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My Mum has just found out she has renal failure and has been given a few months to live.Help!!

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frances4740
frances4740

Hi all,

My Mum found out 5 weeks a go that she has stage 5 renal failure. The doctor's said she may only have 6 months to a year to live. Another doctor said 3 months to a year max. Her kidney function has declined rapidly since 2015, now only operating at 11%. She has other serious health conditions such as COPD, type 2 diabetes (insulin dependent), hypertension, high cholesterol, CHF and two years ago she suffered from deep vein thrombosis and almost lost her life. Approximately 20 years ago she had breast cancer and had her breast removed. She is a fighter that is for sure, but this latest news has come as a complete shock for her and for my family. From meeting with the doctors the feel seems to be for her to consider conservative treatment. She is only 64 years, and has fought so long, and wants to see her grand children grow up...they have told us the many complications that she may go through with dialysis and said it is dangerous if she has the operation for the cathether, and dangerous if she doesn't...I asked at the dialysis education session if there were any support groups or people we could talk to that have been in a similar situation and are either on dialysis or on the conservative treatment. They gave me a card with a facebook group. My Mum is not on facebook and neither am I. She wouldn't know how to use facebook...we have seen the surgeon and he said they can operate, although we are due to see the anethetist next week, so it is all up to him whether he is willing to risk putting her under general anaesthetic. We just don't know what to do. I don't want her to suffer, especially with her COPD, she already has difficulty breathing as it is. But we don't want her to give up either. At the end of the day it is her decision as she is the one who is going through this, although knowing my family we want her to LIVE. 

Any advice woudl be greatly appreciated..she has had an iron infusion which helped a bit, but now has a chest infection that is just not getting better. She is due to have her next blood test next week, we have our fingers and toes crossed that she is stable. I would like her to have more iron. Her legs are restless and she gets itchy. She is taking medicaiton for this...what should she do???thank you

0 likes, 8 replies

8 Replies

  • frances4740
    frances4740

    Posted

    I have also been taking her to have accupuncture which has really helped the pain. We just want her to get better sad
  • MrsO-UK_Surrey
    MrsO-UK_Surrey frances4740

    Posted

    Frances, I'm so sorry to hear this about your poor Mum. Hypertension and diabetes are anathema to the kidneys but hopefully with medication can be kept under control.  However, do check those BP medications out with a renal or hypertension consultant - even the pharmacist - as certain BP meds can adversely affect the kidneys.  Over the last couple of years, I have been switched from one BP pill to another, mostly due to the side effects, with the most serious one being sudden and drastic lowering of my kidney function.  Needless to say, such pills have been stopped very quickly and the kidney function has slightly increased back up, but things could have been much more serious had I not been monitored and taken off those meds very quickly.  I might be more vulnerable as I have just one kidney.

    Your mum has had so many health problem to put up with at a relatively young age, but as you say she is a fighter and who is to say she won't fight her way through this as well with the help of the medics.  

    Have you contacted the National Kidney Federation for advice?  There is also an excellent kidney forum on the HealthUnlocked site where you may get lots of helpful advice and answers.  

    • frances4740
      frances4740 MrsO-UK_Surrey

      Posted

      Thank you so much. I will look into her blood pressure medication. and will look into the sites you mentioned. thank you 
    • frances4740
      frances4740

      Posted

      Hi MrsO, it has been a while since I last posted, but my mum has had her operation for PD dialysis and is awaiting training. She did go into hospital for 5 days with fluid overload. The increased her water pills and have stopped her blood pressure pills. I thought that was interesting they did that. 
  • mikewordman
    mikewordman frances4740

    Posted

    Hi Frances,

    Very sorry to hear about your mother's many health problems.  On the one hand, I can understand why the doctors are so concerned - kidney disease is a challenge unto itself, but when coupled with other diseases the complications become numerous.

    However, one thing confuses me, and that is the doctors saying your mother could not tolerate / survive a general anaesthesia.  If I understand correctly, this is to install the catheter for PERITONEAL dialysis, correct?  Given that you referenced a "catheter" I'm assuming this is the case.  If so, I can tell you that I had that operation just a few months ago and they gave me no general anaesthesia.  As in, none.  Zero.   Zip.  Nada.  It was just me and the surgeon in a room in the hospital (believe it or not), and he slipped an Atavan under my tongue, pulled out a needle and gave me a crapton of local 'freezing', and installed the catheter.  Job done in 25 minutes.  The surgeon does catheter installations all the time and this was not unusual; it is the norm.

    On the other hand, if she requires a fistula installation (for HEMOdialysis) then I can't vouch for that; sounds like she would need a general anaesthetic.

    So assuming it's for hemodialysis, I would go right back to your mum's doctors and ask them why they believe your mother would require a general anaesthetic in the first place?  This operation is classified as "day surgery".  Given your mother's complicating factors there may be a reason - but right now, I can't see it.

    I hope that helps!  Keep us posted.

    • frances4740
      frances4740 mikewordman

      Posted

      Hi Mike,

      Thank you so much. I will make inquiries about why it is that she needs to have general. You are right we would prefer the peritoneal dialysis. How are you doing with it? Thank you

    • frances4740
      frances4740 mikewordman

      Posted

      Hi again, sorry it has been a while since I last posted. A lot has happened lately, but the short story is, my mum went through with the operation and had the catheter placed in her abdomen. They were going to do local anaesthesia, but she had a few complications so ended up putting her under general. Thank goodness she has come thru that fine. She is awaiting the training now for PD dialysis. Can't wait for her to get started so that she may start to feel better smile

    • helen54849
      helen54849 mikewordman

      Posted

      Hi Mike,

      I think it depends where you are as I have a PD catheter and this was done under general day case still but full general I was told under no cicircumstances would they do it with local.  I think it depends what catheter you have also mine is a curly one and newer there are straight ones but apparently they can come out easily if pulled so I was told.

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