Feeling low, frustrated and emotional

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I am sorry to have a moan I just feel crap, I found out I had ckd almost 8yrs ago i was 28% then and stayed that was for over 5 years then dropped to 21% and within 8 months from that I was at 12%, then 10% 3 months after that but stayed at 10% for a year (which is so frustrating because you dont get dialysis at 10% you just struggle everyday... I am now at 9%, I dont know my creatinine or urea because my last 2 lots of blood results havent gone on my patient view which I am not sure why but thats annoying, I know my creatinine is about 600. I just feel awful and fed up of being like this!! I was told if I went down below 10% in april my dr would put my tube in ready for dialysis which weirdly made me happy because I am sorry ready for dialysis, I am praying it will help and make me feel awake and just feel a bit more myself again not feeling like a 90yr old ill person... im 30yrs old and have just had enough!! I go to get my bloods done monthly (I havent been told how often to go have my bloods done) and my pd team make me feel like I am some hypochondriac who should only have my bloods done before clinic which is every 3 months, I am not getting any help. I dont complain ever! even on my worst day I never moan or complain, I only go to the hospital once a month to have bloods done, My dietitian and Neph are so so nice and caring but I seen them once every 3 months.   

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  • Posted

    I forgot to say my Dr has decided not to put my tube in... so its another 3 months of feeling crap
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  • Posted

    Hi Janice

    My mum was like you with the symptoms and ready for the fistula in the arm then she started on protein drinks and puddings after a few weeks she felt alot better and now her bloods have stabilised at low end ckd 4. They have said she doesnt need the tube/fistula in her arm now.

    Do you have a reason for the Kidney disease?

    Sorry im not much help but maybe have another chat with your neph dr or dietician?

    Really hope you get it sorted soon, but try and keep positive if you can. Its such a vicious circle feeling exhausted and low at same time. Definately get back to your neph dr and tell them how bad you feel x

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  • Posted

    It really is difficult especially if you don’t have support.  There is a FB Page Kidney Care Uk which is excellent and has lots of similar people
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  • Posted

    I feel so bad for you! You have every right to complain. We are all here to share and support each other.  Sounds like you need to talk some sense into your medical team or doctor. The red tape, waiting and non compassion is inexcusable! 

    I am not in the UK but have heard a lot of bad stories about medical care and practices. Yikes. 

    Praying you get your dialysis as you wish very soon. 

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  • Posted

    I follow an amazing group on FB (womens renal failure group) so I have them but its not the same, I mean professionals to sit u down and tell you when you need to come in etc, especially when you drop to stage 5 I think you should have that... The women on my renal page say they go for their bloods 2-4 weeks and some see their Neph every month or 2 months and feel comfortable. I dont feel comfortable and dont know what the heck to do..

     

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    • Posted

      Janice,

      I am in a somewhat similar situation. My renal function was very low for a year (creatinine 4.6 and eGFR 8-9). I started seeing a new nephrologist about 9 months ago. He has made a change in my treatment plan that has increased my very low blood pressure and improved my renal function some (creatinine 2.75-2.8 and eGFR17-18).

      So now I feel pretty good some days and pretty poorly other days. I have too much renal function for dialysis but not enough to feel consistently decent. I get sick easily and have had 3 UTIs in the past 9 months. And my anemia treatment plan is not consistently effective either.

      I find myself trying really had to keep everything consistent on a daily basis. So I eat exactly the same food day after day. I drink exactly the same amount of water daily, etc. sleep and exercise are exactly the same too. Any small change in routine can cause a major change for the worse in how I feel.

      On one hand I'm thrilled not to be on dialysis yet. But on the other hand I would run to get the PD catheter inserted and start PD dialysis today to feel better consistently.

      In the meantime, I've got to try to sell my house and move so I'm closer to my new nephrologist. I have a month off with my job in two weeks so I'm trying to be ready to deal with moving during the month I have off with work.

      And, to add to the challenge, I'm the last living person in my family--never married nor had children of my own. So I'm slogging through most of this by myself; although, I have friends who will come to help me with the move.

      But it is just exhausting. That could be my severe anemia though. I am due for more labs next week. If it is the anemia I'll receive another Procrit injection. If not, I suspect having a month off so I can sleep a little later and do forth will also help. I have made my mind up that I'm paying a moving company to pack me as well as move me this time. They can also unpack me in Overland Park.

      As a 64 year old woman, I'm not as worried about length of life as I am overall quality of life. This dragging around feeling so tired is not what I consider to be great quality of life. BUT, I may feel better about a week into my month off with work. And, I may find that my CBC is low enough that I need an EPO injection.

      Anyway, I can relate on at least some levels with what you describe.

      Marj

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  • Posted

    Janice are you in USA or UK?

    Hate to say this but he who shouts loudest gets heard!

    Maybe its time for you to complain more.

    Always the most unwell/ill people make less fuss and the ones who complain most are usually not so ill but the sicker ones get left out because they are too accomodating and patient.

    Im in UK and have only just had referral to nephrologist, at the reluctance of my GP to refer me. My first appt at nephrology was a 5 min chat and some blood tests and a review for 2 months later!

    Well at least im in the system now.

    Get an appointment and start complaining about how you feel!!

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  • Posted

    Janine, the others have already given you great advice - I just wanted to say that if you don’t feel you are getting the attention/treatment that you need and deserve, if it were me I would be asking for referral to another nephrologist for a second opinion.  You certainly don’t need to apologise for having a “moan”  - if you can’t do that here where can you do it.  Make yourself heard - it’s your body, you know how you feel and the medical experts are being paid to care for you with all the means at their disposal.
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  • Posted

    Thanks everyone, im not the sort to feel like i should be given more attention etc im far from that, its just reading about other ckd patients in the UK who see their renal team and get information and have regular bloods. CKD is so so frustrating, I have felt pretty crap since i hit 12% but feel pretty much the same at 9% as what I did then so without my blood results I wouldnt know id gone down, I like to know where i am at so I make sure i go monthly which surely is understandable? i just feel like the pd team are funny with me about going for bloods.

     

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  • Posted

    Thanks everyone, im not the sort to feel like i should be given more attention etc im far from that, its just reading about other ckd patients in the UK who see their renal team and get information and have regular bloods. CKD is so so frustrating, I have felt pretty crap since i hit 12% but feel pretty much the same at 9% as what I did then so without my blood results I wouldnt know id gone down, I like to know where i am at so I make sure i go monthly which surely is understandable? i just feel like the pd team are funny with me about going for bloods.

     

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    • Posted

      Don’t concern yourself with how they might feel - it’s your body and you that matters - they are being paid to care for you!   Monthly blood tests are your right with the level of function you have remaining.
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    • Posted

      Marj, it shouldn’t be this way where patients are left to feel awkward and uncomfortable about their treatment.  If we go into a shop we expect good service for what we are paying for don’t we and it shouldn’t be any different at the surgery - we are the customer.  I had to keep repeating to a Dr as I was about to leave his room one day last year that I wasn’t happy, that I just knew something wasn’t right with the numerous UTIs I was experiencing.  The last time that happened to me in childhood, and the outcome was the removal of a kidney.  He finally asked if I’d like him to send me for a scan.  That scan showed a grey area on the bladder believed to be a tumour. Luckily, surgery a few weeks later revealed it to be a benign polyp.  Even my renal consultant said what a good job it was that I pushed for further investigation.  I suppose I’m older and wiser - we’ll I like to think I might be wiser!🙃

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    • Posted

      Of course you are right, but I appreciate hearing you say this. I think it's something we all need to keep in mind.

      Matj

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