Guest guest Posted February 17, 2005 Report Share Posted February 17, 2005 Hi B, The statistics for dialysis life expectancy are very slanted due to a large number of people on dialysis being older and having other co-morbid conditions. Many people on dialysis are there because of diabetes which has other problems in addition to the kidney complications, and in general the older you are, the shorter life expectancy in general. The good news is that those of us with IgAN tend to be younger and much healthier otherwise with the exception of our kidneys so we do not fit into the statistics. I do not know of a study of IgAN patients in particular, but I am sure if they did one, our life expectancy would be much better than the general dialysis population. I hope that eases your concern. a message dated 2/17/2005 4:32:42 P.M. Pacific Standard Time, kb3@... writes: Hey there, It's an unpleasant topic, yet if I can't ask these questions here, then where? I've a feeling my doctors sugar coat things to keep me calm. What's the life expectency of someone on dialysis? I came across the following: " One would think this represented some degree of success, " Churchill remarked. " It is sobering, however, to examine the data from the USRDS [uS Renal Data System] in which a 40-year old who starts dialysis will have an expected survival of 9.3 years compared to 37.4 years for the general population. The situation is even worse for the 59-year old who has just a 4.3-year life expectancy compared to 20.4 years for someone in the general population. " http://www.ikidney.com/iKidney/InfoCenter/Library/CDN/Archive/EarlyRef erralNeeded.htm " There is a reduced life expectancy with chronic kidney disease, which, depending on frequency of dialysis, and underlying disease, can vary from 14.2 years (low risk) to 3.5 years (high risk). " http://www.medicalnewstoday.com/medicalnews.php? newsid=15669 & nfid=rssfeeds Neither was in reference to IgAN specifically. Do we have a better outlook? I've read in a few places that IgAN patients are typically the healthiest kidney patients. As an aside, when individuals are having problems or have received bad news, I do feel for them and send my prayers along with everyone else, but I leave it to the people who've been here longer, who know them better to respond. It doesn't mean I don't care, just trying to keep the email volume down. Warm wishes to all, B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2005 Report Share Posted February 17, 2005 Hey there, It's an unpleasant topic, yet if I can't ask these questions here, then where? I've a feeling my doctors sugar coat things to keep me calm. What's the life expectency of someone on dialysis? I came across the following: " One would think this represented some degree of success, " Churchill remarked. " It is sobering, however, to examine the data from the USRDS [uS Renal Data System] in which a 40-year old who starts dialysis will have an expected survival of 9.3 years compared to 37.4 years for the general population. The situation is even worse for the 59-year old who has just a 4.3-year life expectancy compared to 20.4 years for someone in the general population. " http://www.ikidney.com/iKidney/InfoCenter/Library/CDN/Archive/EarlyRef erralNeeded.htm " There is a reduced life expectancy with chronic kidney disease, which, depending on frequency of dialysis, and underlying disease, can vary from 14.2 years (low risk) to 3.5 years (high risk). " http://www.medicalnewstoday.com/medicalnews.php? newsid=15669 & nfid=rssfeeds Neither was in reference to IgAN specifically. Do we have a better outlook? I've read in a few places that IgAN patients are typically the healthiest kidney patients. As an aside, when individuals are having problems or have received bad news, I do feel for them and send my prayers along with everyone else, but I leave it to the people who've been here longer, who know them better to respond. It doesn't mean I don't care, just trying to keep the email volume down. Warm wishes to all, B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2005 Report Share Posted February 17, 2005 Having chronic renal failure increases the risk of cardiovascular disease. There's no denying that. It's managed better these days, though. People with IgAN are a very tiny minority of esrd patients. The vast majority are there because of diabetes, and then the second largest group is there because of high blood pressure, not kidney disease like IgAN, plus many are very old. Both diabetes and high blood pressure also predispose to cardiovascular disease and other problems, so, it's not surprising that the average life expectancy of dialysis patients is much lower than the general population's. Other things happen too, like calcification of the heart valves. I know of no separate stats for IgAN patients. However, this is why we all hope to get a transplant ASAP. An average is an average, plus, this one is somewhat skewed negatively due to the above. Pierre Re: life expectency? > > > Hi B, > > The statistics for dialysis life expectancy are very slanted due to a large > number of people on dialysis being older and having other co-morbid > conditions. Many people on dialysis are there because of diabetes which has other > problems in addition to the kidney complications, and in general the older you > are, the shorter life expectancy in general. > > The good news is that those of us with IgAN tend to be younger and much > healthier otherwise with the exception of our kidneys so we do not fit into the > statistics. > > I do not know of a study of IgAN patients in particular, but I am sure if > they did one, our life expectancy would be much better than the general dialysis > population. > > I hope that eases your concern. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2005 Report Share Posted February 18, 2005 life expectency? Hey there, It's an unpleasant topic, yet if I can't ask these questions here, then where? I've a feeling my doctors sugar coat things to keep me calm. What's the life expectency of someone on dialysis? I came across the following: " One would think this represented some degree of success, " Churchill remarked. " It is sobering, however, to examine the data from the USRDS [uS Renal Data System] in which a 40-year old who starts dialysis will have an expected survival of 9.3 years compared to 37.4 years for the general population. The situation is even worse for the 59-year old who has just a 4.3-year life expectancy compared to 20.4 years for someone in the general population. " http://www.ikidney.com/iKidney/InfoCenter/Library/CDN/Archive/EarlyReferralN eeded.htm " There is a reduced life expectancy with chronic kidney disease, which, depending on frequency of dialysis, and underlying disease, can vary from 14.2 years (low risk) to 3.5 years (high risk). " http://www.medicalnewstoday.com/medicalnews.php? newsid=15669 & nfid=rssfeeds Neither was in reference to IgAN specifically. Do we have a better outlook? I've read in a few places that IgAN patients are typically the healthiest kidney patients. As an aside, when individuals are having problems or have received bad news, I do feel for them and send my prayers along with everyone else, but I leave it to the people who've been here longer, who know them better to respond. It doesn't mean I don't care, just trying to keep the email volume down. Warm wishes to all, B. To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2005 Report Share Posted February 18, 2005 Being on dialysis, I just take things one day at a time, and I try not to think about it too much, the same as I don't worry too much about things like the car that accidentally drove into a storefront I frequently walk by on my street yesterday. Statistically, I suppose I could have been there at the time, but I wasn't. Look, of course it's scary, but as I explained yesterday, these stats don't break down by healthy people vs people who are already pretty sick. Plus, it's surprising how many people are not compliant with diet, prescriptions, etc. Many don't exercise. So, all we can do is put the odds in our favour. I figure I'll be on dialysis for a while longer, then I'll get a transplant, and eventually I'll be on dialysis again. Then I'll be in the local paper for having had kidney failure for 30 years Pierre life expectency? > > > > > > Hey there, > > It's an unpleasant topic, yet if I can't ask these questions here, > then where? I've a feeling my doctors sugar coat things to keep me > calm. What's the life expectency of someone on dialysis? I came > across the following: > > " One would think this represented some degree of success, " Churchill > remarked. " It is sobering, however, to examine the data from the > USRDS [uS Renal Data System] in which a 40-year old who starts > dialysis will have an expected survival of 9.3 years compared to 37.4 > years for the general population. The situation is even worse for the > 59-year old who has just a 4.3-year life expectancy compared to 20.4 > years for someone in the general population. " > http://www.ikidney.com/iKidney/InfoCenter/Library/CDN/Archive/EarlyReferralN > eeded.htm > > " There is a reduced life expectancy with chronic kidney disease, > which, depending on frequency of dialysis, and underlying disease, > can vary from 14.2 years (low risk) to 3.5 years (high risk). " > http://www.medicalnewstoday.com/medicalnews.php? > newsid=15669 & nfid=rssfeeds > > Neither was in reference to IgAN specifically. Do we have a better > outlook? I've read in a few places that IgAN patients are typically > the healthiest kidney patients. > > As an aside, when individuals are having problems or have received > bad news, I do feel for them and send my prayers along with everyone > else, but I leave it to the people who've been here longer, who know > them better to respond. It doesn't mean I don't care, just trying to > keep the email volume down. > > Warm wishes to all, > B. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2005 Report Share Posted February 18, 2005 Hopefully during some point into your successful transplant science will have a drug to stabilize IgA progression. So that your KT will last a long time. BTW, does anyone have any opinion on that post about the orphan drug being tested? Even if it is not a complete cure or stabilizing drug, how long will it be before it hits the market from the phase it is in right now? Phil > Being on dialysis, I just take things one day at a time, and I try not to > think about it too much, the same as I don't worry too much about things > like the car that accidentally drove into a storefront I frequently walk by > on my street yesterday. Statistically, I suppose I could have been there at > the time, but I wasn't. > > Look, of course it's scary, but as I explained yesterday, these stats don't > break down by healthy people vs people who are already pretty sick. Plus, > it's surprising how many people are not compliant with diet, prescriptions, > etc. Many don't exercise. So, all we can do is put the odds in our favour. > > I figure I'll be on dialysis for a while longer, then I'll get a transplant, > and eventually I'll be on dialysis again. Then I'll be in the local paper > for having had kidney failure for 30 years > > Pierre > > > life expectency? > > > > > > > > > > > > Hey there, > > > > It's an unpleasant topic, yet if I can't ask these questions here, > > then where? I've a feeling my doctors sugar coat things to keep me > > calm. What's the life expectency of someone on dialysis? I came > > across the following: > > > > " One would think this represented some degree of success, " Churchill > > remarked. " It is sobering, however, to examine the data from the > > USRDS [uS Renal Data System] in which a 40-year old who starts > > dialysis will have an expected survival of 9.3 years compared to 37.4 > > years for the general population. The situation is even worse for the > > 59-year old who has just a 4.3-year life expectancy compared to 20.4 > > years for someone in the general population. " > > > http://www.ikidney.com/iKidney/InfoCenter/Library/CDN/Archive/EarlyReferralN > > eeded.htm > > > > " There is a reduced life expectancy with chronic kidney disease, > > which, depending on frequency of dialysis, and underlying disease, > > can vary from 14.2 years (low risk) to 3.5 years (high risk). " > > http://www.medicalnewstoday.com/medicalnews.php? > > newsid=15669 & nfid=rssfeeds > > > > Neither was in reference to IgAN specifically. Do we have a better > > outlook? I've read in a few places that IgAN patients are typically > > the healthiest kidney patients. > > > > As an aside, when individuals are having problems or have received > > bad news, I do feel for them and send my prayers along with everyone > > else, but I leave it to the people who've been here longer, who know > > them better to respond. It doesn't mean I don't care, just trying to > > keep the email volume down. > > > > Warm wishes to all, > > B. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2005 Report Share Posted February 19, 2005 Dear Pierre, You have a great attitude and outlook on life. Personally, I think we should ignore the statistics - it just adds additional worry when things are already stressful! -Elisabeth PS: Just to put the statistics in perspective, I read a story once about a man who had been on dialysis for about 28 years, and still going strong- no problem. Wish I remembered the rest of it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2005 Report Share Posted February 19, 2005 Thanks Elisabeth There are lots of stories of people being 25 plus years on dialysis, some even 30 years plus and counting. Like everything else, good living helps, as does exercise, good genes, following the diet, luck, etc. I don't take any comfort from other people's misfortunes, but, not having diabetes helps considerably because just that stresses and harms the cardiovascular system to a very great extent. People don't die from kidney failure today, they die mostly from cardiovascular complications of having had kidney failure for a long time - often heart failure. Some are just plain careless with potassium, phosphorus and fluid and eventually their luck runs out. Some don't eat well enough (it's extremely important to eat enough protein when on dialysis - moreso on PD, a bit less on hemo). It's also very important to start dialysis early as opposed to late. When people start late, usually, a lot of damage has already begun. We are lucky that today, nephrologists and the bean counters both agree that it's better to start people on dialysis early rather than waiting until the last possible minute. We also have much better pre-dialysis care, even over just the last 5-10 years, and that helps keep patients healthier until they do start dialysis or get a transplant. On the other hand, we must still do better, because the statistics overall are not improving. Some think it is because of the high-flux dialyzers we have today (since the mid-to-late 80's or so) that allow adequate dialysis in only 3-4 hours, 3 times per week. The dialyzers are very efficient, but the fast dialysis is harder on the body. It is becoming more and more obvious that slower, more frequent hemodialysis is superior, and that can only be affordable if patients dialyze at home. Pierre Re: life expectency? > > Dear Pierre, > > You have a great attitude and outlook on life. > Personally, I think we should ignore the statistics - it just adds additional worry when things are already stressful! > > -Elisabeth > PS: Just to put the statistics in perspective, I read a story once about a man who had been on dialysis for about 28 years, and still going strong- no problem. Wish I remembered the rest of it! