Life Span

[angela515]

i've pretty much decided a tpransplant is out of the question, for me.
i have yet to have a 'sit-down' with my nephrologist on the subject, but there isn't much he could say that would change my thinking on this.

So I guess you have made up your mind. I respect that and anyone else's wish to not have a transplant... I hope you continue to do well on dialysis. 

[LightLizard]

like i've said, quite a few times, too, having hep C changes the odds enormously. ignorance of that fact is quite simply, for me, suicide. why should i have a transplant if its going to have an even bigger chance of an early death for me? so, in my case, its a 'no-brainer' to NOT have one.
 

[thegrammalady]

i too have decided against a transplant. at my age, 56, it just doesn't seem necessary, not to mention financially responsible. i mean, if i could go back to work full time next year, just how easy would it be to find a decent job. i'd rather just not have to deal with it. now if i were in my 20's or even 40's there would be no question.

[paris]

Well, I am not sure what to say--been on transplant list for 2 years,PRA of 100, so need living donor.  Same age group as Bajanne and L.L.  Great life, great family--don't really want it all to be over quite yet.   Maybe because my chances of ever getting a new kidney are slim, makes me want it even more.  I will do whatever it takes to keep going.  A man at our church got a liver transplant 4 years ago and then a kidney transplant 2 years ago. He is having the time of his life. Just got back from an Alaskan cruise.  Chuck is 72.  Reading peoples posts made me wonder if I am being selfish.  Something to ponder on tonight. 

[LightLizard]

i don't see it as a matter of your being selfish, paris. i'd like to hang around longer and watch my kids grow a little more too, but my options are limited, really. if you don't have other health issues that complicate the results and make a successful transplant less possible, why not go for it?

love

~LL~

[angela515]

i too have decided against a transplant. at my age, 56, it just doesn't seem necessary, not to mention financially responsible. i mean, if i could go back to work full time next year, just how easy would it be to find a decent job. I'd rather just not have to deal with it. now if i were in my 20's or even 40's there would be no question.

56 seems young, my parents are 55 and 56... I don't consider them old to no means. If my transplant for some reason don't last the rest of my life, I'm only 28, I will opt for another one... I don't consider a person to be too old for a transplant until they reach the point of they don't know whats going on and delusional and cant take care of themselves.

I still respect your decision though Just wanted to say I don't consider you too old for anything

[Rerun]

Dialysis is only as good as your access.  Right now mine has quit.  I try to get the declot procedure tomorrow. 

Transplants are great but there are still worries everyday and the fear of the day it starts to lose function.  Could be years, but the fear is always lurking over your shoulder.

Since I quit my job to go on disability if I get a transplant then Society calls me cured and I get kicked off disability in 12 months and expected to rush out and get a job with benefits.  That scares me out of really wanting another transplant.

[goofynina]

Dialysis is only as good as your access.  Right now mine has quit.  I try to get the declot procedure tomorrow. 

Transplants are great but there are still worries everyday and the fear of the day it starts to lose function.  Could be years, but the fear is always lurking over your shoulder.

Since I quit my job to go on disability if I get a transplant then Society calls me cured and I get kicked off disability in 12 months and expected to rush out and get a job with benefits.  That scares me out of really wanting another transplant.

12 months?? I thought they keep you on for 3 years after the transplant 

[angela515]

Dialysis is only as good as your access.  Right now mine has quit.  I try to get the declot procedure tomorrow. 

Transplants are great but there are still worries everyday and the fear of the day it starts to lose function.  Could be years, but the fear is always lurking over your shoulder.

Since I quit my job to go on disability if I get a transplant then Society calls me cured and I get kicked off disability in 12 months and expected to rush out and get a job with benefits.  That scares me out of really wanting another transplant.

Kicked off what disability in 12 months? SSD? If so thats not true.

[George Jung]

