I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: LightLizard on August 28, 2007, 08:04:01 AM
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I haven't been able to find much evidence or any statistics that say what the avaerage length of time someone can live on dialysis is. Does anybody know or even have a ball-park figure of what that might be?
I realise that it would vary widely and be dependant on many factors, but I can't help but wonder.
Yesterday, I received a package in the mail from a hospital that my nephrologist had sent to me. It's information about getting a kidney transplant, along with the forms for registering and getting the specific tests done to initiate the process.
I am still undecided. I don't feel too bad, being on dialysis, and there is also the fact that because I have hepatitis C, I would only be eligble to receive a kidney from a Hep C patient.
Also, the information I have read about the side-effects of the anti-rejection drugs one has to take, following a transplant, is not encouraging, to say the least.
How long can someone live on dialysis?
love
~LL~
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The last stats I saw was the AVERAGE life expectancy of a new dialysis patient, going in center 3 times a week, is 5 years. Home dialysis patients have better averages - in 10 years 70% are still alive.
That being said, there are people who have been on in center dialysis for decades.
Remember Epoman had been in center for around 13 years and died just a few months after going to the NxStage. He said that the poor care in the first years of dialysis is what caused most of his problems and that is what provided the drive to use this site to educate people so they could get better care than he got.
Much also depends on what caused the kidney failure. For example, diabetics have a much tougher time handling the additional problems that diabetes causes and PKD patients are often generally healthy other than the kidney failure. Your overall general health and genetics play a significant roll, as well as how proactive you are in your care (medical professionals are human, don't know it all, and do make mistakes), and probably most important, how well you take care of yourself.
If you are considering a transplant, even a tiny bit, get on the transplant lists ASAP. If a kidney becomes available you can always say "No." and stay on dialysis, but deciding in ten years you should have gotten on the list is not good. :twocents;
A transplant is like the Gimp box of chocolates - "... you never know what you're going to get." Some people do really well and take few drugs, some transplants never work.
Karol is good with the fact sources, maybe she can give you some stats on transplant success rates and survival rates.
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thanks black! your clarity is refreshing.
love
~LL~
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A guy I know started 34 years ago, never had a transplant and is still living healthy life, he told me that he always watched out what he ate and how much he drank. Drinking is one of the things thats get your heart because it fills up and stretches then after only 4 - 5 h the water is sucked up again which is hard on the heart.
I've been on dialysis for 8 years now, my 9 is coming up and so far nothing new has come up and I hope I live a long healthy life under these circumstances
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thanks speedy! that is good to hear (read)!!
love
~LL~
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If you are considering a transplant, even a tiny bit, get on the transplant lists ASAP. If a kidney becomes available you can always say "No." and stay on dialysis, but deciding in ten years you should have gotten on the list is not good. :twocents;
I could not agree with this statement more. If you end up deciding you do want a transplant, you will then start the long process of getting on the list and then waiting when you could be doing it now, and sitting there waiting while you decide.. if you get an offer, like Black said, say no if you are unsure or whatever. Also, if you do end up making up your mind and the answer is no, you do not wish to have one.. take yourself off the list.
Good luck hun. :)
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Hubby has been on dialysis for 10 years now and he is healthy than ever!! He started nocturnal home hemo in Oct. 06 and that is fantastic!!. He always watches what he eats and his fluid intake. He very rarely has any more than 2 kg on even when he was 3 days a week. Most nights now he has about 1 kg on or less!! Apparently for a lot of people it is the amunt of fluid gain that causes problems over the years. Don't let anybody presure you into having a transplant. It is your lifwe and has to be your decision. Hubby refuses to be put on the list because he is dooing so well and feeling so good!!
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thanks angela and del, for your words and advice.
i also am one that does not put on lots of fluid. i might gain a K and a half during the day, of course, it depends on what i eat, how much i drink and such, but the night cycler seems to be quite efficient at removing the excess and i find my weight is pretty stable since i've been doing P/D.
i just had an old tai chi student ask if i wanted to start teaching her and a small gathering of friends soon. I'm considering it seriously. I need to get out more, I think.
love
~LL~
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There are several factors that would affect life expectancy beyond the dialysis itself. Things to consider are the cause of your kidney failure and what other medical issues you have.
