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Author Topic: Has kidney failure changed you?  (Read 12300 times)
Bette
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« Reply #25 on: November 27, 2006, 01:35:40 PM »

I have had kidney failure since I was 19.  It has shaped who I am as a woman in a large part.  I struggle with the what if's.  I know that I would have made different choices in my life if I had not had my health issues.  However, it has given me an appreciation for life and for what's really important. 

It has made me appreciate all the little things in life, I has helped me find joy in everyday.   I learned to be thankful for what I have and to feel blessed.

It has made me appreciate family and friends much more than career, and not to value money as much.  I has taught me to look for friends who accept you for who you are and not what you have.

It's made me very strong and determined to do the things that I wanted to do.  I has taught me to have faith in God and to believe in the power of prayer.


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goofynina
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« Reply #26 on: November 27, 2006, 01:59:21 PM »

I have had kidney failure since I was 19.  It has shaped who I am as a woman in a large part.  I struggle with the what if's.  I know that I would have made different choices in my life if I had not had my health issues.  However, it has given me an appreciation for life and for what's really important. 

It has made me appreciate all the little things in life, I has helped me find joy in everyday.   I learned to be thankful for what I have and to feel blessed.

It has made me appreciate family and friends much more than career, and not to value money as much.  I has taught me to look for friends who accept you for who you are and not what you have.

It's made me very strong and determined to do the things that I wanted to do.  I has taught me to have faith in God and to believe in the power of prayer.





AMEN Bette,  AMEN
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Fighter
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« Reply #27 on: November 27, 2006, 02:57:26 PM »

Of course CKD has changed me.

 I am in the beginning stages of FSGS and hoping to go in remission, it does look possible, so i feel guilty feeling the way I do about some things. The tiredness, nauseousness and depression is probably what gets me the most.

 What some of you have been through makes my situation almost insignificant, but I needed the wake up call I guess. I could really care less about my mortality,(no pain please) but Like most of you I am not near where I expected to be in life.

It has changed my ability to work the way I used to which in turn affects my income. There are times I'm just exhausted and can't do things with my son like I used to. My mother in law thinks I'm lazy. Which effects how you feel about yourself. Some of the things I used to do just are not fun anymore because your just too tired.

When I received my diagnosis I wasn't even surprised, I just said it figures cause it came at a time in my life where I was just crawling out of one hole, and thats just how my whole life has been. I get over a bad period of my life just in time for another. Everyones story on IHD has touched my heart in a positive way because a person starts to realize that they are not alone, and there are others out there that have it worse, and that is the best therapy in the world.( not that others have it worse but that others have perservered through more)

I thank all the IHD members who have laid their lives out for everyone to see, it is a gift to the reader sometimes.



sluff, you rock!
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Sluff
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« Reply #28 on: November 27, 2006, 04:38:19 PM »

Of course CKD has changed me.

 I am in the beginning stages of FSGS and hoping to go in remission, it does look possible, so i feel guilty feeling the way I do about some things. The tiredness, nauseousness and depression is probably what gets me the most.

 What some of you have been through makes my situation almost insignificant, but I needed the wake up call I guess. I could really care less about my mortality,(no pain please) but Like most of you I am not near where I expected to be in life.

It has changed my ability to work the way I used to which in turn affects my income. There are times I'm just exhausted and can't do things with my son like I used to. My mother in law thinks I'm lazy. Which effects how you feel about yourself. Some of the things I used to do just are not fun anymore because your just too tired.

When I received my diagnosis I wasn't even surprised, I just said it figures cause it came at a time in my life where I was just crawling out of one hole, and thats just how my whole life has been. I get over a bad period of my life just in time for another. Everyones story on IHD has touched my heart in a positive way because a person starts to realize that they are not alone, and there are others out there that have it worse, and that is the best therapy in the world.( not that others have it worse but that others have perservered through more)

I thank all the IHD members who have laid their lives out for everyone to see, it is a gift to the reader sometimes.



sluff, you rock!

Thanks
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Crobake
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« Reply #29 on: November 27, 2006, 05:31:39 PM »


When I received my diagnosis I wasn't even surprised, I just said it figures cause it came at a time in my life where I was just crawling out of one hole, and thats just how my whole life has been. I get over a bad period of my life just in time for another.


There are a few lines in your story I can definitely relate to. The list of things I "can't" do is growing and the list of things I "want" to do is shrinking because of it. That's how esrd has changed my life. Thanks for sharing Sluff
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sandman
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« Reply #30 on: November 27, 2006, 06:44:42 PM »

I was drinking with friends all the time always hanging out and had a good tolerance (I could drink any guy under the table where now .. can't even have 1000ml of any non-alcoholic fluid  :'().