When I read some of these post about why not to have a transplant it is reminiscent of how I once looked at the idea.  While it's true that each person is entitled to their own choice, I, for one, would rather be dirt poor, in a job that I hate, swallowing pills everyday, wondering when that puppy was going to let me down, and anything else that comes along with it rather than settle or "make due" on my current way of life.  Mind you that I am not taking any pills, I have a relaxed fluid restriction, I don't have a significant other or children (which seem to be great motivating factors) and I have fallen into a manageable (relatively) comfort zone.  I will most likely live out my days without starting a family, nor will I ever be certain of my health.  I ride a motorcycle (when I feel up to it) and I could possibly die even with a fresh new kidney inside of me, but will I not ride anymore if I were transplanted because of what might happen?  Honestly, NO WAY.  So I ask myself, why do I want a transplant?  And my only answer is so I can live to see what is possible.  Come ten years (or two or twenty) from now I very well may be much worse off than I am now but maybe not.  I could settle on dialysis and on allowing life to slip away but I'd rather see what happens when taking the chance.  Dialysis will always be around (maybe not social security) to keep me alive but I am up for a challenge.  I could easily end up right back where I am but I will feel good about giving it a shot.  There is too much speculation on the negative things that can happen and not nearly enough thoughts on what good can come about.  You will not know what is around the corner until you turn it yourself.  Even if someone turns the corner before you do and calls you on their cell phone to give you a heads up there is still the difference of perception.  What one looks at this way, another looks at that way.  Don't you all want to find out for yourself rather than have someone tell you about it?

I am not sure what compelled me to make this response.  I hope it makes sense and anyone who reads it can see it in the positive light that was intended.  Love to us all, we deserve it.

[Roxy]

I think the decision is completely on an individual basis. If someone is content with their life on dialysis and that is their choice then that's great for them. If another is willing to take the risks of a transplant and content with any or all side effects that may come from that, then that too is  great. I think the life span isn't quite as important as the quality of the life and that is assessed by each individual differently.

[thegrammalady]

i too have decided against a transplant. at my age, 56, it just doesn't seem necessary, not to mention financially responsible. i mean, if i could go back to work full time next year, just how easy would it be to find a decent job. I'd rather just not have to deal with it. now if i were in my 20's or even 40's there would be no question.

56 seems young, my parents are 55 and 56... I don't consider them old to no means. If my transplant for some reason don't last the rest of my life, I'm only 28, I will opt for another one... I don't consider a person to be too old for a transplant until they reach the point of they don't know whats going on and delusional and cant take care of themselves.

i don't consider myself old either, i still don't know what i want to do when i grow up. however, that doesn't mean others don't consider me too old to hire. when you can put a job on monster and get 500 qualified applicants in a day you choose someone in there 20's not their 50's who you think is going to want to retire in a few years. i'm just being practical.[/quote}

I still respect your decision though Just wanted to say I don't consider you too old for anything






EDITED: Fixed quote tag error- kitkatz,moderator

[Roxy]

Just the other day at the grocery store there was this nice lady who told the cashier that she was 99 years old. The lady looked like she was maybe in her late 70s, however she was 99!!!! She seemed so sweet and she seemed to have energy and be in high spirits, the lady walked faster than I did! When she left we were all talking about how we hoped to make it that long and look that good. It made me think even more about how long of a life I may have. My point in mentioning this is to say, none of us truly know regardless of any statistic how long our life span is going to be. Regardless of dialysis or a transplant, whatever is the best choice for each of our lives, we may live for a very long time or a shorter time. However , the one thing we all have in common is trying to live our lives the best we can for as long as we can. I hope everyone here gets to live out their lives with as much happiness as possible 

[bolta72]

Well said Roxy   

[LightLizard]

((((Roxy))))

Roxy ROCKS!
 

[stauffenberg]

While the normal intuition is to think that having an operation is always a greater risk than doing nothing, in the case of a dialysis patient considering transplant surgery, the greater risk is in not having the operation, since staying on dialysis presents a greater risk of declining health and premature death than having a transplant does.  A kidney transplant operation is an old procedure, having been first performed more than half a century ago, and has a very low death rate of one in 3000.  The yearly death rate of patients on dialysis varies between 9% and 26% in first-world dialysis centers, depending on the country.

I don't understand the argument that if my transplant were to fail after working only a short time, I would prefer to have remained on dialysis.  Why would anyone prefer not to spend any period of time feeling more alert, more energetic, more healthy, and being more free, even if that period of time were short?  Why would I prefer the misery I endured on dialysis to have lasted longer just so as to avoid the disappointment of my reprieve from that misery being shorter than expected?

It also makes no sense to me that someone would not want a transplant because of advanced age, as long as a transplant was still medically advisable.  Don't you want to feel more alive, more energetic, more productive, as well as having a longer life expectancy, regardless of age?  If a transplant were a huge undertaking requiring enormous effort and many years of struggle to accomplish before the investment paid off, then being older might be a reason for not finding it a sensible alternative.  But a transplant operation takes only four hours of your time during which you experience nothing, plus about a week in the hospital, followed by another three months of more intensive diagnostic testing and more numerous medical appointments.  But even in the month of the transplant itself, a patient will be less bothered by medical interventions than he normally would be on dialysis.  So if the patient's investment of time and energy in a transplant is so small compared to that required for continuing on dialysis, what on earth does being older have to do with not wanting a transplant so as to live better, which you start to do within minutes of waking up from the procedure?

