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lou
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« on: January 03, 2010, 09:13:41 AM »

I really feel like I cant cope with much more today.  :( Since I started the dreaded d I have tried so hard to be positive but so many things unrelated to dialysis seem to be going wrong at the moment as well and I honestly feel like I cant cope with much more crap. I am soooo tied of always thinking/talking about/doing dialysis and lying in bed every night wishing the phone would ring and I will get that call, I feel like its never gonna happen. I never thought I would end up on dialysis and cant believe its been 3 months already. I just want my old life back like I had before I knew about any of this kidney rubbish and I feel so depressed cos I know thats never going to happen.
I don't really know what I except anyone to say to this, maybe just pull myself together, I know I'm feeling really down now but I genuinely don't think I'm actually depressed. I cant take any more pills! ;)

Im sorry for this moan I just feel so awful today and thought this was a good place to write how I feel. x x x
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dwcrawford
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« Reply #1 on: January 03, 2010, 09:21:40 AM »

All I can say is that the feelings you are having are not so unusual and certainly not abnormal.  When starting dialysis the other problems that always came up before just seem to be more daunting.  I have no advise but perhaps a little encouragement in that three months is not really enough time to accustom yourself with the D routine.  I agree you are probably not depressed but experiencing a normal reaction to the abrupt changes in your life.  Well, I do have a little advise:  Hang in and give it a little more time.  I would expect you may still be somewhat exhausted after treatment.  That tends to get better (mostly).  Dialysis is not for sissies for sure.
« Last Edit: January 03, 2010, 09:41:36 AM by dwcrawford » Logged

Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
glitter
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« Reply #2 on: January 03, 2010, 09:31:06 AM »

Hi there,
 you have come to the right place to vent your feelings for sure! I was only a caregiver, but I saw how hard it was for my Dear Husband to cope with starting D, plus all the other nasties life throws at you at the same time. He did use an antidepressant, an it did seem to help a bit- but he also used scream therapy- he would go outside every now and then and do a loud manly scream or two- or chop wood- or hit golfballs into the woods. Anything to ease some frustration with life. It may not work for you- but it might.
  Dialysis became our life too- and it does fatigue the mind-day in/day-out. I dont know how you would ease that- I will be hoping for you to get that call as soon as possible so you can get your transplant- it seems to happen pretty often on this board, JUST keep posting as much as you want when you feel sad.

Love to you,
Julie
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Jack A Adams July 2, 1957--Feb. 28, 2009
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cdwbrooklyn
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« Reply #3 on: January 03, 2010, 09:37:54 AM »

You have every right to feel depressed and angry.  You did not expect this to happen but that's what life deal you for this season.   I've felt the same way when I first got on dialysis.   I was hoping that someone will pinch me and I will wake up from a nightmare but I learned how to take it one day at a time.  Try not to think about dialysis until you are actually there getting your treatment.   It usually helps when you are active doing things in your life.  Maybe visiting a friend, looking at a movie that makes you laugh, going out to eat with your hubbies, working, etc.   It helps so you don't focus on dialysis, which can make you feel depressed.

I've been on dialysis going on 11 years. I've learned not to focus on it just do it and continue to live my life.  I keep myself very busy doing a lot of activities.

Your case is not my case so don't think you will be on dialysis as long as I am.  If you can keep yourself busy whereas you are not thinking about dialysis, you will survive just fine and before you know it, the phone will ring for your kidney.   Just take it one day at a time and enjoy life by doing and going to activities.   

Hope this helps! ::)
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Dailysis patient for since 1999 and still kicking it strong.  I was called for a transplant but could not get it due to damage veins from extremely high blood pressure.  Have it under control now, on NxStage System but will receive dailysis for the rest of my life.  Does life sucks because of this.  ABOLUTELY NOT!  Life is what you make it good, bad, sick, or healthy.  Praise God I'm still functioning as a normal person just have to take extra steps.
jbeany
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« Reply #4 on: January 03, 2010, 09:47:44 AM »

At 3 months in, you are still mourning the loss of "normal".  We've all been there.  No matter how positive you can keep your attitude - it sucks, it sucks, it sucks.  Vent away - it helps, and we understand all too well, so we're good listeners.
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« Reply #5 on: January 03, 2010, 11:08:09 AM »

 :grouphug; Dear lou, I hope things improve.  :bestwishes;
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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.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
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 #6 on: January 03, 2010, 11:13:34 AM »

I know how everyday problems seem worse than ever when you have to deal with dialysis. I have had alot of serious things happen to me over the last year and dealing with dialysis hasnt made anything easier. I was so focused on me that I damned near lost my wife to suicide because I couldnt see her pain and help her. It worked out okay and we are doing fine now, but like everyone says, take one day at a time and deal with what is in front of you instead of trying to deal with everything at once. I hope this will help you some.
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monrein
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« Reply #7 on: January 03, 2010, 12:57:15 PM »

I too have been where you are lou, as have many, if not all, of us.  I don't find it possible to be "positive" all of the time and would find it odd if anyone, let alone anyone dealing with a chronic illness, can be without sadness, regret for what once was or indeed anger.  Three months is early days, sad to say, and you will likely find this roller coaster ride to be fraught with ups and downs...all roller coaster rides are.  This is a place to have the downs acknowledged and the ups celebrated so come any time you want, with whatever feelings you might be having and someone will be able to relate.
I send you a big hug today and hope that tomorrow will be a little brighter.   :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
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« Reply #8 on: January 03, 2010, 01:09:51 PM »

Lou, you are in mourning for the loss of your formally normal life.

