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Author Topic: One year anniversary today  (Read 4702 times)
Desert Dancer
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« on: August 22, 2011, 10:19:45 AM »

Hard to believe a year ago yesterday I was grey as a filing cabinet and gasping for breath. A year ago today I had a catheter inserted and my first dialysis session in the hospital. What a helluva ride it's been! It already seems like a lifetime ago.

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August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
billybags
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« Reply #1 on: August 22, 2011, 11:11:37 AM »

I bet it seems a long year. But ay haven't you learnt a lot. Hope your next year is a little easier.
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lmunchkin
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"There Is No Place Like Home!"

« Reply #2 on: August 22, 2011, 11:18:23 AM »

I bet it has seemed like a long time, DD.  I take it your fistula has done well for you?  I guess it will soon be a year doing home nocturnal, I bet you get a Good Cleaning on that, huh?   Happy Anniversary, DD!!!! :wine;

lmunch

 :kickstart;
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
MooseMom
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« Reply #3 on: August 22, 2011, 12:57:59 PM »

Hard to believe a year ago yesterday I was grey as a filing cabinet and gasping for breath. A year ago today I had a catheter inserted and my first dialysis session in the hospital. What a helluva ride it's been! It already seems like a lifetime ago.

No doubt you were happy that after beginning D, you were no longer "filing cabinet grey" because, frankly, that's a very unattractive hue.  But now that a year has passed, how do you feel about being on D longterm?  I know you are probably past the "honeymoon period" that I've heard other IHDers talk about, so now that you've settled in for the long haul, do you feel that D has found a reasonably comfortable niche in your life?  Do you feel like you are thriving despite dialysis or even because of it?  I'd really be so interested in hearing your thoughts on this.  Thank you.
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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."
Desert Dancer
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« Reply #4 on: August 23, 2011, 10:49:42 AM »

I bet it seems a long year. But ay haven't you learnt a lot. Hope your next year is a little easier.

Thanks, billybags! I hope so, too.

I bet it has seemed like a long time, DD.  I take it your fistula has done well for you?  I guess it will soon be a year doing home nocturnal, I bet you get a Good Cleaning on that, huh?   Happy Anniversary, DD!!!! :wine;

Fistula's done fantastic! (Knock wood) I hope it's just like my dad's; his was still buzzing along after 20 years.

No doubt you were happy that after beginning D, you were no longer "filing cabinet grey" because, frankly, that's a very unattractive hue.  But now that a year has passed, how do you feel about being on D longterm?  I know you are probably past the "honeymoon period" that I've heard other IHDers talk about, so now that you've settled in for the long haul, do you feel that D has found a reasonably comfortable niche in your life?  Do you feel like you are thriving despite dialysis or even because of it?  I'd really be so interested in hearing your thoughts on this.  Thank you.

I think we've probably settled in as well as we ever will. We've managed to streamline it to the point where I don't feel it really interferes with life much: about a half-hour to set up and a half-hour to tear down, and an hour or so a month to deal with supplies. I'd definitely say I'm thriving physically because of dialysis. I'm so incredibly grateful that home nocturnal was available to me. It's allowed me to feel downright normal and to resume most of my life.

Emotionally is another matter. It's been a year of wrenching myself out of the future, plopping myself down into the present and telling myself to stay put. I spent a lot of this first year staring at a 'One Day at a Time' plaque hanging in my bedroom. I try not to think about the 'long haul' because that's the quickest way to despair for me. Lord knows I'd rather have my old life back - who doesn't? - but it's just not gonna happen. So it's been a year of practice, practice, practice to cultivate a positive attitude toward it and stay grounded in the moment. Soon it will be second nature, I hope, as it has in the past with other things.
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August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
MooseMom
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« Reply #5 on: August 23, 2011, 02:10:11 PM »

I don't know for sure, but I suspect that if you are physically thriving, then the emotional impact of dialysis will be more bearable.

I know what you mean about struggling to stay in the present and not allowing yourself to drift into thoughts of the future.  Of course, that could be said for anyone.  Even if you are healthy, wealthy and wise, there's nothing to say that you will still be in that condition a year from now.  But you have chosen the modality that gives you the best chance for a long and happy life, so in a way, you have already influenced your future for the better.

Thanks for your honest reply!
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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."
AguynamedKim
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« Reply #6 on: August 23, 2011, 08:25:09 PM »

I'm not quite sure what to say for an anniversary such as this but I'm going to go with great job handling your care and getting yourself to a relatively normal life. I know that it can be very difficult to do from what I've read here at IHD and you should be really proud of yourself.
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Lucinda
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Life is great!

« Reply #7 on: August 23, 2011, 10:34:52 PM »

HI Desert Dancer

It gets even better after the second year and it just becomes something you have to do.  I feel as good on dialysis as I have ever felt.  My first year was a real grind though.  Always issues.  Now I feel terrific and I have very few issues with it.  I see my neph every three months, she tells me my bloods are terrific and I leave.  That's it.  Don't think you won't feel as well as you did before, I certainly do and it has nothing to do with getting use to feeling bad.  I work fulltime, do heaps of exercise and basically a lot healthier than my non-dialysis friends.  But I have only really been like that the last year.  It takes a while for your body to adjust but now it has and I feel absolutely no different to when I had kidney function - better in fact.

Happy Anniversary!  The second anniversary should be better and you should be feeling pretty close to back to normal.   
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rsudock
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will of the healthy makes up the fate of the sick.

« Reply #8 on: August 24, 2011, 01:41:06 AM »

DD glad you are still kicking and making the best of it!

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
Desert Dancer
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« Reply #9 on: August 24, 2011, 05:32:55 AM »

I'm not quite sure what to say for an anniversary such as this but I'm going to go with great job handling your care and getting yourself to a relatively normal life. I know that it can be very difficult to do from what I've read here at IHD and you should be really proud of yourself.

Thanks, Kim! Yeah, it is a kind of strange anniversary to 'celebrate', isn't it? But it's better than the alternative!


HI Desert Dancer

It gets even better after the second year and it just becomes something you have to do.  I feel as good on dialysis as I have ever felt.  Happy Anniversary!  The second anniversary should be better and you should be feeling pretty close to back to normal.   

Thanks, Lucinda! There's kind of this feeling of, "Okay, I've mastered this, now on to the next thing" except every time I think that I realize there is no "on to the next thing". That can be horrifying if I allow it to be! But I really am feeling great and I have everything exactly the way I want it, so I really can't complain. (Though I'm sure I will from time to time!)

DD glad you are still kicking and making the best of it!

Thanks, Rachel!
Logged

August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
paris
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« Reply #10 on: August 24, 2011, 06:42:52 AM »

You are a good example of what a newbie can relate to.  You have a great attitude.  It is worth celebrating.    :bestwishes;   You are living and still enjoying life!    And I am soooooo glad!!   I'm proud of you   :cuddle;    :2thumbsup;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Desert Dancer
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« Reply #11 on: August 24, 2011, 10:37:56 AM »

You are a good example of what a newbie can relate to.  You have a great attitude.  It is worth celebrating.    :bestwishes;   You are living and still enjoying life!    And I am soooooo glad!!   I'm proud of you   :cuddle;    :2thumbsup;

Thanks, Paris!
Logged

August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
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