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Author Topic: Life expectancy on dialysis.  (Read 121112 times)
kristina
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« Reply #200 on: March 21, 2016, 04:06:56 AM »

... I am not sure that I am able to wholeheartedly agree with the idea of "resurrecting" old posts from years ago,
especially since quite a few of the people writing years ago are no longer with us ...
Would it not be a much kinder idea if we could let past members and their thoughts truly Rest In Peace ?
... Of course, that does not mean we should not research old posts etc., but ... as I have already said above...
Kristina. :grouphug;
To All IHD Readers and Kristina,

Point well taken Kristina.

Here is how I view  the "resurrecting" of old posts :
There are new folks coming in to this forum seeking information in/on their health circumstances.
Finding of posts relating to specific conditions is not exactly an easy process. Even using the 'Search' function is not always productive, unless the 'Key' words are highly germane to the question. I've looked and searched for certain information here (IHD), and not found what I was looking for, yet eventually I find that same type of information sought, showing up under nonspecific conditions.

That the person may have passed, does not lessen the value of their words, to the one that is still seeking the information that was already posted.  Is actually honoring that persons words and effort for having posted. Were we to stop using words and quotes from those that have passed, I believe it would be a very dull world.

If I've spent time finding specific information, and what I feel is of more than casual interest, is it not better to bring such information up to the forums front end, for others to more readily read?

Have in a few instances, included many IHD links, regards related subjects, in the 'brought' forward topic.

If I recall even half correctly, there were at least five/six response posts, saying 'thanks for bringing this old topic back'.
Where this all eventually winds up.......................

http://ihatedialysis.com/forum/index.php?topic=25230.msg406132#msg406132

(added IHD link and added comment)

To talker: I wish you good luck in your indulgences ... but I shall continue to keep our of it because I still believe it is in very bad taste...
Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
kristina
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« Reply #201 on: March 21, 2016, 04:34:39 AM »

P.S.
... The absence of many IHD-members from years ago actually proves very clearly,
how very precarious life on dialysis is and how very difficult survival on dialysis can become ...
... and that again puts the "resurrection" of this thread in a very bad taste...
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Charlie B53
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« Reply #202 on: March 21, 2016, 08:36:40 AM »


You both raise valid points.

As I see it the primary question maybe of what value will the thread present to the current membership AND those other persons that visit IHD seeking answers.

Recently there have been a few posts by persons struggling with the decision of whether to begin Dialysis or forego treatment.

You both have to agree that is a very difficult and very personal decision that every individual must make for themselves.

Any and all information relative needs to be available, whether it is a current topic or easily searchable.  Talker pointed out searches are not always so easy, very word dependent, if you do not use the correct words AND in the correct order, a search may not produce results.   I see this most every day using Google.

To use the words of another dead guy, "You cannot please all the people all the time....'

At least we are all civil enough that we can respectfully agree to disagree, and move on.

Take Care,

Charlie B53
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kristina
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« Reply #203 on: March 21, 2016, 02:26:16 PM »


 Talker pointed out searches are not always so easy, very word dependent, if you do not use the correct words AND in the correct order, a search may not produce results.   I see this most every day using Google.


... I am sorry, but I have to strongly disagree again, because anyone in ESRF who really wants to do some serious research, can easily do so ...
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Michael Murphy
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« Reply #204 on: March 21, 2016, 06:33:28 PM »

If you are curious about your chances there is a app from Emory University that calculates your survival odds for one or three years.  I have only shown this to one of my fellow patients and I only showed him because his wife wanted him to get on the transplant list and he didn't want to. When he saw how much better the odds were for transplants he got on the list.  Just got transplanted.  The important thing is to be as complient as possible.  Excess fluid gains and foods that are not good put a additional stress on your body.  Yes you can die sooner if you are on dialysis but you may not since I have no control of this I ignore it.  The only notice I take of the odds is while my wife has survivor Benifits on my pension I don't have them on hers.
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Zach
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"Still crazy after all these years."

