recovering from or waiting for surgery! Hang in there, it does get better!!

Cheryl

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

I've never heard of the Da Vinci robot! That sounds great for people who are candidates for laproscopic!

Johnnyb's picture
Johnnyb
Posts: 17
Joined: Aug 2010

That is what my Doctor used to remove my Kidney. Amazing what they can do. I was first told they were going to cut me the old fashion way. But Edwards Hospital got the Robot so they changed the surgery using hand assisted robotic ot something like that. I am feeling great and 99% back to normal. 'for all you new people just getting the bad news hang in there it is rough the first week or so after surgery but it gets better. Trust in God and he will be with you always.

Johnnyb's picture
Johnnyb
Posts: 17
Joined: Aug 2010

Hello Kjackrascal,

Well, I had my Kidney removed in August of 2010. Recovery in the first few months was hard. It has been almost one year now. I am walking sometimes 2 to 3 miles a day. At Work lifting and mving things again. Just like none of this ever happened. I praise God for all the Support that I have gotten from all of you all there. Just hang in there trust in God. That is my advice to you and any others having any type of Cancer.

harveyd6289
Posts: 2
Joined: Feb 2011

Many things affect your healing. If you had anesthesia, if it was laparascopic or incisive, transitional cells found, what was your health like prior to the cancer, etc.

Removing a kidney is not like most folks think, "well you've got two its okay". Yes, its okay but your body has suffered a systemic shock. It needs to adjust itself. Your liver will change its functioning, your other kidney will begin to work harder, maybe expand a little, many things could occur. But most of all stay centered on what you know.

Those who haven't had cancer mean well, but don't understand. You have been given a great gift. I know you probably don't think so, but you have. Tell us about it in about 10 years.

My Nephrectomy was August 1997. Huge tumor, encapsulated, but another focus was in the adrenal gland. Never spread, I no longer think about it. My pants fit better but i am still conscious of the scar. You'll get used to it all. Just be rest assured that this is not an unknown type of cancer. Urologists handle it quite frequently in their practice. You can pretty much tell from the biopsied tumor what is going on. If it was encapsulated, just keep on truckin'. If not, get the chemo and let them do what they do. That is a story I haven't had to experience.

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Johnnyb
Posts: 17
Joined: Aug 2010

Hello all,

Just wanted to tell all I had my 6 month check up and everything looks great. My Doctor tells me I have heal very well. I am back to work and doing everything I did before. My eating habits have changed tho. eating healthier now. but still sneak in a Pizza every now and then. I go back in September to have a CT Scan. I feel great. It was rough in the beginning but to all of you who have just had a Kdiney remove the most important thing I can say to you is trust God for your healing. My scar well you really can't even see it. Wonderful Doctor did a great job. I thank God for my appendix flaring up other wise who knows what would have happened. Has others have said hang in there. It gets better.

trulytall's picture
trulytall
Posts: 14
Joined: Mar 2011

thanks for the encouraging words!!
I'm happy to hear you and others are recovering so well.
I have a quick question that I'm wondering if you or someone else might be able to answer for me. I'm 8 weeks post op(left radical nephrectomy)and am still feeling weakness in my legs. I'm 58 yrs young and before surgery I was very active with hiking and jogging and always felt in pretty good shape. I guess my question to everyone is: Is weakness at this stage of recovery normal. Any feedback/support would be greatly appreciated.

Johnnyb's picture
Johnnyb
Posts: 17
Joined: Aug 2010

posted twice

Johnnyb's picture
Johnnyb
Posts: 17
Joined: Aug 2010

Wendyleigh,

To be honest most of us worry about the cancer returning. The only advise I can give you is to trust in the Lord for your healing. I lost my Step Father to cancer in April of 1997 that is what scared me the most am I going to die with this RCC Cancer? Well, after praying a lot I mean a lot...as most of us do. I knew it was going to be OK. What ever happens I could deal with it. Just had my 6 month check up and everything so far looks great. I am sure it will be for you also. I had my surgery 08/30/2010 yours was a year ago. So how are you doing now?