[angela515]

 

[LightLizard]

While the normal intuition is to think that having an operation is always a greater risk than doing nothing, in the case of a dialysis patient considering transplant surgery, the greater risk is in not having the operation, since staying on dialysis presents a greater risk of declining health and premature death than having a transplant does.  A kidney transplant operation is an old procedure, having been first performed more than half a century ago, and has a very low death rate of one in 3000.  The yearly death rate of patients on dialysis varies between 9% and 26% in first-world dialysis centers, depending on the country.

I don't understand the argument that if my transplant were to fail after working only a short time, I would prefer to have remained on dialysis.  Why would anyone prefer not to spend any period of time feeling more alert, more energetic, more healthy, and being more free, even if that period of time were short?  Why would I prefer the misery I endured on dialysis to have lasted longer just so as to avoid the disappointment of my reprieve from that misery being shorter than expected?

It also makes no sense to me that someone would not want a transplant because of advanced age, as long as a transplant was still medically advisable.  Don't you want to feel more alive, more energetic, more productive, as well as having a longer life expectancy, regardless of age?  If a transplant were a huge undertaking requiring enormous effort and many years of struggle to accomplish before the investment paid off, then being older might be a reason for not finding it a sensible alternative.  But a transplant operation takes only four hours of your time during which you experience nothing, plus about a week in the hospital, followed by another three months of more intensive diagnostic testing and more numerous medical appointments.  But even in the month of the transplant itself, a patient will be less bothered by medical interventions than he normally would be on dialysis.  So if the patient's investment of time and energy in a transplant is so small compared to that required for continuing on dialysis, what on earth does being older have to do with not wanting a transplant so as to live better, which you start to do within minutes of waking up from the procedure?

wrong. i see my doctor about once every three months now, since i've been on home, peritoneal dialysis. i go for bloodwork once a month, and any adjustment to my meds is discussed over the phone, with my dialysis team.
the fact FOR ME is that having hep C means I would only be allowed to receive a kidney that was hep C-infected. Its very likely, and the stats confirm this, that a transplant with a hep C kidney would re-activate the virus in me and because of the condition of one immediately after the transplant operation, it would most likely kill me very quickly. your argument may hold water for one without hep C, or other life-threatening issues, but not for me.
nice try, though.

[del]

  Roxy.  It's an individual choice whether they do dialysis, have transplant or die.  Those are basically the only 3 options when your kidneys fail.

[okarol]

While the normal intuition is to think that having an operation is always a greater risk than doing nothing, in the case of a dialysis patient considering transplant surgery, the greater risk is in not having the operation, since staying on dialysis presents a greater risk of declining health and premature death than having a transplant does.  A kidney transplant operation is an old procedure, having been first performed more than half a century ago, and has a very low death rate of one in 3000.  The yearly death rate of patients on dialysis varies between 9% and 26% in first-world dialysis centers, depending on the country.

I don't understand the argument that if my transplant were to fail after working only a short time, I would prefer to have remained on dialysis.  Why would anyone prefer not to spend any period of time feeling more alert, more energetic, more healthy, and being more free, even if that period of time were short?  Why would I prefer the misery I endured on dialysis to have lasted longer just so as to avoid the disappointment of my reprieve from that misery being shorter than expected?

It also makes no sense to me that someone would not want a transplant because of advanced age, as long as a transplant was still medically advisable.  Don't you want to feel more alive, more energetic, more productive, as well as having a longer life expectancy, regardless of age?  If a transplant were a huge undertaking requiring enormous effort and many years of struggle to accomplish before the investment paid off, then being older might be a reason for not finding it a sensible alternative.  But a transplant operation takes only four hours of your time during which you experience nothing, plus about a week in the hospital, followed by another three months of more intensive diagnostic testing and more numerous medical appointments.  But even in the month of the transplant itself, a patient will be less bothered by medical interventions than he normally would be on dialysis.  So if the patient's investment of time and energy in a transplant is so small compared to that required for continuing on dialysis, what on earth does being older have to do with not wanting a transplant so as to live better, which you start to do within minutes of waking up from the procedure?

wrong. i see my doctor about once every three months now, since i've been on home, peritoneal dialysis. i go for bloodwork once a month, and any adjustment to my meds is discussed over the phone, with my dialysis team.
the fact FOR ME is that having hep C means I would only be allowed to receive a kidney that was hep C-infected. Its very likely, and the stats confirm this, that a transplant with a hep C kidney would re-activate the virus in me and because of the condition of one immediately after the transplant operation, it would most likely kill me very quickly. your argument may hold water for one without hep C, or other life-threatening issues, but not for me.
nice try, though.

