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Author Topic: you're all probably going to get mad at me....  (Read 11561 times)
poohkari
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Wade and I.

« on: October 07, 2007, 12:04:51 AM »

we are over it.
« Last Edit: October 07, 2007, 12:21:41 AM by poohkari » Logged

Girlfriend of Wade, on dialysis since 5/11/07 and NxStage since 8/20/07. We're hoping for a transplant as soon as his "FGP" is gone!
aharris2
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« Reply #1 on: October 07, 2007, 12:35:37 AM »

 :urcrazy; more info please :thx;
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« Reply #2 on: October 07, 2007, 05:40:21 AM »

Come on Poogirl.. fill us in so our minds don't wander..we are like family here you can share the good or the ugly with us. Everyone needs a break hun... talk, we will listen.
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angela515
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i am awesome.

« Reply #3 on: October 07, 2007, 08:25:54 AM »

 ??? ???
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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
George Jung
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« Reply #4 on: October 07, 2007, 09:37:01 AM »

Kari - You might be surprised about the feedback from the members here.  They are a great bunch of people, use them to lean on if you need to, they will not fail you.  I hope you will see the true value of this site in your time of need. 

Thinking of you, George
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #5 on: October 07, 2007, 10:48:54 AM »

we are over it.


Kari - what's up?  ???
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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
goofynina
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He is the love of my life......

« Reply #6 on: October 07, 2007, 12:16:57 PM »

Poohkari, talk to us girlfriend, vent, rant, let it out, we are here for you  :grouphug;
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....and i think to myself, what a wonderful world....

www.kidneyoogle.com
poohkari
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Wade and I.

« Reply #7 on: October 07, 2007, 03:56:11 PM »

Well, i'm very glad I made a revision to this post. Originally it was a big vent - which felt good to get out, but wasn't appropriate. Lots of F bombs. 

I guess it's safe to say that Wade and I are both pretty angry about him getting sick. If anyone's done any psychology studying you know that theres this thing called the Kubler-Ross theory. Basically, with any tragedy, people will go through a distinct set of stages - anger being one of them. So its normal.

However, and I think the only person (so far) that would even understand the way we're feel on this board is Stu. Everyone here, it seems, had some kind of illness that they knew about and knew that kidney failure would be inevitable. We had no warning, no time to get used to things (if ever you do), no time to enjoy a normal life before it changed. Wade went to the hospital and boom! on dialysis. It's great that there are young people here - because i'd think we were the only ones dealing with this. I'm sick of having people tell me about granparents on dialysis and stuff.

So, yeah, we're mad as hell. We're sick of being broke, we're sick of being social outcasts, and we're pissed off that he got sick with no warning. Thanks for all your support. We appreciate it.
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Girlfriend of Wade, on dialysis since 5/11/07 and NxStage since 8/20/07. We're hoping for a transplant as soon as his "FGP" is gone!
okarol
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« Reply #8 on: October 07, 2007, 03:59:56 PM »

It sucks - no doubt.
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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
goofynina
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He is the love of my life......

« Reply #9 on: October 07, 2007, 04:06:10 PM »

Poohkari, i used to be angry as well, i was ill but didnt realize what was wrong until i was rushed to the hospital and then BAM they put this thing in my chest and i am hooked to a machine, and there i stood for 30 days, not knowing what the f*ck was going on, in alot of pain and on pain meds, people telling me stories of things i was doing or saying when they would go visit me and i have no clue of what i did or said, it was a crazy time, but you get used to the idea.  It takes time, it has been 4 years for me and i have no promise of a transplant so i am looking at doing this shit the rest of my life, but oh well, i aint gonna let it stop ME, oh hell no, i am gonna do as much as i possibly can in Lord knows how much time i have left to do it in, lol, but dammit, as long as i am happy doing it :P ;)    
Also, think of all the babies and little kids that have to do this, that has never had a chance to live a normal life, to have fun and to chill with friends with a few beers, some will never be able to experience that, be grateful for the time you had and just look forward to the future, at least you have a transplant to look forward to, there is an end to this someday for you, that is promising my friend, just have a little patience and remember, life is too damn short, be happy ok.  Good luck to you and Wade, and please keep us posted, as you can tell how worried we all got with your first post.  WE CARE...  Much hugs and prayers and lots of LOVE to you both always....  :cuddle;
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....and i think to myself, what a wonderful world....

www.kidneyoogle.com
Romona
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« Reply #10 on: October 07, 2007, 04:15:33 PM »

No one is going to get mad at you. You can be mad and vent. And we may not understand everything you are going through. Everyone's illnesses and experiences vary.