Another factor is how well you take care of yourself. You have a better chance at long-term success if you eat well, watch your levels of phosphorous, potassium and control your blood pressure and fluids. In general, become familiar with your labs and keep on top of your meds.
You will often hear that "the average" life expectancy on dialysis is 5 yrs, but you must remember, some people start dialysis well into their 80s these days.
Continue to do research and live the healthiest lifestyle you can. Some people cope just fine with the restrictions of dialysis while others struggle physically and emotionally. Do whatever it is to have the best life possible that fits for you.
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You can find a full table of statistics for the varying life expectancies of people with endstage renal failure according to age group, presence of absence of diabetes, and treatment modality (transplant or dialysis) in a medical text by Professor Gabriel Danovitch, Handbook of Kidney Transplant (Philadelphia: Lippincott, 2001) p. 16. His data are based on a huge statistical survey of many patients over many years and show that for the average patient without diabetes, a transplant doubles the life expectancy. For a patient with diabetes, a transplant triples the life expectancy. Thus a diabetic man in his forties on dialysis can expect to live 8 years on average, while a diabetic in his forties who gets a transplant can expect to life another 24 years. The life expectancies of dialysis patients overall are remarkably similar among age groups, which is surprising, since younger people normally have a much longer remaining life expectancy than older people.
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Much also depends on what caused the kidney failure. For example, diabetics have a much tougher time handling the additional problems that diabetes causes
Are you referring to problems during dialysis or with a transplant? I'm diabetic and may soon be going on dialysis or getting a transplant and am completely lost as to whether I want to start dialysis or just jump ahead and go straight to a transplant. My mother's boyfriend is an O+ just like me and is willing to donate his kidney to me. I'm just not sure what I want to do. I too have not heard good things about transplant drugs, side affects of the transplant, survival rates, etc. but then again, dialysis doesn't seem very good either. I guess I need more information. Does anyone know what the best option is for a diabetic?
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Hey! stauffenburg's post wasn't there when I typed my question!
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You both must've been posting at the same time and he just beat you in adding his reply, thats all ::)
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yeah, its a tough call, all around. if i knew that i could maintain how i feel now well into the future, i would not even consider a transplant as an option, in keeping with the philosophy of 'if it ain't broke, don't fix it' - but, in our condition one can't rely on feeling good in the long term, no matter how well one looks after themselves.
getting on the list and going with the process, while keeping in mind the daily changes one goes through seems like a reasonable approach, to me. even if and when a kidney becomes available for me I may not feel inclined to accept it, seems reasonable. at least, being on the list does offer an option of some kind, which is better than no options, no?
i'm 58, non-diabetic, and the cause of my kidney failure is due to long-term hep C infection, apparently.
the liver specialist says my liver is in suprisingly good condition, but the hidden demon high blood pressure is probably the demon that trashed my kidneys, as my body tried to deal with the hep C.
i am in relatively good condition, otherwise, i think, but who knows how long that can last?
i never was much of a gambler, but this is vegas on steroids, if ya ask me!
love
~LL~
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Ok this is a lot of reading paddbear. There are positives and negatives to everything in life - but this will give you an idea of some of the possibilities.
If you haven't see these threads you may want to check out:
Transplant or Dialysis? http://ihatedialysis.com/forum/index.php?topic=1989.0
Kidney transplant triples life expectancy in end-stage renal failure http://ihatedialysis.com/forum/index.php?topic=4536.0
35 years on dialysis! http://ihatedialysis.com/forum/index.php?topic=3500.0
Living Despite Dialysis http://ihatedialysis.com/forum/index.php?topic=60.0
Live vs Cadaver donation http://ihatedialysis.com/forum/index.php?topic=4076.0
Thirty-five Years on Dialysis http://ihatedialysis.com/forum/index.php?topic=4486.0
Wait nearly over for transplant hopeful (first transplant lasted 37 years!) http://ihatedialysis.com/forum/index.php?topic=2468.0
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:bow; I like reading! Thanks so much--I'm settling in with some iced tea right now to read them!
