My first and biggest question at this time.

[BASSMAN]

I know that this will vary with each individual and that there is probably no predicting this, but, once you hit stage IV,  how long did you have before you hit stage V and began dialysis?

I asked my doctor and he said it could be a year or I could even maintain stage IV kidney function for the rest of my life.  Not really the answer I was looking for. 

I went from 29 % kidney function to 27% kidney function in 3 months (I have to see the doc every 3 months from now on).  The doctor said it was not enough of a drop to be worried about.  He said he would call that holding steady because of possible variance in the lab.

This is a new doc for me, my first doc the only doc I have had for this condition retired.  He was cool, he didn't change my meds, he just added sodium bicarb for help with the acid levels in my bloodwork.

I take zocor, lisinopril, furosemide and have for 20 years or variations of other similar drugs, depending on what deal my insurance has made this year or that with the different drug companies.  (  I will leave that for another rant/thread).

Anyways, I am rambling

[cris]

My Mother was able to hold on for long with the 25% function. It was because of her age, 78 yrs. that the degenaration became so fast, and also because of improper diets, and too many medications for arthritis. Just watch what you take, food & medicines and be keen on your labwork. Don't miss the labs. With prayers, all will work fine.
love,

[kellyt]

I've been in stage V for a while.  I can't remember exactly when I got there.  I was diagnosed in the early 90's, so my progression has been slower than some or most.  My GFR went from 18% to 10.5% from Nov 8th, 2007 to Jan 7th, 2008.  That was a fast drop for me.  I am currently pre-dialysis and going through the transplant evaluation now.  I only have my cardiology work-up left.  One of my brothers has also started testing for a live donor.  If all goes well and he is a match my neph. wants to transplant in March.  I should be on dialysis sometime after that if there is no transplant.

To answer your question, your doctor is probably right.    Sorry.  I'm no help.  

[BASSMAN]

Thanks guys!

I took an experimental treatment when I was first diagnosed 20 years ago.  It was lukeran (an imunno suppressant)  and prednisone (cortico steroid) alternating monthly with a big dose of prednisone intraveiniously.

It was supposed to either stop or slow the progression of the disease and my loss has been real gradual over the years.  My original doctor told me that "unfortunately, the more kidney function I lose, the faster it will go too"

So, I am just wondering when my freedom ends.  It has been pretty easy to block out of my mind up until now.  The reality is starting to sink in and all kinds of thoughts are going though my head.  I have never wanted pity or sympathy for anything and now I start to get this feeling sorry for my self thing going on.  I can shake it but it tries to return.  CHIRST, I still have it pretty good but getting kind of scared about it all.

I ain't no wuss and I feel like one for having these feelings

[Ang]

bassman


              the  best  thing  i  can  tell  you  is  that  it  took  10  years  to  get  from  diagnosis  to  dialysis,
same  as  you  i  went  to  the  neph  every  3  months, about  18 months  ago  i  visited  him  and  he  told  me  it  was  time  to  move.  theres  never  a  right  time  to  start.  the  neph  should  consult  your  labs  and  decide,  i'm  not  leaving  it  to  late  and  i'm  not  going  to  early, so  you  put  up  with  the  bs  that  dialysis  is,  un necessarily.
good  luck  with  it  all

[BASSMAN]

Thanks for you reply ang!

I get what your are saying.

[oswald]

you can't help feeling the way you do.    it's normal.  i'm sure everybody here has had the same thoughts once in awhile.  i don't think anybody here pitys anyone, but there sure is alot of empathy.  we are a family.  the more you read the posts of others that were where you are now, the less fear you will have.  education is the key, learn all you can about dialysis and transplantation.  as far as freedom, i think that all depends on weather you do in-center hemo dialysis, at home dialysis, or get a transplant.  good luck. 

[BASSMAN]

you can't help feeling the way you do.    it's normal.  i'm sure everybody here has had the same thoughts once in awhile.  i don't think anybody here pitys anyone, but there sure is alot of empathy.   we are a family.  the more you read the posts of others that were where you are now, the less fear you will have.  education is the key, learn all you can about dialysis and transplantation.  as far as freedom, i think that all depends on weather you do in-center hemo dialysis, at home dialysis, or get a transplant.  good luck. 

Cool,

That is why I signed up.  I read a few threads and said yes, this is where I need to be.  Amongst the folks that have been there done that.

Thanks guys!  I have a lot more questions but I won't flood the boards my first day.  I will annoy the crap out of you all over a period of time

[angela515]

I think your doctor said it best, even though the answer sucks... it depends greatly on the person, the history, the diet you eat now and so on. I would say just educate yourself as much as you can (and these are the boards to do it at) and try to hold off as long as you can by doing your part.

Feel free to start threads and ask as many questions as you want.. that is why we are here. 

[BASSMAN]

Thanks angela515!

I don't want to get into confession just yet but I have lived in a sate of denial for quite a while.  Even though I know what I am supposed to be doing,  I have been doing/eating whatever I wanted for years without regard to my condition.  I know that has got to change to try and preserve what kidney function I have left and if and when I do start dialysis.

