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Author Topic: How have your hopes and dreams been changed?  (Read 7575 times)
monrein
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« Reply #25 on: June 14, 2010, 07:48:47 AM »

Now that my life expectancy has been greatly reduced, I see no point in making any long-term commitments. Even medium-term commitments are dubious.

For example, my 1995 Honda Civic car is 15 years old (obviously!), and it's gotten to the point that I need to replace it.  Normally, I would buy another Honda Civic--those cars are very reliable, and another Civic may last me another 15 years.  The problem is, I may not last another 15 years.

So I figure:  What's the point of buying a brand-new shiny Civic or Acura or other fine car that may last another 10-15 years, when I won't last that long?  I might as well save some money and buy a used Chevy Cobalt. By the time it dies, I'll be dead too.  Most likely my heart will give out before the Chevy Cobalt's engine does.

I've been ignoring the odds but nurturing and coaxing along my lemon of a body for a very long time now and I think you should too.  A new Civic might make you feel a little shinier too and if the money's in the bank might as well leave a car as the money if you lose the game of defying the stats.  Whenever I learn of some new potential or actual complication of ESRD (whether personal or theoretical) I absorb the gravity of the thing and set about living as if I can be the exception to the "rule".  Not by ignoring the situation but by trying to minimize the potential for making things worse and capitalizing on what I can do to improve or maintain my status quo.  One day my luck will run out but so far I'm keeping up with my so-called "normal" friends quite well.  Traveling in Burma a long time ago, I was amazed by the truly ancient cars that were lovingly kept on the road (you can see this in Cuba too) and I figure I'm just being my own creative mechanic.
None of us know when our hearts or anything else will give out, we can only be prepared, know that we won't be around forever and yet live as if tomorrow will come as usual.  Functional denial, you know.   :cuddle;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
galvo
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« Reply #26 on: June 14, 2010, 09:17:04 AM »

Since my heart attack, I have to admit that I've been living in fear. I'm off to see the heart dudes to-day and we'll see what they have to say. The words of the heart surgeon, who did the angiogram and inserted the stents, still ring in my ears -"I did the best I could with what was placed in front of me".
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Galvo
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« Reply #27 on: June 14, 2010, 10:17:55 AM »

"I did the best I could with what was placed in front of me".

whoa..well i reckon this can be said of many things. the checkbook, making a meal from scraps, your honeymoon, and them dern stepkids..
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cariad
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« Reply #28 on: June 14, 2010, 10:46:24 AM »

Those are certainly haunting words, Galvo. :cuddle; I wish I knew how to get rid of the fear for you.

Good point, Noob.

RightSide, I agree with monrein, buy that car. Cars are more fuel efficient today, so less time wasted at the fuel station, more fun little features, smoother ride, plus free repairs for the length of the warranty. I personally think, with all the self-educating you've done on ESRD, that you are going to be around for a good long time. :cuddle;

Whenever I learn of some new potential or actual complication of ESRD (whether personal or theoretical) I absorb the gravity of the thing and set about living as if I can be the exception to the "rule".

Oh, monrein, I believe you are the exception. You're a statistical outlier, plus you put your energy into learning and maintaining health. I have lived my life believing that my kidney would never fail. No one told me any differently, and my reasoning as a child was that no one would be angry and shouting at me for being sick if it weren't my fault. I lived at least 20 years thinking that if my kidney failed, it was because I did something wrong. Not denial, as no one explained otherwise. I liken it to that old story of the bee - that bees fly because they don't realize that they cannot fly. (Always found it a cute story, even though I know it's not true. Bees live within the laws of physics like all the rest of us.)

I still have a certain feeling of medical invincibility. Now I'm mature enough to just do what my doctor says, even though part of me thinks I could go it alone and be fine.
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
MooseMom
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« Reply #29 on: June 14, 2010, 12:37:42 PM »

Since my heart attack, I have to admit that I've been living in fear. I'm off to see the heart dudes to-day and we'll see what they have to say. The words of the heart surgeon, who did the angiogram and inserted the stents, still ring in my ears -"I did the best I could with what was placed in front of me".

I'm eager to hear what the heart dudes told you.  Will you let us know?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
galvo
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« Reply #30 on: June 14, 2010, 12:59:22 PM »

Sure will.
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Galvo
lou
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« Reply #31 on: June 14, 2010, 01:16:28 PM »

I have to admit I have to agree with Richard - I haven't changed any of my hopes and dreams!

Luckily (I suppose!) I have never wanted children but my main dream in life has always been to see as much of the world as possible.  I did a bit of travelling before I statred dialysis and now I have had a transplant I am just waiting until my blood tests are far enough apart (fingers crossed all still continues going well) and I will be planning the next trip.
I know it will never be as easy as I once thought it would be - I wont be able to just jump on a plane without planning all the health possibilities and I know I will always be more cautious about food wherever I go, but I am absolutely determind to still do these things. I always remember being told by one of the docs when I was first diagnosed that a kidney transplant is such an amazing gift and a second chance at life really - I guess I feel like I have no intention of wasting this gift sitting at home being too scared to go anywhere (and I know how easy that would be to do) I feel like as long as I do everything in my power to look after this wonderful kidney - eat well, exercise, take pills on time, etc - then I need to make the most of life and I know I certainly appreciate every single day now in a way I guess I never did before. x x x
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RichardMEL
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« Reply #32 on: June 14, 2010, 06:20:00 PM »

woo hoo I love it when an (attractive) lady agrees with me!!  :rofl;

I think one thing ESRD has taught me is to value what I have and to "just do it!" because you never know what is around the corner and what you have left - that's not a "reduced life expetancy" thing but just well... you just don't know.. so I try to take opportunities where I can(within reason of course) and yes, when that transplant comes, I intend tomake the most of it - it may last 6 months, 2 years or 10 years... so I want to get the most out of that gift.. so I will be travelling, seeing everyone I want to see(yes, that's IHDers in Vegas!!) and all that. I don't want to sit around not using that relative freedom I will have.. and luckily I have some financial freedom to do that sort of thing(well hopefully anyway!).... so my dreams are intact and just waiting to get going (again!)