And just like any time of mourning, you need time to heal. It is normal to feel this loss and be angry and rail against it. Be kind to yourself and give yourself time to allow your new life to become real for you.

This is the best place to come and voice these feelings because this is a community of folks who really, really understand.

 :grouphug;

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
RichardMEL
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« Reply #9 on: January 03, 2010, 06:45:50 PM »

all good posts. I want to single out cdwbroklyn's response though.. for me activity away from dialysis is a key thing that helps when I start to wonder when that bloody call will come. I have my job that keeps me occupied, my cat, and hassling the lovelies on IHD amongst other things that keep my mind occupied on things that are NOT to do with my disease or dialysis. I like to walk in the park on my days off and I can find that refreshing too. At 3 months in you're still adjusting to this new phase of life, missing the old, and trying to get into a routine that works for you and helps you handle things. I find it really helps to try to not focus on dialysis when I'm not there. Sure, when it coems time for food I have to consider stuff like the diet, and when I want a big drink I have to remind myself to take it easy, but I think of those things more as part of life, not "I have to do this for dialysis" and often it almost happens in the background because I'm so used to it that it isn't a seperate thought anymore - it just is. Just like dialysis is. Oddly enough if/when I ever get that call I will probably MISS treatments and I could see myself thinking on a Saturday afternoon not "I'm free to do stuff" but "Shouldn't I be at dialysis?" - can't wait for the day to have THAT particular dilemma!

What you're feeling is totally natural and not something to be ashamed or upset about. It's a big change to deal with and well all I can say is hang in there. That call COULD come tomorrow. One thing that's certain is the longer you do D, the closer you are to that call! I've been going 3.5 years now, and only sometimes do I lie awake thinking about it or staring at the phone hoping for it to ring (I imagine I will totally freak out when it happens  :rofl;). I just plot away quietly the things I want to do when I can and until then bide my time...

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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!
Hanify
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« Reply #10 on: January 03, 2010, 06:50:15 PM »

Everyone has said what I wanted to say - so ditto.  It's just like mourning a death - and you wouldn't expect someone to be over it all within three months would you?  Somehow you need to find a way to stop thinking about the transplant - I have no idea how. 
And by the way ... pull yourself together, get over it, there are others worse off, things will improve, starving children in Africa, .... um ... trying to think of more platitudes that don't help...
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
kellyt
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« Reply #11 on: January 03, 2010, 06:55:18 PM »

 :cuddle;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
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« Reply #12 on: January 03, 2010, 07:02:48 PM »

Remember there are those of us here who are willing to help you and give you some advice.  I have been on dialysis for eleven years. I have mood swings every now and then and the people on IHD.com are great!


I can relate to your feelings. There are times when I look in a mirror and cannot face it all.  Then I hear from a friend or family member and my angels thwack me with a two by four, and I get up and carry onward.
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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
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« Reply #13 on: January 03, 2010, 07:39:29 PM »

Thinking of your struggle, and hoping that this post finds you feeling better.

And a couple of ideas that help me.

"Relish what you have, rather than dwelling upon what you have lost." Immediately followed by time with youngsters, a dog, or trimming my roses has helped me allot.

"D is not for sissies." I know that it has been taken from this thread but that is the best thing that I have heard in a long time.
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RightSide
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« Reply #14 on: January 03, 2010, 07:57:13 PM »

Lou,
I agree with what most of the folks here have been saying.

But I want to add one more point:

When I started dialysis, even my brain had been clouded by all the toxins that my sick kidneys were no longer filtering out.  Plus, the anemia and fatigue and dizziness that were caused by the kidney failure were making me feel even more listless and heartsick.  But once my treatments and meds started to really kick in, I started feeling better physically--and also mentally.  The fact that my fistula works now, and I can take showers whenever I want, is also a big boost to my outlook on life.

For you, three months isn't very much time.  Consider that the toxins in your body have poisoned both your body and mind.  Just take one day at a time and be patient.  Let's see if you feel better emotionally, after you feel better physically--as I did.
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Maker
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« Reply #15 on: January 03, 2010, 09:40:11 PM »

Oh Lou... Ditto to everything you said!  I feel like I could have written your post myself  :'( 

Know that you are not alone in how you feel.  I am also mourning the loss of my former life and every day think there's no way I can deal with one more thing and there's no way things could get worse, then they do.  This is a very very dark time for me too.  Yet somehow I survive by God's grace, and so will you. 

