How near the end?

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Wondering once again if Dad is near the end? He has CKD but GFR is 19 so not yet "end stage". He has a red blood count haemaglobin of 9 and is very anaemic. A Dr said this week "He is very fragile in many ways" and another Dr said it is a matter of quality of life now rather than anything else. He has had numerous courses of Anti Biotics in the last few months for leg infections and UTIs, plus ulcers, AF , Stroke history and Dementia.  I thought he had a heart attack last week but the medics have not followed this up - he was asking me to rip his shirt off as it was so tight and very high temperature talking nonsense but attributed to infection. He is 90 , so wondering how much longer he could go on for? 

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  • Posted

    Hi,

    I am sorry to here about your Dad, obviously by your post he is not able to have dialysis?  To put this in perspective for you my GFR was 7% before I started dialysis but I was 37 at the time with no other health conditions.  You will more than likely find that he won't die of kidney failure if he has these other health conditions.  I don't know what AF is? I am guessing it is something to do with his heart, if this is the case you may find that his heart fails first.  I am surprised the drs have not told you this. As for your question of "How long" no one can answer that question for you, I was told it would be a good 18 months 2 years before I started dialysis but in reality it was only 7 months so that is why people or drs cannot answer that question.  His red blood count at 9 isn't too bad they like it to be 10 so 9 isn't too bad.  Has he had an iron infusion along with some EPO this may help his iron levels?

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    • Posted

      Thank you Helen

      Firstly Drs have been excellent and yes I know other things may happen first. AF is heart related and stands for Atrial Fibrillation- an irregular heart rhythm.

      He was offered the choice of blood iron drip in hospital or tablets but didn't want to go to hospital- as you say -conservative management is the phrase due to multiple health problems and age. 

      Today he gave a urine sample which looked like water, I questioned hima bout it as he has dementia and I wondered f had rinsed it out under the tap but he said no it was urine.  I have never seen that before and feel he is nearing the end? I will post separately on this I think

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    • Posted

      Hi,

      If he were to have iron he shouldn't have to stay in hospital.  I have had 3 infusions and they take about  30 mins to go through then they just like to keep an eye on you after the first one to make sure there is no reaction then you go home.  I am with your Dad I don't like staying in so perhaps he may change his mind if he knows you don't have to stay and will feel a bit better if he has it and EPO is just an injection I did mine myself at home. My urine was always lighter from when I was stage 3 but never clear like water, may be an idea to get another sample to see you dont have to go anywhere you could check this yourself get him to wee in a jug then you know if it is the same ask the drs next time you go or if it is different you will know that your first thoughts were right.

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    • Posted

      Hi Helen

      Thanks - Dad had an intravenus iron before from a kidney referral but it is quite an ordeal for him to go out of the house- fractured spine so journeys are painful. He has had so many hospital episodes some of them for several months at a time for so many things he just wants as little intervention as possible now.  The urine sample turned out to be water- dementia issue so another sample is ready for testing although nurse decided not to come today - first day in ages she has missed Dad so he may need to try again tomorrow. Pleased to say he slept better last night. He has just asked why I was walking through the ouse with a shovel  [eek]  so I told him it was a dream- never a dull moment. 

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    • Posted

      Hi,

      I understand him not wanting to go to the hospital and am totally with him on that issue I am affraid.  I do feel for you it must be very hard the situation you are in having to watch your father go through this.  I can't to do anything to make it any easier I wish I could. I hope he has got rid of his infections and remains free from UTI's for a while they would make him feel rubbish alone.  I do hope this get a little better soon x

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    • Posted

      Thanks Helen

      He has had more anti biotics again this week and has not eaten an awful lot in the last couple of days, had a couple of nose bleeds and seems to be going into the toilet frequently without doing anything. All these seem to be symptoms of end stage when I have googled it. So is not sleeping at night and sleeping all day and confusion , all of which he is going through. I think nurses are due to do blood test again either next monday or week after. All these symptoms are rather vague though and can of course be down to other things besides kidneys. 

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    • Posted

      Hi Carol,

      As you get nearer to end stages you don't want to eat anything, when I was about 14% (we are all different though) I couldn't stand looking at food never mind eating it it made me heave just looking at it never mind getting it anywhere near my mouth.  My poor husband dispared and would sit each meal time running off a long list of suggestions for me to eat, but I didn't want any of it.  So on the odd occasion I fancied something he was out the door and buying it before I changed my mind. I did feel for him as he had to sit and watch me starve day in day out and I wasn't being difficult I really couldn't eat. I hope this helps with the not eating.  Also antibiotics cant effect your apitite.  I didn't have an issue with sleeping I would go to bed at 7.30pm and still feel like like I hadn't been to bed when I got up.  The not sleeping could be due to his age as we get older we need less sleep, also could be due to his dementia.  I didn't have confusion but I didn't have any memory at all someone could tell me something and I would have to ask them at least 3 times what they said as I couldn't remember.  People were really good to be fair and just humoured me for which I am greatful again I couldn't help it.  I hope this puts your mind at rest I wish I could help you more as I know it is hard for you to.  Doo keep us updated x 

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    • Posted

      Thank you Helen for sharing your insight. It does help to hear how it feels from the other side. 
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