Absolutely terrified!

[geebee]

Hi,
I'm new brand new here.
On the last visit to my Doc about something else he said my GFR was 68 three months ago
but had slipped to 59 now and then 57 about a week later.   He said don't worry about it - it's probably age
related - I see this a lot.   So I thought okay I won't worry about it.  Then I did something real
stupid I swore I'd never do - started Googling!   Now I'm terrified that my life will be over soon.
Dialysis is something a can't even begin to consider doing.   I can't sleep at night with major depression
happening.  Never had that before.  It's kind of a snowball effect.  My mother died of breast cancer a few
months ago.  She had been diagnosed 6 years earlier but told nobody and had no treatment.  I have to
move away from here now due to very high apartment rental rates.  I just retired after 34 years in the airline business.
Just turned 60 so feeling my age for the first time.  Developed severe gluten sensitivity a few months ago so now
with avoiding all the gluten foods and watching my salt/protein intake as well there is not a lot to eat any more.
Then the last nail in the coffin was being told about the CKD.  I haven't asked my Doc about the latest blood test
results as I don't want to spiral downwards emotionally if they're bad - but they could have leveled off or bounced back a
bit.  Too chicken to find out as I want to be in an up mood (as up as possible) when visiting friends soon.
Now all of the above is less than nothing compared to what most of you are going through.   But thoughts of dying
in a few months or years because I really don't want to experience dialysis is taking a heavy toll on me.
On the other hand this could level off and take a long time to reach stage 5 - I guess we never know.
If you feel like slapping me and want to tell me not to be such a big baby I'll totally understand.   I just really want to
get a feel for what others think about refusing dialysis.   I feel like my quality of life would be zero.
Thanks for your thoughts and don't be afraid to tell me off if you think I have no right to talk like this.
Best regards,
geebee
       

[Shaks24]

You still have quite a bit of kidney function. Usually people start D at 15 or lower. There is a lot you can do to preserve your kidney function. Good renal friendly diet, control BP, exersise and etc.  I was terrified too but doing D in my mind is better than suffering the bad symptoms of ESRD or dying. I would focus on the things I could do to keep the kidneys healthy and continue to have occasional labs done to keep an eye on your function. Try not to stress over this as that is not good for you. GFR of 57 could last the rest of your life.

[obsidianom]

You are far from dialysis with those numbers but I would see a nephrologist soon to see why the numbers are changing and see if anything can be done to stablize them. Dont ignore this and do nothing . You may be able to head off a serious problem with a nephrology consult. This is the time to do it while you still have significant renal function remaining. The worst thing to do is ignore it and take the cance of losing what you have left.
Sorry to hear of your losses and medical issues. Its tough to deal with depression and all this. Hang in there . It isnt too late.

[geebee]

Thanks Shaks for the encouraging words!
I'm now on a self imposed reduced salt/reduced protein diet and I drink
lots of water and exercise daily.  I'm hoping that will help a lot.
You've given me hope and that's wonderful!


Thanks obsidianom!
I like the idea of trying to see a nephrologist soon instead of waiting until my GP suggests it
as I have a feeling that would be way down the road somewhere.  Great advice.
I see you are an actual MD yourself, and on dialysis!  Truly amazing!

[MooseMom]

I don't mean to be a wet weekend, but I think you have every reason to be concerned especially since your MD seems to have a rather cavalier attitude toward CKD.  Yes, it imay be age related, but 60 is FAAAAR from elderly.  Seems to me that you are rather young to have renal function that is declining so rapidly.  If it continues at this rate, what will it be in just a year's time?  In saying that, though, eGFR is not the most accurate way to determine function, so it is entirely possible that the next time you have it tested, it could be back up into the 60s.

Like I said in your other thread, your MD should really refer you to a nephrologist.  Kidney function doesn't decline for no reason whatsoever, so if you can determine what is behind this, you'll have a much better chance to successfully fend of further deterioration.  I'm a bit concerned that your MD seems to have already decided that it's merely "age".

