Recovering from radical nephrectomy

1568101113

Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    garym said:

    golf...
    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!!

    Op. on Monday
    Got home this evening and now a legitimate member of the Club - fully qualified!
  • foxhd
    foxhd Member Posts: 3,181 Member

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

    t-w
    now just a gimme. Welcome home!
  • icemantoo
    icemantoo Member Posts: 3,361 Member
    foxhd said:

    t-w
    now just a gimme. Welcome home!

    Be a Leader
    Try for a Mulligan.


    Icemantoo
  • garym
    garym Member Posts: 1,647
    icemantoo said:

    Be a Leader
    Try for a Mulligan.


    Icemantoo

    Welcome back!!!
    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
    Texas_wedge Member Posts: 2,798
    foxhd said:

    t-w
    now just a gimme. Welcome home!

    Welcome home
    Thanks foxhd and I 'm hoping you're right in saying it's now just a gimme.

    I've an amusing story to tell on the golfing front but it will keep for another post, later, because I've been surfing and reading for the last six or seven hours and am getting a little sleepy. I guess I'll go and lie down for a bit before I have lunch. These forums are so helpful - I remember many contributors saying they slept/snoozed a lot in the early stages of recovery. I found myself feeling sleepy a couple of hours ago and was a bit worried (because I had a great night's sleep last night, on my first night at home). Then I remembered that sleepiness is to be expected so it's nothing to get concerned about. So, bye bye for now. T.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    icemantoo said:

    Be a Leader
    Try for a Mulligan.


    Icemantoo

    "Be a leader" & "Welcome back!!!"
    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.
  • garym
    garym Member Posts: 1,647

    "Be a leader" & "Welcome back!!!"
    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.

    OUCH!!!
    T,

    That is quite a story, its a good thing you were is such good physical condition going into it or the recovery would be much worse. Don't fret too much about all the nuisance things like meds and body condition, for now just do whatever is necessary, get plenty of rest, hydrate, and let nature take its course. We have some snow on the ground here, but it is supposed to rain tomorrow, its probably a good thing that snow is moving in over there, you will need a little extra healing time before swinging the sticks, you should be able to work on your short game pretty soon though.

    Hang in there,

    Gary
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    garym said:

    OUCH!!!
    T,

    That is quite a story, its a good thing you were is such good physical condition going into it or the recovery would be much worse. Don't fret too much about all the nuisance things like meds and body condition, for now just do whatever is necessary, get plenty of rest, hydrate, and let nature take its course. We have some snow on the ground here, but it is supposed to rain tomorrow, its probably a good thing that snow is moving in over there, you will need a little extra healing time before swinging the sticks, you should be able to work on your short game pretty soon though.

    Hang in there,

    Gary

    Morphine rash
    Gary, thanks for your continuing good advice. I agree that prior condition seems to have a marked effect on recovery. Yesterday i took a stroll of a mile or so with my Wife around the golf course we live on. It's around -2C. but recent gales have blown out and so it's crisp but pleasant here - we've dodged the snow so far. I'm keeping hydrated but don't seem to be tired, other than finding myself getting a bit sleepy at times while reading. I'm sleeping pretty well for 6 or so hours (broken by the inevitable dash in the middle of the night) and most of the other 17 or 18 hours I'm spending writing at my Mac and doing research on the Web. On other threads I see advice that the second week of recovery is when one can get tempted to push oneself too hard so I'm going to be careful.

    I'm not thinking about any short game work yet but plan to try some very slow, gentle mirror drills in a while.

    Right now I'm bothered by a solid rash which started in my groin and has steadily spread up to my neck and is now extending down to approach the back of my knees. I'm still on sizeable doses of morphine with consequent constipation. I speculated that the rash might be due to the laxative I was put on in the hospital and my GP has changed that but the rash continues. After one dose of the new laxative I think I won't need any more of that sort of medication and my doctor's judgment is that the rash is most likely due not to the laxative but to the morphine.

