Laying down post nephrectomy

Hi Sbrooksa518bc 

I know how distressing it is when you're in a lot of pain when trying to lie down or get comfortable in bed.

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi,

So sorry you are still in a lot of pain. I had a robotic partial, so not as invasive as yours, and they do say that open surgeries take longer to heal than keyhole. I didn't really have any pain at all with mine but I did sleep on the opposite side just in case. I have seen others here who have said that they find it more painful to lie down than to stand or recline. 

The only thing I can say is that patience is needed. You are only ten days in, and in a few weeks this will all be a distant memory. My personal problem was one of my incisions that refused to heal. I had an allergic reaction to the surgical glue, and came up in a debilitating itchy rash. One incision was worse than the others because it was low down in a crease. I was distressed because that one just didn't seem to be healing and various nurses and GPs kept telling me it would heal eventually but I somehow couldn't see that it ever would! Well, fast forward twelve weeks and I went off on holiday having stopped applying antihistamine etc and suddenly I was aware that it no longer itched and was actually forming into a scar instead of an open slit!

So, hang in there. Everyone heals at different speeds and your open surgery is going to take a little longer yet to settle down. If you feel you cannot get good quality sleep due to your sleeping position, just try and grab a nap when you can. Your body will let you sleep when you need to, even if it's in increments. Adopt a position that isn't causing pain, if you can. There's no rush to recover. Take things slowly and you will find that gradually the pain will ease - I was told that the amount of healing that happens in the first two weeks is nothing compared with the huge amount of healing that happens in weeks three and four. I remember how frustrating it was, though, that I didn't seem to be healing as quickly as I thought I ought to! and I can only reassure you that in a few weeks time, you will feel immensely better than you do right now.

I  agree  with  Maite:  it's  only  10  days  on.  Glad  you  found  this  site:  it's  very  informative  and  with  very supportive  people  on  here.   Time  is  a  great  healer,  it  really  is,  to  use  a  cliche.    Meanwhile,    as a  life  long  insomniac,   as  I grown  older  and  iller,  I  resorted  to  buying  a  recliiner  a  few  years  ago.     I  find  myself  having  day  times  naps on  it!

Your  body  will  tell  you  when  you  need   to  replemish  your  energy  via  sleep.  You'll  just  nod  off!    Personally  only  had  one time 12  hours  in,  post -op,   after 8  ops,   my  brain  woke  me  up  due  to  acute  pain.  Blocked  catheter.  Not  saying  it's  equivalent to  your pain,    or  your  op.  Blocked  catheters  are  very   common,  but just  saying    the   brain  will  wake  you  up  when  in  pain,  so  try  to sleep  through  it.   

Your  pain  will  get  better.  Meanwhile,  re  sleep, surprised  to hear  the  oral  morph   didn't  work  for  you.  Have  you  tried  meditation,  relaxing  music.   Burning   Lavender  oil  helped  me  in  the  past.  I  can  go  to sleep  when  it's  11am  and  not  wake  until 6pm.  Of  course,  I miss  my  stringent  drug  regime,  but  when  the  body  needs  to sleep,  it  will.

Yes,  be  patient.  Take  care  and  keep  us  posted.  Hugs 

Hi,  Maite -  we  have  chatted  before  and  you  were  kind  enough  to  reply  to  my introductory  profile.    How  are  you  doing?        

Luciana

Hi Luciana, I'm doing really well...thank you for remembering, and for asking! The surgery is just a distant memory now, five months on. I am due a first follow up scan in November and will probably get a bit nervous then but given that I went 2 years before having the lesion removed, and my surgeon saying that my histology showed me in the lowest possible risk of return or spread, there's no real reason why I should be anxious come November. 

I have learned that quality of life doesn't just mean, being completely healthy (as I had been for 62 years!) but getting on with what hand you have been dealt, and living your best life regardless. It feels good to be able to see positive things in the face of something that could be deemed a very negative thing 

Nice  to  hear  from  you,  Maite.  Well,  as  you  are  aware,  we  are a  supportive  community  on here,  so  of  course  I remember  your  back  story  and  positivity!  My  body  may  be  failing,  but  my  memory  is  as  sharp  as  a  razor!     Good  luck  with your  appt  in  November.   No doubt  you  will  keep  us  all  informed  as to  how you  got  on.  

SBrook, who  began  this  thread,  hope  your  able  to  sleep  a  little  better!  Still  early  days -   in a   few  weeks your  body  will  start  to   heal.  Sleep  deprivation  is a  terrible  thing:  been  an  insomniac  all  my  life,  but even  various  serious  iillnesses  don't  allow  me  any  respite.   I  swear  the  natural  oil,  Lavender,  has  helped  me  more  than  any  meds!!!!    As  I said  in  earlier  post,  best  purchase  I ever  made  was  a  recliner chair  and  take  naps when  my  body  needs  some  sleep. 

Anyway, off to  watch  some  telly,  now.  Take  care, all  :)