When do you next see your MD?  Does anyone have a plan?

There have been a few people who have been on IHD who have been on dialysis and have eventually stopped treatment, but those folks have had co-morbidities that made their lives very difficult, and dialysis was sort of the last straw.

I'm tempted to say "don't worry", but when I found out that my egfr was in the low 20s, I panicked, so I will never tell anyone with your concerns to "not worry".  Been there, done that, and it was horrible.

Let us know what your next step will be.

BTW, what exactly is your thinking behind going on a low protein diet?  How do you define "low protein"?  Just be careful, OK?  It may be worth your while to consult a registered dietician once the cause of your CKD has been determined.  Just a thought.

[kporter85db]

You need to see a Nephrologist now. Don't wait. There is a reason your kidney function is depressed and a good Nephrologist can determine that reason and help you preserve what function you have left.

I think it should be a crime for a GP not to refer someone with depressed renal function to a specialist!

Take care of this now and maybe you wont have to go on dialysis.

Information is power and you need all the power you can get.

[geebee]

Thanks MooseMom!
You're not a wet weekend. :-)
I agree with you.  "Don't worry about it" seemed way too flippant.
My plan is to be firm with my Doc to send me to a Nephrologist as soon as possible.
Maybe there are guidelines that they don't do that until you get to stage4 or stage 3b or something.
But like you said why just wait in case it's going to drop further?
I went on a low protein diet just in case that will not work the kidneys so hard and maybe help a bit. 
Trying everything I can think of on my own.  What I mean by low protein is cut down the portions of meat
I normally eat to about half the amount.  But I don't have protein in my urine so maybe I shouldn't be doing that yet.
Yes 60 is not old.  I don't have diabetes or HBP so don't have a clue why this would happen.   Still waiting for the
results of a couple of blood tests my Gastroenterologist had me do for some gut probs and eGFR was on the list.
I'm scared to ask him.  They also did an ultrasound and x-ray of the kidneys and bladder etc so I get those results mid-month.
I hope they can see whats happening from those as a biopsy doesn't sound very nice.  Yes I was going to consult with a dietician
soon but wanted to wait to see what the Docs had to say first.  They did say eGFR's go up and down and it could be above 60 when
they check it next just like you said.   So I'm hoping and praying for that.  I just retired last weekend and this was not how I planned
to retire.  On the upside I have all the time in the world now to run around to Docs and look after the important things.   
It feels like the clock is ticking and nobody cares.   As if they want to wait until it gets real bad and then hand you off to the Neph.
Hopefully that's not the case.   If my Doc won't refer me then I'll have to find one that will.   
Thanks for being there for me.

[geebee]

Thanks kporter!
Absolutely! That will be my plan.
Have to see both the GP and the Gastro in the next 10 days or so.
I hope one of them refers me to the Neph or I'll have to go looking for
another Doc to do it.
Good advice, thanks. 

[kristina]

Hello beegee, I can understand your concern and comprehend your reaction because I acted very similarly,
in fact I completely panicked when I was told in August 2006 by doctors, that I had 6 months to go until dialysis...

At first I was completely shocked and traumatized, because the doctor I was registered with for so many years
- supposedly to look after the welfare of my kidneys - should have warned me about the slow deterioration of my kidney function years ago,
especially since it was so obvious from my Creatinine and Urea blood tests since 1999, as I found out much later...
...But he just sat there in his surgery and watched the slow deterioration of my health without saying a word.
He even had the audacity to tell me that the deterioration of my general health and all my (typical ESRF) symptoms were only a figment of my imagination....

In August 2006 I started to research on the Internet and found ways to refine my vegetarian diet further
and somehow the deterioration of my “two little fighters” came to a stand-still...

Mind you, it could be that it had nothing to do with my refined diet and I just had good luck...

I don’t know what sort of kidney disease you are suffering from, or what makes your kidney function deteriorate,
but nevertheless, your GFR of 57 gives you many opportunities and clever ways to slow down
the deterioration of your kidney function very considerably and it is very important for you to find out which method suits you best.
Perhaps you can find out more from your nephrologist and dietician or the Internet?

