Having problems with kidneys for years and after operations, stents etc have finally been diagnosed with Magacalycosis & NO cure! True?

My pain in under control with morphine, tramadol & diclafenac and I await the pain clinic appointment.

Its just even without the pain I feel constantly poorly and cant face at 41 having to live the rest of my life like this, can anyone help or advise please.

12 Replies

  • Hi

    I had to look up what you have been diagnosed with and whilst I don't have the same diagnosis, I feel I can relate.

    I too have pain most days in varying degrees, I never know how I will be one day to the next. From what I have read you I guess must suffer from recurring UTIs, like myself. Infact I have one at the moment.

    I am of a similar age to yourself and what I find that helps is to take each day as it comes. I try to focus on something positive that I have done that day. It helps to have a hobby, or something that you can do even when it is a 'bad' day. Despite this I must admit that at times I do get fed up. I don't look to the future of I will always be like this. My family help to keep me going.

    I hope this helps and wish you well at the pain clinic. Stay in touch.

  • Hey thanks so much for replying, i could cry. How do you manage with work? what meds are you taking? Do we really have to live with this?

  • I am unable to work, though I did used to but my kidneys became worse after the birth of my son. I take antibiotics when needed, fortunately my doctor now let's me self prescribe if I am unable ble to get to the doctors such as when on holiday. I also take diclafenic when needed, though I try not to take it too often as mentioned below it is not supposed to be good for your kidneys.

    I have lived with this all my life though I have got worse as I have got older. Don't get me wrong there are times when I ask 'why me?' and there are days when I am so tired that I can't even think clearly.

    Over the years though I have learned to listen to my body and to 'cut myself some slack' when I am tired. I have learnt not to think as myself as being lazy, but that my body needs time out and to rest, so if I need to sleep during the day, I do. And being on here has helped in that there are others with similar experiences, like yourself.

  • my kidney specialist said that constant use of diclafenac ,has had an undesired effect on my kidneys,have a word with your G.P.i have ckd3 and have constant pain,which doesnt get any better,hope things improve for you.

  • Thank you for your reply, how do you come to terms with knowing it wont get any better?

  • I have known for 24 years that I have been sitting on a time bomb. I too am in various degrees of pain on a daily basis, I have now been off work for nearly a year my kidneys are now down to 16% function. As Nutbrownhare has said you have to learn to listen to your body, it is hard as I didn't want to except at 43 that I was unable to do the things I used to, after all 43 is not old! Though some days I feel like I'm 63 or older. I have now taken up knitting which is slight distracting from the pain.

    It can take time to ajust but just don't push yourself and hope things improve soon

  • Did you take medical retirement or do i have to go on disability?im so confused, so many question to ask and a future to plan. Just cant believe this is it!

  • Try not to think 'this is it'. This is just a different phase in your life. It will take time to adjust. When you become a parent you can can no longer nip to the pub of an evening but it brings positives in a different way.

    As a family we try to work around my kidneys and we are all far much closer as a result. I may not be able to do some things with my son, but we sit down together and read stories together. Consequently we have a good relationship, and he is of secondary school age!

  • I am a Pe teacher and pt, i feel so scared everything I have ever work towards is going down the drain.

  • I know I have to pull myself together, thank you for your kind words, it so helps

  • I too have taken up knitting, I am very much a beginner but it helps to have a sense of achievement.

  • I am currently still employed by the NHS even though I haven't worked since mid February 2012. The decission hasn't been made yet, but I am aware it will come soon. I am in hope that I will go back to work once I have had a transplant!!! (I live in hope)

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