Katielynn
Posts: 61
Joined: Apr 2011

Hi Johnny,
I too am scheduled for a partial neph. using the DaVinci on June 2nd. It was good to read your post because it seems not many have had the surgery done with Da Vinci..My mass is 3.4 cm., hopefully, I pray to God it is encapsulated and only a partial is needed, but after my pre-op visit this Thur. I was told again that they really don't know what they're up against intil they get in there...I am in such a state of panic these last few weeks, and already I just want it done and over with...Mine was found by "accident"..had some back and pelvic/abdominal pain that my doc just couldn't nail down a cause. Had a CT this Christmas Eve and last June, both showed a CYST on my kidney..After having an ultrasound done in April, they called me back that afternoon for a CT , that's when I got the news that it was a mass. The "cysts" were 3.4 cm, so it's been the same for almost a year. Sorry to go on, but I find it so difficult to talk to my family about all of this. I try to act positive in front of them and it's getting so hard to keep up this front..I am scared to death...all I feel I can do is pray to God for a successful surgery and good outcome...Praying seems to be the only thing keeping me sane right now...I am so happy for you, you seem to be doing quite well. I pray things continue to go well for you...

Yikes123
Posts: 1
Joined: May 2011

My husband had an 11 cm mass removed along with kidney 3 weeks ago, recovery is slow as to be expected, but we never expected he would lose 30 pounds since surgery. Is this typical? Doctor called reported that there was no indication at all it has spread and he needs no further treatment. Any insights would be appreciated!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Welcome,

I'm 18 months post op (left side, 5.0 cm)I lost a little over 20 pounds but mine was a lap which is easier on you than an open procedure. Your husbands age physical condition and type of procedure would all impact his weight loss but it is to be expected. Typical treatment following a pathology report indicating that it has not spread is follow-up ct scans every six months for up to 5 years and yearly after that.

Hang in there, the worst is behind you.

Gary

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suzika
Posts: 12
Joined: Jun 2011

It is very likely that he just isn't eating enough as you don't feel like eating when you hurt. Or at least I don't. I lost weight following my nephrectomy as I just didn't eat much.

You could try and get him to drink smoothies if he doesn't feel like eating. Can he afford to lose the weight?

nudger2802
Posts: 1
Joined: Jul 2011

Hi all, glad to hear you guys are all so positive. I was diagnosed in April by a student doctor after being told by my G.P. that I just had trapped wind. After a C.T. scan I was told I had a 7cm tumor on my right kidney. Had a radical laprascopic nephrectomy on 25th June and came home 27th June. Only prob I had whilst in hospital was a slight chest infection but thats clearing up well now.

Just want to know if its normal to have muscle cramps around the surgery site if I walk round for more than a few minutes and to not be able to lie down flat or on soft surfaces without severe discomfort and pulling sensation around the surgery site.

Also my stiches are starting to itch and I am trying really hard not to scratch them, has anyone got any good ideas on how to releive this. It is worst when I have just come out of the shower. How soon will it be before I can soak in the tub without fear of causing problems to the wounds?

Nige

icemantoo's picture
icemantoo
Posts: 1548
Joined: Jan 2010

Nige,

Your aches and pains sound normal. Just part of your initiation to our little club. As for specific questions ask your doctor. Things do get better,. Day by day.

Best wishes,

Icemantoo

pianowski
Posts: 1
Joined: Oct 2011

Hello Nige,yes I can appreciate how you feel,I had the last of the staples taken out four days ago,I changed my own dressings every two days and I found patting with betadine lotion took the itch away.I still get discomfort and have to change positions but things are getting easier.I am three weeks post-op radical nephrectomy left kidney for large encapsulated cancer tumor
My problem is my stomach is very sensitive to certain foods and I still get pains before opening bowels and sometimes before urination,also have an inguinal hernia which doesnt help
Is this all just a settling down process post surgery?Any advice would be gratefully accepted.My body feels totally out of sync.
George

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Johnnyb
Posts: 17
Joined: Aug 2010

Sorry this keeps posting twice

Johnnyb's picture
Johnnyb
Posts: 17
Joined: Aug 2010

Hello all,

Well August 30th will be my 1 year mark after having my right kidney removed. I am back to normal, working doing everything I did before. My Doctor order a Chest X-ray and blood work and set my appointment for Sept. 1st for my 1 year check up. Why a chest X-ray? I though they would do a CT Scan to make sure there wasn't any cnacer retirning. Well, I am sure that everyrhing is OK.

icemantoo's picture
icemantoo
Posts: 1548
Joined: Jan 2010

Johnnyb,

The chest xray is a routine test given before and after RCC surgery to rule out metastisis of the RCC which first shows up in the lungs. Do not worry about it.

Best wishes,

Icemantoo

Johnnyb's picture
Johnnyb
Posts: 17
Joined: Aug 2010

Thanks Icemantoo, I am sure everything is going to be fine. Glad your still doing great after all these years.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I hope this superb thread stays active since it's obviously done a lot for many people.