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The choice between dialysis and transplant is a no-brainer. During dialysis there is accelerated development of arteriosclerosis, increased risk of heart attack, damage to the nervous system, loss of bone mass, loss of muscle tissue, damage to the pituitary gland which in turn creates chaos in the body's hormonal balance, plus the danger of lethal hypotension and infection, to say nothing of the constant exhaustion from severe anemia. Your life is also taken over by your treatment. With a transplant, all of the physical damage associated with dialysis is avoided, and though the immunosuppressive drugs can also accelerate the development of arteriosclerosis and bone loss, their net damage is much less than that incurred by staying on dialysis. The proof is in the pudding: transplant patients live twice as long as dialysis patients, while diabetic transplant patients live three times as long as diabetic dialysis patients.
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You can find a full table of statistics for the varying life expectancies of people with endstage renal failure according to age group, presence of absence of diabetes, and treatment modality (transplant or dialysis) in a medical text by Professor Gabriel Danovitch, Handbook of Kidney Transplant (Philadelphia: Lippincott, 2001) p. 16. His data are based on a huge statistical survey of many patients over many years and show that for the average patient without diabetes, a transplant doubles the life expectancy. For a patient with diabetes, a transplant triples the life expectancy. Thus a diabetic man in his forties on dialysis can expect to live 8 years on average, while a diabetic in his forties who gets a transplant can expect to life another 24 years. The life expectancies of dialysis patients overall are remarkably similar among age groups, which is surprising, since younger people normally have a much longer remaining life expectancy than older people.
Thanks, good post.
Is there data on that table comparing dialysis in center 3x weekly, and home dialysis 6x weekly? I would expect the survival rate of those on home dialysis 6x a week to be much nearer that of transplants.
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well, the research I've been doing shows that the mortality rate among hep C patients who have kidney failure and get a transplant is much higher than those who do not have hep C.
not everyone on dialysis is subject to the exhaustion that stauffenburg mentions.
in my own experience, when i first started dialysis, i was doing hemo at a local dialysis clinic. after the sessions (three per week) i was exhausted and had to rest or lie down for up to two hours afterwards.
on P/D, that changed for me when i switched to the double-bag dialysis. now, on the baxter cycler, i find my energy is pretty consistent and exhaustion is rare, for me. i'm not running marathons, but i'm not draggin my tail like i was on hemo, at least. i can understand why stauffenburg feels the way he does though, being a transplant recipient would make him more supportive of the procedure, of course.
its not easy, getting an unbiased view, but that's the nature of things, i suppose. you can say the facts speak for themselves. but, it all depends on who you're talking to, their experience, their beliefs, and one can only toss the dice and hope, in the end.
i'm not ready to toss the dice. not yet.
love
~LL~
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The choice between dialysis and transplant is a no-brainer. During dialysis there is accelerated development of arteriosclerosis, increased risk of heart attack, damage to the nervous system, loss of bone mass, loss of muscle tissue, damage to the pituitary gland which in turn creates chaos in the body's hormonal balance, plus the danger of lethal hypotension and infection, to say nothing of the constant exhaustion from severe anemia. Your life is also taken over by your treatment. With a transplant, all of the physical damage associated with dialysis is avoided, and though the immunosuppressive drugs can also accelerate the development of arteriosclerosis and bone loss, their net damage is much less than that incurred by staying on dialysis. The proof is in the pudding: transplant patients live twice as long as dialysis patients, while diabetic transplant patients live three times as long as diabetic dialysis patients.
I believe two other risk factors with a transplant are skin cancer and developing Type 2 diabetes.
well, the research I've been doing shows that the mortality rate among hep C patients who have kidney failure and get a transplant is much higher than those who do not have hep C.
not everyone on dialysis is subject to the exhaustion that stauffenburg mentions.
in my own experience, when i first started dialysis, i was doing hemo at a local dialysis clinic. after the sessions (three per week) i was exhausted and had to rest or lie down for up to two hours afterwards.
on P/D, that changed for me when i switched to the double-bag dialysis. now, on the baxter cycler, i find my energy is pretty consistent and exhaustion is rare, for me. i'm not running marathons, but i'm not draggin my tail like i was on hemo, at least. i can understand why stauffenburg feels the way he does though, being a transplant recipient would make him more supportive of the procedure, of course.
its not easy, getting an unbiased view, but that's the nature of things, i suppose. you can say the facts speak for themselves. but, it all depends on who you're talking to, their experience, their beliefs, and one can only toss the dice and hope, in the end.
i'm not ready to toss the dice. not yet.
love
~LL~
This forum is a good place to hear opinions on both sides regarding dialysis and transplant. Both are treatments for renal failure, and all a patient can do is make an informed decision about the type of treatment they receive.
