Chronic Kidney Disease

[AMDP]

Hi, has anyone else been diagnosed with CKD in relation to Scleroderma or connective tissue disease. What’s the prognosis please? Ax

[GGhere]

Hello AMPD, yes I have systemic sclerosis, Raynaud's, scleroderma and was told I have Stage 3 CKD. My diagnosis was about 5 or 6 years ago. I had appointments with the kidney specialist at my local hospital every few months and regular blood tests. Over the years results have been up and down but nothing that seemed to alarm the consultant. I asked about diet etc to help maintain kidney health. It's quite difficult as potassium is in so many things we eat. However, now I never eat bananas, I go steady on the high potassium foods such as bananas, pulses, chick peas, that sort of thing and my GP told me not to eat liquorice as that's very high in potassium.

I'm 82 now and my kidneys are only a tiny bit worse than when I was first diagnosed. Occasionally when I have a check up they tell me things have improved. I think it helps to be sensible and read about the good and bad things to eat. I also make an effort to drink plenty of water rather than too much coffee. My consultant told me not to worry as most people's kidneys get the worse for wear as they get older so avoiding too much potassium in your diet is really helpful.

Hope this helps.

[Rachmaninov2 in reply to GGhere]

Thanks for this GGhere, I’ve recently been diagnosed with Stage 3 CKD and been given no information or support. The information you share will be useful in modifying my diet.

It’s encouraging that your kidneys are only a bit worse than they were 5 or 6 years ago. I also drink plenty of water but no coffee or alcohol.

[AMDP in reply to Rachmaninov2]

thanks for sharing let’s hope we all get some more information soon Axx

[GGhere in reply to Rachmaninov2]

I'm alcohol free too and only one coffee a day. Every little helps. Keep well and go steady on potassium, although it's a very much a minefield trying to avoid it. The National Kidney Foundation, is you sign up, will help keep you informed with diet, recipes and what's going on in the world of kidneys. Good luck everyone.

[Rachmaninov2 in reply to GGhere]

I really appreciate you helpful advice, I will join The National Kidney Foundation. 😊

[AMDP in reply to GGhere]

thank you for responding. I eat bananas all the time. Oh dear. I shall have to look into it all. All the best Axx

[Rachmaninov2 in reply to AMDP]

For years I used to eat a banana every day as part as a healthy diet. Stopped about a year ago due to heartburn.

[GGhere in reply to Rachmaninov2]

My GP warned me about liquorice and I love liquorice allsorts so now they are a no-no long with bananas. Tomatoes are bit "iffy" too - when I mentioned all this to my kidney consultant he said go for moderation in everything but avoid bananas and liquorice. Off topic, and in view of your name, are you a Rachmaninov fan? I seem to recall Rachmaninov 2 is the difficult one to play. One of my current faves is Shostakovich.

[Rachmaninov2 in reply to GGhere]

Rachmaninov and also Shostakovich concerto No. 2. Both favourites of mine. I’m also interested in finding out about the person behind the music.

Book/Audio book about Shostakovich.

[GGhere in reply to Rachmaninov2]

I have Shostakovich no 2 and also Chopin's no 2. Thanks for sharing your info - hope we don't get our knuckles rapped for talking off topic. I love the fact that you do a research about the composers. I look them up too to see what sort of life they had.

[Rachmaninov2 in reply to GGhere]

Sorry about going off topic (this is my last off topic comment), I like to know what they looked like and the fashion of the day. I’ve enjoyed our ‘conversation’, thank you.

[Redoralive]

Hi, I had Scleroderma renal crisis resulting in end stage renal failure (or CKD) in March 2017- I was 22 at the time. I am now 28 and had a renal transplant in December 2019 after years of dialysis. My transplant is currently not working properly after a really severe rejection episode and TMA (a complication seen in people with Scleroderma) but it's still stable and I am feeling relatively well.

Admittedly the prognosis for myself wasn't great and I have been extremely lucky at basically every turn, but it's not necessarily a death sentence

[AMDP in reply to Redoralive]

I feel so sad for you as you are so young. At 64 I’m an old woman in comparison I’m so sorry to hear about your heath. Thank you so much for taking the time to reply to me. I wish you all the very best. Axx

[GGhere in reply to Redoralive]

Oh wow - you have been through the mill. So glad the outcome was a happy one and I hope you keep well for a long time to come. xx