A pretty typical case, I'm male and 69 and enjoyed lifelong perfect health so far as anyone knew. However, earlier this year I'd remarked to my Wife "I seem to run a chronic low-grade fever these days" but we didn't pursue the remark. I'd also been complaining of backache for a year or two but put this down to sitting at a computer all day long plus too much golf (coupled with not enough rowing and weight-lifting, two other favourite activities which have helped to keep my back in good shape).

Detection would doubtless have come too late for me but for the 'lucky accident' that many of us have experienced. In my case it was a wild two hour journey being tossed around in the back of a coach over winding, hilly, minor country roads with frequent small hump-backed bridges, for a golf match in the Scottish Highlands, followed by a four and a half hour round on a warm sunny day (despite our being some way further north than Moscow!). Being a redhead (not very apparent now, alas) I don't take the heat well and had got dehydrated so I was not surprised by macrohaematuria when I got back in the clubhouse but my urine continued to be bloody that night so I saw my Doc. (also a golfing pal) the next day. This led to a physical check and cytology followed by cystoscopy and later a CT scan which revealed an 8cm. mass on my right kidney. I'm scheduled to have tumour and kidney removed (but not adrenal gland or any lymph nodes - the cyst, which appears well-contained is at the bottom end) on Monday (5th Dec.).

It's already been a most interesting experience and I haven't even got to the fun part yet! My Doc. is excellent and the Consultant Urologist who is due to operate (laproscopic if all goes to plan) is an ace so I've had perfect answers to my many questions but I've got a few more that I'm hoping some of you guys might be able to help me with. Tim Berners-Lee changed the world so much - I Googled "recuperation from radical nephrectomy" and discovered this forum which I've found fascinating. The fund of goodwill here and on the other big thread "Waiting for surgery" is great. There are also useful insights by the likes of Jamie1.3cm. and garym, to name but two, and the ever-present young iceman, who's a sort of patron-saint of the survivor community, is an icon, not just for his wise words but for continuing to hang out here as a living proof that the end is probably not nigh.

I notice that "recurrence" is a source of worry for many of us. Perhaps it doesn't need to be. RCC is a "sneaky" cancer - usually asymptomatic so it quietly develops for many years before being unmasked. However, post-op. surveillance is routine and so if there is a return visit by something unwelcome it will be spotted very much earlier and a counter-attack can be launched at once. So, the recurrence can be headed off, unlike the original bolt from the blue.

Can someone please help with any of the following questions?

1. Is the incidence of renal cysts and/or RCC the same for left and right kidneys? If not, is there any clinical significance in the difference and does this impact the prognosis?

2. Since the body is asymmetric, what are the major differences in nature and ease of intervention between left and right kidney?

3. Most RCC patients are over 60 and more than half are male. Does this simply reflect the fact that renal cysts develop over many years and so are most often discovered later in life and the fact that some risk factors (notably smoking, obesity and high blood pressure) possibly have a greater prevalence in men than women?

[Reading this thread it looked to me that there is a statistical over-representation of ladies, younger patients and right kidney cysts but that's probably rubbish - the fair sex and younger people are possibly more communicative and a proper check might show I've imagined more right than left kidney problems.]

4. Has anyone been warned of "The Grapefruit Effect" (that is the dramatic potentiation of some medicines and the attenuation of others by grapefruit juice - so that the effective dosage of your meds. gets screwed up)?

5. Has anyone been cautioned against using St. John's Wort remedies before surgery (because of blood-thinning or other effects)?

6. Should alcohol consumption be kept to a modest level before surgery and if so how modest?!

7. I'm keen to get back to golf, rowing, pumping iron and distance running as soon as possible. Can any golf freaks or gym rats clue me up on how soon I could sensibly do so - without setting back my recovery?

I've been a bit used to turning up after the party's over so I'm hoping this message isn't the last one ever to appear on this thread! Anyway, I wish all the very best to the contributors to these forums and to this community generally.

T.

icemantoo's picture
icemantoo
Posts: 1548
Joined: Jan 2010

T.

I see you have done your homework and read some of my postings. I am not sure I can help with most of your questions. As to 1 and 2 I have never been aware of difference in RCC between the 2 kidneys. As for 3 my understanding is that the primary group is males between 50 and 70, but that the females are only slightly behind us ( I think they want to be behind us in this). I have no idea as to 4 and 5. As to 6 alcohol other than moderate use causes its own problems. In answering number 7 I reflect on a young mother in our group who went on a roller coaster 3 months after the surgery. That is fine, except wait a year for that. You are going to be able to get back to normal activities in 6 weeks or so, but do not push the extreme stuff for a year and until your body tells you it is ready.