    The itching is not too troublesome and I don't fancy giving up the morphine in a rush! I'm hoping that the allergic reaction doesn't develop into worse symptoms.

    I'd be grateful if you or anyone else who happens to read this could tell me if they've had this problem and if so what seemed the best way of tackling it.
  • garym
    garym Member Posts: 1,647

    Morphine rash
    Gary, thanks for your continuing good advice. I agree that prior condition seems to have a marked effect on recovery. Yesterday i took a stroll of a mile or so with my Wife around the golf course we live on. It's around -2C. but recent gales have blown out and so it's crisp but pleasant here - we've dodged the snow so far. I'm keeping hydrated but don't seem to be tired, other than finding myself getting a bit sleepy at times while reading. I'm sleeping pretty well for 6 or so hours (broken by the inevitable dash in the middle of the night) and most of the other 17 or 18 hours I'm spending writing at my Mac and doing research on the Web. On other threads I see advice that the second week of recovery is when one can get tempted to push oneself too hard so I'm going to be careful.

    I'm not thinking about any short game work yet but plan to try some very slow, gentle mirror drills in a while.

    Right now I'm bothered by a solid rash which started in my groin and has steadily spread up to my neck and is now extending down to approach the back of my knees. I'm still on sizeable doses of morphine with consequent constipation. I speculated that the rash might be due to the laxative I was put on in the hospital and my GP has changed that but the rash continues. After one dose of the new laxative I think I won't need any more of that sort of medication and my doctor's judgment is that the rash is most likely due not to the laxative but to the morphine.

    The itching is not too troublesome and I don't fancy giving up the morphine in a rush! I'm hoping that the allergic reaction doesn't develop into worse symptoms.

    I'd be grateful if you or anyone else who happens to read this could tell me if they've had this problem and if so what seemed the best way of tackling it.

    Morphine...
    T,

    It seems like they should be able to give you something for the rash, perhaps benedryl, you shouldn't be left to suffer needlessly, ask the doc.

    Other than constipation I had no physical issues with morphine, but I hated what it did to my brain. My first experience was in the icu after my accident where the push of a button administered morphine for pain. While it controlled the pain nicely, it also turned me into a blithering fool unable to answer even simple questions intelligently, although I thought I was pretty smart (my wife straightened me out on that). I expressed my desire to stop using morphine asap to the nurses, it made their job more difficult because they had to delivery pills every four hours, but they obliged.

    When I checked in for my kidney removal, a different hospital, I told them I preferred not to use morphine and they agreed to disconnect it as soon as I was able to tolerate oral pain meds without any issues, I never had the nausea that many of our club members suffered with and was off the morphine quickly. I then had another surgery five days later to repair some of the injuries from my accident and they used an epidural (spinal block) which numbed my left chest completely for that, much better. I continued to take oral meds for only a short time once I got home.

    Not sure if this helps,

    Gary
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    garym said:

    Morphine...
    T,

    It seems like they should be able to give you something for the rash, perhaps benedryl, you shouldn't be left to suffer needlessly, ask the doc.

    Other than constipation I had no physical issues with morphine, but I hated what it did to my brain. My first experience was in the icu after my accident where the push of a button administered morphine for pain. While it controlled the pain nicely, it also turned me into a blithering fool unable to answer even simple questions intelligently, although I thought I was pretty smart (my wife straightened me out on that). I expressed my desire to stop using morphine asap to the nurses, it made their job more difficult because they had to delivery pills every four hours, but they obliged.

    When I checked in for my kidney removal, a different hospital, I told them I preferred not to use morphine and they agreed to disconnect it as soon as I was able to tolerate oral pain meds without any issues, I never had the nausea that many of our club members suffered with and was off the morphine quickly. I then had another surgery five days later to repair some of the injuries from my accident and they used an epidural (spinal block) which numbed my left chest completely for that, much better. I continued to take oral meds for only a short time once I got home.

    Not sure if this helps,

    Gary

    Morphine
    Oh boy Gary, have you been through it!