 :o I don't suppose drinking like that would have been a good thing for you to begin with.  But damn.  I am willing to bet you could still drink me under the table.  Just 2 12oz beers and I am drunk.  :-[
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jollor
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« Reply #31 on: April 17, 2007, 09:24:30 PM »

My biggest thing is worrying about my mortality. I'm always thinking of the possible ways of me dying early because of dialysis. There are things I want to do and I worry about not getting to do them. Of course if I ever mention my fear of dying early people always downplay my concerns which gets really annoying. I've also become a very grumpy person. I used to be so happy go lucky but that has definitely changed. About the only positive thing is the wonderful weight loss. Dialysis is the best diet I've ever been on.
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Sluff
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« Reply #32 on: April 17, 2007, 10:01:19 PM »

I think a lot of people go through the same feelings Jollor. Thats what is great about this site though, others really do understand.
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Adam_W
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« Reply #33 on: April 18, 2007, 06:39:18 AM »

Kidney failure has changed me a lot negatively from a physical standpoint. I used to be very active in bicycling. I would go for 50 mile rides regularly, and if I needed to go to a store or something, I always rode my bike there. Now, I get tired just riding my bike two miles to my church. I have noticed a lot of positive changes, however. Despite the many emotionally bad days I've had, I no longer take life for granted, because I know how quickly I could lose it. I also seem to be becoming something of an advocate for kidney health, and also I'm becoming an advocate for self-care dialysis. So, it really hasn't been all bad. Take care.

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
kitkatz
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« Reply #34 on: April 18, 2007, 10:08:18 PM »

I have said it before Death rides with me and I am taking him for quite a ride!
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Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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« Reply #35 on: April 19, 2007, 07:30:19 AM »

Yes, for the good. It's bringing me closer to God and people that care.
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« Reply #36 on: April 19, 2007, 07:48:04 AM »

I am amazed at how many sentences i could take from this thread and make my own , i didnt realize how much my feelings had in common with all yours. Without this site , i would be sat here thinking was i the only one that felt like this ..at the renal unit i attend they make me feel like that, i shouldnt have down days ,negative attitude , life still goes on , its just dialysis ..yes but its ME thats doing it! I have told the nurses , ok so you work with us every day .. but YOU dont actually have kidney failure .I just LOVE you folk on here and the way you understand  :-*
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Duane
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« Reply #37 on: April 19, 2007, 08:41:37 AM »

I look forward to dialysis. I'm on disability now and i've worked all my adult life. this is my first year into disability/retirement knowing that loss of income is part of the package.

I've squandered most of the money i've made over the yrs anyway and i've never seen, read, or heard about a U-HAUL truck at a funeral.

All is vanity and vexation of spirit and there's nothing new under the sun that hasn't already been done.

Fear God and follow his commandments is my duty in life today. I'm busier now than when i worked 40hrs a week. Some days all i do is rest and that's hard work. ??? :clap;
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1 Corinthians 9:24  In a race, everyone runs but only one person gets first prize. So run your race to win.
MyssAnne
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« Reply #38 on: April 19, 2007, 01:17:35 PM »

There are so many statements I can relate to, and recognize in myself. The anger, the frustration, the depression, the acceptance, and reliance on others and God. At this stage, and really, we are all going through stages, I am in survival mode, trying to hang on while working full time (not doing well there, either!), and have a family life with others outsiide the home.
That means effort on my part, which translates to energy. I don't always have it! I am more calm though. More compassionate, more understanding of others and their troubles.
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kitkatz
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« Reply #39 on: April 19, 2007, 04:04:11 PM »

Well folks I lost my mind at work today. I stood up in the middle of a special education meeting and informed them I was considering half days at work and said I was stressed personally and physically and on the job stress was killing me.  I, then, burst into tears and walked out of the meeting.    That's telling them!
« Last Edit: April 19, 2007, 05:01:02 PM by kitkatz » Logged



lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
MyssAnne
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« Reply #40 on: April 19, 2007, 04:12:42 PM »

Wow KitKatz. I'm glad you're considering that. I sure hope it works out that way for you! I totally understand, I would like to go to part time too, but can't right now, darn it.
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Stacy Without An E
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« Reply #41 on: April 19, 2007, 04:58:59 PM »

I've been dealing with ESRD since I was ten years old.  With two kidney transplants and a total of 4 years on Dialysis, I occasionally wonder what type of person I would have become WITHOUT health problems.

