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Dad learnt today that he's in Final Renal Failure

Posted , 8 users are following.

DadsDaughter1
DadsDaughter1

Yep. An ordinary, come along, give a blood sample, type of appointment it certainly wasn't this morning. After being on a steady decline over approx 4 years, today the bombshell was dropped that Dad needs a transplant. He's at less than 10% function now. Sent home with leaflet about types of dialysis and no idea really at what rate anything will happen.

Dad lives alone, and his memory is not great now, although  no diagnosis as yet. So his general looking after himself, keeping up with appointments for example isn't all that great anymore.

I'm gutted, didn't see this coming and now heart broken that perhaps my Dads life is in real danger now cry

1 like, 15 replies

15 Replies

  • odam_99161
    odam_99161 DadsDaughter1

    Posted

    I am sorry for your situation. Unfortunately, end- stage renal disease cannot be treated with drugs. Dialysis and kidney transplants are your only option. Sadly, wait for donor kidney can take years. If he lives alone, you may appoint a caretaker for him, if you can afford or try moving near to him or vice a versa so that you can take better care of your dad. I wish you a good luck.
    • shezil
      shezil odam_99161

      Posted

      Hi Odam,

      Fortunately dad lives next door too me, my sister lives over the road and the rest of my family are with in 3 miles so he's well card cared for bless him. His kidney's are only functioning at 13% which a lot of people have said is still a reasonable percentage to live on for a while but I see dad every day and yesterday he didn't feel like getting out of his chair, his eyes were rolling around in his head because he's so tired, he can't walk a few steps without getting out of breath, his iron levels are low and he suffers other problems. I think if they don't give him some hope he will just give up.

  • carol111
    carol111 DadsDaughter1

    Posted

    Hi Dadsdaughter

    Sorry to hear you are up against this. May I ask how old your father is? I think I may be in the same boat soon and waiting for a neph appointment in May for my father 89. At his age they are planning "conservative management" due to many other health issues.

  • DadsDaughter1
    DadsDaughter1

    Posted

    My Dad is 68 next week. After speaking to a transplant nurse yesterday, I now know he won't be eligible to go on the donor register, even though I'm willing to be tested. Dad has managed bladder cancer so only dialysis is available.

    thank you for both your replies.

    im floored. X

    • helen54849
      helen54849 DadsDaughter1

      Posted

      Hi,

      The doner register is different from you giving him a kidney, and dialisys would make him feel better I work full time and look after our young family before I was in bed by 8pm and could walk up the stairs.  You need to have a frank discussion with the doctor and ask what the options are x

  • shezil
    shezil DadsDaughter1

    Posted

    Hi,

    I went to the specialist the other day and my dad's kidneys are now only functioning at 13%, he's been told dialysis would only make him feel worse and a transplant is out of the question so now what happens. I should have asked what his life expectancy is as he had loads of other symptoms. He's just had to have 2 iron infusions and suffers type 2 diabetice along with everything else.the family are gutted cos we don't now know what to expect

    • sonia68053
      sonia68053 shezil

      Posted

      Hi,

      I'm really angry that you dad has been told that dialysis would make him feel worse. Absolute RUBBISH.

      Some people can go down to 5% function before needing dialysis, perhaps the doctors feel that it is not necessary yet and it would interfere, unnecessarily, with daily living.

      A large proportion of people on dialysis are diabetics who, because of the diabetes, have a collection of other health problems. What it means for your dad is that he would have blood checks for kidney function every month or two until such time as dialysis would be useful. If you are in England, the support through dialysis is really good. Some people manage to dialyse and GO TO WORK full time. The rest of us can lead pretty normal lives with few restrictions.

      As I answered DadsDaughter1, ask questions and don't be fobbed off.

      Good luck.

    • shezil
      shezil sonia68053

      Posted

      Hi Sonia,

      Problem is, my dad doesn't want it, he said I don't want to have to go to hospital 3 times a week for 4 hours, the Dr said it would make him worse because his arms are covered in bruises from the slightest knock, his skin is so thin on his arms they bleed quite a lot, the Dr said it would make it worse, he hasn't said he can't have it just that for that reason it could make it worse. The problem I have is them not actually explaining what to expect if he doesn't have it, what is his life expectancy. We're taking him on holiday early July which is a 7 hour drive, dad's now said he doesn't think he'll be able to go. I'm gutted as I don't wanna go if he doesn't. I feel sometimes they wait for you to ask, they don't give out information freely

    • carol111
      carol111 shezil

      Posted

      Hi Shezil- how old is your Dad? If he  has other serious health conditions he may feel that dialysis would just lengthen his suffering. My own father who is 89 will be having a check up next week and I am wondering if his GFR will have dropped proportionally since his last checkup, if so he will be about 16 or 17. The nephrologist seems to be surprised every time he makes it back again for another appointment. reading between the lines of "consultant speak", they obviously think a heart attack or stroke is more likely to occur before end stage renal problems kick in.  Does your Dad have any other serious issues which may be part of the decision?
    • shezil
      shezil carol111

      Posted

      Hi Carol,

      My dad's 83. We were at the cardiologist yesterday as my dad had a stent fitted a year ago but he's still never been right, especially now, he can't walk a few feet without getting out of breath, he gets out of breath just sitting down. I explained to the cardiologist that I'm worried and I'd tried getting in touch with his renal specialist and he said he would have a word with him and bring my dad's appointment forward which is brilliant. My dad said yesterday that he knows his body is packing up. I told him not to get despondent but he said he knew his time was coming. He's had 2 heart attacks a stroke, angina,diabetice, high blood pressure, he has no spleen the list goes on.

