Chronic Kidney Disease

2

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  • FOXYLADY71
    FOXYLADY71 Online Community Member Posts: 13 Listener
    I have stage 5 renal failure called Nephrotic Syndrome FSG since 1984 and should be on Dialysis but have refused treatment. I am 71 and cannot see myself sit for 5 hours 3 to 4 times a week. I have organised all future paperwork such as power of attorneys and a care plan living will with the Hospital plus my funeral and feel very relieved in doing so. I feel I can the future with a quality of life throwing off the sheckles of being tied forever to the NHS with constant appointments etc. I have my consultations by phone and blood tests and occasional visit from the access nurse involved with my care. I am aware of the unknown is what I may face but I take every day as precious and gives me a quiet unstressed lifestyle. My Veins were so small for a fistula which meant 2 operations and then may not be good enough which leaves the line insert but quite frankly I have managed all this time since 1984 so what will be will be from now on.  
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    It certainly sounds like you've managed a lot over the years @FOXYLADY71. Thanks for sharing your own experience here on the community, I'm sure our members will appreciate it :)

    How are you doing today, do you have anything planned for the bank holiday weekend?
  • FOXYLADY71
    FOXYLADY71 Online Community Member Posts: 13 Listener
    Thank you...yes I have self-managed and had other medical issues in-between like Bile Duct cancer and chemo in 2018 after having a tumour removed, and got over that as well and although it has all been debilitating I have a good Hubby that has supported me throughout and now I live a quiet life at home in the garden etc. Great therapy but no heavy work I am afraid.
  • Sandy_123
    Sandy_123 Scope Member Posts: 63,102 Championing
    Hi @FOXYLADY71 welcome to the forum, you have gone through alot, I'm glad you have support through your husband, enjoy your garden.
  • CountryMimi
    CountryMimi Scope Member Posts: 163 Empowering
    edited May 2023
    @FOXYLADY71

    I'm really sorry that you've been suffering for so long. I can only imagine how it must feel to have had to make those arrangements, it mustn't have been an easy decision to make!

    If I'm not being too invasive, please could I ask what symptoms you experience?

    Bless you, as long as you are doing what you feel happy with and what you feel is best for you and your needs.

    I find it frightening that they can't really predict what will happen - got told this myself when I was diagnosed and whilst I have 59% function, it still seems a really scary prospect as you only qualify for treatment at 8%

    Gosh, you really have been through some terrible illnesses - I really commend you for being so positive and I am so so glad that you have a supportive husband. 
  • FOXYLADY71
    FOXYLADY71 Online Community Member Posts: 13 Listener
    Take each day as quality of life. High blood pressure and swollen ankles.have had a parathyroid removed as calcium was to high. They see all this in blood tests and will treat accordingly.keep stress free as possible and keep salt of food.salt is a killer. Check diet with your renal dietician they will advise. Everyone is different but do not worry to much.you are 59and still a way to go to 8. I am 11 but get very tired and breathless now..I can only do small light tasks to keep mentally well. It's a challenge sometimes but I am also 71 xx
  • CountryMimi
    CountryMimi Scope Member Posts: 163 Empowering
    @FOXYLADY71

    I'm so sorry, I can only imagine what you're going through, it must be quite worrying to have additional procedures too.

    Do you have problems with water retention? 

    I have been trying to reduce red meat from my diet. I tend to try and keep away from salt anyway, definitely don't add salt to meals.

    Thank you, due a phone call with consultant on Friday. Had scan done a few weeks ago, so just waiting to see what he says as they wanted to find out what the cause of the CKD is - I suspect that part of the problem is that my right kidney is really small - think it's 6.8cm, where as left is 11.3 I think - from what I remember (though my mum can't recall 😂), I have had a smaller kidney since birth - was 10 weeks premature and only 2lb 7oz!

    Yeah, consultant said not to worry too much at this stage. I think one of my main worries is that when I get an infection I seem to get really poorly with it - I hate saying this but I feel that ill that I feel like I'm dying because it isn't a quick process to treat. Last time we thought it was just a bug and I practically slept for 3 days straight before we decided we needed an ambulance. I'm more aware of the signs now though so will definitely seek medical help far sooner!

    🥺 That is so heartbreaking to read, I wish i could just come and give you a big hug! Sending you a virtual one though 🥰 I can however completely understand the tiredness as I really struggle - I have an underavtive thyroid and also have to have pernicious anaemia which don't help with energy levels!

    Bless you! It can't be easy at all! I really hope you have some good support around you 💖

  • FOXYLADY71
    FOXYLADY71 Online Community Member Posts: 13 Listener
    Yes had all that and I am on iron tablets etc. I know exactly the feeling of dying and infections happening and I have small kidneys. Just been told I have vasculitis in brain and affecting my eyes now and they are sore.yes its all part of living every day good days and bad.bless you too I know what you are going through. Be positive if you mentally worry this affects body.keep pampering yourself. I am a crazy lady and always ask questions to doctors as they can be to busy to listen I have found. you may have good doctors but we have a **** hospital here.
  • CountryMimi
    CountryMimi Scope Member Posts: 163 Empowering
    Do you think they help you at all?

    It's horrible isn't it!

    Gosh, really sorry to hear that! Sorry, I had to look it up as wasn't sure what it was but my goodness, it must be extremely worrying!

    Yes, definitely. I just thank the Lord that things aren't any worse than they are! I know a lot of people if far worse positions than I am. 

    You are so right about relaxing yourself. What do you enjoy doing to relax?

    I honestly don't blame you!

    To be honest the surgery I'm at is shocking! I have found one doctor and 2 nurse practitioners who I've got quite a good relationship with. My poor mum has also got ongoing health issues and the owner of the practice basically gaslit her! So many patients have complained about this particular doctor but because this person is the owner, it gets ignored!