Galvo... try to not be too scared.. that's pretty hard stuff to hear from the heart guy, but you could be the bloke that proves him wrong and be that amazing guy. Having cats is definitely a positive - I am 110% convinced having my cat (ok, my cat having me!) has improved my overall health, stress levels, BP, etc...

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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
The Noob
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« Reply #33 on: June 14, 2010, 09:32:55 PM »

Now Galvo, no offense was intended, was trying to get you to laugh a bit. hon i sure see what your going through to a small extent and wish i could send you these extra cats we got..*grin*  :grouphug;
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galvo
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« Reply #34 on: June 15, 2010, 12:18:48 AM »

Absolutely no offence taken, Noob. I needed a chuckle. I agree with you re the little furry ones, Richard.

Had the echocardiogram done to-day, and actually saw my heart beating. That was a relief! No on the spot report - I will find out result when I see the specialist on 9 July. I have been drained with my dry weight being reduced from 89kgs to 83.5kgs, and I think this has done me the world of good.
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Galvo
monrein
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« Reply #35 on: June 15, 2010, 03:21:44 AM »

Glad that fluid is off and I bet your heart is too Galvo.   :cuddle;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
MooseMom
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« Reply #36 on: June 15, 2010, 11:42:42 AM »

Galvo, it would drive me nuts having to wait that long to find out the results, but at least you know your heart exists and it is beating!  Please don't forget to let us know what you find out on the 9th.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Sunny
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Sunny

« Reply #37 on: June 15, 2010, 02:31:05 PM »

This summer for my 50th birthday my husband and I were going to go to New York City to see the museums and a Broadway play.
I had to face the fact it's not going to happen because I just don't have the energy.This is the first summer I will not be travelling because I just can't find the physical strength and stamina. We will go to Lake Tahoe for ten days because we have a family cabin there and I feel safe and comfortable there. This is a big change for me. For those of you with kidney transplants, get out there and enjoy it.
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
bette1
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My dear daughter

« Reply #38 on: June 15, 2010, 10:59:42 PM »

I went on dialysis at age 20, so at that point my goal was to finish college and have a husband and family.  I feel like I have pared back my goals because I was never that interested in being a big shot career wise.  I liked working and have done well at all my jobs, but my priority since having kidney failure was relationships, and experiences.  We've never had a lot of money, but we've traveled quite a bit. 

My goal now is to dance at my daughters wedding, and she'd better not marry at 18!  I want to go back to work to save for her college and take my little girl to Disney world.   I also want to give back to the friends who've stuck by me through all my illnesses. They may be small goals but they reflect what's most important to me.  I think having kidney failure young taught me what is most important in like and I was able to bypass a lot of bullcrap.
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Diagnosed with FSGS April of 1987
First Dialysis 11/87 - CAPD
Transplant #1 10/13/94
Second round of Dialysis stated 9/06 - In Center Hemo
Transplant  #2 5/24/10
RichardMEL
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« Reply #39 on: June 16, 2010, 03:03:25 AM »

Funny. I saw a psychic today(that's a whole other story) but one of the things she kept saying many times and that I had to laugh at a bit was that I will have a LONG LIFE and live till I'm in my 90's....  :rofl; :rofl; :rofl; :rofl; :rofl; :rofl;

So there my dreams are not changing because the psychic said so!!  :)  :bandance;
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
bette1
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My dear daughter

« Reply #40 on: June 16, 2010, 04:33:09 AM »

RichardMEL - Funny coincidence I saw a palm reader years ago and she told me I'd have one child - a daughter and that I'd raise her wrong and have problems.  She also said that health would not be an issue for me.  Crazy!
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Diagnosed with FSGS April of 1987
First Dialysis 11/87 - CAPD
Transplant #1 10/13/94
Second round of Dialysis stated 9/06 - In Center Hemo
Transplant  #2 5/24/10
karen547
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« Reply #41 on: June 22, 2010, 11:23:48 AM »

Well, my goals are somewhat different now that's for sure! I am in school to be an Esthetician now, as before I wanted to be a Psychologist- I am now setting goals for myself that are not years in the making, because time is precious! I also have had to give up in a sense, my own body, I sometimes feel as it isn't mine! I am not planning any big trips until after my transplant, whenever that will be! I am basically still leading the same life but I just have to rearrange things to accommodate dialysis! :grouphug;
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Des
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« Reply #42 on: June 23, 2010, 03:18:48 AM »

at 43 starting dialysis the ideal life that I was in, already changed - work changed, friends changed, holidays non-existant,

My future career dreams and goals have changed because all the hard work in my career got wiped out like it never happened and it feels like I am starting all over again.

I am just glad that I will still be around for my kids weddings and meeting my grandchildren (I hope)

Other than that - I am covered.

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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
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