Alone & told to wait for kidney failure - need help

[Athena]

I am desperately trying to not get to dialysis stage, like anyone else in a similar position, and feel that nephrologists just don't have all the answers. I have joined to learn from the priceless experience of others who can offer me advice and tips about how to preserve my kidney function. I am a long term diabetic and was dx with CKD a few years ago.

I've had some other medical trauma recently which resulted in excessive blood loss & being placed on high doses of a progesterone hormone. Had a minor surgical procedure under local anaesthetic & I suffered for the first time low blood sodium levels! While in hospital for a few days to be treated for this electrolyte imbalance (with sodium chloride IV drips), my serum creatinine levels starting climbing dramatically over a a few days (reached Stage 4 levels from Stage 3b levels). My Neph has finally concluded that the progesterone must have caused the low blood sodium levels & told me to stop taking it. I think everything was out of whack because of the high hormone drug running through my system at the time. During this time, my BUN/urea levels normalised to healthy normal levels! My Neph is totally confused.

Needing to follow a low sodium diet yet I am now needing to take sodium bicarbonate tablets, which has high sodium levels! Except for avoiding salt, I have no idea how to eat.

Anyway, that's a little by way of my story. Wish it could be a bit more cheerful.

I must say, I really like the name of the site and am taking time to read people's stories on here!

[Darthvadar]

Hi Athena...

  to IHD... Sorry to hear of your troubles... Yes, this disease is enough to make a saint swear, sometimes!...

You'll find lots of support, and very good information here... We're a friendly bunch, and very knowledgeable... We 'get it'...

Visit and post often... Keep talking... We like talkers!...

God bless...

Darth... Moderator...

[Michael Murphy]

I too avoided dialysis for as long as I could, my doctor was not happy with me but I was not going to start dialysis until I showed the first symptom.  The good news is that you can use this time to prepare for dialysis just in case.  My advise have your fistula installed,  and visit a clinic to see what's involved in PD or hemo so you can make a informed choice.  The fistula is needed for hemo but the time required for it to mature could mean having a chest cathater installed this should be avoided if possible.  I recently meet a women who had the fistula installed 3 years ago just in case but still hasn't  started dialysis.  The one thing I will also say is the fear I felt prior to dialysis was worse then the actual experience.  Most feel much better after the first treatment.  I go to dialysis three mornings a week, and the treatment is not a walk in the park.  However that leaves me the rest of the week to live my life. There is a tee shirt sold that states it better than I can."Dialyss: Damned if you do dead if you don't !!!"

[MooseMom]

Hi there, Athena!

OK, I'm a little bit confused.  Since your BUN/urea have returned to normal, where is your creatinine?  Are you back at stage 3b or are you still at 4?

Don't worry about taking sodium bicarbonate; it is different from the dietary sodium we eat.

Speaking of eating, I'm sure you are following a diet that is appropriate for diabetics, right?  Keep to that unless/until you reach stage 4 at which point you will need to follow a diet that is low in potassium and phosphorus.  I would imagine that if you are at stage 4, your nephrologist would have already advised you accordingly or at the very least would have referred you to a renal dietician.

Welcome to IHD.

[cassandra]

Welcome to the site Athena

       


Good luck, and love, and if you don't retain fluid, drink enough!

[SooMK]

Welcome!

[Athena]

Hi Moosemum. Thanks.
In answer to your question, last lab test showed serum creatinine at Stage 4 level, which was done on 21 Jan. Potassium, phosphate, calcium normal, sodium marginally low, Urea/Bun slightly above normal. I was ordered to stop the progesterone on 26 Jan. It's now a nervous wait & see to see if the creatinine will come down to Stage 3b levels again soon.

My Neph doesn't know anything about hormone treatments & I have no access to an endocrinologist right now. But I've discovered that high progesterone is converted partially to estrogen in the body. All this has really messed up my body.

I was told that it takes a good week or so for the hormone to be eliminated from body. Perhaps in cases of CKD it will take longer? Any drug can accumulate too much in renal.insufficiency?

[Athena]

Thanks everyone for the friendly welcome! 

[kristina]

Hello Athena,
and welcolme to the site. Like yourself, I have tried very hard to avoid dialysis,
(In my case it was altogether over 43 years...)
but I started with dialysis in December 2014 and was pleasantly surprised
that it did not turn out to be as bad as I had always imagined...
... I don't know if that could help you, but I have been a vegetarian for 43 years
and I have been told by doctors that this has most possibly helped me to stay pre-dialysis for so long...
The problem with a vegetarian diet is, that "everything" has to be weighed-up
before cooking it in plenty of water to "seep out" the potassium etc. during the cooking process...
At first this whole cooking-process comes over as very complicated, but it soon becomes a routine...
I do wish you good luck to remain pre-dialysis for as long as is possible
and all the best,
Kristina.

[PrimeTimer]

  Welcome to ihd, Athena! This is a very good site for those on the journey! Good luck to ya!

[Lunablu]

Hi there Athena!

In the time between my diagnosis and the start of dialysis I had a strict diet to keep me alive (besides medication: phosphate binders, potassium binders). I've learned that salt was the worst thing for my kidneys. At the hospital they said that more people have kidneyfailure now than it used to be due to eating salt. We eat so much more salt now then we used to. The extra salt is not added by youmat home, but by industrie: a bigmac and a prefab pizza for example contain more salt then we should eat in one day. Everything contains salt, so be careful with what you eat. At first I thought I would really miss the salt (I now eat not more than 4grams a day and that is already much more than you need) but it turns out I now taste all the other tastes again. It enrichened my eating.

After salt, a bad thing for your kidneys is protein. Don't eat too little of it, but especially not too much. Protein is in all animal products (milk, meat, eggs) so I guess that's why Kristina did so well on being a vegetarian.

Potassium is only bad for your heart I think and a problem after your kidneys are already failing..but ask your dietis to be sure.
Drinking a lot is a very good thing to do, but just as Cassandra said: only when you don't hold fluid.

Dieting is always hard in the beginning but once it is a habit, it's not hard anymore. Good luck with it best tip for tthe beginning: don't be too hard on yoyrself when you fail one day to keep to your diet..it's normal to fail once in a while

[kristina]

Hello again.
...  The fact that my kidneys were "keeping up their pecker" for so 43 years with my diet, might also be connected
to the particular kidney disease I suffer from (Chronic Proliferative Glomerulonephritis)...
... and I don't know if my particular vegetarian diet would keep the inflicted kidneys of any other kidney-patient to function so long ...
... I have also avoided for many years to touch any cows-milk or any other dairy products, ( I use Almond milk instead and it works well with my body) ...
...because there has been evidence that growth-hormons are being given to cows in order to produce more milk for the milk-market ...
(and there is rumour that these growth-hormones "inspire" the growth of cancer and by drinking cows-milk the growth hormones get into the human body...)
I agree with Lunablu: don't be too hard on yourself ... after all... we are all humans...
P.S. If you stop using any salt altogether, your body eventually gets nicely used to it and you won't miss anything...
... and strangely enough, my body does not miss salt and keeps healthy it... whichalways shows in my blood-check-ups...
... I have not touched any salt for over 43 years and I don't miss a thing...
(it goes without saying that eating in Restaurants is no option for me... a bit hard sometimes, but I see no other choice...)
Good luck wishes from Kristina