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2005 Report Share Posted February 19, 2005 Not sure what happened to my text from my initial reply, but here we go again.... Modally, IgAN patients present with really decent clinical pictures aside from their underlying kidney issues. This is especially true when contrasted with diabetic patients who, by the time they reach dialysis, are generally in poor shape. A diabetic who controls her blood sugar well, or at least adequately, is not doomed to kidney failure and dialysis...it is the very brittle (and non-compliant) diabetics who end up in our crowd. Contrasting a 40 year old diabetic who hits dialysis with a 40 year old IgAN patient who does the same, in general, the IgAN patient is in far better health. People die on dialysis for a variety of reasons of course, but among them: cardiac disease, highly prevalent in this population, and worsened not only secondary to cholesterol deposition but also the " stress, " of hemodialysis, in addition to calcification of arterial placques secondary to hydroxyapatite deposition (caused by high phosphorous levels, which virtually everyone on dialysis ends up with, no matter how careful) strokes; same reasons as above infections; obvious causes non-compliance (a study of Medicare billings for dialysis vs prescriptions for same indicates something like 5 - 10 % or so of sessions are skipped relative to the script. At 150 sessions per year, more or less, for hemo, this is only about 8 sessions, and most of us wouldn't worry about skipping less than one session a month. Nevertheless, there is solid evidence that even this skip rate highly influences longevity. iatrogenic causes (mistakes by physicians, dialysis technicians, and the rest) And of course everything that the kidney healthy population dies of.... Also, note that IgAN patients can hit dialysis at 7 years old or 70. Very rare for a diabetic to hit dialysis that young. Bottom line to a long answer is that IgAN patients in general live longer on dialysis than the modal population, and that really is because, in general, we end up there healthier (i.e. less malnourished; fewer comorbid conditions; etc.) than the modal population. life expectency? Hey there, It's an unpleasant topic, yet if I can't ask these questions here, then where? I've a feeling my doctors sugar coat things to keep me calm. What's the life expectency of someone on dialysis? I came across the following: " One would think this represented some degree of success, " Churchill remarked. " It is sobering, however, to examine the data from the USRDS [uS Renal Data System] in which a 40-year old who starts dialysis will have an expected survival of 9.3 years compared to 37.4 years for the general population. The situation is even worse for the 59-year old who has just a 4.3-year life expectancy compared to 20.4 years for someone in the general population. " http://www.ikidney.com/iKidney/InfoCenter/Library/CDN/Archive/EarlyReferralN eeded.htm " There is a reduced life expectancy with chronic kidney disease, which, depending on frequency of dialysis, and underlying disease, can vary from 14.2 years (low risk) to 3.5 years (high risk). " http://www.medicalnewstoday.com/medicalnews.php?newsid=15669 & nfid=rssfeeds Neither was in reference to IgAN specifically. Do we have a better outlook? I've read in a few places that IgAN patients are typically the healthiest kidney patients. As an aside, when individuals are having problems or have received bad news, I do feel for them and send my prayers along with everyone else, but I leave it to the people who've been here longer, who know them better to respond. It doesn't mean I don't care, just trying to keep the email volume down. Warm wishes to all, B. To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2005 Report Share Posted February 19, 2005 Pierre, This is the exact reason my sister's neph " pushed " her to PD. He said that the up and down blood toxin levels typical of HD are rough on the system. He stated that PD did not remove as many toxins from the blood but PD offered a more stable toxin level in the blood. He thought this to be important especially for someone who is young and active. He thought PD would give her the longest bang in terms of life expectancy. Which she lasted 11 years on PD, the longest amount of time in her Baxter regional area of all their paitents! Baxter actually presented her with an award! As you might imagine, that went over big! Kinda of like winning the " Ah! You're not that ugly " beauty pageant! Phil > in only 3-4 hours, 3 times per week. The dialyzers are very efficient, but > the fast dialysis is harder on the body. It is becoming more and more > obvious that slower, more frequent hemodialysis is superior, and that can > only be affordable if patients dialyze at home. > > Pierre > > Re: life expectency? > > > > > > Dear Pierre, > > > > You have a great attitude and outlook on life. > > Personally, I think we should ignore the statistics - it just adds > additional worry when things are already stressful! > > > > -Elisabeth > > PS: Just to put the statistics in perspective, I read a story once > about a man who had been on dialysis for about 28 years, and still going > strong- no problem. Wish I remembered the rest of it! > > Quote Link to comment Share on other sites More sharing options...
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