    The hospital isn't the best, but it also isn't the worst. I've been to 5 different hospitals over the last year for treatment for all of my conditions and I can't say I've been overly impressed with any of them. I've had good experiences in different departments with some of them, but bad experiences at all. 

    I know some people put their heart and soul into working for the NHS, but it is such a shambles right now 😔

  • FOXYLADY71
    FOXYLADY71 Online Community Member Posts: 13 Listener
    Yes it is a shambles in spite of all the money thrown at it. I have been at hospitals all my life and seen it go downhill. I feel it was when the politicians made them a business. To many chiefs not enough Indians. I sympathise with your mum as I have experienced similar 
    .I just do my best in self management and do the best I can in self healing.take each day as you can. Xx

  • CountryMimi
    CountryMimi Scope Member Posts: 163 Empowering
    It really is! Half the world is topsy turvy at the minute!

    So sorry to hear that - makes me feel so angry for people like you and my mum. Can't even trust many health care professionals nowadays - don't get me wrong, some of them have good hearts and genuinely care, but I think some people have lost the values

    Thank you xxx


  • FOXYLADY71
    FOXYLADY71 Online Community Member Posts: 13 Listener
    you are so correct in what you say and is my sentiments entirely. The world is changing and some have forgotton how to care for others and is due to much social upheaval in their own lives...it affects everyone who is trying to live a decent life. As you say it comes down to values. xx 
  • CountryMimi
    CountryMimi Scope Member Posts: 163 Empowering
    It's so horrible to see and I think there will be a lot of backlash in years to come if something doesn't change in all areas.

    Imagine how much better the world could be if everyone spreads a little bit of kindness xxx
  • FOXYLADY71
    FOXYLADY71 Online Community Member Posts: 13 Listener
    Other people see kindness as weak these days and and you find bullying starts from my experience. People have forgotten kindness except for some of course.if you experience trauma in your life then you find they are the ones who understand more and try to help others and emphasise. Some have lessons to learn in life. Hurting others is so unkind but all we can do is keep trying I guess.eutopia and paradise such lovely thoughts.x
  • CountryMimi
    CountryMimi Scope Member Posts: 163 Empowering
    It really is getting worse. It's always good for people to do a 'heart check' about how they're treating people & whether they're treating people in the manner that they would want to be treated.

    Sadly, the news is filled with a lot of hate right now, specifically towards one high profile figure, which I don't think is helping anyone in terms of learning to be kinder towards people. We all make mistakes.

    Just an update on the CKD front. Had a phone call from kidney clinic Dr this morning and she's asked me to go and get my bloods done again just to check where my function level is at, though she isn't expecting it to be much different than it was last time. Sorry if this is TMI, but one of my symptoms is smelly urine, which I've probably had for about 18 months and she thinks there still a possibility of infection, so she's prescribing me antibiotics and apparently my vitamin D levels are slightly lower than expected, so she's prescribing some medication for that. She's said that for at least the foreseeable future with the current levels of my kidney function that I will be seen / have a telephone consultation every 6 months and that if I start to experience any of the symptoms that I've had before to get straight on it with medical attention as delaying it could cause further damage - I've had two really bad kidney infections now and so I'm sort of aware of what my symptoms might be, where as before I've just passed it off as a bug because I haven't been aware of the potential outcome


  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,714 Championing
    @CountryMimi Thanks for the update on your appointment. The vitamin D will help you feel a little better, and it does sound like antibiotics are a good idea if you are having smelly wee (not TMI!). How do you feel after speaking with your doctor?
  • FOXYLADY71
    FOXYLADY71 Online Community Member Posts: 13 Listener
    Fell for you as I suffer wee issues. Mine is rather slow at the moment and having extra tablets. Just had a blood test for inflammation somewhere and told have brain vasculitis. nothing I can do about it but maybe steroids if get worse.
  • CountryMimi
    CountryMimi Scope Member Posts: 163 Empowering
    @Cher_Scope I have a B12 deficiency as well so hopefully once I'm topped up with both I'll have slightly more energy than I do now 😅

    I feel better knowing that they're taking action to try and prevent any kidney infection that might be lurking right now from developing further, as like I explained to the doctor earlier, both times when I've been admitted to hospital and been aware of a kidney infection, not to sound morbid but I've felt so poorly that I just wanted to die. In September I ate so little that I lost a stone in a week because I just couldn't face eating and aside from my final two days, as the infection cleared up, I pretty much just slept the entire time.

    I think it's just going to be one of those things where only time will tell.

    @FOXYLADY71

    It's horrid isn't it! I suffer with incontinence too which is a consequence of the cauda equina from my spinal stenosis and the slipped disc.

    Would the steroids be for the vasculitis? 
  • FOXYLADY71
    FOXYLADY71 Online Community Member Posts: 13 Listener
    well not heard as yet but received my MRI today and shows white lesions in my brain. I also have spinal stenosis and is painfull. when it gets bad I wear a belt and I have pain on sitting and alighting in my coxyx
    my Renal nurse says its part of the kidney situation with my bones...well what can you say. Yes i had similar when I had an infection and taken into Hospital..now I seem to eat a fair bit but in moderation as it affects my bowels. I have stress incontinence and have a phone consultation booked for Monday with my GP on the matter...so something else to have to cope with. You seem to be having issues at the moment and hopefully they will improve for a while until like me something else crops up...keep positive I know it is hard.xx   
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,922 Championing
    It sounds like you are having a really difficult time at the moment @FOXYLADY71 and we are sorry to hear this. I just wanted to say, we are here for you and with you.

    Hopefully, the phone consultation will go well with your GP on Monday. Please feel free to let us know how this goes if there's anything we can do to support you in the meantime  :)

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