But we do  all CARE about you and Wade.  :grouphug;
« Last Edit: October 07, 2007, 04:21:43 PM by Romona » Logged
brenda
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« Reply #11 on: October 07, 2007, 04:37:27 PM »

You have a total right to be mad. Yes it sucks! I found out when I was 16 I had a kidney "problem" was told not to worry if anything happened it wouldn't be until I was well into old age. Well not true, I had just turned 30, it was Christmas time and I  had a head ache that would not quit. I went to my GP to get something to get rid of the headache. Three days later the Neph office was on the phone, "we need to see you and fast". Mad? I was furious, I had just got married, my kids were half grown, I had a great job, a new house and an outlook that told me it was all smooth sailing from here on out! I refused to go in until after Christmas, drank rum laced banana slush all week. Walked into the Neph office, saw all these terrible sick looking people some with these things sticking out of their necks. I was scared to death! They wanted me on dialysis right away but I put it off until the following June! Quit my job, quit my new husband, quit my kids, quit life for 2 months, couldn't get off the couch. A little depressed. Still 14 years later I'm angry, that's part of what keeps me going, unfortunately it has also become a part of my personality that I have to remind myself I really don't like and need to keep a lid on. My point is I guess, I don't believe it matters if you have warning or not it's all in the way we handle it ourselves. So really it's ok to be mad, be mad as hell, but just don't dwell on it, sooner or later you gotta kick yourselves in the ass and get on with life cause life isn't going to wait for you.
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Life is what happens while your making other plans.
angela515
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i am awesome.

« Reply #12 on: October 07, 2007, 04:40:22 PM »

 :grouphug; :grouphug; It's ok to be mad, and it's expected. I hope you can get through it, because it's done happened and now you have no choice but to deal with it Good luck sweety.  :cuddle;
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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
George Jung
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« Reply #13 on: October 07, 2007, 04:47:22 PM »


 Everyone here, it seems, had some kind of illness that they knew about and knew that kidney failure would be inevitable. We had no warning, no time to get used to things (if ever you do), no time to enjoy a normal life before it changed. Wade went to the hospital and boom! on dialysis. It's great that there are young people here - because I'd think we were the only ones dealing with this. I'm sick of having people tell me about granparents on dialysis and stuff.

So, yeah, we're mad as hell. We're sick of being broke, we're sick of being social outcasts, and we're pissed off that he got sick with no warning. Thanks for all your support. We appreciate it.

Kari, I didn't have a warning.  One day everything was roses (except for a headache I ignored) and the next day I had a seizure at work that almost took my life.  I woke up that morning with blurred vision but I only live four blocks from work so I drove in half blind (that's how dedicated I am) and thank goodness I did or I would have had the seizure at home and died right then and there.  There was no 50% function then 40 and 30 and then time for dialysis for me, it was face to face with death and waking up in the ICU with an antenna coming out of my neck!  You wan to talk about being pissed the p*ck off, we should get together.  I am almost a year into this deal and am just now beginning to be tested to get on the "list".  I had no prior plans to continue on, that's how pissed I was.  I have struggled this entire time to get to where I am today.  I have been diagnosed as severely depressed.  Point is that you two are NOT alone.  True it seems that many others have a warning but I sometimes wonder if that is any better.  I have learned to be concerned about myself rather than to base my life on the comparison of others.  p*ck the money, the big house the new car all of that is nothing if you cannot find the basic goodness of life.  I have been reading/studying about Buddism since before my near death experience and I encourage anyone who struggles to find happiness to do the same.  It is not so much a religion as it is just a way of thinking about life.  I have been able to use my reading to see things in a different light.  The western world is not set up to bring happiness, it is full of greed and bad programing of what is important.  Not that money isn't important but if a big screen TV is going to trouble us further (the need of cable service which I cant afford) then it is not really good for us and it seems that everyone has one and we might believe that we "need" one too....then we can't afford it and we feel of a lower class or something......NOT TRUE.  Whether you believe it or not these possession are not good for you.  Anyway, before I sound like a nut case I want you and Wade to know that you are not alone.  