Additionally you and I are no spring chickens at 69 and 68 years old. Your surgery at 69 is going to be tougher than mine when I was a youthful 59. Take that in consideration .

Best wishes,

Icemantoo

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Thanks for the swift response iceman. I'm not a heavy drinker but am easing back on my daily consumption - from two glasses of wine to one with my evening meal. Thanks also for the guidance on recovery time. No risk of my ever going anywhere near a roller coaster!! As you say, you and I aren't spring chickens but I'm in very good health - obvious excepted - and have a BMI of 23.1 which should help, though I'm a bit concerned at the amount of weight some people lose since I couldn't afford to shed twenty pounds. Is weight loss likely to be significant? I never feel the cold normally but might that change? I have been sneezing a lot in the last year or two and am a bit concerned that this (and coughing) could be a problem in early phase recovery - is this daft?

The Grapefruit Effect is real and was discovered by chance (in the US) some 20 years ago. This short item gives an excellent sketch:

http://www.eurekalert.org/pub_releases/2008-08/acs-nrt072308.php

I don't want to start a hare (or a scare) but it's a fact that may be of interest to some patients.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi T,

We are alike in many ways. I'm a bit younger at 60, 2 years post op left side, I share your passion for golf and weight lifting, but I walk instead of run as it is easier on the knees. I also share your views on recurrence, refusing to worry about that which I cannot control and believing that surveillance will provide early enough detection to go back on the attack. Because I have only one kidney I watch my protein and sodium intake and monitor by blood pressure, but life is pretty "normal ' other than that.

I have no insight or information on no. 1, but I'm sure that if there were anything significant someone would have studied it. As for no. 2, the surgery on the right is a bit more difficult than the left, mainly because of the proximity of the liver and the shortness of the renal artery. I think no. 3 is spot on and as for the over-representation of ladies here, I think women in general are more comfortable sharing than us guys. Never heard of the grapefruit effect or problems with St, John's Wort. I've been told by both of my docs that alcohol is fine in moderation which they described as 2 drinks per day max., I didn't drink before surgery as I was recovering from injuries due to a motorcycle accident that led to the discovery of my rcc. No. 7, all I can say is listen to your body and recognize your need for R&R, I started walking the day after surgery, but to my standards not theirs. Their idea of a "walk" was a short distance down the hall and back, I did 4 laps (about 1/2 mile), surrounded by nurses sure I would collapse, without a problem and the day before I went home I walked the halls for 4 miles pushing my I.V. cart all the way, but I regularly walk in excess of 100 miles per month so I was in tune with my limitations. I started lifting weights (lightly) 2 weeks after I got home and could have played golf at about 4 to 6 weeks except it was the dead of winter here so I had to wait for spring. Your age will play a part, but it sounds like you take pretty good care of yourself and I think because of that your recovery will be shorter than average.

It won't be long before this is all behind you and things will get back to "normal", good luck and God speed.

Keep us posted,

Gary

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Texas_wedge
Posts: 2807
Joined: Nov 2011

Gary,

Hi. Thanks for the good advice. I've admired the philosophic approach you've advocated on this and other threads lately - look for the positive in any situation. (An ante-natal advisor encouraged her class:- keep walking while pregnant and best on soft ground, e.g. grass and suggested that the husbands present should join their wives. A thoughtful husband asked if it would be ok for his wife to carry a golf bag while they walked.)

I've started monitoring my blood pressure which has been rather high recently. The relationship between kidney disease and BP seems to be very complex so I'll study my patterns as best I can. What have you found out about your own? You're plainly a thinker so you might find the link I sent (above) to iceman on the Grapefruit Effect interesting.

I'm greatly cheered by your info. on your recovery. I've got an ergometer, an elliptical trainer, a Concept2 D rowing machine, a Nautilus Smith machine and free weights at home, though I've not used them much lately. I'll try to remember that I'm rather older than you are but, that said, I'm encouraged by your experience of exercise in your recovery. Mustn't be too cavalier though and will heed the advice to listen to what my body tells me.