« Reply #205 on: March 21, 2016, 07:05:57 PM »

And we must remember, numbers are not people.

For me, it is my life outside of hemodialysis that keeps me going.
Each of us can find our own way to continue to make life interesting.

Regards,
--Zach
 :beer1;
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
kristina
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« Reply #206 on: March 22, 2016, 03:10:44 AM »

And we must remember, numbers are not people.

For me, it is my life outside of hemodialysis that keeps me going.
Each of us can find our own way to continue to make life interesting.

Regards,
--Zach
 :beer1;

Thank you Michael Murphy for your kind thoughts and thank you Zach for saying that numbers are not people ...
What may also count is what we make of our life despite these health-issues ... and how much we let these health-issues "get at us" ...
or, how much we let these circumstances not "get at us" ...
As Nazim Hikmet once said: ... To be captured is beside the point :  the point is not to surrender...
Thanks again from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Charlie B53
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« Reply #207 on: March 22, 2016, 06:02:25 AM »

..............................
What may also count is what we make of our life despite these health-issues ... and how much we let these health-issues "get at us" ...
or, how much we let these circumstances not "get at us" ...

As Nazim Hikmet once said: ... To be captured is beside the point :  the point is not to surrender...
............................

All very wise words that should be very well displayed so many people will noticed and take heed.

As a Child growing up there was a Girl abit older than I right next door.   I don't recall the affliction that Jill had, but it was very debilitating and she could not attend school.  And it was widely know that she was not expected to reach adulthood as this affliction was 100% fatal.

Jill had the determination that she WAS going to finish school.  The School and all the Teachers would take the time to write their lectures, take notes of all classroom sessions and proved these to Jill for study.  Jill finshed Grade School and also finished High School with excellent grades.  Jill applied and was accepted to College.  Staff there did much the same as the other schools and Jill did very well in maintaining a very high Grade Point Average.

Being so young I do not remember if Jill Graduated College,  All I remember is the sadness of the whole neighborhood at her passing.

Jill knew from early on that she was going to die, but she had the determination that before she died that she would complete her education just as if she were 'normal'.

Jill never surrendered.
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kickingandscreaming
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« Reply #208 on: March 22, 2016, 09:19:57 AM »

I, for one, appreciate the resurrection of these old threads.  i am relatively new to IHD, and even if the search function was stupendously good, I wouldn't know to even look for these topics  buried here.  I do NOT consider it in "bad taste" at all.  It is historical information.  And it helps me to know some of the longer-term denizens of this forum better. 

I'm in no denial that my life is likely to be shortened because I have this disease.  Any comfort it might bring me to pretend it's not gonna happen is only a pretense. I'd rather have my eyes open.  Most knowledge is s good thing.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
talker
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« Reply #209 on: March 23, 2016, 01:13:52 AM »

I, for one, appreciate the resurrection of these old threads.  i am relatively new to IHD, and even if the search function was stupendously good, I wouldn't know to even look for these topics  buried here.  I do NOT consider it in "bad taste" at all.  It is historical information.  And it helps me to know some of the longer-term denizens of this forum better. 

I'm in no denial that my life is likely to be shortened because I have this disease.  Any comfort it might bring me to pretend it's not gonna happen is only a pretense. I'd rather have my eyes open.  Most knowledge is s good thing.
Thank you kickingandscreamin for your well expressed thoughts here, regards the reviving of old, buried threads.
Yes, I did read through many old threads.
Did believe what I was doing would /could benefit others. In that I saw merit in the doing, I took the time to bring them back to life.
My efforts though, was not to the liking of one person, and led to some unkind words being said by that person.
I truly wish that person wellness.
Am I thin skinned, not at all.
With out going into detail, 'If I have to tip-toe through the tulips while posting, I much prefer to NOT post at all.'
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Be Well

"Wabi-sabi nurtures the authentic by acknowledging three simple realities: nothing lasts, nothing is finished, and nothing is perfect."