I find that I'm not as easy to laugh or joke, I'm much more reserved and less open to socializing.

But I still fight it every day.  I work out three times a week and go hiking on the weekend.  I forced myself to go to Six Flags a couple of weeks ago and although it took the entire next day to recover, I'm glad I endured.

But with all the waiting for Dialysis to end and endless doctor's appointments, my appreciation for patience has grown considerably.

My main concern these days is the future.  It's difficult enough in your mid-30's to date with normal health, but when you have health issues, some women view you as "damaged goods."

The question of mortality isn't really an issue as I've always survived.  It's the quality of that survival that worries me and has changed me in ways I may never realize.
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Stacy Without An E

1st Kidney Transplant: May 1983
2nd Kidney Transplant: January 1996
3rd Kidney Transplant: Any day now.

The Adventures of Stacy Without An E
stacywithoutane.blogspot.com

Dialysis.  Two needles.  One machine.  No compassion.
Bajanne
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« Reply #42 on: April 19, 2007, 05:38:14 PM »

I felt quite frustrated today.  As I told in another thread, I am going to have to go 4 days without dialysis and they are all making me feel so guilty and fearful at my centre.
I used to travel a great deal.  Now I can only be a weekend traveller if I don't want to spend a lot of money on dialysis in other countries.  This one time, I have to take an extra day and it is such a big deal!
A few weeks ago, I was talking with a friend and I said, "I think I will go and spend 6 weeks in St. Croix, just chilling and spending time with various friends I have there, since I have never been there, and it is one of the US Virgin Islands, my neighbour"
Then she replied "But what about dialysis?"
I had totally forgotten.  Then I felt so trapped.
But I am telling myself that must not complain.  I am 57.  I have already seen quite a bit.  I have only been on dialysis for 19 months.  What about those who have had renal faillure since they were kids....
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Duane
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« Reply #43 on: April 20, 2007, 01:42:42 AM »

Energy, what happened to it? I get tired after fixing and eating breakfast, sometimes i even take a break after taking a break :banghead;

I went to the shopping mall after dialysis wednesday, to walk around and buy a few things and within 15 min. i felt exhausted and had to eat a sandwich and drink some water. felt a little better after the sandwich but still cut my walk short and went back home to lay down for a while.

Those of you that work and stay busy with family and friends, where does your energy come from? ???
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1 Corinthians 9:24  In a race, everyone runs but only one person gets first prize. So run your race to win.
goofynina
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« Reply #44 on: April 20, 2007, 05:54:50 PM »


But I am telling myself that must not complain. .  I have already seen quite a bit.  I have only been on dialysis for 19 months.  What about those who have had renal faillure since they were kids....

It is this kind of thinking that helps me keep going Bajanne,  I am very thankful for the years i had without this disease, so that's a big AAAAAMEN Sister ;)
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....and i think to myself, what a wonderful world....

www.kidneyoogle.com
kitkatz
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« Reply #45 on: April 22, 2007, 10:02:36 PM »

I have found I am less apt to take shit from other people.  I have very little patience for trite stuff.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
paris
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« Reply #46 on: April 23, 2007, 04:15:57 PM »

I agree Kitkatz - I find I just don't have time for the petty stuff. I am sorry about your stress with work.  Unless one works with children, it is hard to understand the amout of energy - physical and emotional - that you put into your students.  And then other teachers kind of look at you like you aren't performing at the highest level.  I can't keep up with the other teachers, but still feel I am capable at my job. Never thought I would think about not working - but this disease has a mind of it's own.  I had to step out of my class the other day and found myself in the music room in tears. Can't stand how much life keeps changing and I just want it to stay the same.  My heart hurts for you and your students that I know adore you.
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Joe Paul
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« Reply #47 on: April 24, 2007, 11:58:39 AM »

Great replies so far. 1 year for me now and little has changed, just keep on keeping on.
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Angels are with us, but don't take GOD for granted
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kitkatz
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« Reply #48 on: April 24, 2007, 05:18:50 PM »

My sense of humor is back. It had taken abreak for a few weeks and now it is back. 
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
goofynina
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« Reply #49 on: April 24, 2007, 09:51:41 PM »

My sense of humor is back. It had taken abreak for a few weeks and now it is back. 

...and Thank God for that cuz girrrrrrrl, you kill me  :rofl;   :urcrazy;   :P
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....and i think to myself, what a wonderful world....

www.kidneyoogle.com
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