Who gets the kidney?

[Sunny]

        Here's a question I've been mulling over for a few years. Should a person do everything in their power to save what's left of their kidneys? Or should a person just live their life to the fullest as they always have? This could mean kidneys might last till the age of 60 or more, though at great personal sacrafice for a person. However, if you are in your 40's and younger you stand a better chance of getting a transplant.
        So, should you proceed as usual and get that transplant in your 40's or younger? Or should you give up all your usual ways, and cross your fingers that they would still be willing to give you a transplant if you last till 60?

[Ang]

i  reckon  you  have  to  try  as  hard  as  hell  to  preserve  your  function  and  hope  you  get  transplanted  one  day  be  that  at  40  or  60

[BigSky]

It depends on how much function is left.


If a reasonable amount is left its best IMO to try to maintain the amount of function left.  Having poorly functioning kidneys to a certain degree is far better than being on dialysis.  Also transplants are not a cure at this time, merely another form of therapy and most likely those 40 and younger in complete renal failure will likely have more than one transplant in their lifetime.

The longer one is able to put off dialysis gives them more time to wait for science to make transplants better or even someday to the point of growing a kidney specifically for the person as to eliminate tx drugs or rejection of the organ.


Even with diet modification pre dialysis, its far better than the diet regime once on dialysis.

[Krisna]

That's a tough one!  I know I would've at least liked to have had the choice!  But my joke of a Pediatrician took that away from me!  At least then I may only be waiting on #2 instead of not being eligible anymore!  But then again, my dad wouldn't have been able to donate to me as of 12 yrs ago so, it's hard to say! 

I agree with BigSky, it depends on how much function and how sick you are!  Don't do what I did and wait longer than you should because you're in denial! 

[Romona]

One of the surgeons at transplant clinic I go to calls anyone under 60 one the "babies". The number of transplants of people over 60 has increased.

[stauffenberg]

You should try to maintain natural renal function as long as possible, since both dialysis and transplantation represent imperfect imitations of what a healthy, native kidney actually does.  On dialysis your quality of life will be about 10 to 20% of what it was prior to endstage renal disease, and even after a transplant your life quality will only return to about 80% of what it was before renal failure.  Also, with a transplant, you have to take toxic immunosuppressive drugs for the duration of the kidney, which diminishes the value of that option.

As for trying to hold out until scientific progress makes treatment of people with endstage renal failure better, I'm afraid that is not at all realistic, unless you can stretch out your remaining renal function for another hundred years.  Medical progress is insanely slow, and even if a new and better treatment or cure were developed and ready to do as of today, it would still face seven years of clinical trials before it would be clinically available, thanks the FDA (foot-dragging administration) restrictions.  Since there are no radical new therapies or cures ready to go now, but all the ones you hear about are forever "5 to 10 years" away, you are facing a minimum of about a 20-year wait before anything significant will change for renal patients.

[st789]

As always Stauffenberg is so on the point.

[paris]

First--ALWAYS take the best care of your kidneys as possible.  I do all I can to hold on to what function is still there. You have to make changes and be proactive.

Second--when you are in your 50's you won't think 60 sounds old.  Matter of perspective, I guess. I am not ready to roll over yet. Too many things to do and places to go.

Last--you might offend others by saying you are just going to live life to the fullest and the heck with taking care of your kidneys.  You may not be eligible for a transplant with that train of thought.  I live life fully, with a few adjustments that are worth making.

My 

[Zach]

First--ALWAYS take the best care of your kidneys as possible.  I do all I can to hold on to what function is still there. You have to make changes and be proactive.

Second--when you are in your 50's you won't think 60 sounds old.  Matter of perspective, I guess. I am not ready to roll over yet. Too many things to do and places to go.

Last--you might offend others by saying you are just going to live life to the fullest and the heck with taking care of your kidneys.  You may not be eligible for a transplant with that train of thought.  I live life fully, with a few adjustments that are worth making.

My 

 

[Krisna]

First--ALWAYS take the best care of your kidneys as possible.  I do all I can to hold on to what function is still there. You have to make changes and be proactive.

Second--when you are in your 50's you won't think 60 sounds old.  Matter of perspective, I guess. I am not ready to roll over yet. Too many things to do and places to go.

Last--you might offend others by saying you are just going to live life to the fullest and the heck with taking care of your kidneys.  You may not be eligible for a transplant with that train of thought.  I live life fully, with a few adjustments that are worth making.

My 

I don't know abt offending other by saying, "you are just going to live life to the fullest and heck with taking care of your kidneys" but it certainly won't help you get on the list or even get a living related transplant!  They won't agree to do it if they don't think you will take care of it and do what they tell you to do!  Take it from someone who found out the hard way!

Of course it is always your right to refuse treatment but if you wait too long dialysis will not help you!  I have Friend whose dad waited too long!  Dialysis just didn't help him at that point!

So, that's my  for the day! 

[Sunny]

Thanks for the insights everyone.
           Seven years ago when I first got kidney disease, I decided I would fight to keep my kidneys. When I was at my worst, my older sister wanted to donate with a perfect 6/6 match and our PRA's were compatable. However, she takes medication for HighBloodPressure and I just didn't feel right about taking her kidney. I am on the transplant list, on standby but accruing time.  I am happy to say my kidney function has come back a bit with creatinine stable at 2.8. Who knows how long this will last! Anyway, what I didn't bargain for was the fact I still feel lousy most the time and what it is like to live with it. I still have memories of what it was like to feel "normal".
            I started wondering if I would feel better on dialysis or with a transplant. Your insights on the subject, though, confirm to me that these methods are not perfect either. If I had a transplant now, I would likely have to hope for another one in my fifties or sixties. If I started dialysis now, it wouldn't improve on what I already have. All of this doesn't matter anyway because the Doctors say I am doing "fine" with my creatinine at 2.8. (How do they know what it feels like?)
           So, I will keep plugging away and continue to fight tooth and nail for what I have. Mostly, I don't think it would be fair to others not to. How could I accept a kidney knowing I didn't try everything in my power first? How could I look my husband in the eyes, knowing I wasn't doing my best?
            I am grateful for your advice and it's good to know you are there.

[paris]

Sunny, I hope you can keep your levels where they are at for a long time.  Keep going strong and remember we are always a keyboard away.     

[stauffenberg]

Dialysis is usually initiated primarily on the basis of how the patient feels, but the possibility of dialysis is not taken seriously until the creatinine levels are somewhere in the 600 to 1000 range, so you have at least 320 units to go before the physicians will start listening to how you feel.  The symptoms depend very much on the individual patient, with some people feeling fine all the way up to 900.