Don't ever give up hope, expect a miracle, pray as if you were going to die the next moment in time, but live life as if you were going to live forever."

A wise man once said, "Yesterday's the past, tomorrow's the future, but today is a gift. That's why it's called the present."
kristina
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« Reply #210 on: March 25, 2016, 04:33:16 AM »

..............................
What may also count is what we make of our life despite these health-issues ... and how much we let these health-issues "get at us" ...
or, how much we let these circumstances not "get at us" ...

As Nazim Hikmet once said: ... To be captured is beside the point :  the point is not to surrender...
............................

All very wise words that should be very well displayed so many people will noticed and take heed.

As a Child growing up there was a Girl abit older than I right next door.   I don't recall the affliction that Jill had, but it was very debilitating and she could not attend school.  And it was widely know that she was not expected to reach adulthood as this affliction was 100% fatal.

Jill had the determination that she WAS going to finish school.  The School and all the Teachers would take the time to write their lectures, take notes of all classroom sessions and proved these to Jill for study.  Jill finshed Grade School and also finished High School with excellent grades.  Jill applied and was accepted to College.  Staff there did much the same as the other schools and Jill did very well in maintaining a very high Grade Point Average.

Being so young I do not remember if Jill Graduated College,  All I remember is the sadness of the whole neighborhood at her passing.

Jill knew from early on that she was going to die, but she had the determination that before she died that she would complete her education just as if she were 'normal'.

Jill never surrendered.

Many thanks Charlie for mentioning Jill's story and her great determination!
Her story is very similar to ours in our ESRF, as we also know that we might die much earlier than many healthy people of similar age, but at the same time we are also given the chance to either make something out of our life - despite our ESRF - or "just give up" ... the choice is ours ...
Many thanks again for mentioning Jill's story from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
okarol
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« Reply #211 on: June 26, 2016, 12:35:50 AM »

And we must remember, numbers are not people.

For me, it is my life outside of hemodialysis that keeps me going.
Each of us can find our own way to continue to make life interesting.

Regards,
--Zach
 :beer1;

 :-*
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
Now needs a new kidney, 7 yr transplant lost due to rejection.
She started PD Sept. 2013
Searching for a living donor using social media, friends, family.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Jenna is an artist, she loves music, is a fan of ComicCon, and has been writing stories since she was little.
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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« Reply #212 on: July 21, 2018, 12:15:27 PM »

I had no idea I was in kidney failure when I was diagnosed with Stage 5 at 54 years old.. I went through reading everything on the internet I could and kept seeing numbers. 4 years, 12 years, 20 years survival rates and life expectancy. So I decided I could not live on a clicking clock. I would take control of my own health and care much as I could and squeeze out as much life as possible. I am lucky enough to be in home PD and making the most of everything I can. Like everyone else I have good days and bad days but I have days and that is what really counts. Be proactive, mind over matter can count sometimes.
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Michael Murphy
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« Reply #213 on: July 21, 2018, 12:55:54 PM »

I had a major heart attack 18 months ago that has largely constrained any physical activity, my life expectancy is not that great.  This seems to bother every one but me.  While I was listening to the doctors my first night after the heart attack I heard that I was not expected to make it through the night,  I took two things from that, if you easedrop on private conversations you may not like what you hear, and two itís not the quantity of years but the quality of the years you have left.  Without   Dialysys I would be dead many years now so anyway you look at it I am in my bonus years.  I am still enjoying my time left with luck I have more to come,  my first heart attack was in 2008 second in 2016,so I figure 6 more years. 
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Bill Peckham
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« Reply #214 on: August 18, 2018, 08:41:55 AM »

You know what they say - it isn't the length, it's the width. A wide life, taking all each day offers, pushing the edges. How far can you take it today, going side to side?
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
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