Read the speech I posted from the Dalai Lama in Central Park.

  http://ihatedialysis.com/forum/index.php?topic=5109.0

Also a great read that I am in the middle of right now which I highly recommend is called SHAMBHALA - The Sacred Path of the Warrior  by Chogyam Trungpa
« Last Edit: October 08, 2007, 05:01:06 AM by George Jung » Logged
kitkatz
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« Reply #14 on: October 07, 2007, 06:27:27 PM »

No warning here either. One day at work,same night in the ER then into ICU and on dilaysis. Sucks, righteously!
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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 #15 on: October 07, 2007, 06:44:46 PM »

We all hate that you are both going thru this.  Anger and depression are all part of the deal.  Many on here have had kidney failure since they were children. Nothing is fair. Our lives are forever changed--relationships, money situations, everything.  I am always saying that I would gladly take all the pain and suffering if it meant a younger person could have more years. Then my kids look at me and remind me how much they want me here. They tell me I have worked so hard for them and this should be the time I am enjoying freedom. So, I think no matter what stage of life we are in----we all want to live just one more day.  Hang in there--try to find joy in small things.  Somedays are harder than others.  Take some happiness in the fact that you two have found each other and hold on tight.  And always come here. This is the only place I can go to that will understand and not judge.  We are always here and we care about you and Wade. :grouphug;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Laurie
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May 13, 2008

« Reply #16 on: October 07, 2007, 06:59:49 PM »

Kari, I had no warning either. I went in the hospital to have a baby and woke up 3 weeks later in ICU to find out I had a hysterectomy and my kidneys had failed. I was on dialysis for 3 weeks and didn't even know it. I was completely shocked. I was never really angry, because I know that I am very lucky to be alive.

Hang in there, things will get better  :grouphug;
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March 7, 2001 - Complications after C-section caused kidney failure
March 2001 - December 2001 - Hemo Dialysis
December 2001 - Kidney function improved dialysis no longer necessary
October 2006 - Kidney function started to decline
May 9, 2007 - Listed at Baylor Dallas and Fort Worth
October 12, 2007 - Started PD
May 13, 2008 - Kidney Transplant from a deceased donor
glitter
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« Reply #17 on: October 07, 2007, 07:43:34 PM »

my hubby had no real warning either- he got squished by heavy equipment- found cancer- had surgery and ended up on dialysis- we lost our business our life and our friends- we are broke, dependant on family, so your not alone- we have had some really down weeks-its been 1 1/2 years- we are dealing....somedays you just have to have tears for what you have lost- I guess the trick is finding a new path- we are looking for it now- but it does still suck- so your not alone and if you want to vent and let a few f-bombs fly- well go ahead. sometimes it helps to know you are not the only miserable one saying' what happened to MY LIFE!!! so your rant could help someone else too!! I think it may get better in time- other people  come to terms eventually- that is what I hope we do too. hang in there  :grouphug;
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Adam_W
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Me with Baron von Fresenius

« Reply #18 on: October 07, 2007, 08:15:24 PM »

Count me in on the "no warning" part. I got a colon infection that landed me in the ER where I found out my kidneys were shutting down, then two days later I came very close to dying from ungodly high blood pressure (220/140), and ended up spending three days in the ICU, and when I left I had these insanely painful tubes sticking out of my chest and I was being rolled down the hall to the acute dialysis unit every day for the next week and a half until I finally left the hospital. A week and a half before all this started, I was riding my bicycle across Indianapolis. Talk about being pissed off and depressed. We love you both, and we are ALWAYS here for you. We are all in this together, and we are all like family here. Feel free to vent and yell and cuss all you want.  :grouphug; :cuddle;

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"
Stu
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Oooooooh yeah!