I've just got home after finishing with a tap-in 4 on the 18th at Carnoustie. I had planned on another couple of rounds pre-op but it was bitter on the links today and snow is not far away so I might just quit while I'm ahead (need to finish gutter repairs and dismantle a scaffold tower after painting our exterior woodwork anyway - both things that, like bringing in logs, I soon won't be able to do for a while!). So I guess I'll have to pull out of our Winter League for the next couple of months :-(

Thanks again to you and to iceman and I'll keep you posted - this forum is one of the very best resources I've discovered.

T.

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garym
Posts: 1651
Joined: Nov 2009

T,

What would Jean VandeVelde have given for your score in 99??? You have many great and historic courses to choose from and I envy you. Here in Michigan there are many fine courses as well, but they lack the history which is such a big part of the game to me. I did get to play a few courses in Ireland several years ago and it was a trip I will never forget.

I'm not much of a grapefruit lover, at least not without a little vodka, but I'll check out the link.

I have family history of high blood pressure, heart disease, and diabetes. I was overweight and taking low dose medications for both BP and cholesterol when I finally made up my mind to do something about it. I started eating right and walking, I dropped 50 pounds and no longer needed either med. Prior to my nephrectomy my BP was averaging a healthy 118/76, since surgery it has been around 130/80 which my doc says is as expected for a person with only one kidney and not to worry, I monitor it weekly anyway.

I believe those of us that are accustomed to regular regular exercise have an easier time with recovery because we have a better feel for needing rest vs. when it is okay to push it a bit, I think you will find this to be true. You are wise to spend your pre-op time finishing up the things you will not feel like doing post-op, if you don't you'll wind up paying a price for trying to do them later. You have great spirit and attitude on your side, that is half the battle.

Best wishes,

Gary

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Texas_wedge
Posts: 2807
Joined: Nov 2011

Thanks Gary. Have just received admission details for Monday.

Well done for having taken control of your life-style and maintained it so well. The changes you made sure paid off and the results are an object lesson for others. I'm a little concerned about my own BP and will monitor it frequently for a while to try to get a dependable overall picture. I've maintained the same bodyweight, within a few pounds, for the past 50+ years and I'm a non-smoker. I shall, however, trim back my modest alcohol intake a little and reduce my excessive consumption of espresso. The latter change may well make quite a difference to my BP and I'll talk to my Doc. about it also.

I'm not golfing again for now. Your comments are on the money. A course I play a bit is Montrose links which is the 5th oldest course in the world. I hope all goes on well for our golfing friend foxhd - another of the great people one comes across on these inspiring forums.
I have no doubt that the outlook for contributors to these threads is a lot better than it would have been if they hadn't discovered this invaluable resource.

Kind regards,

T.

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garym
Posts: 1651
Joined: Nov 2009

T,

I'll be away from my computer for the weekend but I wanted to wish you well for Monday. You sound to be in great shape both mentally and physically so I expect to hear that you have played holes that were tougher than this when you return. When the weather allows and you get back on the links this this experience should be good for a couple extra strokes from your mates, but don't expect their generosity to last very long.

Aces to you,

Gary

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Thanks for the good wishes Gary. It's reassuring to know Statesside golfers are like UK golfers - I give it about three rounds before someone says 'My sprained wrist trumps the fact that you used to have cancer'.

I hope to be able to confirm later next week that optimism on these forums has been vindicated yet again.

All the best,

T.

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foxhd
Posts: 1910
Joined: Oct 2011

Texas-Wedge, I was golfing in a month and a half. I have speeded up our group because every time play slows down as someone looks for a lost ball, I tell them that my life is too short to waste time looking for it. What can they say? Friend says, "Playing the cancer card,huh?" We laugh and play on.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

What an old fox! Thanks for the tip - I hadn't thought of milking it that way(and anything to combat slow play!!). It just goes to show you should always be ready to learn from fellow golfers.
A month and a half from now will probably see us under snow here but if not I hope I've recovered as well as you and Garym and can be contemplating a careful return to the game.
T.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

One of my best golf buddies said "Damn, now I'll have to cross you off my list of potential donors if I ever need a kidney", what a guy!!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Got home this evening and now a legitimate member of the Club - fully qualified!

foxhd's picture
foxhd
Posts: 1910
Joined: Oct 2011

now just a gimme. Welcome home!

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icemantoo
Posts: 1548
Joined: Jan 2010

Try for a Mulligan.

Icemantoo

garym's picture
garym
Posts: 1651
Joined: Nov 2009

T,

"Normal" is just a nine iron away. Lay low for a couple weeks, you'll be your ol'self before you know it.