    Whatever my rash is due to, it has stopped getting worse and the allergic reaction doesn't seem to be throwing up any other nasties. I had PCA (I gather this is patient controlled analgesia) early on - must ask Wife and Daughter if I was raving like you. Rash aside, I've been lucky in tolerating the morphine.

    Maybe it is affecting my thinking though - I just went out for a stroll in the twilight but turned back after a few hundred yards realising I was walking on black ice and not wanting to risk a fall in the dark with no-one around. As I got close to our gate I saw a branch from one of our trees had fallen in the lane outside. Ordinarily I throw such branches back, over our seven foot high stone wall, back into our garden. I took two steps in that direction before I said to myself 'What on earth are you thinking about?!!' I don't think I'm off my head. I just think I'm feeling so damned good that I'm at risk of forgetting my condition. Maybe I should stick a post-it note on myself or hang a notice round my neck, saying 'Do walk; don't lift!'.

    Your info. on epidurals is interesting - they seem to be gaining more and more favour. Can you remember the drug they gave you in your epidural? On the topic of drugs, I hope foxhd does well on the MDX 1106 trial he's on - he sounds like a great guy.

    Thanks again,

    T.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Welcome home
    Thanks foxhd and I 'm hoping you're right in saying it's now just a gimme.

    I've an amusing story to tell on the golfing front but it will keep for another post, later, because I've been surfing and reading for the last six or seven hours and am getting a little sleepy. I guess I'll go and lie down for a bit before I have lunch. These forums are so helpful - I remember many contributors saying they slept/snoozed a lot in the early stages of recovery. I found myself feeling sleepy a couple of hours ago and was a bit worried (because I had a great night's sleep last night, on my first night at home). Then I remembered that sleepiness is to be expected so it's nothing to get concerned about. So, bye bye for now. T.

    This bit of the forum seems to be where Lone Kidney Club survivors narrate their recoveries and compare notes. This often helps new members even though we're all different. Over the years I've been told more than once that I'm 'not normal' but there might be another oddball who can learn something useful from what I've experienced.

    I somehow managed to get my above post of Dec. 12th out of synch. That was my first day home and I'm now into my 17th day from the op. and have been home for 10 and a bit days. So, here's an update from my postings on 16th Dec.

    My patterns seem very different from the norm. I wonder whether this has anything to do with the pain control medication. I'm pretty fit but also 69 so a lengthy op. that had to be switched from lap. to open, with substantial transfusions and extensive muscle cutting, was likely to call for considerable pain control. I'm still on 60mg. of morphine daily and will have to taper this sensibly and not too fast. I was also on max. paracetamol daily but kicked that a while ago, wanting to ensure I preserve enough of the pain warning to alert me to any risk of overdoing things. I finished an antibiotic course and have only needed two doses of a laxative to get back to normal bowel function, despite the morphine. So, until I see my doc. on Wednesday, I'm just on the morphine, with an occasional single paracetamol capsule which seems to dampen the allergic reaction I've had (presumably to the morphine).

    On that regimen, I've not needed any rest or any sleep beyond my usual. I felt whacked once and slept for an hour during the day but woke up disoriented and unsure that I'd gained much benefit. I'm having about 6 to 7 hours of broken sleep at night and for the rest of the time I'm up and about, walking and shopping (Wife does the lifting) but mostly at a computer. Normally I watch a lot of TV and play a lot of golf. For now, no golf and I'm watching almost no TV, except for the odd news report. I'm spending practically all my time reading on the Web, or books and doing a lot of writing.

    With the pain relief I'm on, I have no problem getting in and out of bed and in and out of the bath easily. I've continued with our long-established practice of giving my Wife her breakfast in bed but she now shares the job of catering for other meals (whereas for the last 30 odd years I did all the cooking).