For me, a vegetarian (easy digestible) diet, togehter with my minimum body weight has kept me going for many years ...
...without dialysis, in fact I don’t think I ever really had a GFR of 57...
... When I was found in a coma with uraemia in 1971 my kidneys had failed completely and after a long time I was discharged from hospital
when my kidneys were functioning ~ 5 % again... no dialysis ... and I could slowly build up again... of course, it took me many years to build up again
and my kidney function never really recovered to more than ~ 40% but it was achieved without dialysis...

I also was told I had to be very careful with my vegetarian diet for the rest of my life, no alcohol, no smoking, no tins of food, no fast food,
no pre-cooked food, no salt etc. ever since and after being told I was (again) in ESRF in August 2006, I had to refine my diet further and have avoided dialysis...
 
Mind you, I have no idea how I am going to be tomorrow or the day after, or the day after that...
...we can only do our best and hope for the best...

Best wishes and good luck from Kristina.

[MooseMom]

Geebee, it is certainly true that for those at Stage 4 and 5 are advised to cut back on protein consumption as it does impose more work on the kidneys, but for where you are, and since you enjoy exercise, be careful, OK.

In saying that, though, it is also true that most Americans eat too much animal protein, so if you are one of those, cutting your intake by half may actually put you closer to recommended allowances.

I'm glad to year that you have had some tests done, and hopefully that will give you more information.

I spent at least 8 years at stage 4/5, so I do understand the fear that comes from goggling "dialysis".  And that's why IHD is a godsend for all of us who are affected by impaired renal function.  We really do understand what you are going through, so if you have any questions or just want to discuss your fears, we are all here for you.

[geebee]

Thanks Kristina!
That's quite the story!  I can't believe that with all their education some doctors can say some real ignorant things.
It's "all in your head" whenever they can't figure out your problem.
It's amazing what the right diet can do.   It seems a lot of the food we eat these days is killing us.
When we were kids the food was made differently (more wholesome) and our young bodies could digest anything.
Now most processed food is made to sell fast and last forever and our older bodies are having a real hard time digesting a lot of it.
I thought maybe with this gluten sensitivity I developed recently there might be a connection with the low GFR.
They both started around the same time.   I guess my Gastro will let me what he thinks on that soon. 
Like you, there's absolutely nothing I won't do to try to avoid dialysis.   Just the word alone scares me to death.
Thanks again for sharing your story.   I hope you don't have anymore setbacks.
Regards,
geebee   

[geebee]

Thanks MooseMom,
Yes I have enough dietary restrictions already with the gluten free thing without adding more to it.
Just making myself even more miserable. :-)  But I won't quit eating meat altogether.   I find the smaller
portions are okay.   I still get to enjoy the meat.    When I developed the gluten sensitivity it was right
after that the kidney probs started so not sure if there is a connection.   Also I've been taking a proton pump
inhibitor (Losec) long term (6 years) to fight stomach acid pain and reflux and it works great.  I hope I haven't wrecked
my kidneys using that for so long.   My Gastro has said he'll try to answer that question after he gets my blood/ultrasound/x-ray
results in about a week.  This whole kidney thing is a big mystery to most of the Docs so I better get to a Neph as soon as possible.
Talking to people on here is way more reassuring than talking to general practice Docs or surfing the web.
Thanks for being there.   

[obsidianom]

It is possible this is an immune issue. The gluten problem could have effected the immune system or been caused by an over active immune system . Either way that could have then attacked the kidneys. Just a thought.