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Hubby has been on dialysis for 10 years - pd , in center hemo and home hemo nocturnal - never had the severe lack of energy that people talk about. has no other health conditions. Transplant probably is a better option in some cases but we have seen a few people who have had a transplant and don't feel as well as hubby does now. Some people we have seen are doing really well. Depends on the person and how they react to the drugs. Hubby's philosophy is this is working well for him so why rock the boat and maybe have reactions to the drugs and be worse off. He says he will consider a transplant when and if he starts to be sick on hemo. Right now he has just a smuch energy as a "normal" person.
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PaddleBear -I am a diabetic and been in-center for a little over a year. If you haven't started dialysis yet and have a willing donor your nuts not to take them up on it. I'm O+ and can't even get a family member to come forward. Don't throw the chance away, you really don't want to start dialysis....Boxman (my opinion)
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When i was on dialysis the first time my brother came forward before i even started. However the powers to be stated, " I think it is better that you are on dialysis for a while before your brother gives you one of his kidneys. " Yeah right, someone got a little pocket money on that one. I don't know i could get run over by a banana truck today and not have to worry about dialysis again.
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I believe two other risk factors with a transplant are skin cancer and developing Type 2 diabetes.
Well, I've already got type 1 diabetes, so the risk if type 2 has already been eliminated, and I've never burned or even been able to get a sun tan a day in my life, so I'm pretty sure that eliminates the skin cancer too! ;)
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I'm O+ and can't even get a family member to come forward.
That's so sad! :'( I'm so sorry to hear that! What about friends?
:grouphug;
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Those statistics are just numbers to me. My brother who was a bad type 2 diabetic by age 51 had gone blind and most of his organs were in trouble. He then went on dialysis in the States where he had been to see the doctor. When he returned home that same year, the doctor in the States had said he needed to be dialysed 3 times a week or he would not last 3 years. Well, they only dialysed him twice weekly for about the first two or three years. Yet after all of that, my brother survived 10 years. I don't understand the stats at all. A bad diabetic like him should not have lasted that long. So I am not giving the stats any kind of consideration. I am on dialysis 3 time a week -these days I come off feeling really great. Last week after dialysis, I ran down the stairs to the car that was picking me up.
I know my problem is dealing properly with my fluid restriction and taking my cholesterol and phosporus medication. I will deal with these things and LIVE LONG AND PROSPER!
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The full range of risks which are increased because of immunosuppressive drugs taken for a transplant is quite long and includes cancer, bone disease, type 2 diabetes, infection, heart attack, stroke, excess hair growth, patchy hair growth, overgrowth of the gums, cataracts -- you name it. But the key factor to keep in mind is that, viewed statistically, the death rate from all these transplant-related problems is lower than the death rate on dialysis, and the morbidity -- the decline in health -- is much less with a transplant than without one.
Quality of life is a key point as well. If the way I felt and functioned before developing renal failure was 100, then on dialysis my level was about 20, but with a transplant I am back to about 80. Instead of dialysis taking up my enitire life, the medical regimen for dealing with the transplant is so minimal that I could live with someone and keep the fact of my being a transplant patient secret from them, since all I have to do is take some pills twice a day. On dialysis getting to and from the treatment, enduring the treatment, and recovering from it took me about 21 hours a week, and holiday travel was so burdensome that it wasn't worth it, even though it was theoretically possible. I was unable to work while on dialysis, but within two weeks of receiving a transplant, I was back at my old line of work functioning about as well as I ever had. I know of no case in the history of medicine when anyone ever voluntarily gave up taking immunosuppressive drugs because they preferred dialysis to transplant as a treatment modality for endstage renal failure, but there are thousands of people counting the days while waiting on the list to move from dialysis to transplant.
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the list of people who have a transplant and have the new kidney fail in a few years is very long, too.
there are too many factors to make such a decision based on only one person's experience.
your kidney is fine now. will you sing the same tune if it fails and you have to go back to dialysis?
i don't know if you tried the baxter cycler or not. but i find it quite reliable, as far as keeping my energy level up. i tend to side with del's hubby; 'if it ain't broke, don't fix it.'
so far, that is....