    Before I left hospital I expressed concern about stairs because I was going to be alone for most of the first week home and our house is built into a slope with the result that every entrance involves steps/stairs. [Our main door is at what we call 'first floor' level (I just remembered that in the US you call it second floor) and is up some steps. The same goes for two other doors at that level and the fourth involves a long outside stair. At the lower, 'ground' floor level (in USA 'first' floor) we have a single door and also patio doors with no steps, but to reach the rooms we inhabit all the time we then climb a fairly steep inside stair.] Any way you cut it I might have a problem. So, it was decided to do a trial run. A nurse walked with me to stairs between the floors of our massive teaching hospital. To our great relief I was able to trot up and down the stairs comfortably without needing the hand rail so that dragon was slain and they decided i could go home.

    We have a lovely antique brass bed which has proved a godsend. I've been able to sleep in it since the first night home, grabbing the top rail and lowering/raising myself and the vertical rails to drag myself horizontally to reach the top rail. I think trying to get as close to normal, without forcing it, has been therapeutic and I now have no bother. I can also sleep on my back or either side without undue discomfort.

    My main problem has been the allergic (?) pruritis. A rash steadily progressed from my groin to my neck and down to my knees, then eventually to my face and ears and down to my feet. I experimented with treatments and it's now not so bad but I have numerous little lesions that I'll have to avoid getting infected - my skin began to flake off to the extent that my face looks like bad sunburn with showers of flakes coming off. However, if that's all the price I have to pay for the morphine relief I'm happy to take the deal!

    My bodyweight has now stabilised. I'm eating well but have lost almost a stone since I got home 10 days or so ago. Abdominal bloating is away, swollen feet and ankles are back to their bony selves and I'm about 2 kilos down on the weight I've maintained for decades. This answers a question my Wife and Daughter (both of an academic cast of mind) were intrigued by - what would an 8cm tumour plus a kidney weigh? I have to assume I may have lost a little muscle mass, but probably not much, so maybe what was removed weighed around 3 or 4 pounds. This may be naive but I won't care about being thought eccentric if I ask the surgeon this on my first checkup which will be in about 4 weeks time, I think.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    This bit of the forum seems to be where Lone Kidney Club survivors narrate their recoveries and compare notes. This often helps new members even though we're all different. Over the years I've been told more than once that I'm 'not normal' but there might be another oddball who can learn something useful from what I've experienced.

    I somehow managed to get my above post of Dec. 12th out of synch. That was my first day home and I'm now into my 17th day from the op. and have been home for 10 and a bit days. So, here's an update from my postings on 16th Dec.

    My patterns seem very different from the norm. I wonder whether this has anything to do with the pain control medication. I'm pretty fit but also 69 so a lengthy op. that had to be switched from lap. to open, with substantial transfusions and extensive muscle cutting, was likely to call for considerable pain control. I'm still on 60mg. of morphine daily and will have to taper this sensibly and not too fast. I was also on max. paracetamol daily but kicked that a while ago, wanting to ensure I preserve enough of the pain warning to alert me to any risk of overdoing things. I finished an antibiotic course and have only needed two doses of a laxative to get back to normal bowel function, despite the morphine. So, until I see my doc. on Wednesday, I'm just on the morphine, with an occasional single paracetamol capsule which seems to dampen the allergic reaction I've had (presumably to the morphine).

    On that regimen, I've not needed any rest or any sleep beyond my usual. I felt whacked once and slept for an hour during the day but woke up disoriented and unsure that I'd gained much benefit. I'm having about 6 to 7 hours of broken sleep at night and for the rest of the time I'm up and about, walking and shopping (Wife does the lifting) but mostly at a computer. Normally I watch a lot of TV and play a lot of golf. For now, no golf and I'm watching almost no TV, except for the odd news report. I'm spending practically all my time reading on the Web, or books and doing a lot of writing.

    With the pain relief I'm on, I have no problem getting in and out of bed and in and out of the bath easily. I've continued with our long-established practice of giving my Wife her breakfast in bed but she now shares the job of catering for other meals (whereas for the last 30 odd years I did all the cooking).