[geebee]

Yes, that thought has crossed my mind many times. 
I've always thought my immune system is not operating at 100%
Hopefully the Gastroenterologist will be able to tell me something soon.
Also I've had many prostate problems over the years.
It's a little enlarged but not too bad they say.
I take Xatral so I don't have problems urinating and that works well.
Over the past 2 months I've been noticing an increasing stinging in
the urethra and I can tell something down there is getting worse slowly
over time.  Last time I had prostatitis it was quite painful and even being
on Cipro for 2 months didn't fix it.  I had to take 9 months off work.
Might be taking a trip back to the Urologist soon if it gets any worse.
None of the Docs so far has said any infection is showing up in labs tests.
but something's happening because I feel a little run down and weak.
Nothing too serious yet.  Could just be stressed out. 
Thanks for bringing up the issue, obsidianom.
I'll ask about that and possible infection next time I see the family Doc.

   

[amanda100wilson]

 I understand your shock, and I can understand that you do not want to do dialysis.  The fact is, that none of us want to do it, but we do.  Of course, there is always going to be the alternative choice of not doing it, and let nature take its course.  It is not the place of anyone here to help you make your decision for you, but only support you in whatever choice you make, should that time come.  I agree with Moosemom. Get a referral to a nephrologist, and not rely on some dabbling jack of all trades, to evaluate your decline in kidney function.

[geebee]

Thanks Amanda!
Yes, the answer from most seems to be to see the Neph a.s.a.p. and I would feel more comfortable doing that.
Let the expert tell me how bad it is.  Have to visit with friends in 3 days so don't want to check my last lab results
prior to that in case they're not good and I'll bum everybody out.  My primary "jack" doctor hasn't called me with the
results so either they're good or he just forgot.  He always says he won't phone unless there's a problem.
I'm scared to ask.  Anyway, thanks for being there!   

[Simon Dog]

I was referred to a neph when my internist became concerned over a createnine of 1.4.    This gave me 17 years to adapt to the idea of dialysis - the point when doc finally had "the talk", it was "ok, got anything to tell me I haven't known for years?'.

It is possible to have a good life on D.   I've had PD; in center hemo and home hemo every other day (though I run 4x/week because it fits my life better, my doc approves, and it is medically better than having a long gap between tx).   If you think home treatment may be a better way to go for you, ask the neph you consult if (s)he will support that if it comes do D in your life.

If you progress to ESRD I suggest you defer judgement about dialysis until it happens.    I expected my life would suck once I was on D.  That has turned out not to be the case.  Wife still makes me take out the garbage though.

[geebee]

Thanks Simon.
You make a good point.
I only know my last eGFR was 57 and that was down from 59 a week earlier.
But I should get the creatinine number as well just for a reference.
I live in Canada and normally they won't refer you to a Neph until you reach
stage 4.  How dumb is that?  I'm going to have to insist.
I'm not married anymore so wouldn't feel safe with home hemo on my own.
PD sounds like infection is a worry so in-center hemo would be my only choice.
I hope I don't have to face that decision for a long, long time or not at all. 
But your words have calmed me down a bit - thanks!
   

[kristina]

Hello again beegee,

Thanks for your kind thoughts...

... If your doctor can’t refer you to a nephrologist until your kidney function has reached stage four,
might it not be a good idea to see a nephrologist and pay privately for the consultation?
It might assist you to see a clear picture...

I mention this because that is exactly what I did when the aforementioned medical (NHS) specialist I was registered with for so many years
did not tell me anything about the deteriorating of my health and never explained my blood tests
which clearly showed any medic that my deteriorating kidney-function was also the reason for the deterioration of my general health ...

To get a professional medical answer I made an appointment with a private doctor
and after taking my blood tests and examining me, he explained in detail the results
and informed me of my end stage kidney failure.
 
... I still believe that seeing this private consultant was money well spent
because I finally had a diagnosis and knew where I stood.
..., and it certainly gave me a chance to fight back and research
and find the latest results in how to refine my diet
and how to try and stop the further deterioration of my "two little fighters"... 

I agree with all the others, that if we need dialysis there is nothing else we can do... 
but until then we are given a chance to fight and keep our kidneys functioning for as long as possible with a certain quality of life...
... as Dylan Thomas said: do not go gentle into that good night...

Bet wishes and good luck from Kristina.