;)
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To say that the transplanted kidney might fail is no argument against he superiority of a transplant to dialysis. The statistics show that the average kidney transplanted from a cadaver lasts 12 years, while the average kidney from a living donor lasts 24 years. Both of those graft survival times are longer than my entire life expectancy was on dialysis.
Anecdotal evidence doesn't mean anything compared to the statistics, which are all that you have to judge by if you are reasoning on an objective basis. There may be a merchant in the Congo who is a millionaire, but that doesn't mean it's a good idea to move from the United States to the Congo to get rich! You look instead at the statistics, which says that the average income in the U.S. is $43,000 a year, while the average income in the Congo is $1200 a year, and make your decision on the averages.
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that might be, but the merchant might win the lottery, too.
what i'm saying is that there are far too many variables to base one's decision solely on
statistics and it's not as simple or black and white as you suggest. (a 'no-brainer'?)
my condition, a few years ago, as far as 'statistics' go, should have killed me.
it didn't.
;)
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I believe two other risk factors with a transplant are skin cancer and developing Type 2 diabetes.
Well, I've already got type 1 diabetes, so the risk if type 2 has already been eliminated, and I've never burned or even been able to get a sun tan a day in my life, so I'm pretty sure that eliminates the skin cancer too! ;)
pbear, my transplant doc said they almost expect a transplant patient to get skin cancer - staying out of the sun will help, but the odds are good you're going to get it anyhow.
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your kidney is fine now. will you sing the same tune if it fails and you have to go back to dialysis?
I sang the same tune. This is my 2nd transplant. My first transplant only lasted 5 yrs due to me having 2 children immediately after having my transplant, I do not regret that though. As far as being back on dialysis and still wanting a transplant and thinking just as highly about them never changed.
pbear, my transplant doc said they almost expect a transplant patient to get skin cancer - staying out of the sun will help, but the odds are good you're going to get it anyhow.
I guess every dr looks at different statistics or something because my transplant dr said he has transplant patients with no skin cancer and they are over 10+ yrs post... he advices a high SPF sunblock for whenever your going to go outside and of course staying out of the direct sun if you can for long periods of time. I don't know how long it takes to develop skin cancer, so far, I don't have it..
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I look at my current state of living as the biggest bet I have ever made (each day there is), with no guarantees. The bigger the risk the greater the reward. Usually when I play poker I have the mentality that I can't loose what I don't put in....but then I don't win much either (status quo). When I do play a hand it is first based on probability (statistics) and then on feeling (my gut).
When first hit with my (health) condition I had a very clouded mind and was not capable of good decision making. Since learning the rules I have become confident about making decisions and I do plan on putting all of my chips on the table, I am simply waiting for the right time to do it.
Nothing is for sure, so what it comes down to is how you want to play the game. I am young and a lot less conservative than some other may be so unless anyone wants to give their chips to me all I have to worry about (make decisions for) is myself.
There is no right or wrong. Everyone has a different set of circumstances and unless you know what cards they are holding, when they are holding them, you can only speculate, therefore it is up to that individual on what they choose to do.
After all, it is the choices we make that dictate who we are, nothing else.
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I agree totally George!! :2thumbsup;
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pbear, my transplant doc said they almost expect a transplant patient to get skin cancer - staying out of the sun will help, but the odds are good you're going to get it anyhow.
Well that definitely goes on my list of reasons not to get a transplant!
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the list of people who have a transplant and have the new kidney fail in a few years is very long, too.
there are too many factors to make such a decision based on only one person's experience.
your kidney is fine now. will you sing the same tune if it fails and you have to go back to dialysis?
i don't know if you tried the baxter cycler or not. but i find it quite reliable, as far as keeping my energy level up. i tend to side with del's hubby; 'if it ain't broke, don't fix it.'
so far, that is....
;)
Actually the list of those kidneys that fail within a few years is quite short. In fact much shorter than the death rate in the first few years of those that start dialysis. First year alone 24% of dialysis patients do not make it.
Some people do thrive at dialysis. However the vast majority do not as they find it hard to maintain the renal diet and fluid restrictions. The failure to follow those two things can cause many problems and usually leads to other co-morbidities.
People have to decide for themselves. However, even as good as I felt the first time while on dialysis it doesnt even compare to how great you feel when that kidney kicks in working overtime to process years of toxins out.