    Before I left hospital I expressed concern about stairs because I was going to be alone for most of the first week home and our house is built into a slope with the result that every entrance involves steps/stairs. [Our main door is at what we call 'first floor' level (I just remembered that in the US you call it second floor) and is up some steps. The same goes for two other doors at that level and the fourth involves a long outside stair. At the lower, 'ground' floor level (in USA 'first' floor) we have a single door and also patio doors with no steps, but to reach the rooms we inhabit all the time we then climb a fairly steep inside stair.] Any way you cut it I might have a problem. So, it was decided to do a trial run. A nurse walked with me to stairs between the floors of our massive teaching hospital. To our great relief I was able to trot up and down the stairs comfortably without needing the hand rail so that dragon was slain and they decided i could go home.

    We have a lovely antique brass bed which has proved a godsend. I've been able to sleep in it since the first night home, grabbing the top rail and lowering/raising myself and the vertical rails to drag myself horizontally to reach the top rail. I think trying to get as close to normal, without forcing it, has been therapeutic and I now have no bother. I can also sleep on my back or either side without undue discomfort.

    My main problem has been the allergic (?) pruritis. A rash steadily progressed from my groin to my neck and down to my knees, then eventually to my face and ears and down to my feet. I experimented with treatments and it's now not so bad but I have numerous little lesions that I'll have to avoid getting infected - my skin began to flake off to the extent that my face looks like bad sunburn with showers of flakes coming off. However, if that's all the price I have to pay for the morphine relief I'm happy to take the deal!

    My bodyweight has now stabilised. I'm eating well but have lost almost a stone since I got home 10 days or so ago. Abdominal bloating is away, swollen feet and ankles are back to their bony selves and I'm about 2 kilos down on the weight I've maintained for decades. This answers a question my Wife and Daughter (both of an academic cast of mind) were intrigued by - what would an 8cm tumour plus a kidney weigh? I have to assume I may have lost a little muscle mass, but probably not much, so maybe what was removed weighed around 3 or 4 pounds. This may be naive but I won't care about being thought eccentric if I ask the surgeon this on my first checkup which will be in about 4 weeks time, I think.

    Water intake
    We're supposed to drink lots of water during recovery. I'm not sure I'm drinking enough but how can I be sure? Has anyone had experience of drinking too little and if so can you tell me what to watch out for and what goes wrong when you get dehydrated? With cold weather and not much exercise I don't feel like drinking water and so I just tend to forget to.

    T.
  • MikeK703
    MikeK703 Member Posts: 235

    Water intake
    We're supposed to drink lots of water during recovery. I'm not sure I'm drinking enough but how can I be sure? Has anyone had experience of drinking too little and if so can you tell me what to watch out for and what goes wrong when you get dehydrated? With cold weather and not much exercise I don't feel like drinking water and so I just tend to forget to.

    T.

    Dehydration
    Hi Tex,
    In addition to drinking plenty of water during recovery, you should continue to do so from now on ... forever! It's bad for the kidney(s) to become dehyhdrated. Your creatinine level can rise just from being dehydrated. I know when I have become mildly dehydrated when I start feeling thirsty. If you go too long without drinking water you will probably notice other more serious symptoms such as increased heart rate or fatigue. I used to be a big cola drinker because I disliked water so much, so I got accustomed to carbonated drinks. I've been drinking seltzer water instead of regular water. But I've read that this might not be very good for me either. So I guess I need to give that up too! There have been a lot of lifestyle changes in the past 16 months and giving up soft drinks and now seltzer and cutting back on pizza are some of the more challenging ones for me.
    regards,
    Mike
  • garym
    garym Member Posts: 1,647
    MikeK703 said:

    Dehydration
    Hi Tex,
    In addition to drinking plenty of water during recovery, you should continue to do so from now on ... forever! It's bad for the kidney(s) to become dehyhdrated. Your creatinine level can rise just from being dehydrated. I know when I have become mildly dehydrated when I start feeling thirsty. If you go too long without drinking water you will probably notice other more serious symptoms such as increased heart rate or fatigue. I used to be a big cola drinker because I disliked water so much, so I got accustomed to carbonated drinks. I've been drinking seltzer water instead of regular water. But I've read that this might not be very good for me either. So I guess I need to give that up too! There have been a lot of lifestyle changes in the past 16 months and giving up soft drinks and now seltzer and cutting back on pizza are some of the more challenging ones for me.
    regards,
    Mike

    Dehydration...
    Dehydration can be hard to detect until or unless it becomes severe. In addition to what Mike has said it can also affect your blood pressure (low) and ability to make rational decisions. Symptoms may include sticky (cotton) mouth, low or no urine output, dry eyes (lack of tears) and disorientation in some cases. It is absolutely amazing how much water you need to consume under extreme conditions to avoid dehydration.

    My urologist told me the best thing I could do for my remaining kidney was drink plenty of water. His rule of thumb was drink at least 1/2 gallon (roughly 2 liters) of water daily in addition to any other liquids I consumed and not to wait until I was thirsty. Drinking smaller amounts like 8 ounces at a time throughout the day is better than larger amounts all at once and to always drink extra during exercise. I've always been a water drinker so it hasn't been much trouble for me, but I know it can be for some.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    MikeK703 said:

    Dehydration
    Hi Tex,
    In addition to drinking plenty of water during recovery, you should continue to do so from now on ... forever! It's bad for the kidney(s) to become dehyhdrated. Your creatinine level can rise just from being dehydrated. I know when I have become mildly dehydrated when I start feeling thirsty. If you go too long without drinking water you will probably notice other more serious symptoms such as increased heart rate or fatigue. I used to be a big cola drinker because I disliked water so much, so I got accustomed to carbonated drinks. I've been drinking seltzer water instead of regular water. But I've read that this might not be very good for me either. So I guess I need to give that up too! There have been a lot of lifestyle changes in the past 16 months and giving up soft drinks and now seltzer and cutting back on pizza are some of the more challenging ones for me.
    regards,
    Mike

    Dehydration
    Thanks Mike. I'm going to try to develop a routine for ensuring I get enough water. I used to guzzle huge amounts as a kid but that was before becoming a tea and rocket fuel addict! You've done yourself a real good turn kicking the cola habit but I'm sorry your style is being so cramped on soft drinks. I'm drinking more tea and fruit smoothies and managing to limit the coffee somewhat. I normally enjoy a couple of glasses of wine at dinner and haven't been able to touch alcohol for more than 3 weeks now - can't wait to get off the morphine. When I do I'm planning to resume the red wine, but only one glass a day.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    garym said:

    Dehydration...
    Dehydration can be hard to detect until or unless it becomes severe. In addition to what Mike has said it can also affect your blood pressure (low) and ability to make rational decisions. Symptoms may include sticky (cotton) mouth, low or no urine output, dry eyes (lack of tears) and disorientation in some cases. It is absolutely amazing how much water you need to consume under extreme conditions to avoid dehydration.

    My urologist told me the best thing I could do for my remaining kidney was drink plenty of water. His rule of thumb was drink at least 1/2 gallon (roughly 2 liters) of water daily in addition to any other liquids I consumed and not to wait until I was thirsty. Drinking smaller amounts like 8 ounces at a time throughout the day is better than larger amounts all at once and to always drink extra during exercise. I've always been a water drinker so it hasn't been much trouble for me, but I know it can be for some.

    Dehydration
    That's very valuable advice Gary. I often struggle to eat and have got out of the habit of drinking water. I like temperatures of about 10-15 C. and start to get anxious when we get to 20 C. I avoid the sun and so there's not much likelihood of my experiencing extreme conditions and getting severely dehydrated. However, I'd forgotten that even moderate dehydration impairs cognitive functioning. I remember having great difficulty sitting exams on sweltering high summer days so I'm grateful that you've reminded me. I definitely find that my golf performance is better when I sip water all the way round.