[kristina]

I had to smile when I just saw that I wrote “bet wishes from Kristina”
instead of “best wishes from Kristina”...  because, whilst writing, I thought
that “it is really a gamble whether we win or lose"
in this "how to avoid dialysis for as long as possible" issue...
.... and so the word “bet” slipped in whilst I was typing...

[geebee]

Hi Kristina,
I'm just heading out the door to get the latest GFR results from my Doc.
He hasn't phoned so he must think everything is okay. 
Or he just forgot - yikes!
Curiosity is getting the better of me.
Where I live health care is free so nobody ever wants to pay for anything.
However by the time you get to see a Doc you're already better or you're dead.
Okay, slight exaggeration.
I'm going to go to the walk in clinic where I used to go before I found a family Doc
and get copies of my records to give to the new Doc so he has more info to go on.
I want to know what my numbers were as well.   
I think you're right.  If my Doc refuses to send me to the Neph I'm sure the Neph
wouldn't mind a few extra bucks up front just before Christmas. 
Just gotta quit stalling and go do it.  Time is ticking.
Take care and I'll let you know how it goes.
geebee

 

[Simon Dog]

PD sounds like infection is a worry so in-center hemo would be my only choice.

There is no free lunch - every modality has risks and complications.  Infection risk can be minimized if you are careful, and infections can be survived.   PD is a LOT easier to live with than in-center or home hemo, but typically, ones peritenium only lasts 5 years or so.  Some unfortunate bastards can't even to get it work well enough from the start (been there, done that).   If you reconsider and get PD, ask your doc for an antibitic kit for infection.  This is not a substitute for a sustained treatment to cure peritonitis, but allows you to start treatment immediately when an infection is detected and not the next day or in an ER.  (my doc prescribed 2g vanco and 1g ceftaz in my "just in case" kit)

[geebee]

Hi Simon,
Actually it all sounds terrible to me.
Still not sure if I want to go down that road.
There is a site called Living Kidney Donor Search.
I understand why they would be pro-donor and
anti-dialysis but they really scare you with what they
say (if it's true).
http://www.livingkidneydonorsearch.com/living-donation/dialysis-a-poor-option/   
So I just hope my condition won't deteriorate very quickly.
You said you got 17 years.  If I was fortunate enough to get 17 years
that would put me at age 77.  I would be very happy with that.
Easy to say now .. wait until I'm 76.5 right?
 

[geebee]

Okay,
I just went to my Doc and he hasn't got my latest results back yet.
So I get to bite my nails for another few days.
I went to the walk-in clinic I used to visit and they had some bloodwork
results from 2007.   I had just passed a kidney stone about a week before.
They say a stone won't change your GFR results but I had been rid of
this stone for 7 days anyway.  No more stones since.  Bottom line is
the first test showed Creatinine 1.2 (119) and GFR 59 and it was flagged as
outside normal limits.   I wondered why nobody mentioned this to me
6 years ago.  Then I saw why ... the second test a week later came back with
Creatinine 1.0 (99) and GFR 73 so now flagged as normal.   
So I'm hoping something similar will happen this time.
Good news is I won't have to fight my Doc for a Neph referral as he said
if the next test comes back under GFR 60 he will refer me.  If it's in the
acceptable range he says we'll just forget about it for a few months.   
In 2007, right after the kidney stone, I had a terribly painful prostatitis issue and it lasted 9 months.
Tons of antibiotics had no effect as it wasn't bacterial.   Now I'm getting that back again after
all these years and it really hurts.  It's been getting steadily worse over the past 2 months.
I hope an infected prostate doesn't mess up the kidneys.  Everything's connected. 
Might have to get a referral to my old Urologist.   What next?  Just want all this to stop. 
Sorry, shouldn't be whining when you guys have been though so much more. 
Take care.  I'll update this when I know more.     
Thanks for being there.

[MooseMom]

Oh gosh, waiting for lab results is just awful.  Ugh.  Oh, the anxiety!