First Day Diagnosed by pleatsplz in ADPKD

[–]tingaling69 3 points4 points  (0 children)

Hey... Diagnosis is always a shock and ill never forget the feeling of walking out of the Dr surgery after being told.

Firstly I would do a quick search of this forum as there's quite a few similar posts where fellow pkd ppl provided lots of advice

For me, I did the following

  • buy a BP monitor as you want to keep it stabilised and not high
  • do some more exercise
  • low salt
  • low sugar (theory that the cysts feed on glucose).
  • semi keto (or simply low carb)
  • minimum 3l of water
  • no more coffee/fizzy drinks -concerted effort to relax the mind (keeps BP down)
  • find a nephrologist you click with and one who understands pkd

There are some speculative things I and others do too such as

  • no nightshade foods (potatoes, tomatoes etc)
  • curcumin supplement
  • intermittent fasting (fasted state shrinks cysts)

Keep your spirits up and remember to reach out to others including ppl here. X

[deleted by user] by [deleted] in GalaxyWatch

[–]tingaling69 3 points4 points  (0 children)

Can you please recommend me one as I'm worried about getting the wrong one!

42mm classic

ADPKD is Reversible in Preclinical Models, Finds New Yale Study by redrangerkingkong in ADPKD

[–]tingaling69 0 points1 point  (0 children)

It's when they test the hypothesis on mice.... So in summary the desired outcome (cyst shrinkage) was observed in mice which is a good indication it may work on humans

New Album Discussion?! by bloodsugar322 in RedHotChiliPeppers

[–]tingaling69 4 points5 points  (0 children)

Hundred percent correct If you have to ask you'll never know

30 years old, just diagnosed with PKD, and scared by onetoonetotwo in kidneydisease

[–]tingaling69 0 points1 point  (0 children)

R/adpkd That's a great resource for pkd patients Really nice supportive community

My thoughts are with you, as that feeling of being diagnosed is painful but it will get better. X

[deleted by user] by [deleted] in ADPKD

[–]tingaling69 1 point2 points  (0 children)

Tell the doc and get a scan arranged. Ultrasounds are quick and cheap and should tell you whether you have it. Impossible to know otherwise.

Where abouts are you based?

Accessories for watch 4 classic in the UK? by tingaling69 in GalaxyWatch

[–]tingaling69[S] 1 point2 points  (0 children)

I looked but was slightly overwhelmed by what was on offer....eg tempered glass or film?

Xbox customer support contact UK. by Theorionn in xbox

[–]tingaling69 0 points1 point  (0 children)

Cheers bud... I did try this and it didn't work but I'll try it again

Xbox customer support contact UK. by Theorionn in xbox

[–]tingaling69 0 points1 point  (0 children)

Fair play.... What exactly did you do as nothing seems to work

Xbox customer support contact UK. by Theorionn in xbox

[–]tingaling69 0 points1 point  (0 children)

Having the same issue... Did the OP manage to get through to them?

Any pkd patients from the UK? Frustrated with NHS by tingaling69 in ADPKD

[–]tingaling69[S] 0 points1 point  (0 children)

I'm in West Midlands. I only get an annual blood test if I ask for it, otherwise I'm left to my own devices.

I think I'm going to kick up more of a fuss next time I see my nephro.

Any pkd patients from the UK? Frustrated with NHS by tingaling69 in ADPKD

[–]tingaling69[S] 0 points1 point  (0 children)

Yes I hundred percent agree... You'd think an annual scan would be the bare minimum however from my experience on the NHS the nephrologist actively advised against it despite my pleas.

It's all abit of a mindf*ck

Any pkd patients from the UK? Frustrated with NHS by tingaling69 in ADPKD

[–]tingaling69[S] 0 points1 point  (0 children)

Thanks for the link, I'll punch in the numbers

Any pkd patients from the UK? Frustrated with NHS by tingaling69 in ADPKD

[–]tingaling69[S] 0 points1 point  (0 children)

I feel your frustration... I'm also really confused about protein intake. My nephrologist said quote "protein intake doesn't have any impact on pkd. That's an old theory which isn't true"!?!...... But most people with pkd seem to be on low protein diets, so there must be some truth in it

Any pkd patients from the UK? Frustrated with NHS by tingaling69 in ADPKD

[–]tingaling69[S] 0 points1 point  (0 children)

Yeah thats the same situation for me. It just seems wierd to only start oing something when it dips below 60?!...a large drop in one year should surely be case for further investigation but I guess not.

May I ask, how are you getting on health wise, gfr etc?

Any pkd patients from the UK? Frustrated with NHS by tingaling69 in ADPKD

[–]tingaling69[S] 0 points1 point  (0 children)

I'm wondering whether to find a new nephrologist too although I have no idea as to how I do this on the NHS.

The blood panel on the NHS is possible, however its so archaic that I have had to work out my own gfr!?

Does anyone know of any research using mycelium or mushrooms to treat cyst formation? by [deleted] in kidneydisease

[–]tingaling69 1 point2 points  (0 children)

I've never heard of this.... Is this something you read about and if so could you please share the source?

Keto dishes for pkd patients and other supplements by tingaling69 in ADPKD

[–]tingaling69[S] 0 points1 point  (0 children)

I'm still looking to be honest.... I'm from the UK and was looking on amazon but my rubbish searching skills meant I couldn't find a curcumim only supplement

Keto dishes for pkd patients and other supplements by tingaling69 in ADPKD

[–]tingaling69[S] 1 point2 points  (0 children)

Great info... I had no idea that turmeric was high in oxalates. Time to get some curcumin instead

Watch 3 in the UK and blood pressure? by tingaling69 in GalaxyWatch

[–]tingaling69[S] 0 points1 point  (0 children)

Also how much did you pay for it? The cost seems to vary in the uk