« Reply #19 on: October 07, 2007, 09:42:30 PM »

I'd just like to make the point that with all that Poohkari has been going through, she found the time to private message me a couple of days ago, to make sure I was OK as I hadn't been around here for a while - now that's a person with that something special!

 :thx;.
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47 Fluid Control Suggestions for Dialysis Patients
Haemo 3 x a week, Ico bags overnight
Joker, smoker, midnight toker....
Tweet me at @AngryDXGuy if you dare
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« Reply #20 on: October 08, 2007, 03:30:31 AM »

Hi, Carrie,

I know I have not posted much here yet, but had to reply to this.  My husband Les lost kidney function with no warning, either.
And we have not ever gotten a clear explanation as to how it happened.  He was fine, we were "normal" people, paying our bills,
etc - then in Feb. 06 Drs. said he needed triple by pass on heart.  On April 1 he had to go on emergency Dialysis at hospital - no
bloodwork had been done on him for at least one month even tho I was constantly telling Dr. he is acting very strange, had no
energy, had severe diahrrea, etc.
The year 2006 changed our lives forever - I had a  breakdown, my daughter no longer talks to us, we had to sell our home,
etc.
So, please don't feel that you are alone.  This is a horrible sickness, yes, but there are many wonderful people here to "talk" to.
My prayers are with you

Anne and Les :angel;
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babi68
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« Reply #21 on: October 08, 2007, 04:43:28 PM »

 :grouphug; :grouphug; :grouphug; :grouphug; :cuddle; Liz
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MyssAnne
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« Reply #22 on: October 08, 2007, 04:51:29 PM »

Pooh, I hope you find time and energy to vent here. We really do care for you and Wade. We're here for you, any time!   :grouphug;
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Sunny
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Sunny

« Reply #23 on: October 08, 2007, 05:53:12 PM »

I know a little about what you have been through. I was diagnosed with GoodPasture's Disease in 2001 (I was 41), which was sudden and came from nowhere. Healthy one week, and within 3 weeks-- kidney failure. I'm functioning on 30% or less of my kidneys so I don't know what dialysis is about, like you. But I know how devastating things can be when you have to wake up to kidney disease issues. Hang in there and don't give up. You have each other and this wonderful web site. Sometimes there are setbacks, ride it out. 
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
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« Reply #24 on: October 08, 2007, 06:39:26 PM »

 :cuddle;  Kari - So sorry.  I know how you feel.  It really sucks to see the love of your life go though this.  Rob's kidney disease is due to his diabetes, so we knew that he would eventually have kidney failure, however, it came about 10 years too early.

This disease sucks, you feel helpless seeing your love go through this.  You feel so tired being their caretaker/loved one.  You feel like a nurse mose of the time, the housekeeper, bill keeper, cook, etc.  I know!  You feel like your world is slipping away and theirs nothing you can do.  Plus, you see your love and you just want to take this away from them.  Many nights of crying and worrying.  Wondering if they will be there to grow old with you.

It does get easier though.  I cried so much at the beginning.  Family had no idea what we were going through, most of them still don't.  Get as much knowledge as you can.  Talk to as many people as you can.  Talk to your friends and family, lean on them.  Take a brake from it all and just do something for you.

The one thing I did and still do is don't treat Rob like he is sick.  I treat him the same, we find time to joke around and relieve stress.  We didn't put our life on hold, we still did/do as much as we possibly can.  The important thing was Rob still went to work.  This was one of the only ways he could keep his sanity.

You guys are so stressed, I know.  It sucks!  Get mad, hit a pillow.  It's ok.  But know that what he is going through is so much worse.  You guys will get through this. 

Big hugs!  :cuddle; :grouphug;
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Wife to Rob who is currently doing Nx Stage Home Hemo Dialysis.

11/17/09 After 4 years on dialysis, Rob received a kidney from our George.  Kidney is working great!  YEAH!!!!
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