    I won't be seeing my own urologist for another 3 weeks, at my first post-op. assessment, so meantime I'll remember your urologist's helpful advice.
  • jhsu
    jhsu Member Posts: 80

    Dehydration
    Thanks Mike. I'm going to try to develop a routine for ensuring I get enough water. I used to guzzle huge amounts as a kid but that was before becoming a tea and rocket fuel addict! You've done yourself a real good turn kicking the cola habit but I'm sorry your style is being so cramped on soft drinks. I'm drinking more tea and fruit smoothies and managing to limit the coffee somewhat. I normally enjoy a couple of glasses of wine at dinner and haven't been able to touch alcohol for more than 3 weeks now - can't wait to get off the morphine. When I do I'm planning to resume the red wine, but only one glass a day.

    Water intake
    Consider everything from the living environment to the amount of daily activities, I'd get myself hydrated based on my urine output color and its amount.

    If the color gets too yellowish, drink more water. And for a normal grownup person, the daily urine amount is in the range somewhere between 1000cc to 1400 cc.

    Jon
  • NewE2012
    NewE2012 Member Posts: 7
    jhsu said:

    Water intake
    Consider everything from the living environment to the amount of daily activities, I'd get myself hydrated based on my urine output color and its amount.

    If the color gets too yellowish, drink more water. And for a normal grownup person, the daily urine amount is in the range somewhere between 1000cc to 1400 cc.

    Jon

    Hand assisted lap nephrectomy
    First of all, thank you everyone for this wonderful board. It is so wonderful to read about everyone's experience and knowing that I am not alone. Here is my story/suggestions for anyone going through this:

    I am a female, 31yrs old, and 3 weeks post surgery for stage 1 RCC. I had no side effects at all and like most, my cancer was discovered by accident. I do have family history of cancer (not kidney) so as soon as the doctor told me he suspected it was cancer, I agreed to the surgery without thinking it twice.

    I had a hand assisted partial. I have 2 small scars (look almost like scratches by now) and a bigger vertical incission (about 4 inches) above my belly button. I was in the hospital for 4 days and have been resting at home since. At the hospital I was fine since I had a morphine drip, the only thing is that I became very nauseous to the medicine, so make sure they give you medicine for that. Also, Apparently I am allergic to the strips used to cover the incisions so I had huge blisters all around the incision, very nasty!

    Once home, the first 3-5 days were horrible, not from the incision pain, but from the bloating and the cramps from the gas. This part hurt so badly that I was in tears. I recommend stool softeners, prunes, and lots of slow walking. At this point it hurts to do anything, so take it easy and try to sleep as much as you can. Get good pillows so it's easier to sit up at night.

    After 3 weeks I now feel much much better. I sleep a lot because I feel like I am always tired. Also, if I walk a lot my lower back seems to hurt a lot, so I need to sit down often. My big incision is very itchy. I started using Mederma for the scar but stopped because it made the scar itchier. Lastly, I feel like my insides are being pulled apart, almost like my muscles are having a fight with each other. Very hard to explain- wondering if anyone else has experienced that.

    Obviously I am scared that this will one day come back. My doctor said I was very lucky this was caught so early, but at the same time in 5 years I will be 36, so this is something I will have to get checked the rest of my life.

    Good luck to anyone out there going through this! Luckily there are support groups such as this one that make it all a little bit better.
  • icemantoo
    icemantoo Member Posts: 3,361 Member
    NewE2012 said:

    Hand assisted lap nephrectomy
    First of all, thank you everyone for this wonderful board. It is so wonderful to read about everyone's experience and knowing that I am not alone. Here is my story/suggestions for anyone going through this:

    I am a female, 31yrs old, and 3 weeks post surgery for stage 1 RCC. I had no side effects at all and like most, my cancer was discovered by accident. I do have family history of cancer (not kidney) so as soon as the doctor told me he suspected it was cancer, I agreed to the surgery without thinking it twice.