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an important factor for me, which not many, if any, have to consider here, is the fact of my hep C.
the stats and experiences of hep c patients in my position that get a transplant is morbid and not anywhere near the results of non-hep C patients.
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For some of us, kidney failure is not the only medical condition we have. We must weight that heavily on our decisions to do transplant or not.
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Choose wisely, Grasshopper.
8)
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I believe two other risk factors with a transplant are skin cancer and developing Type 2 diabetes.
Well, I've already got type 1 diabetes, so the risk if type 2 has already been eliminated, and I've never burned or even been able to get a sun tan a day in my life, so I'm pretty sure that eliminates the skin cancer too! ;)
pbear, my transplant doc said they almost expect a transplant patient to get skin cancer - staying out of the sun will help, but the odds are good you're going to get it anyhow.
This is from the Mayo Clinic:
Kidney transplant: Does it increase my cancer risk?
Question:
Is it true that having a kidney transplant increases the risk of cancer?
--- Mayo Clinic urologist Erik Castle, M.D., and colleagues answer select questions from readers.
Answer:
Yes, having a kidney transplant increases your risk of cancer. Even before getting a transplant, just having end-stage kidney disease may slightly increase your risk of cancer.
People who've received a kidney transplant or any other solid organ transplant, such as a liver, pancreas or heart, are more likely to develop cancer than are those who've not had a transplant. The long-term use of immunosuppressive drugs that prevent rejection of the transplanted organ appears to be a contributing factor. A suppressed immune system may permit abnormal cells — which are normally kept in check by your immune system — to become cancerous. It's unclear whether certain immunosuppressive drugs increase this risk more than others.
Viruses, such as Epstein-Barr, play a role in some cancers in transplant recipients. Very rarely, a cancer may already be present in the transplanted organ, either as a primary or metastatic cancer.
Skin cancers are the most frequent cancers in transplant recipients. For this reason, it's important to protect your skin from sun exposure after an organ transplant. You should also discuss with your doctor a schedule of cancer screenings appropriate to your specific circumstances.
In general, the risk of developing a serious cancer is low compared with the many benefits of a successful kidney transplant when needed.
------- http://www.mayoclinic.com/health/kidney-transplant/AN01612
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Having a kidney transplant quadruples your risk of developing cancer. But it is important to note that many of those cases of cancer are skin cancer, which is the most curable of all cancers. If you are frequently checked for early skin lesions, skin cancer is nothing to fear.
Keep in mind as well that cancer rates are also higher than normal among dialysis patients.
The statistics say that you double your life expectancy if you go from dialysis to a kidney transplant and suffer from no other no other diseases. If you are a diabetic on dialysis and get a transplant you triple your life expectancy. Now, to clarify the analysis, suppose you could pick one of two hospitals to have a major operation, and one had double the operation success rate of the other. Would you remain undecided on which hospital to pick on the theory that "you never know what may happen"?! Sure, you could be very unlucky at the better hospital or very lucky at the worse hospital, but you have to judge by the averages.
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To say that the transplanted kidney might fail is no argument against he superiority of a transplant to dialysis. The statistics show that the average kidney transplanted from a cadaver lasts 12 years, while the average kidney from a living donor lasts 24 years. Both of those graft survival times are longer than my entire life expectancy was on dialysis.
Anecdotal evidence doesn't mean anything compared to the statistics, which are all that you have to judge by if you are reasoning on an objective basis. There may be a merchant in the Congo who is a millionaire, but that doesn't mean it's a good idea to move from the United States to the Congo to get rich! You look instead at the statistics, which says that the average income in the U.S. is $43,000 a year, while the average income in the Congo is $1200 a year, and make your decision on the averages.
Here is some additional wood to put on the fire:
More Kidney Transplants Are Failing
http://www.medicineonline.com/news/10/1734/More-Kidney-Transplants-Are-Failing.html
Patients who have had a kidney transplant face higher melanoma risk
http://www.medicalnewstoday.com/articles/31177.php
8)
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Well said stauffenberg. :thumbup;
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Now, to clarify the analysis, suppose you could pick one of two hospitals to have a major operation, and one had double the operation success rate of the other. Would you remain undecided on which hospital to pick on the theory that "you never know what may happen"?! Sure, you could be very unlucky at the better hospital or very lucky at the worse hospital, but you have to judge by the averages.
Puts things into a nice perspective. I like it a lot!