LightLizard,
I don't think anyone would insist that you get a transplant if it's going to make your health worse, not better. I found this article - thought you would be interested if you hadn't seen it before:

HCV Treatment Response Persists After Kidney Transplantation

After kidney transplantation, use of immunosuppressive therapy to prevent organ rejection can result in increased HCV viremia. Past studies have shown that both patient and graft survival are lower in HCV positive compared with HCV negative kidney transplant recipients.

In the October 15, 2006 issue of Transplantation, French researchers discussed hepatitis C treatment in patients receiving kidney dialysis and outcomes after kidney transplantation.

At present, they noted, there are few safe and effective options for treating hepatitis C after kidney transplantation:

    Interferon-based therapy does not produce a sustained virological response in many patients, and is associated with a high rate of kidney failure.

    Ribavirin and amantadine monotherapy are associated with a significant improvement in liver enzymes, but have no impact on HCV viremia.

    Ribavirin may be indicated in cases of HCV-related glomerulopathy, because it can significantly decrease protein in the urine.

Combination interferon plus ribavirin, they wrote, "should only be given to those patients who have developed post-transplant fibrosing cholestatic hepatitis," and instead, patients with kidney dysfunction should be treated before transplantation.

In dialysis patients, the authors noted, the only recommended therapy as yet is conventional interferon alfa monotherapy. Pegylated interferon is under evaluation, but ribavirin is considered contraindicated because it can cause severe hemolytic anemia.

While sustained response rates with interferon monotherapy leave much to be desired, outcomes are promising in those who do respond.

"When HCV-positive dialysis patients with a sustained virological response undergo successful renal transplantation," the authors concluded, "very few suffer a virological relapse, thus emphasizing that these patients were cured."

12/01/28/06 http://www.hivandhepatitis.com/hep_c/news/2006/120106_a.html

[LightLizard]

thanks okarol. i have seen that article.
i was treated with interferon and ribavirin before my kidneys failed and it
nearly killed me.
i can't help but feel that i've been 'ripped off' in a way, because i feel that i really don't have a choice in this matter at all. but, self-pity just leads to self-loathing, so its best to just accept what is and get on with as much living as i can.

love

~LL~

[KT0930]

As for choosing just a short time with a transplant or remaining on dialysis, I have to say, I'll take the transplant. I've been there, done that. I had a transplant that lasted less than 5 years, but those 5 years were still preferable to the last nine months on dialysis. I had more freedom, felt a WHOLE lot better, less time taken off of work for doctor's appointments & labwork (once every 3-6 months vs. twice a month now), and more energy to use on being a mom and wife.

All that being said, it is an individual's choice what they want to do with their life, and I can only make the decision for myself and encourage people I care about to choose the option that will allow them to live their life more fully.

[Black]

... less time taken off of work for doctor's appointments & labwork ... twice a month now), ...

Please pardon me being nosy, but why do you have to go twice a month?  Isn't that unusual?

[stauffenberg]

I perfectly agree with Lightlizard that in very special cases, such as people with Hepatitis C or tuberculosis, having a transplant is a worse health option because of the immunosuppression required.  However, I was speaking for the generality of cases, not for exceptional ones.

But when I said that a transplant means considerably less medicalization of the patient's life, of course I was not just talking about the number of medical appointments and diagnostic procedures transplant and dialysis require, but also the number of hours per week which have to be spent dialyzing, whether on hemodialysis in-center or at home, or peritoneal dialysis.  Maintenence treatment for a transplant is putting a handfull of pills in your mouth twice a day and that's it; for hemodialysis, my treatment burden was 21 hours of in-center dialysis treatment per week, including wait times and travel.

[LightLizard]

thanks for the clarification, stauffengerg. i do the night-time cycler. so, i just hook up when i'm going to bed and unhook when i wake up in the morning.
no muss, no fuss, and not really time consuming at all, unless you count the 15 minutes it takes to set up and connect. but, i hear ya. if one has no complicating issues, a transplant is the way to go.

love

~LL~