Good to hear from you,

Gary

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

To the 2 Gar(r)y s from Michigan: thank you for your messages which are much appreciated.

Have just been on the 'phone with my regular golfing partner who knocked a ball round by himself at Carnoustie today. Weather was perfect but fairly soon I won't be missing it too much since we've had a bit of snow nearby lately and more is on its way. I guess most of Michigan can get fairly cold and at a latitude of 57 here we also experience cold weather, especially when the wind blows and in the Cairngorms just north of us there were winds of over 165 m.p.h. a couple of days ago.

I went in before dawn Monday a week ago and was in for 6 nights. I was first on the theatre list for the day. My Wife and Daughter took me in for 7:30 a.m. for a laparoscopic that was expected to take around 2 hours. So, after waiting for a long while with no feedback, my Wife eventually asked around 3 p.m. for news of how the op. had gone and was told I was still in theatre which, as you can imagine, was pretty anxiety-provoking for them (I wasn't much bothered myself, still being happily unconscious at the time!)

Being the right kidney it was a bit trickier due to proximity of liver etc. Added to this, there was some degree of small bowel adhesion and I have a long narrow torso, making it more awkward. The consequence was that they had to switch to open surgery and go in higher than expected in order to safely get the whole tumour and kidney out intact. This involved an incision about 11" wide with a lot off cutting of muscle - internal and external obliques, rectus and intercostals. They hadn't anticipated much likelihood of a transfusion so I was glad I had repeatedly mentioned my being a universal donor. As I understand it (I guess I'll get a full account of all the gore details later) I got more than a litre of blood and a couple of FFPs. Later on I intend to research the implications of such transfusions but if anyone here can enlighten me I'll be grateful for the info.

For a few days I had difficulty getting anything much beyond clear soup down. However, whereas I had been anxious about the possibility of losing good weight, to my amazement I find myself 10 pounds heavier now. I have oedema manifesting in puffy feet and ankles (which are normally conspicuously bony and vascular) so I'm guessing that the surplus weight is due to water retention that will dissipate naturally before too long. I hope so.

I was grateful for iceman's frequent repetition of the fact that the first couple of days are likely to be rough. In my case it was more like 3 or 4 days. I'm not accustomed to thinking of myself as a wimp so it came hard to find myself asking for extra pain relief. I'm on max. dosage of slow-release morphine which I hope can be tapered off quickly now, since I'm more comfortable at home. I am also needing, for the first time in my life, to take a laxative to combat the constipating effect of the morphine. So, that's two meds that I won't be needing in the near future.

The big wound was looking angry and after due deliberation it was decided I should have a course of antibiotics in case it was an infection. However, it's continued to heal up a treat and the surmise now is that the appearance was due to the considerable bruising consequent upon the massive insult to the musculature, rather than to any infection. It was a conservative decision that made sense and I'm happy to complete the antibiotics course. The pain control of choice is paracetamol which I presume I'll be on for a while yet. It seems aspirin and ibuprofen are no nos.

I was on oxygen for a day or two post-op. and I guess this is usual after major surgery and anaesthesia. I don't yet know how long I spent in the High Dependency Unit but my oxygen level was returned to normal and I was able to lose the oxygen line after I started getting reasonably mobile. The lead anaesthetist said I was in very good condition for a near 70-year old, or, in fact, for someone of any age, and this would be helpful for recovery. The toughest thing for me was dread of coughing because of the considerable pain it would entail while knowing that I needed to breathe deeply to combat congestion on my lungs. I managed to get walking well and walked a mile or two around the various bays of my ward in our colossal teaching hospital, in the hours before my Wife showed up to take me home. At home today I've moved around the house constantly but it's not the same as walking in the hospital. Unfortunately all I can do here is walk around my garden or on the golf courses where we live which means being on wet or frosty grass and hilly terrain - a bit too dangerous to be an attractive proposition. Might be able to get a friend to drive me to a park where I could walk on safe hard surfaces for a bit.

I checked my BP this morning and it read 110/78 with which I was delighted and pulse was 70. My body temperature has been stable and all in all I'm feeling fine. During the day my BP has varied quite a lot with the systolic sometimes on the high side. This seems to be inversely related to my pulse rate which drops to around 60 when my systolic is up around 150-160. Can anyone throw any light on the patterns of relationship between BP (esp. systolic) and pulse rate? Well, I've just realised I've been up for more than 17 hours which is probably more than is sensible so I'll say goodnight.

T.

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