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Here is some additional wood to put on the fire:
More Kidney Transplants Are Failing
http://www.medicineonline.com/news/10/1734/More-Kidney-Transplants-Are-Failing.html
HEY! This is so old! SOURCE: University of Florida, news release, March 2004
Last Updated: Mar-10-2004
Patients who have had a kidney transplant face higher melanoma risk
http://www.medicalnewstoday.com/articles/31177.php
This is more recent - Article Date: 27 Sep 2005 - but not THAT current!
:popcorn;
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You can find a full table of statistics for the varying life expectancies of people with endstage renal failure according to age group, presence of absence of diabetes, and treatment modality (transplant or dialysis) in a medical text by Professor Gabriel Danovitch, Handbook of Kidney Transplant (Philadelphia: Lippincott, 2001) p. 16.
And the above is not old?
:-* to you okarol!
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You can find a full table of statistics for the varying life expectancies of people with endstage renal failure according to age group, presence of absence of diabetes, and treatment modality (transplant or dialysis) in a medical text by Professor Gabriel Danovitch, Handbook of Kidney Transplant (Philadelphia: Lippincott, 2001) p. 16.
And the above is not old?
:-* to you okarol!
touché mon ami :D
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My personal feeling is that at my age (57) I don't need a transplant (even if I could get it, which is not usual here). I support transplants for people like Jenna who now have a life to live and enjoy with the encumbrance of dialysis. But for me, it is not necessary and I prefer to finish out my days this way. I just want to do the right things to prolong my existence, but if and when the end comes, I have had a tremendous life. I just don't expect to be gone in 5 years as the statistics seem to want to predict!
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I feel the same way.
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those are my feelings, as well, bajanne2000. if i were younger (i'm 58) and had a lot that i wanted to do with my life still, AND if i didn't have hepatitis C, i would probably be of a different mind, but, i too have had a great life, i have fathered three beautiful girls-becoming-women, two grandchildren, and achieved as much professional success as i could deserve and want. i don't really understand how some can just brush past the hep C issue so casually with this question. i guess they would feel differently too, if they were in my position. i've pretty much decided a transplant 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.
love
~LL~
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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. :cuddle;
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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.
::)
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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.
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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.
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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~
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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 :)
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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.
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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 ???
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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.
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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.
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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.
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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
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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 :beer1;
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Well said Roxy :thumbup;
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((((Roxy))))
Roxy ROCKS!
:bandance;
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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?
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:thumbup;
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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.
;)
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:2thumbsup; 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.
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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
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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~
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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.
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... 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?
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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.
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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~
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The statistics show that the average kidney transplanted from a cadaver lasts 12 years, while the average kidney from a living donor lasts 24 years.
Lets get the facts straight.
What you're referring to is the half-life, not the average length of graft function.
Half-life is an estimation -- a projection of what might be.
Half-life means that half of the kidneys within the particular category will function fewer than the stated years and half will survive longer.
Also, the calculation of this estimation does not include those transplants which have failed within the first 12 months.
Type of kidney transplant Kidney graft half-life in years
Living Donor
HLA Identical 26.5 years
Offspring 18.7 years
Spouse Unrelated 15.8 years
Distant Relative 18.4 years
Deceased Donor
HLA Identical 17.3 years
Non-HLA Identical 10.9 years
As better drugs continue to come down the pike, transplants from all sources will last longer. While these are very good numbers, we just need to understand what they represent.
8)
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Zach...
That is great information...thanks... :clap;
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Zach, I am not writing for publication in a scientific journal when I contribute to this forum, so because most of the members of this forum are neither scientists nor captious people with nothing better to do than fuss obsessively over the exact definition every word as though these were binding contracts rather than just informal posts we are writing, I used the word 'average' rather than 'half-life' because most people understand the first concept but not the second. For a discussion with a general audience, these terms are sufficient approximations to each other as statistical concepts to suffice. I also did not discuss the statistics in terms of median or mean survival times either, which might also be instructive perspectives to take. Finally, the source I used, from the New England Journal of Medicine, DID include graft failures in the first few post-transplant months in its statistics.
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I used the word 'average' rather than 'half-life' because most people understand the first concept but not the second
Using the word "average" and "lasts 24 years" is misleading.
People looking into transplantation need to be given a more accurate picture of what they can expect, then they can make an informed decision.