    I had a hand assisted partial. I have 2 small scars (look almost like scratches by now) and a bigger vertical incission (about 4 inches) above my belly button. I was in the hospital for 4 days and have been resting at home since. At the hospital I was fine since I had a morphine drip, the only thing is that I became very nauseous to the medicine, so make sure they give you medicine for that. Also, Apparently I am allergic to the strips used to cover the incisions so I had huge blisters all around the incision, very nasty!

    Once home, the first 3-5 days were horrible, not from the incision pain, but from the bloating and the cramps from the gas. This part hurt so badly that I was in tears. I recommend stool softeners, prunes, and lots of slow walking. At this point it hurts to do anything, so take it easy and try to sleep as much as you can. Get good pillows so it's easier to sit up at night.

    After 3 weeks I now feel much much better. I sleep a lot because I feel like I am always tired. Also, if I walk a lot my lower back seems to hurt a lot, so I need to sit down often. My big incision is very itchy. I started using Mederma for the scar but stopped because it made the scar itchier. Lastly, I feel like my insides are being pulled apart, almost like my muscles are having a fight with each other. Very hard to explain- wondering if anyone else has experienced that.

    Obviously I am scared that this will one day come back. My doctor said I was very lucky this was caught so early, but at the same time in 5 years I will be 36, so this is something I will have to get checked the rest of my life.

    Good luck to anyone out there going through this! Luckily there are support groups such as this one that make it all a little bit better.

    Welcome to the Club
    NewE2012,

    Welcome to the Club. The surgery is not fun, but beats the alternatine. Sorry, but your complaints come the membership. You should be fine.

    Best wishes,

    Icemantoo,
  • icemantoo
    icemantoo Member Posts: 3,361 Member
    NewE2012 said:

    Hand assisted lap nephrectomy
    First of all, thank you everyone for this wonderful board. It is so wonderful to read about everyone's experience and knowing that I am not alone. Here is my story/suggestions for anyone going through this:

    I am a female, 31yrs old, and 3 weeks post surgery for stage 1 RCC. I had no side effects at all and like most, my cancer was discovered by accident. I do have family history of cancer (not kidney) so as soon as the doctor told me he suspected it was cancer, I agreed to the surgery without thinking it twice.

    I had a hand assisted partial. I have 2 small scars (look almost like scratches by now) and a bigger vertical incission (about 4 inches) above my belly button. I was in the hospital for 4 days and have been resting at home since. At the hospital I was fine since I had a morphine drip, the only thing is that I became very nauseous to the medicine, so make sure they give you medicine for that. Also, Apparently I am allergic to the strips used to cover the incisions so I had huge blisters all around the incision, very nasty!

    Once home, the first 3-5 days were horrible, not from the incision pain, but from the bloating and the cramps from the gas. This part hurt so badly that I was in tears. I recommend stool softeners, prunes, and lots of slow walking. At this point it hurts to do anything, so take it easy and try to sleep as much as you can. Get good pillows so it's easier to sit up at night.

    After 3 weeks I now feel much much better. I sleep a lot because I feel like I am always tired. Also, if I walk a lot my lower back seems to hurt a lot, so I need to sit down often. My big incision is very itchy. I started using Mederma for the scar but stopped because it made the scar itchier. Lastly, I feel like my insides are being pulled apart, almost like my muscles are having a fight with each other. Very hard to explain- wondering if anyone else has experienced that.

    Obviously I am scared that this will one day come back. My doctor said I was very lucky this was caught so early, but at the same time in 5 years I will be 36, so this is something I will have to get checked the rest of my life.

    Good luck to anyone out there going through this! Luckily there are support groups such as this one that make it all a little bit better.

    Welcome to the Club
    NewE2012,

    Welcome to the Club. The surgery is not fun, but beats the alternatine. Sorry, but your complaints come the membership. You should be fine.

    Best wishes,

    Icemantoo,