      Your dad sounds a bit like mine, just keeps going, I hope his results haven't changed when you next go, it's such a worry isn't it!

    • carol111
      carol111 shezil

      Posted

      Hi Shezil

      Yes they do sound very much two of a kind. We both need to remember they are in their 80's with complex medical issues. My Dad has made similar comments about "What if I don't want to? etc etc and Knows he is on borrowed time already. All we can really do is support them and make things as pain free as possible.

  • sonia68053
    sonia68053 DadsDaughter1

    Posted

    Your dad's life is not in danger for some time yet. Have all the dialysis options been explained to him/you properly? Have you/he been put in touch with people locally who already have this experience and can put your minds at ease?

    Many people much older that your dad and with multiple medical problems who live alone (I am one) start dialysis.

    Ask questions of everyone concerned with you dad's care/treatment. Ask for help to find people who can give support and guidance from GPs, renal departments in hospitals, Citizen's Advice - everyone.

    Good luck.

  • helen54849
    helen54849 DadsDaughter1

    Posted

    Hi,

    Try not to worry he is not in any danger at the moment, there is no way the consultant would let anything happen to him.  You can have less than 5% function and be ok.  What you need to do now is help your dad decide which type of dyalysis he wants (don't worry both can be done quickly) haemo is usually done 3 times a week at the renal unit (it can be done at home after a period of training) he can have a line put in his neck while he wait for a fistula op (a more perminant line) flud and diet are more restricted on this type but there is the social side that may be benaficial to your dad as he can spend time with others in the same boat.  The other type is peritoneal dialysis which you are trained to do at home this involves an operation to have a tenckoff catheter to be fitted then a period of healing then your good to go.  Both will take time at getting his head round so please help him go through things.  I knew I had kidney failure but was stable for a while then had a big decline and had an emergency operation for my catheter so it can be arranged quick I was told I would need it on the Monday and by the Wednesday night I had it.  Even if you know its coming its still a massive shock and you can be treated for kidney failure with drugs they are blood pressure ones nothing will cure it not even dialysis.  Its the transplant business that takes the time.  I am lucky enough to have a live doner and the hospital are taking their sweet time doing the tests so I have still been waiting ages but I need to make sure my friend will be safe so I will wait.  Good luck if you need any further advice please let me know and I will do my best to help.x 

    • shezil
      shezil helen54849

      Posted

      Thanks Helen.my dad's not well enough to go to the hospital, he's finding it hard to just get out of his chair. I was chatting to him yesterday and he just feel asleep while he was talking. We were invited to a christening last Sunday, we've just got dad a brand new wheelchair, I said we could just to to the church if it was easier for him but he said he just wasn't up to it. My brother calls round on a Wednesday and most times he takes him out for tea, he didn't want to go, he'd also booked tickets for a concert my dad was looking forward to going to but he's now said there's no way he's going to be up to it. My brother was worried that he now seems to be just giving up since he got his diagnosis, it's true he seems to have accepted it but he's all of a sudden got worse. Sometimes your better off not knowing so you can just get on with life as normal. Xx
    • helen54849
      helen54849 shezil

      Posted

      Hi,

      Aww hes not giving up he is just tired due to his low function thats all, and if he feels anything like I felt before I started dialysis he wont have any appitie.  He is not being awkward or trying to annoy anyone I promise.  The best way to describe it is food feels like a chore you try and eat it because you have to but even the thought of it makes you feel sick, never mind actuall having to look at it in fron of you on the plate.  You and your brother will try and tempt him with his favourites but he doesn't fancy anything.  Ask him and see what he says.  Would he be able to do dialysis at home you don't have to do it at night with a machine you can do in in the day (its similar sp APD just in the day) he would be able to sit in his chair at home he would have a fill bag and a drain bag.  He would do the drain first, then a fill then he would be free for four hours or so while the fluid does its dwell then drain again and the process repeats.  He would still have a bit of fredom, and he could have support in the day that may suit and then he may be up for a bit of an outing once he got going.  You mentioned that your dad had iron, did he have EPO too its worth an ask as they work together.  When I just had iron t worked for a bit but then my red blood count dropped, since I had EPO too its ok.  Let me know if youneed anything as its hard for the carers too xx

       

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