8)
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I used the word 'average' rather than 'half-life' because most people understand the first concept but not the second.
Stauffenberg, you make it sound as though the rest of us on this site wouldn't be able to understand the terms. However, when Zach explained it, it seems quite simple to grasp. The way I see it, the more accurate information the better. We're all here to learn from eachother. Information is great knowledge and everyone's contributions are helpful, but if someone can give us a more accurate idea of what we're looking at, it helps make us all that much more informed. Just my :twocents;
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Zach,
Where did you get those statistics? I am always looking for resources.
Thanks,
K
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Zach,
Where did you get those statistics? I am always looking for resources.
Thanks,
K
Here you go:
http://transplant.emory.edu/kidney/patient/evaluation.cfm
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Zach,
Where did you get those statistics? I am always looking for resources.
Thanks,
K
Here you go:
http://transplant.emory.edu/kidney/patient/evaluation.cfm
Wow that was fast! Thanks. :2thumbsup;
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Interestingly, one study of outcomes in renal transplant patients (C. Porticelli, et al, "Risk Factors for Late Kidney Allograft Failure" Kidney International, vol. 63, no. 5 (May, 2003) 1960) found that although the overall graft half-life was 20 years, if transplanted kidneys which failed due to death of the transplant recipient were excluded from the statistics, then the graft half-life was 31.3 years. This suggests that the limit to patient life expectancy among those with transplants is not entirely set by the lifespan of the transplanted organ, but by the patients themselves, who die of old age or co-morbidities before the kidney would have otherwise failed.
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I haven't been able to find much evidence or any statistics that say what the avaerage length of time someone can live on dialysis is. Does anybody know or even have a ball-park figure of what that might be?
I realise that it would vary widely and be dependant on many factors, but I can't help but wonder.
Yesterday, I received a package in the mail from a hospital that my nephrologist had sent to me. It's information about getting a kidney transplant, along with the forms for registering and getting the specific tests done to initiate the process.
I am still undecided. I don't feel too bad, being on dialysis, and there is also the fact that because I have hepatitis C, I would only be eligble to receive a kidney from a Hep C patient.
Also, the information I have read about the side-effects of the anti-rejection drugs one has to take, following a transplant, is not encouraging, to say the least.
How long can someone live on dialysis?
To the original question - I know this is often a question people have when they hear the diagnosis of severe kidney disease: How long will I live? What are the averages?
I answer these questions here http://www.billpeckham.com/from_the_sharp_end_of_the/2008/03/dialysis-lifesp.html.
Bottom line? You can live a long time on dialysis; do not max out your credit cards.
the links get stripped if I post here - I think this is the data you were asking for but read the blog post too - I make some of the same points about averages that Zach and others have made, please keep them in mind. Here is the table from the USRDS that I post on my blog in a bigger form
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Ooops! I have used up my nine.four years!
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Ooops! I have used up my nine.four years!
Kitkatz, try our application of the table, we will use these statistics to our advantage:
Rolando started dialysis at age 39 with a 9.4 year expected lifetime.
When he hit 40, he moved into the next bracket, "promising" 8.1 more years.
Next month (in one week) he'll move into the 45-49 bracket with 7.1 more years expected.
This way, we won't run into trouble until the 60-64 bracket with only 4.5 years left, and then we will simply quit consulting the table. However, we want that 1.9 years offered at 85+!
:clap;
Live life.
Alene
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You can live a long time on dialysis; do not max out your credit cards.
And I've done both! Damn fundraising for my documentaries.
8)
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Bill, any idea why I cannot access this link? http://www.billpeckham.com/from_the_sharp_end_of_the/2008/03/dialysis-lifesp.html - thanks
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Bill, any idea why I cannot access this link? http://www.billpeckham.com/from_the_sharp_end_of_the/2008/03/dialysis-lifesp.html - thanks
My whole site seems to be down for some reason - I was working today I didn't actually check it 'til just now. I'm going to go walk my dog in the park and hope it fixes itself. Computers are shortening my lifespan just because of the aggravation.
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I hope it gets better soon! Computer, HEAL THYSELF! ;)
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Okarol you're cyber Shaman.
Did you sacrifice a floppy disc or something?
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Okarol put on her Shaman mask last night and did the Dance of the Heal the Computer.