Hang in there girl, you are loved!!
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- Lori

33 years old
Diagnosed February 2007
Started In-Center Hemo October 2009
Trying to qualify for a living donor transplant

"I can do all things through Christ who strengthens me"  Philippians 4:13
lou
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« Reply #16 on: January 04, 2010, 06:44:16 AM »

Thank you so much for all your lovely and honest replies. It really does help to here from you all and I know I am not alone in coping with this crap disease. Well I just got home from work and am definitely feeling a little better today. I guess its just about taking one day at a time (hard when you've always been a big planner!).

Am going to take all this advice, especially about doing things away from dialysis. I started learning the piano and then stopped when the dreaded d kicked in. I also want to learn French as me and my boyfriend want to live there for a year one day. I seem to have lost all my motivation and excitement for doing new things so I'm really going to try and get that back.

Thanks again to all of you, sending everyone a big hug x x x
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jennyc
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« Reply #17 on: January 08, 2010, 05:19:17 AM »

Moan away!!!! Even after 7 years of being happy bubbly bright and positive for those around i still get down but....... it is human nature to overcome adversity so we toil on. Like Richard said, find something away from D, something that has no relation to it that you enjoy, it will enable you to stop thinking about it for a while. For me it's my hub and son, motorbike's, cars (we love our muscle cars), music and work (even though it's from home) and weddings!

And Planning is good! Plan a holiday, plan something..... planning for the future is our way of cementing ourselves in our own little world.  :cuddle;
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2003 January - acute renal failure
        March/April - Started PD
2009 October - PD failing, First fistula put in.

Cadaveric Transplant 27/1/2010
dwcrawford
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Getting the heck out of town.

« Reply #18 on: January 08, 2010, 06:38:22 AM »

OH LOU, Juat read your Jan 4 post.  You really gave me a couple of good ideas.  I want some vollunteer work but want it to be relative to my current situation.

Hey... start your piano lessons back.  Please.  You have plenty of time while on dialysis to study your French.  I'm assuming you are interested in conversational French.  Could you start a video chat will some one else interested.  Interesting.  A dialysis video chat  in French.  Hey, I know a little.  I might be interested.

I thinking a video chat teaching piano... or finding a stuio close to the center ...  or getting Davita to provide a piano and a stuio room???  It could happen.  Thank you. 

You are definitely on the right track.  I want to hear from you 3 months from now to see how you have progressed.  Well unless you want to figure out a way to video chat in French from dialysis... (a little far fetch?). 
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
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This will be me...... Next spring.... I earned it.

« Reply #19 on: January 08, 2010, 10:33:49 AM »




"Relish what you have, rather than dwelling upon what you have lost." Immediately followed by time with youngsters, a dog, or trimming my roses has helped me allot.



    this is very well said..... This thread help me as well.....    I need to remember this.....   I too have only been doing D for a few months..... I am going thru the same thing   right now....   I know this spring will be really hard.....   Everyone has good advice......     its help all of us.......
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #20 on: January 08, 2010, 04:00:16 PM »

I'm taking French classes at night school too so I'd be keen on a French Thread.  Bajanne could rule it - and fix our attempts.  And Monrein - you're  a French speaker too aren't you?
What are the words for Thread and post in French???
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
lou
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« Reply #21 on: January 09, 2010, 02:46:29 AM »


dwcrawford and hanify - love the idea of dialysis french lessons!!

Will start thinking of a good way to do it. Any ideas how we could start? What a great, positive thing to do while on the dreaded d!

x x 
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« Reply #22 on: January 09, 2010, 03:51:11 AM »

Four years of French in high school and another four years of it in college might make me eligible to participate, too.  Of course, it's been 25 years since I graduated from college, but maybe I remember a little.  And, yes, Dan, if you're wondering...I did learn some French cuss words, too.  :rofl;  :rofl;  :rofl;  :rofl;   :rofl;  :rofl;  :rofl;
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monrein
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Might as well smile

« Reply #23 on: January 09, 2010, 05:42:42 AM »

Post would probably be...un commentaire.   Thread might be "conversation" (feminine) or "fil" (masc.).   Jargon like this is tricky.    A cool idea though is to set your facebook to french, only the instructions will be in french, not everything that is posted.  Accents are important so that's a consideration.

Une autre bonne idée, c'est de regarder la télé en français, surtout les émissions d'enfants, les dessins animés par example.
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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
dwcrawford
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Getting the heck out of town.

« Reply #24 on: January 09, 2010, 10:54:35 AM »

had four years in high school and two in college but "I forgot"

was good at speaking and did some roles in French clubs plays -- also required for music -- but to tell the truth half the time didn't know what I was saying... memorization... but I'm in.

Very Cheap way to do it is get Yahoo Ids and grap one of their rarelyl used chatroom (no porn Hanify).  It has video and voice...

Dialysis 11 to 3 CST mwf.... great way to spend some time.
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
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