Dialysis and T1 diabetes

I am not a doctor and only know what I read.  Yes the average is stated to be 5 years.  Of course this alarming.  But you must consider a few things.  That is a general average.  It is not specific to a particular age group.  Age is a factor.  The general cause of death due to t1 and dialysis is sudden cardiac failure.  Some studies for example say a person in their 40's with t1 and dialysis the average is 8 years.  Now a person on dialysis in their 70's or 80's is likely not going to survive the full 5 year average, so they bring down the overall average.  For example just in general a person on dialysis without t1, the average is just 10 years.  As ALWAYS there are people who survive much longer.  We can all give examples of people who survive well beyond the average.  Also in the average are people who simply die due to other things, not even related to t1 and to dialysis.    To be blunt.  A person could go perhaps double the average or even further and you could be that person.  Or a person could fall way short of the average and not achieve the 5 years.  All any of us can do is follow the best medical advice we can get.    I know it sounds Pollyanna but not a single healthy person can predict their life span.  The proverbial you can get hit by a bus, or die from the flu, or car accident, or heart attack, etc.  All anyone can do is live each day as you enjoy, hope for the best and remember the end comes for all of us one time or another.  Knowing when it will likely happen based on an average of course makes it difficult to have a clear mind.

I would love to have numbers as good as yours.  I had my kidney removed on July 31st.  Since then my egfr has been 34, 35, 40, then 33, in that range.  Your numbers are better.  And yet your doctor talks of dialysis?  My understanding is that in general dialysis is not necessary until your egfr is 15 or less.  You are higher than that.  Now I have no experience understanding if having t1 will make that drop from your current numbers to 15 rapidly, but your numbers seem to be fluctuating in a steady range.  Remember egfr is primarily based upon creatinine levels.  these levels can fluctuate from one day to the next based upon not just kidney function, but for example if you drank a lot of water or too little.  My kidney doctor tells me as long as they remain on a fairly close fluctuations (say within 5 points of each other each time), and not a steady decline, that all is maintaining itself.

Terry, I'm surprised that you were not already seeing a kidney doctor when your gfr was at 45.  My Creatinine fluctuates.  Sometimes 1.7, most recently 1.9.  Actually all the kidney doctor really does is monitor my numbers but there is not much she can do to help.  Just to watch to not eat too much protein, stay hydrated, keep sodium intake low.  It is all just out of our hands.  But of course there is not a day that goes by that it is not on my mind.  Best to you too.  Keep us informed.  This is a great website to talk to others in your situation.

Terry, 

I've done quite a lot of reading about life expectancy on dialysis since reading your initial post. I, too, am finding 5 years as the average life expectancy for persons on dialysis--but that is not those with diabetes only. Of course there is quite a wide range in life expectancy which is due primarily to how healthy the person is otherwise. And the primary cause of death for persons on dialysis is cardiovascular complications.

So with that in mind, it seems clear that for those of us with diabetes, we should do everything we can to keep our A1C in check and preserve our cardiovascular health. (This is in addition to doing our best to manage our CKD.)

By doing these things we give ourselves the best chance we can of living longer; and hopefully, living a better quality of live for whatever length of life we have left.

I agree with Rick's comments. It certainly can be challenging to focus on living each day rather than focusing on the future; how much time we have left; and what we have In front of us medically.

My mother had cancer and was ultimately diagnosed as terminally ill.  I took her back to her home town in upper state New York during the final few months of her life. I still have such vivid memories of her saying yo me as we took a walk, "life is so short. It seems like it was just yesterday when I graduated from high school; don't wish your life away."

So now I try to live without wishing my life away. I'm trying to focus on each day; enjoy each day. I realize that no one knows how long he or she will live. I just returned from speaking at a professional conference. (And yes, I do have to travel differently than before I had CLD. The anemia forces me to sleep later, take an afternoon nap, etc. But it is still possible to function effectively professionally, for which I'm most thankful!) while I was on this trip I couldn't help but wonder which other participants also had CKD--given the statistics it is likely many did. And how many other participants were battling chronic heart disease? Other chronic conditions? 

some time ago I made my mind up that my CKD would not define me; I was going to learn to live with it as well as possible. As it has progressed this commitment has not always been easy to keep, but I remain resolved.

This is, among other things, a major mental battle. 

Marj

Terry ,I too am type 1 diabetic. I was told in 2007 that by Feb 2008 I would be on dialysis. My kidney function was at 14%. Ten years later I am still not on dialysis and my function fluctates between 16-18%.Listen to your dietitian and push yourself. Have a positive mental attitude. By the way l am the same age as you. Had type 1 for 28 years and ckd for 15 years. Good luck.

I live in Hull, England. Where do you come from Terry? Believe me Terry it is hard (as Marj said).But the next time you hear your children crying with laughter, sit back and think, YES!! This is hard work ,but wow its worth it.

Definately Terry. I work 5 days a week.but that would be great.Which hospital do you go to?