[jbeany]

It took me about 10 years to drop from the 20's to a number low enough to start as well.  It's one of those things the docs can't give an answer to, since they haven't got a clue.  As for the denial - you've got plenty of company there - we've all been in that state!

[Romona]

I lived in denial for awhile too. I hoped for a miracle or something. Your neph will follow you closely and keep you informed. For me every visit the time table was shortened. I had an improvement going from creatinine of 5.5 to 3.5. I thought it would have given me more time. Fortunately I was transplanted before I had to start dialysis. I was begining to show signs of built up toxins,

[paris]

Three years ago, I was told I would be on dialysis in 6 to 12 months.  Still holding at about 15%, been on transplant list for 2 years.  Watch your diet, be as kind to yourself as you can, allow yourself to rest and keep coming here!  Best medicine I have!!   Hope you are able to stay at the level you are now for a long while.   

[vandie]

Paris is right; low protein diet and taking care of yourself will help a lot.

I was diagnosed in 2005.  I held steady at 10-12% for two years until I was able to transplant predialysis in August of last year.

[Sunny]

      In 2001 I was diagnosed with ESRD and they told me I would need dialysis or a transplant probably within the year. However, I have been hanging in there with about 20% renal function since then. I am careful about my diet and live a very relaxed lifestyle. This has meant giving up work so that what little energy I do have can be expended on my children, husband ,and family. I go for regular blood work to watch my levels. Hopefully, you can last a while longer. Educating yourself about ESRD in forums like this and elsewhere can help to ease some fears about what the future may hold.

[Zach]

As already said here, some Nephrologists suggest a low protein diet, maybe 40-60 grams per day.

Some Nephrologists also suggest a prescription of Ace Inhibitors (a certain type of Blood Pressure medication) which has been shown in some patients to slow the progression.
 

[donnia]

For me, I went from 19% in Oct. 06 to 8% and dialysis in Sept. 07.

[KICKSTART]

From being told i had kidney failure ..(out of the blue!) to dialysis took 4 years. I was on large amounts of Prednisilone as well and it was awful. I dont think there is an exact time you will start dialysis , everyone is different and all have different reasons for kidney failure.

[kellyt]

I don't want to get into confession just yet but I have lived in a sate of denial for quite a while.  Even though I know what I am supposed to be doing,  I have been doing/eating whatever I wanted for years without regard to my condition.  I know that has got to change to try and preserve what kidney function I have left and if and when I do start dialysis.

You and me both.  Mostly because I never felt sick - and still don't other than being tired most of the time.  I haven't yet been placed on a strict diet and, again, hope to avoid it.  I think I can eliminate the foods I'm supposed to, but I'm a big tea drinker.  I've cut back, but I don't want to have to start measuring my fluid intake.   

[stauffenberg]

As some have already suggested, a protein restriction diet may help to extend your time until having to start dialysis.  Usually these diets limit the patient to 0.4 mg of protein per kilogram of body weight per day, or 28 grams of protein a day for a 70 kg person.  This amount is greater than it seems, because the actual protein content of high protein foods is much less than their entire weight, as you can find on any dietary table on the internet.  Some nephrologists oppose a protein restriction diet, however, on the theory that the loss of strength to the patient from muscle wastage and low energy due to protein restriction makes the patient dangerously weak on starting dialysis.

There is a traditional Chinese medicine, cordeyceps, which is used in China still today to preserve renal function in patients who are gradually declining into dialysis.  It has also been confirmed in some peer-reviewed scientific publications to have a positive effect in preserving renal function.  You can buy it in the pharmacy or vitamin shop in the Chinese area of any large city.

[oswald]

i was diagnosed with esrd when i was 17.  my kidneys finally quit when i was 28.  maybe it was denial but, i didn't really care about my health until i was on dialysis.  maybe if i listened to my docs back then, they said low protein too, my kidneys would've lasted longer.  i'll never know now. 

[Deanne]

I'm not sure how long I've been in stage 4, probably at least 3-4 years. The progression has been gradual and my neph never said "welcome to the next stage!" so I have no idea when I went from stage 3 to stage 4. I'm at about 25%. My neph doesn't talk about time, but I get the impression that I'm not "normal." (I already knew that!). Every time I see her, she says she's amazed that I'm still holding so steady.

I think the progression rate is very individual and diet / lifestyle can make a difference, but genetics also play a big role. According to today's rules, I was told to do a lot of wrong things when I was first diagnosed in 1972. I was practically force-fed protein because they said I was losing so much in my urine that I needed to make up for it in my diet. I poured salt on everytying and no one saw a problem with that. I was force-fed water. I see now that excessive water can cause more damage. I haven't the foggiest idea what kind of medications they had me on as a child. Something that tasted like banana (yum), something that tasted like mint -- yuck! Somehow I made it to adulthood with nearly 100% function and didn't start sliding until I was in my 20's - 30.

[BASSMAN]

Thank you all so much for your replies and great info!!

You guys rock!

[del]

Hubby was 10 years from the time he was told he needed dialysis before he actually had to start.  He was on a low protein , low salt diet and followed it faithfully.

[st789]

When my sister asked dr. like how long my transplanted kidney will last.  His response was a blank "don't know".